Arvioiden mukaan vähintään 0,5 - 1 % väestöstämme kärsii eriasteisista kehityksellisistä ja hankituista kieli- ja kommunikaatiohäiriöistä. Osalla heistä häiriö on lievä, mutta aiheuttaa kuitenkin haittaa siinä määrin, ettei heidän puheensa riitä täyttämään kaikkia kommunikoinnin tehtäviä. Osalla häiriö on vakavampi, jolloin puhe voi olla hyvin niukkaa tai puuttua kokonaan.
Kieli- ja kommunikaatiohäiriöiden haittaa voidaan lieventää tai poistaa käyttämällä puhetta tukevia ja korvaavia kommunikointikeinoja. Näitä voidaan ryhmitellä eri tavalla. Suomessa tukevat ja korvaavat kommunikointikeinot jaetaan usein avusteisiin ja ei-avusteisiin keinoihin. Jako kuvastaa sitä, miten kommunikoija tuottaa ilmaisussaan käyttämänsä merkit.
Avusteiseen kommunikointiin kuuluvat kaikki sellaiset kommunikoinnin muodot, joissa kielellinen ilmaisu on fyysisesti olemassa käyttäjästä erillään. Kommunikoija siis valitsee merkin, jonka avulla kommunikoi. Merkit voivat olla esineitä, kuvia tai symboleja (blisskieli, kirjaimet, sanat, lauseet). Ei-avusteista kommunikointia on sellainen, jossa henkilö tuottaa kielelliset ilmaisut itse. Tähän ryhmään kuuluvat ele- ja viittomiskommunikointi sekä puhe ja sen oheisviestinä.
Fasilitointi (Facilitated Communication) ymmärretään Suomessa yleisesti yhdeksi puhetta korvaavaksi kommunikointikeinoksi. Käsitys on kuitenkin virheellinen, sillä fasilitointi ei ole sinällään keino tuottaa ilmaisua vaan pikemminkin tekniikka, jonka avulla harjoitellaan avusteisten kommunikointikeinojen käyttöä. Täsmällisempää onkin puhua tuetusta kommunikoinnin harjoittelutekniikasta.
Tekniikan avulla henkilö, jonka puheentuotto on häiriintynyttä tai sitä ei ole ollenkaan, harjoittelee kuvien, piktogrammien, kirjainten tai muiden avusteisten kommunikointikeinojen avulla kommunikointia aluksi tuettuna ja myöhemmin mahdollisimman itsenäisesti.
Avustavan henkilön tuki tarkoittaa tekniikan käytön alkuvaiheessa sitä, että avustaja vakauttaa kommunikoivan henkilön kättä kämmenen alta. Tukea pyritään vähentämään alusta asti asteittain siten, että esimerkiksi ranteen tukemisesta siirrytään ensin kyynärpään sitten olkapään tukemiseen ja lopulta merkit valitaan ilman tukea. Käytännössä avustaja vakauttaa kommunikoivan henkilön kättä vastustamalla hänen merkinvalintaliikettäään omalla kädellään. Avustaja ei siis missään tapauksessa ohjaa kommunikoijan kättä merkin valinnan aikana. Merkin valinnan jälkeen avustaja voi vetää kommunikoijan käden kauemmaksi kommunikointivälineestä kuten näppäimistöstä tai kirjaimista uuden valinnan helpottamiseksi.
Käytettävä kommunikointikeino valitaan kommunikoivan henkilön tarpeiden mukaan. Vaikkei tekniikan vaikutusmekanismeja vielä tarkalleen tiedetä, se näyttäisi kuntouttavan kommunikaatiohäiriöistä kärsivien apraksia-tyyppisiä neuromotorisia ongelmia. Tuettu kommunikointi on varsin hyvin tunnettu tekniikka eri puolilla maatamme ja sitä käyttävät eri ikäiset henkilöt kodeissa, kouluissa ja vammaisten asumis- ja päivätoimintayksiköissä.
Tuettu kommunikointi tunnetaan kansainvälisesti nimillä Facilitated Communication USA:ssa ja Facilitated Communication Training Australiassa. Menetelmän kehittäjä on australialainen DEAL-kommunikaatiokeskuksen johtaja Rosemary Crossley. Hän työskenteli 1970-luvulla kehitysvammaislaitoksessa, jossa hän kokeili tekniikkaa aluksi CP-vammaisen tytön kanssa, mutta totesi sen myöhemmin sopivan myös monille muille vammaisryhmille kuten autisteille ja kehitysvammaisille, joille puheentuottaminen oli vaikeaa tai mahdotonta. Crossleyn lisäksi tekniikka oivallettiin samoihin aikoihin yksittäisissä tapauksissa myös muualla maailmassa (USA, Tanska, Ruotsi).
Laajemmin kansainväliseen tietoisuuteen tekniikka tuli Yhdysvaltalaisen erityispedagogiikan professorin, Douglas Biklenin kiinnostuttua asiasta. Hän perusti Syracusen yliopiston yhteyteen Facilitated Communication -instituutin ja aloitti 1990-luvun alussa tutkimusprojektin, jonka avulla pyrittiin saamaan uutta tietoa tuetusta kommunikoinnista. Myös Suomeen menetelmä rantautui samoihin aikoihin. Autismi- ja Aspergerliitto järjesti 1990-luvulla useita valtakunnallisia koulutustilaisuuksia, joissa asiantuntijoina olivat mm. Elizabeth Houser, Rosemary Crossley ja Douglas Biklen ja allekirjoittanut.
Tutustuin itse tuettuun kommunikointiin vuosina 1989-1993 Biklenin johdolla Syracusen yliopistossa väitöskirjaani tehdessäni. Tein väitöskirjaa suomalaisesta erityisopetusjärjestelmästä, mutta olin samanaikaisesti mukana tuetun kommunikoinnin tutkimusryhmässä kolmen vuoden ajan ja osallistuin instituutin järjestämiin workshopeihin kouluttajana.
Tuettu kommunikointi on herättänyt kiivasta keskustelua tutkijoiden keskuudessa jo vuodesta 1970 lähtien. Viimeisen kymmenen vuoden aikana aiheesta on kirjoitettu yli sata tieteellistä artikkelia. Tieteellinen keskustelu kulminoituu kysymykseen, kuka oikeastaan suorittaa merkin valinnan, kommunikoiva henkilö vai avustaja. Tutkimusevidenssiä siitä, ettei menetelmä ole tieteellisesti validi, löytyy runsaasti.
Lukuisissa koeasetelmilla toteutetuissa tutkimuksissa tulos on ollut se, ettei juuri kukaan tuetusti kommunikoiva henkilö ole pystynyt läpäisemään viestinvälitystehtävää kokeen aikana. Myös avustavan henkilön vaikutusta lopputulokseen on joskus pystytty osoittamaan. Vankasti koeasetelmalla tehtyihin tutkimukseen luottavat alan tutkijat ovatkin varsin yksimielisiä siitä, ettei tuetulla kommunikoinnilla ole mitään tieteellistä perustaa ja ettei se sen vuoksi ole validi ja suositeltava tekniikka käytettäväksi.
Tutkijat, jotka ovat tutkineet tuettua kommunikointia luonnollisissa olosuhteissa tai harjaannuttaneet kommunikoivia henkilöitä osallistumaan testitilanteisiin, ovat kuitenkin pystyneet näyttämään tekniikan olevan tehokas keino harjoitella kommunikaatio- ja vuorovaikutustaitoja. Jotkut yksilöt ovat onnistuneet myös perinteisillä koeasetelmilla tehdyissä tutkimuksissa suoriutumaan viestinvälittämiskokeesta. Parhaimmillaan tekniikan avulla harjoitelleet henkilöt ovat kyenneet ajan myötä itsenäiseen merkkien valintaan, esimerkiksi tuottamaan kirjoitettua tekstiä. Joissakin tapauksissa myös kommunikoivien henkilöiden kyky tuottaa ja hallita puhetta on parantunut merkittävästi. Yhteistä näissä tapauksissa on ollut se, että avustava henkilö tai henkilöt ovat toimineet määrätietoisesti ja tavoitteellisesti itsenäiseen kommunikointiin pyrkien.
Tutkimuskohteena tuettu kommunikointi on erittäin haasteellinen. Ongelmalliseksi tekniikan tutkimuksen tekee erityisesti se, ettemme tällä hetkellä tiedä juuri mitään sen vaikutusmekanismeista. Tällöin tutkimusasetelman suunnitteleminen on erittäin vaikeaa. Osa tämän tekniikan tutkijoista onkin päätynyt siihen johtopäätökseen, että ristiriita tuettua kommunikointia koskevissa tutkimuksissa aiheutuu siitä, että eri asetelmat soveltuvat eri tavalla tekniikan tutkimukseen ja että koeasetelmilla toteutetuissa tutkimuksissa tutkittavat epäonnistuvat yleensä siksi, etteivät koeasetelmat ota riittävästi huomioon tutkittavien erityispiirteitä joita voivat olla esimerkiksi toiminnanohjauksen ongelmat sekä muisti- ja havaintotoimintojen poikkeavuudet.
Tulevaisuudessa tekniikan vaikutusmekanismien ymmärtämiseksi tarvitaankin nykyistä monipuolisempaa ja poikkitieteellistä tutkimusta.
Miksi sitten tuetun kommunikoinnin tutkimusta tarvitaan? Tuetun kommunikoinnin tutkimus parhaimmillaan voi tuottaa uutta ja merkittävää tietoa vammaisten henkilöiden kielen ja kommunikoinnin kehityksestä. Tekniikan avulla itsenäisesti kirjoittajiksi aiemmin vaikeasti kehitysvammaisiksi luokitellut henkilöt ovat osoitus siitä, miten huonosti tällä hetkellä käytössä olevat diagnosointivälineet soveltuvat erityisesti vaikeasti vammaisten tutkimiseen.
Tärkeä lähtökohta jatkotutkimukselle on myös se, että tuettu kommunikointi on osoittautunut monelle käänteentekeväksi tekniikaksi, sillä sen avulla he ovat pystyneet ensimmäistä kertaa elämässään osallistumaan yhteisönsä toimintaan kykyjensä edellyttämällä tavalla. Heidän kohdallaan kysymys on viimekädessä oikeudesta kommunikaatioon. Erityispedagogisen tutkimuksen yhtenä tavoitteena on tutkia ja kehittää tuetun kommunikoinnin kaltaisia tekniikoita ja menetelmiä, joiden avulla tuo oikeus tulisi mahdolliseksi mahdollisimman monelle kommunikaatiohäiriöistä kärsivälle henkilölle.
FACILITATED COMMUNICATION SHOULD NEVER INVOLVE GUIDING A PERSON AS HE OR SHE ATTEMPTS TO POINT OR TYPE.
The idea is never to guide the person to a selection. In facilitation a parent, friend, teacher, speech language clinician or other communication partner provides physical and emotional support as the person with a communication disability tries to point in order to communicate. The method can involve pointing at pictures or letters. The physical support may include: assistance in isolating the index finger; stabilizing the arm to overcome tremor; backward resistance on the arm to slow the pace of pointing or to overcome impulsiveness; a touch of the forearm, elbow, or shoulder to help the person initiate typing; or pulling back on the arm or wrist to help the person not strike a target repetitively. Emotional support involves providing encouragement but not direction.
THERE IS EMPIRICAL RESEARCH TO SUPPORT THE VALIDITY OF FACILITATED COMMUNICATION.
Controlled studies (e.g. Intellectual Disabilities Review Panel, 1989; Calculator & Singer, 1992; Vazquez, 1994; Weiss, Wagner & Bauman, in press), observational studies (Biklen, 1990 and 1993; Attwood & Remington Gurney, 1992; Biklen, Saha & Kliewer, 1995) and autobiographical accounts (e.g. Eastham, 1992; Oppenheim, 1974; Nolan, 1987; and Crossley & McDonald, 1980) provide evidence that the method works. One explanation why some researchers (e.g. Wheeler et al, 1993; Szempruch & Jacobson, 1993) have failed to replicate these positive results could be that their tests are not valid.
Before discounting the potential competence of individuals with disabilities, researchers have the obligation to question the competence of their research designs.
FACILITATORS CAN INADVERTENTLY INFLUENCE (i.e. cuing, leading) THE COMMUNICATION OF THE PERSON TO WHOM THEY ARE GIVING SUPPORT.
Influence definitely can occur (see, for example, Biklen, 1990; Biklen, 1992; Biklen 1993; and Intellectual Disability Review Panel [IDRP], 1989). The IDRP study (1989) demonstrated that an individual who was able to type uninfluenced communication could also be susceptible to influence. Hence it is important for facilitators to monitor themselves and work to minimize influence (Schubert & Biklen, 1993). But, the fact that a person may be subject to facilitator influence does not automatically indicate that the person is not capable of uninfluenced communication!
IT IS NOT NECESSARY FOR FACILITATORS TO BELIEVE IN THE COMPETENCE AND THE ABILITY OF THE PERSON WITH A DISABILITY IN ORDER TO MAKE FACILITATED COMMUNICATION WORK.
There is no need to prejudge a person's ability until it has been demonstrated. Indeed, many people who have expressed extreme skepticism about the method have subsequently been successful with it (Schneiderman in 1993). Nevertheless, we have noted that as with any instructional situation, it is important for the facilitator/teacher to express confidence in the individual's ability to succeed with the method, much as a coach expresses confidence in a person's ability to learn a new sport or as a teacher exudes optimism that a young student can learn to read or do math problems.
FACILITATED COMMUNICATION CAN BE TESTED.
When introducing a person to facilitation for the first time, it is valuable not to be testing the individual, allowing a the person time to build his or her confidence with the new means of communicating. This does not mean that it is not possible to test facilitated communication. Clearly, for the method to gain wide acceptance, it must be examined rigorously through many kinds of tests and research. It is gratifying that despite the potential problem that research tests could intrude upon and upset the communication process, researchers are achieving success in controlled studies (IDRP, 1989; Vazquez, 1994; Simon, Toll & Whitehair, 1994; Calculator & Singer, 1992), and in observational ones (Attwood & Remington-Gurney, 1992). While our own research is comprised mainly of long term observational studies (Biklen et al, 1992; Biklen & Schubert, 1991), some researchers at the Facilitated Communication Institute are now beginning to design controlled experiments as well.
FACILITATED COMMUNICATION IS NOT A NEW METHOD.
Facilitated communication is known to have been used at least three decades ago (see Oppenheim, 1974) and was discovered independently in Sweden (see account in Schawlow & Schawlow, 1985), Canada (Eastham, 1992), Denmark (Johnson, 1988), Australia (Crossley & McDonald, 1980), and the U.S. (Oppenheim, 1974; Schawlow & Schawlow, 1985; L. v. Board of Education, 1990; Berger, 1992). Only recently has the method spread widely; this has occasioned active debate about the method.
SOME PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED.
Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash et al, 1994). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.
IT IS POSSIBLE TO EXPLORE WHETHER ALLEGATIONS OF ABUSE MADE THROUGH FACILITATION ARE THE WORDS OF THE PERSON WITH THE DISABILITY OR THE PRODUCT OF FACILITATOR INFLUENCE.
In an investigation, a second facilitator could be brought in to provide facilitation. If the person repeats his or her allegation with the same or similar details, this would indicate that the allegation originates with the person who uses facilitation to communicate.
SOME COURTS ARE NOW ACCEPTING TESTIMONY GIVEN THROUGH FACILITATED COMMUNICATION.
Testimony was given in an abuse case in Wichita Kansas; a jury found the accused guilty (Randall in Wichita Eagle, March 30 and 31, 1993). Also, the Supreme Court Appellate Division in New York state ruled that testimony given by such alternative means must be evaluated in each individual case (In the Matter of Luz P., Opinion & Order, January 14, 1993; Martin, 1993); to prove her competence to be a witness in her own case, Luz P. took and passed tests verifying her ability to communicate her own thoughts through facilitation (see Martin, "Facilitation theory tested", The Times Herald Record, July 31, 1993.)
FACILITATED COMMUNICATION REQUIRES TRAINED FACILITATORS.
It is important for potential facilitators to learn about the particular physical problems the method is intended to address; it is useful for new facilitators to practice technique, to learn how to monitor the person's eyes on the target, to teach finger isolation, pacing and other skills associated with working toward independent typing, to formulate getting-started activities and to work on fading physical support. Facilitators must also learn how to foster control by the person with the communication impairment over his or her typing, and to avoid facilitator influence, whether physical influence or verbal influence (e.g. completing sentences for the person, anticipating next letters and words).
PARENTS AND FRIENDS CAN LEARN TO BE GOOD FACILITATORS.
Some teachers and some parents seem to pick up the method quickly; for others it takes longer to learn. But many parents and teachers for whom it was initially difficult have been able to learn the method and to achieve confidence in their ability with it.
IN ORDER TO COMMUNICATE THROUGH TYPING, THE PERSON MUST KNOW HOW TO READ.
People do need to know how to read in order to be able to type out words. Interestingly, many people now using facilitated communication have already learned how to read but have had no means of showing that ability until they could type. Not surprisingly, individuals who use facilitated communication reveal varying literacy skills. If individuals cannot read, they can be introduced to facilitation in which they point to pictures. The manner of teaching them reading would be the same as for people who can speak.
FACILITATED COMMUNICATION CAN BE USED IN COMBINATION WITH OTHER FORMS OF EXPRESSION.
People who use facilitated communication may also continue to work on developing their speech; some people can say the words or letters they are about to type and some can speak a sentence that they have typed, even though they may be unable to carry on an open ended conversation. Others may continue to develop proficiency with manual communication. And certainly, using facilitated communication does not preclude learning other skills, such as independent living or employment related skills.
WE CANNOT SAY WITH WHAT PERCENTAGE OF PEOPLE FACILITATED COMMUNICATION WILL WORK.
The method may be useful for any individuals who cannot speak or whose speech is highly echoed or in other ways limited and who cannot point independently *and* reliably. But we have not selected a random group of people classified as autistic or developmentally disabled and tried the method with them, so we cannot say with what percentage it might work. Based on our experience, however, we believe that the method will be found to be useful for most people who have difficulties with speech and who cannot point reliably.
FACILITATED COMMUNICATION DOES NOT WORK EQUALLY WELL WITH EVERYONE.
As with any method, it may not be effective with some persons and will predictably have varying success with others. Success may be related to neurological factors (e.g. tremor, low and high muscle tone, lack of proprioceptive awareness) and to socio-emotional factors such as amount and nature of support, educational experience, and opportunities to practice.
NOT EVERYONE USING FACILITATION CAN TYPE FLUENT CONVERSATIONAL COMMUNICATION.
People vary in their communicative skills. Not surprisingly, individuals who share the same facilitator(s) demonstrate different levels of fluency as well as personal concerns or themes, distinctive phraseology or expressions, and other stylistic differences.
IF A PERSON TYPES FLUENTLY WITH ONE OR TWO PEOPLE, INITIALLY HE OR SHE MAY STILL HAVE DIFFICULTY TYPING WITH OTHERS.
Since confidence plays a big part in a person's success, changing facilitators may involve a period of adjustment and building or rebuilding of confidence.
FACILITATED COMMUNICATION IS NOT A CURE FOR AUTISM OR OTHER DEVELOPMENTAL DISABILITIES.
It is a means of communicating, not a cure.
PEOPLE WHO USE FACILITATION TO COMMUNICATE MAY NOT ALWAYS NEED A FACILITATOR. THE GOAL IS INDEPENDENCE.
Already some individuals in the U.S. and many more in Australia have demonstrated that they can learn to type independently. Because independent typing is a realizable goal, Rosemary Crossley has referred to the method as "Facilitated communication training."
THE FACT THAT SOME PEOPLE USING FACILITATED COMMUNICATION CAN WRITE POETRY AND DEMONSTRATE HIGH LEVEL THINKING ABILITIES DOES NOT NECESSARILY MEAN THAT THEY CAN CONTROL ALL OF THEIR BEHAVIOR.
The same neurological problems that make reliable independent pointing and speaking difficult may also affect other behavior, for example toileting. The fact that a person can type letters and thus communicate does not logically mean that all other difficulties would be eradicated, particularly if these involve stereotypies or obsessive compulsive behavior. At the same time, some people improve in these areas as their expressive communication developed.
THE FACT THAT A PERSON CAN POINT EFFECTIVELY SOMETIMES DOES NOT GUARANTEE THAT HE OR SHE CAN DO IT ALL OF THE TIME, ON DEMAND.
The issue is not whether a person can point, but whether he or she can do so reliably, that is on demand, for multiple step tasks as well as one-step ones. It is well known that there are neurological reasons other than intellect to explain why multiple step tasks might be difficult for people with developmental disabilities (see Kelso & Tuller, 1981; Miller, 1985; Maurer, 1992). Recent studies in the field of autism (e.g. Courchesne, 1993; Bauman in ASA, 1993) as well as in spina bifida, Down syndrome, Williams syndrome, Joubert syndrome, and hydrocephalus (see Leiner et al, 1991; Ziegler, 1990; and Bordarier & Aicardi, 1990) identify cerebellar abnormalities. It is known that the cerebellum plays an important role in regulating complex motor tasks. The idea of facilitation is to help individuals overcome particular difficulties with motor tasks. Over time, with practice and with improved confidence, individuals are expected to become able to type reliably, without a facilitator.
Facilitated communication training (FCT) is a technique developed by Rosemary Crossley in Melboume, Australia to help persons with severe communication impairments. Crossley (1993) defines FCT as:
a strategy for teaching individuals with severe communication impairments to use communication aids with their hands. In FCT a communication partner (facilitator) helps the communication aid user overcome neuro-motor problems and develop functional movement patterns. The immediate aim in FCT is to allow the aid user to make choices and to communicate in a way that has been impossible previously.
Physical support is provided at the hand or arm, helping the individual to initiate pointing or to point accurately. Over time the support is faded back. Many individuals now communicate withjust ahand on their shoulder or even independently.
Douglas Biklen of Syracuse University introduced the technique to the United States. Biklen and his graduate students began using FCT in the public schools in the Syracuse in 1990, where it was tried primarily with students with autism. Biklen discovered that most of the children with whom they tried FCT had preexisting, usually previously unidentified, literacy skills. This was consistent with the results Crossley had obtained in Australia where many individuals with labels of profound or severe mental retardation had been able to type words with facilitation.
To most untrained observers, FCT appears deceptively simple. The facihtator merely places his/her hand under the user's hand or arm. The person then begins to type. In fact, FCT is very complex.
FCT consists of two major components (Kurtz & Ashe, 1993): "(1) the physical correction and support facilitators use in helping individuals overcome specific neuro-motorproblems, and (2) an approach which the facilitator demonstrates high expectations and a positive supportive attitude toward the speaker [the FC user]." Both these components, and the confidence they engender, are essential for success.
Biklen (1990) and Crossley (1988) believe that individuals have failed to type independently in the past because of motor planning problems. The neurological problems that make speech difficult may also make it difficult to initiate and carry out many other motor activities, including pointing to letters to spell words. Biklen, Morton, Gold & Swaminathan (1992) believe that persons with autism may be suffering from global dyspraxia - an inability to adequately control voluntary physical activity. The existence of dyspraxia and other movement disorders in individuals with autism has been documented (Hill &Leary, 1993; Damasio & Maurer 1978).
Dyspraxia must be distinguished from poor motor control. Dyspraxia can affect a person's ability to initiate and sequence new motor tasks. Each time a person initiates speech or independent typing s/he is faced with the task of producing a new motor sequence. Each sentence that s/he constructs may require a new sequence of motor responses that a speaker has never previously put together. Kimball (1992) points out that a child with dyspraxia may have trouble thinking and engaging in a fine motor task at the same time. A child who can print his or her name may have difficulty printing when trying to express ideas.
Crossley (1992) identified thirteen problems (primarily neuro-motor) interfering with independent pointing. They are poor eye-hand coordination, low muscle tone, high muscle tone, index finger isolation and extension problems, perseveration, using both hands for a task only requiring one, tremor, radial/ulnar muscle instability, initiation problems, impulsivity, proximal instability, reduced proprioception, and a lack of confidence, Physical support is required to accommodate some of these problems.
For example, a common problem seen in the typing of people with autism is perseveration. An individual might hit the same letter repeatedly or they might begin typing the alphabet. On a computer keyboard or typewriter, I have seen individuals begin to type 'QWERTY" or "ASDFG." Sometimes an individual will have favorite letters they type automatically when their level of anxiety is high. One woman who I worked with tried to type "N" whenever she became anxious or distracted. To correct for perseveration, we simply pull the person back and encourage them to go on. We might say, "Wnat's next" or "Wnat comes after the 'A' in that word?" If necessary we might tell them what the next letter is or point to it with our free hand.
In correcting any of the thirteen problems listed by Crossley, the facilitator helps the speaker "not to make mistakes" (Biklen, 1993). The speaker is pulled back from the motor planning errors and prompted to continue. Facilitators never guide someone to the correct choice. The speaker should always initiate the movement toward the target. Backward pressure only should be provided to slow a person down or prevent him/her from making mistakes.
In addition to providing physical support, the facilitator must provide emotional support. The facilitator conveys his/her expectation that his/her communication partner is intelligent and will succeed. Facilitators talk to the FC speaker using the same language they would with anyone else his/her age. Good facilitators remain positive avoiding terms such as "Wrong...... Incorrect," or "No." Through his/her actions, speech, body language, the facilitator conveys a belief in the speaker's competence. The facilitator also conveys his/her belief in the speaker's intelligence by offering him/her choices and by selecting appropriate learning materials.
Who is a candidate for FCT?
Crossley (I 993) says that FCT "is a teaching strategy of particular relevance to individuals with severe communication impairments (SCI) who do not have severe physical impairments but nonetheless have had difficulty acquiring handwriting and manual signing skills." FCT has also been helpful with persons with good hand writing skills or independent typing skills but whose writing is characterized by stereotypical communication. Many who have been successful with FCT had previously been labeled severely or profoundly retarded.
Preexisting literacy skills are not necessary for participation in FTC. While many FCT users have unanticipated literacy skills, many individuals need extensive training. According to Crossley (1993), one of the most prevalent myths about FCT is that all FCT speakers have mysteriously acquired literacy skills. Through repeated incidental exposure many individuals have developed the ability to read and spell some words. Others may not have this ability or it may be very limited. FCT may be useful in teaching some of those individuals to read and spell.
I have worked with individuals demonstrating a wide range of literacy skills with facilitation. Those who have spent time in print rich environments, attended regular integrated classrooms, whose parents read to them, or who had received reading instruction were more likely to begin FCT at a higher skill level. Adults who had spent much of their life in institutions were much less likely to have advanced literacy skills. Most of the people with whom I have worked have required some training in grammar, word recognition, spelling, spacing, punctuation, and sentence construction.
FCT is not for everyone and not everyone will be able to spell. Not everyone needs physical support to access a communication device. It has not made other forms of augmentative and alternative communication (AAC) obsolete. Crossley (1993) says, "Facilitation is merely a technique for developing communication aid access skills." In some cases, physical support may help individuals without spelling skills to access other forms of AAC.
Is it real?
Because the speaker is dependent on the facilitator for physical support, many people remain skeptical about the source of the communication. Contrary to reports by some critics of FCT (See for example Newhoff, 1993), a number of FC speakers have progressed to the point where they are doing some independent typing. I have personally worked with three individuals who have moved from support of their hands to typing sentences independently. In two cases it took more than two years for the speakers to reach that level. One individual who I know in Vermont had a label of profound mental retardation and no history of any literacy skills. He is now typing single words without physical support.
I have also observed individuals who have moved from full physical support to a touch on the shoulder in a single session. One of them, a teenage girl, had already been typing independently with two hands. Her rapid typing reflected her speech - consisting mostly of commercials and television or movie dialogues. In her first session, with support at her shoulder, she was able to describe her previous typing as "fantasy." She indicated that she wanted to continue facilitation because it helped her not to type fantasy.
FCT speakers often reveal information that the facilitator has no way of knowing. One little boy in
Maine types things he has read at school with incredible recall when his mother facilitates him at home. There are many other examples too numerous to begin to list here.
Unfortunately the critics are not completely wrong. I know of situations in which a facilitator obviously guided a speaker to some or all of the words. Many facilitators have incomplete information about FCT or they have not received the supervision they need to facilitate well. As a result the people they facilitate either fail to achieve at their full potential or they produce words that are not their own.
All people who can benefit from FC deserve the opportunity to communicate validly at the most sophisticated level possible. It is hopeful that this article will help clarify what FCT is and what it is not.
Jos kirjoittamalla tai esimerkiksi kuvia osoittamalla ilmaiseva ihminen ei pysty suorittamaan kirjoittamisen tai osoittamisen edellyttämää motorista toimintaa, hän voi tarvita fyysistä tukea pystyäkseen kommunikoimaan. Syynä motorisen toiminnan vaikeuteen voi olla esimerkiksi liikkeen tarkan kohdentamisen vaikeus. Tällöin kirjoittaja voi tarvita fyysistä tukea esimerkiksi osuakseen tarkoittamaansa näppäimeen. Jos syynä on oman toiminnan aloittamisen ja ylläpitämisen vaikeus, kuten monilla autistisilla ihmisillä, tuen tarve on enemmänkin psyykkinen. Joillakin ihmisillä syynä voi olla oman toiminnan ohjailun vaikeus (dyspraksia), jolloin tuen tarve on ehkä sekä fyysinen että jossain määrin myös psyykkinen. Tuen tarpeen syynä ei koskaan voi kuitenkaan olla kielellinen kyvyttömyys tai vaikeus. Esimerkiksi kirjoittamiseensa motorista tukea tarvitsevan ihmisen täytyy itse hallita lukeminen ja kirjoittaminen kognitiivisena toimintana.
The Road SelfAdvocate
I am Tracy Thresher and I am here today to type about
dearly rewarding work as a self-advocate. First I want to
share my thoughts on using Facilitated Communication
(FC) and having a voice. I have been using FC since
1990 and was one ofthe first people in Vermont to be
introduced to it. Not being able to express myself was like.
being in a world ofsilence. I couldn't tell people what I
liked and didn't like. People thought I was retarded, that I
didn't understand what was being said to me. It was
frustrating and made me angry and I withdrew. The
experience ofthe world looks different from my
experience. Most people take their ability to talk for
granted and I take my inability to talk quite seriously. llive
with it everyday -it is always there each time someone
wants to read my thoughts.
The impact oflearning to speak up and have a voice has been quite meaningful for me. I have typed life goals and
dreams that have actually come true. One dream of mine was to go to church and be baptized. I told my mother this and it happened. I have been able to meet with my pastor and discuss God and the Bible because religion is very important to me. I am learning to do the things I want to... teaching others about Autism and FC and movement differences. These are things I've wanted to do and now it's happening! I have spoken about these things I wanted for my life and some have come true. This would never have happened without FC.
I have been appointed by the Governor to the Vermont State Standing Committee on Developmental Disabilities. This is a very important appointment because I am the only autistic person that uses fc to communicate on the committee. I must show how open minds are the ticket to learning how to support proper quality of life initiatives. I think sitting on committees and other structures that plan for and make decisions about the lives ofpeople with disabilities is extremely important with so much at stake we need to voice our opinions front and center so that typing is seen as valuable input.
Yes I want you all to know speaking up and speaking out are as American as apple pie and hot dogs. It is every Americans god given right to speak ones thoughts, views, and lost world ways. The war in Iraq is not proper use of Americas' troops, resources, or political capital. This is also true of autism the current wars on autism are deeply misled and a strong voice is needed from people with autism. Without that voice the fear will guide the way
autism is treated. That is more to do with people's misunderstanding of what autism is and I think people have loads ofprofessional awful information. We are not a diagnosis or a label we are people with feelings likes and dislikes very much like everyone else. The way to think about this is, each person is an individual with there own uniqueness, so don't think autism think out who the person
This is my message to all ofyou -speak your true inner voice -let people know what trusting intelligent and articulate open-minded people we are and that we have something to offer. And the way to get heard is to find trustworthy partners and with them you can fully express yourself So much of my time is spent in silence listening to others stories and lack of speech traps me in with raging thoughts. Learning to speak out first and foremost is done with a desire to change the world and my voice may not sound like others but the desire is 100 and 10 percent there waiting to fire things up.
Why to me is self-advocacy important? That is my life-line to working real thoughts through typing and the outside world. The thoughts are there waiting to come out and hope for better life pushes the words out. The Breaking the Barriers project is one good example of speaking out and being heard. With training and support from Christi Kasha Hendrickson, Denise Marshall, and Jamie does double time talker Rupman we were able to spend time advocating for the right to communicate in Washington DC and people like the state representatives listened to Larry
Bissonnette, Tyler Fihe, Sue Rubin, Harvey Lavoy, Pascal Cheng, Jamie Burke and me.
My advice to you is to get support from a knowledgeable Communication Partner and get out into the world so you can make connections and learn how to speak your voice. Leading the way is our responsibility and our right to have a voice. While typing this I am thinking my life sucks due to so little say I have at times and that people speak for me. But here I am typing real thoughts about things that are very important to us. All I wish is that we didn't have r to deal with so much ignorance; really I do, but so be it and onward soldiers and let's change how people view disability.
Righteous indignation is up to us, so I say speak out let people know what you are thinking for silence is deadly and speech is golden. I am not controlling the way people think seriously folks what I am trying to do is speak to your consciousness and just thinking. So out spoken Tracy is saying think with your hearts and minds to cast out the doubters making our message clear. Want you all to think about what you do when you leave here. Big time call to action folks step up and speak out doing what you think you can't is important. Yes I can't take credit for that it was Eleenor Roosevelt who said, "you must do the things you think you can not."
Why autistic children struggle to speak is something of a mystery. Many autistic children learn to speak late and only with intensive language therapy. Some never learn. This is not true, however, of those with Asperger's syndrome, a milder form of autism. Children with Asperger's tend to be almost hyperfluent—or as one such child put it to me in an interview, "I talk like a dictionary."
Those with classic autism often talk more like a balky tape recorder. They may be limited to echolalia — repeating words from songs, television and the environment — in meaningless ways, or lapse into making growling incoherent sounds. Chandima Rajapatirana, a 32-year-old autistic man from Potomac, Md., writes about how hard it is for him to coordinate the working parts of his body and brain to produce speech. He and others have expressed the anxiety they feel about trying to speak and failing. Jamie Burke, a 19-year-old high school senior from Syracuse, N.Y., puts it this way: "The fears that live in the silly-sounding voice made me feel like people would laugh at me."
Jamie didn�t tell me this in spoken words. I watched him type his answers to my questions using a lightweight keyboard. His mom, Sheree, held the keyboard as Jamie typed one-handed. After he finished each answer, he would read it to me aloud. He speaks clearly with good intonation and has worked hard to achieve this, but he still finds it difficult to speak without typing first.
I met Jamie Burke and Chandima Rajapatirana earlier this year at a Syracuse University training session for people interested in learning facilitated communication. FC is a highly controversial technique for helping people with limited or no speech learn to communicate, generally using a keyboard and the help of a human facilitator for both physical and emotional support. It originated in Australia in the late 1970s and was first used for children with cerebral palsy, among other disorders. Both Burke and Rajapatirana had their moms serving as facilitators in our interviews. When Jamie types one-handed, Sheree Burke holds the keyboard. When he types with two hands on a table, she stands behind him touching the back of his shoulders. Rajapatirana also has his mom lightly touching his shoulders or waist as he types. But many others who rely on FC require a lot more hand-holding. Some are physically supported by their facilitator at the forearm or shoulder; some are held at the wrist.
What's so controversial about FC? A preponderance of studies have found that the ideas being expressed are not those of the person with autism but rather those of the facilitator. In several studies, only a small percentage of FC users were conclusively shown to be expressing independent thoughts. In some studies where the facilitator and FC user were separated, given different sets of information and then asked questions about it, it was facilitator's information that was more often expressed in typing, though the facilitators are often unaware that they are leading, says James Mulick, professor of pediatrics and psychology at Ohio State University and co-author of research debunking FC.
What then to make of what I saw at Syracuse, which has an FC institute? "You are simply being deceived," says Mulick. "But don�t feel bad. Even some behavioral scientists have been deceived."
Proponents of FC concede that when FC is done improperly, the facilitator can take over. They also say that people who are severely autistic respond poorly to the lab setting. And they point to examples like Burke and Rajapatirana, who are not held by the hand or wrist — though both did require that degree of support when they began using the technique.
To get more insight into the controversy, I asked one of the FC users at the conference, Tracy Thresher of Vermont, if I might take a stab at facilitating. Thresher agreed, and an experienced facilitator named Harvey Lavoy coached me. I held Thresher�s wrist as he typed answers to my questions. I found that I had to constantly pull his hand back away from the keyboard with a steady pressure. At no point did I feel that I was leading him toward the keys, nor did I know the answers to the questions I was asking him. He answered some clearly, and others less coherently.
I can imagine that facilitators with a close, loving relationship to the person using FC might inadvertently lead them by the hand and, in this sense, put words in their mouths. But at Syracuse, I became convinced that at least some FC is for real, and for someone with no other form of communication, it can be life-altering.
Rajapatirana's mother, Anoja, told me that her son suffers from seizures, as do many autistic people. For years, she would crush up his medication and put it in his food, because he couldn't swallow the pills. "One day, he had a headache, and he just swallowed a Tylenol," she recalls. Anoja, amazed, asked him why he had gulped down the Tylenol but had never been able to swallow the seizure medication. He answered, typing, she says, that "he thought that if he didn�t take the pills, maybe he would die." The Rajapatiranas shared this thought from Chandima (though to be honest, I didn�t witness him typing it): "FC doesn�t cure you, but it gives you a reason to live."
Who thinks what about being autistic
In response to the NPR show, I’ve seen people (who must not have actually listened to the show), saying that it’s only auties who speak, or who are regarded as “high functioning,” who are happy with being autistic or oppose the idea of curing autism. As far as I’ve been able to tell, this isn’t the case.
There’s a lot of different opinions on curing autism, not just two, of course. And I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic, it doesn’t even bear up under scrutiny. But if I were to take autistic people and how the world generally divides us, and take our opinion of being autistic, I really don’t think I’d see much correlation to the world’s false subtypes.
I’m going to post the following quotes, but with a bit of a disclaimer attached. I’ve found that aug-comm-using auties are often tokenized even within the autistic community. When we agree on a basic principle such as the way we think about being autistic, that can be used to say “See, we have those people too.” But an aug comm user would have to be pretty oblivious to hang around the autistic community for very long and believe that we are considered to be on equal footing with other autistic people. That’s one of many divisions that unfortunately still divides this community, in subtle and not-so-subtle ways. So if you see a post like this linked to as evidence that this is a wonderfully and totally inclusive community for all autistic people of all kinds, think again, we’re not, on many levels. But also think again if you hear that the “non-inclusiveness” is just that we don’t like the idea of cure and don’t understand “real autism” which is defined as autistic people who want a cure.
I’ll start the quotes with a quote from Cal Montgomery that sums up the point of this entire post in a way:
I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.
Some political opinions about autism:
I value my AUTISM above all else with which my life has been “gifted.” While I also have cerebral palsy and epilepsy and these are wonderfully special to me, and I often think being “unable to speak” is a blessing in disguise; none of these remotely match the total delight of being AUTISTIC.
I can see and hear people reacting to this by wondering “Is she serious or is she pulling our legs?” Well, wonder no more! I mean everything I have said and am about to say.
What do I see as the gifts that autism has given me? My incredible intelligence, unique insights, talent for improvisation, creativity in writing and music, wonderful memory, and awesome ability to teach and help others understand… I believe all of these are valuable “side-effects” of my AUTISM that far outweigh all of the “negatives”. I am who I am at least partly because of what I am, and that includes AUTISM and how it has gifted my life.
That was written by Sharisa Kochmeister, a woman with autism, epilepsy, and cerebral palsy. She was, until learning to type (which she now does independently), presumed to have an IQ of 10. The full text of what she said in the above presentation can be found at the Watch Our Words website.
Therefore, Autism is a friend, a comfort, a companion - albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer… And it’s who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn’t even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell… surviving; a physical body, but that would be all. There would be no being.)
Kim, a Canadian autistic woman, wrote that. She learned a non-communicative form of speech as a child under pressure and only began to use speech to communicate as an adult after using a communication device for awhile. Last I heard, she still alternated between speech and typing. The full text of what she wrote can be found at What Is Autism?
World needs retards. Yes! Retards, retards, retards! You can say it, too. Retards. Go ahead and say it. Go ahead and shout the word. Retard is who I am.
Elana Connor was, at the time of writing a short piece reclaiming and taking pride in what’s normally a nasty epithet, a girl in California who had recently begun typing. The full text of what she wrote can be found at Why Retards Are Sad In This World. That is apparently one of the first things she ever wrote.
I dreamed of being normal, the best that I could be –
But it’s awful being normal; why can’t you all see?
I’m tired of being normal — autistic’s what I am.
Why can’t we all be normal, being just as I am?
All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don’t need surgery to make me real any more than a beautiful woman “really” needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn’t make Pinocchio real — it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes “I will be real when I am normal,” will always be almost a person, but will never make it all the way.
When Doug Biklen was recruiting authors for his anthology, Autism and the Myth of the Person Alone, he said of Lucy Blackman:
Blackman [...] is hardly any more accommodating to what she perceives as my interest in how-to strategies. “’How to’ for what?” she asks. When I requested that she write about her experiences with autism so that others might benefit from her analysis, she told me she found it annoying to be approached about such matters and not about her ideas on non-autism-related topics. She felt my agenda assumed she might be “wanting to be normal.” She does not. Blackman reminds me that my agenda might not be her agenda, and that if someone feels it valuable for her to be heard, she would rather discuss her “pure intellectual thought.” She is not about to unveil a series of “remedies” or “practices.”
He did convince Blackman to write for his book, and this is part of what she said in it:
If I were to say anything about autism, it would be how fascinating it is. The idea that autism is fascinating is more that it is what I hope for the future, that my kind of thought processes are seen as possibilities for the next genetic shift in Homo Sapiens, not that it is a progression but that further down the track the slight changes in individuals scattered among the population is a slight difference in problem solving. Unbelievably those of us who have greater difficulties may be nature’s experiments, and you can’t expect evolution to get it right every time.
Recently, Estee wrote a blog post called My Visits with Larry Bissonnette and Jonathan Lerman. Both are artists who are also autistic. Here is her account of part of her conversation with Larry Bissonnette (another co-author of Autism and the Myth of the Person Alone), who communicates by typing:
Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”
“People who think your disability is a sickness need to be cured of their ignorant attitudes.”
I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.
I started with a quote by Cal Montgomery (who speaks using a keyboard and is heavily involved in the cross-disability movement), so I’ll end with one from the same article, Defining Autistic Lives, which was a review of Autism Is a World.
But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify “defects” in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people’s failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing — or at least controlling — us. And having made that conclusion, they continue to accept or support ways of living that shut us out.
Again, these are obviously not the only opinions of people who use augmentative communication, but it would be silly (one would think) to assume that all people who fall into any particular category have the same opinions about everything. (I’m not saying that everyone’s equally right, just that everyone has varied opinions.) And these are not saying there are no rifts in the autistic community and that we’re one big happy utopian family, because we’re not.
But it is evidence that our opinions about being autistic (or as some put it “having autism”), and our deemed “functioning level” (which is often, for some reason, very speech-dependent), are not particularly correlated. People who do not believe in cure and/or find some value in being autistic are represented in the whole autistic “spectrum” as far as anyone knows (this includes people who had no means of communicating about it for a long time), and so are people who do believe in cure or do not find value in being autistic. So it’s about time people quit making ridiculous comments about “If you were one of those people who couldn’t talk, you would not believe what you believe.” Our differing beliefs come from our differing worldviews, not our “functioning level” in the eyes of non-autistic people.
In early September of this year, I got on a plane for another trip to Nashua, NH, for the 2006 AutCom Conference, once again feeling that wonderful feeling of anticipation and excitement that I always feel when taking a trip and attending a conference. When I arrived at the Crowne Plaza, I felt so glad to have come to a place that felt like home and to be with a wonderful group of people. The warm glow continue as I participated on the Sibling Panel with my oldest sister, Kit, as she talked about her perspective on having grown up with me and the loving relationship we continue to have, despite us living so far away from each other.
On Saturday morning, I gave a tearful, heartfelt President’s address on the passing of our beloved Ralph Maurer, and, as I spoke,
I once again felt deep regret at this tremendous loss and how we had
our work cut out for us, as the public attitude toward Autism
Spectrum Disorder has become more negative and “cure” oriented.
Excited as I was to be at the conference, I felt this heavy pall of
sadness as this was a huge gap that couldn’t be filled.
I listened to Morton Gernsbacher’s speech transfixed, as s
he discussed the “epidemic” of autism and how the greater
awareness of autism and the broadened definition of autism,
to include Asperger syndrome and PDD, was a contributing factor to
the increased number of children and adults on the autism spectrum.
My only concern was that she didn’t mention vaccines as a possible
causative factor, but I also felt a sense of relief, being a “Rubella
baby” when I was born, because there was no MMR vaccine in the
The morning breakout session that I attended was the one by Wade
Hitzing on positive behavioral supports. He talked about a young woman
in a sheltered workshop who engaged in challenging behaviors that
I recognized as her wish to communicate her strong desire to get out
of doing boring, meaningless work that was not commensurate with
her strengths and interests. This resonated so much with me, because
I had done that sort of thing when I was in
Anne Carpenter, President, and her sister, Kim
(continued on next page)
In This Issue:
Page 1: President’s Message
Page 2: Conference Highlights
Page 4: Thanks to our Speakers
Page 6: Real Supports - What Works, What Doesn’t
Page 12: The Person with Autism as Mentor
Page 13: Autreat Conference Report
Page 14: Newest Board Member - AutCom Bookstore
Page 15: Principles of the Autism National Committee - Membership Form
sheltered workshops, to get out of doing something that I just
didn’t want to do. This included using the bathroom too often,
shifting my position in my seat, and slowing down in my productivity.
While there was little that was new in his presentation, it was very
important and very much to the point.
But in the afternoon, I just lit up like a light bulb when I heard
Dr. Paula Kluth discuss “The Tipping Point,” Malcolm Gladwell’s
bestselling book, which I suddenly deeply regretted not having
read, because she discussed the book’s main points in the context
of changing how autism was viewed and really making facilitated
communication acceptable once again and making full inclusion
a common practice, rather than having it only done sporadically,
as is currently the case. She said that one must create connections
with many different people and that one individual can be a “tipping
point.” One example of a tipping point for FC was the emphasis on
personal stories and testimonials of successful communication with
FC, rather then the reliance on validation studies which gave FC a
black eye in the late 1990’s and caused many professionals
to discredit the technique on a wholesale basis, without
giving individuals a real chance to use it to their maximum benefit.
Kluth also talked about creating an “epidemic of inclusion.”
This would allow more children to see peers on the autism spectrum
so there would be less fear and negativity and greater
understanding, and children with ASD would benefit as well.
Kluth’s presentation was the highlight of the conference for me,
but I really enjoyed the small breakout session where other
people with autism talked about supports and what helped and
what didn’t. Through that, I met people who had wonderful i
deas that they could express because they had the opportunity
to communicate them through augmentative communication, whereas
they would not have gotten that opportunity anywhere else.
And of course, I had The Last Word, along with other people on
the spectrum who had been at the conference, and we all agreed
that it was one of the best AutCom conferences EVER. After t
he conference ended, I still felt that warm glow, even as Kit left
to go back home, and as I had dinner, went to bed and presided o
ver the Board meeting Sunday morning. The warm glow persisted
as the meeting proceeded smoothly and as I headed back home
to Ann Arbor. Once again, I felt so gratified to be President of
an excellent, high-minded organization.
Page 2 The Communicator Fall 2006
(AutCom Conference continued)
2006 Conference Highlights
September 8th and 9th found members of the Autism National
Committee and other interested people converging on the Crown
Plaza Hotel in Nashua, New Hampshire, for our annual conference.
This year we focused on the theme, “Real Supports for People on
the Autism Spectrum.” The conference was dedicated to the memory
of Dr. Ralph Maurer. We were very pleased to have a number of his
family members in attendance.
AutCom conferences have offered an uplifting experience for everyone
who attends, and this year was no different. Family members,
professionals and individuals on the spectrum gathered together to share
their wisdom and to strengthen relationships that continue across the
miles long after the weekend is over. This newsletter is a tribute to the
conference, containing photos, presentations, and synopses.
One of the best parts of attending an AutCom conference is being
allowed to be oneself. As we listened to the speakers, it can be hard
to contain oneself as we want to add our own thoughts to the discussion.
Barbara Moran spoke for a lot of us when she said, “I’m sure that
at Menninger’s (the institution she was in as a child) they may have
thought I had ‘penis envy’ (a Freudian concept), but I didn’t. I did have
‘status envy,’ ‘wallet envy,’ ‘freedom envy’ and ‘travel envy.’ Right now
I have ‘microphone envy’.” As with everything else, we find adaptations
that will work in the moment. Writing our comments to each other
either on paper or keyboards allowed us to share with others
nearby without distracting the speakers too much.
Our appreciation goes out to the conference committee: Barbara
Cutler (chair), Anne & Paul Bakeman, Larry Bissonnette, Pascal Cheng,
Rob Cutler, Jean Dalton, Rena Gans, Louise & David Hackett, Alan
Kurtz, Zach Rossetti and Mary Schuh - all of whom worked hard to
pull the weekend together.
As the conference comes to a close, those on the spectrum are given
the opportunity to tell us how we have done in “The Last Word.”
Rob Cutler summed up (next page) with a reminder that it is the daily
life of each person that is most important, not just one weekend. We
left prepared to carry on the work we started here in our own homes
I AM A GOOD MAN. I THINK THAT THE GOOD WORK WE DO IS JUST A BEGINNING. WE HAVE SO MUCH MORE TO DO, NOT HERE BUT OUT IN THE WORLD, SPREADING THE WORD. PHIL IS RIGHT. WE NEED TO JOIN TOGETHER WITH OTHER CIVIL RIGHTS GROUPS. WE HAVE TOO LONG THOUGHT OF OUR WORK AS A SEPARATE PIECE OF THE PIE. WE ARE ONE PIE - THE HUMAN PIE. JOIN ME TO SERVE IT TO THE WORLD. WHERE DO WE GO WHEN WE LEAVE HERE? I DON’T WANT CREATING ARTIFICIAL SITUATIONS WHERE WE APPEAR TO PASS BUT REAL SITUATIONS WHERE WE ARE ACKNOWLEDGED FOR THE GIFTS WE HAVE TO OFFER THE WANTING WORLD. LEAVE THIS PLACE AND FIND YOUR VOICE. DON’T BE AFRAID. WE ALL NEED TO TELL OUR STORIES. THANK YOU ALL. I LOVE THIS WORK AT CONFERENCES BUT NOT AS MUCH AS MY TEACHING JOB. IT IS THERE THAT I AM NEEDED. IT IS AT THAT PLACE WHERE MY LIFE HAS MEANING. YES.
For next year we are planning our first international conference
for Edmonton, Alberta, Canada. Mark your calendar for the weekend
of September 27th-29th (a longer conference) and be sure to get
your passport in time to join us.
Fall 2006 The Communicator Page 3
2006 Conference Highlights - continued
Barbara Cutler presenting AutCom’s appreciation to Ralph Maurer’s family
The Autism National Committee thanks the following Organizational
Sponsors and Individual Contributors for their generous support of the
2006 Conference, “ Real Supports for People with Autism,” which was
held on September 8-9 at the Crowne Plaza Hotel, Nashua, NH:
The Northeast Regional Conference on Autism
The Institute on Disability, University of New Hampshire
The Center on Disability and Community Inclusion, University of Vermont
The Facilitated Communication Institute, Syracuse University
The Massachusetts Developmental Disabilities Council
The Vermont Developmental Disabilities Council
The Autism Society of Michigan
Jay Nolan Community Services
Virginia Maurer (in memory of Ralph Maurer, M.D.)
Paul & Anne Bakeman
Pam & John Cooper
Morton Ann Gernsbacher
Louise & David Hackett
Sandi & Doug McClennen
Zach Rossetti & Friends
Michael & Angelina Umali
Page 4 The Communicator Fall 2006
Thanks to our AutCom Conference Speakers
Morton Ann Gernsbacher, Ph.D. (right)
“The science of autism; Beyond the myths and misconceptions”
Larry Bissonnette (above),
Anne & Kit Carpenter (photo on first page):
“Relationships: Families, friends and lovers”
Rob Cutler (above) and Michael Dowling
“The person with autism as mentor”
(See report and another photo on page 12)
Lisa Lieberman, MSW, LCSW
“Challenges families face in finding and working with staff in their homes”
Pascal Cravedi-Cheng (at the keyboard):
“Growing your skills with facilitated communication”
Fall 2006 The Communicator Page 5
Thanks to our AutCom Conference Speakers
Linda Rammler, PhD:
“MACS attack: Understanding the impact of motor, anxiety, communication and sensory challenges in autism”
Paula Kluth, Ph.D. (with Nicolette)
“The ‘tipping point’ and how we can use it to articulate our mission”
Dr. Tom Larson
“Chiropractic craniopathy in autism”
“Real Supports: What helps, what doesn’t”
Barbara Moran (above)
Amanda Baggs (article and photo on page 6)
Phil Schwarz (report page 9 and photo page 14)
Tracy Thresher (article and photo on page 10)
Wade Hitzing, Ph.D.
“Behavioral issues in autism”
Page 6 The Communicator Fall 2006
Amanda Baggs - Real Supports: What works, what doesn’t
Kathleen Seidel read this speech while I was lying on the floor (right)
mostly watching my hands flutter, so I was right about the
A bit about my supports: I’m a veteran of Californian institutions
and their segregated schools. I got supported living services
in California, and I now get something similar in Vermont. I’m part
of a pilot program in Vermont that uses electronic surveillance
at night instead of roommates for people with severe disabilities.
I’ll talk about the mechanics of support, and then I’ll talk
about attitudes. I’ll assume since it’s AutCom we all know
that institutions and aversives are bad, so I won’t dwell on
that. Instead I’ll talk about what can crop up even with these
values and what to do about it.
The Adventure of Autism
I’m writing in the shower. Someone’s washing my body, and my
mind is checked out, busy writing my talk. My hands will type
it onto a computer later.
By the time you hear it, I don’t know how I’ll be. I don’t
know whether I’ll type fast and without support, or painstakingly
slow with physical support, or not at all. I don’t know if I will
be able to use standard English, or my more natural language
of condensed metaphor, or nothing. I don’t know if I will be able
to understand questions, or what an audience is, or any part of
the room beyond patterns of sensation. This is part of
the adventure of being autistic.
Storks can’t fly far under their own wingpower so must catch a
ir currents called thermals. As an autistic person, I have to catch
thermals in my head: Perception, movement, symbol, language,
pattern, contemplation. These are not reliable.
This ever-shifting maze of thermals means that what we can a
nd can’t do is unpredictable. Service systems are made for
people whose skills remain constant. They need to become
more flexible in order to allow for lives in which the only constant
is fluctuation. I need a different level of support every
day, sometimes every hour. We need more than one-size-fits-all
One Size Does Not Fit All
The traditional response to a person with a severe disability is to
give them a roommate. I’ve had a migraine every day for the past
few years. I need time every day with no stimulation at all, not
even someone’s presence. I also have a movement disorder that makes
it harder to move, the more stimulation I encounter. Living with
someone means that I spend all my time unable to purposefully
move, occasionally screaming or vomiting or hitting myself in the head.
It’s about health, not just preference. I wonder how many other
people are in that situation which is wrongly considered “just part of
their disability” rather than a reaction to part of the environment
that could be modified.
I’m part of a pilot program in which at night they turn sensors on.
If certain things happen in the house, they listen in and then come over
to my house. This means I don’t have to have someone overnight in order
to be safe in my house.
I can’t get all my medications because only roommates are allowed
to administer some of them, so I have untreated infections and
other medical problems.
We need creative things like paid neighbors and electronic surveillance
for people who don’t want or can’t live with a roommate. Right now,
many people have an unacceptable choice between neglect
This is Fey. She is my cat, and my longest-term, best trained and
most reliable facilitator. I am not joking. She walks up and down my
body, nudges and nips, and figures out how to help me
get moving. Unlike when I use human facilitators, nobody ever
claims that Fey is the real author of my work.
Unfortunately, it’s hard to train staff to facilitate. They don’t
all have the knack that Fey does. I use physical facilitation for
many movements beyond communication. Right now the only
nearby human who knows how is my friend Laura despite my a
gency’s FC trainer being session D2 today. Trapping autistic
people by not training staff needs to stop being acceptable.
Creativity is also important: Who’d have seen a cat as a
facilitator? Fey did.
Nobody ever gave me a list of what supports are out there.
That means there’s probably all kinds of things I don’t know
about. We need to know what’s out there. People need to tell us.
People need to listen to us. I can’t count the number of times I’ve
either been taught something I already know or else had something
I desperately needed overlooked. When I object, people say
they know best.
This is why I dread the utterly dehumanizing process known as
the “skills assessment,” wherein someone squashes my complex
life onto a piece of paper. Inevitably, they either focus on my writing
skill and forget everything else, or they assess my life skills and
say that I’m too low-functioning to know what’s good for me. Did
you know that I scored as low as possible on a test of communication
This is a good time to talk about attitude rather than mechanics.
Do-Gooders: An Introduction
High-pitched screeching voice
I cover my ears to block out ‘praise’
And look for a way out
A cat contented on the floor
Is grabbed up into ‘loving’ arms
That squeeze her as a voice squeaks noises
Meaningless and loud
“I am good with autistic people,”
The screech confides to a friend.
“I am good with cats,” it brags.
The cat and I hide under the bed.
Do-Gooders: A definition
My statements about do-gooders are not meant to put people down,
but rather to point out a common dead end and how to get out of it.
Frequently, in the DD field, I see a person across the room with a
“saintly” glow about them. My first reaction is to make sure that
they won’t see me or speak to me if I can help it. But sometimes there’s
Unfortunately, some people are attracted to that glow. They don’t know
it is the fools-gold glow of a misdirected ego. Truly selfless people do
not poke out so far beyond their bodies or run around announcing
themselves like that. Truly selfless people are not so poised and perfect
and worrying what others think about them. Truly selfless people are
amazing when you meet them, but they are more down-to-earth and
far rarer than your average garden-variety do-gooder. They don’t tend
to announce themselves.
A do-gooder confuses doing the right thing with feeling good
about themselves, a selfish pursuit of selflessness. Do-gooders flock
to the helping professions because they are good places to feel like
Amanda & Fey
Fall 2006 The Communicator Page 7
Amanda Baggs - Real Supports: What works, what doesn’t
Amanda and her cat, Fey
(continued on next page)
you’re helping even if you’re not. Even people who are not
yet do-gooders can get turned into them by exposure to do-gooders
held up as shining examples in the field. Fortunately it’s reversible
How to Resist Do-Gooderism
That warm fuzzy satisfied feeling you feel when you think
you’ve helped people? Ignore it. It’s like a drug. You can destroy
lives pursuing that feeling and not even notice.
Find out what your clients need and want, and of equal importance, what we don’t need and don’t want. Listen to us when we like something
and when we don’t like something. Don’t take correction as a sign
that you’re evil; take it as a sign that you’re learning.
Don’t make a big show of how much you’re learning from us, either.
Bowing at our feet is usually a sneaky way of towering above us—it’s false humility. Real humility means neither shrinking nor puffing yourself
up. Meet us as genuine equals, neither put on a pedestal nor driven into the ground.
Also avoid putting our words and deeds on a pedestal. Dave Hingsburger once said that anyone who likes every person with a disability is bigoted, unable to see individual differences. Anyone who likes every word we say or everything we do is incapable of differentiating between one thing we say or do and another. When we’re your equals, you agree and disagree and evaluate and think, not just heap extravagant praise on us.
Never forget that even if we’re technically your boss, you have more power over us than we do over you. You can get another job. We will always need staff, sometimes for things as basic as communication or freedom of movement.
Think about things in that context. Expecting or demanding gratitude is laden with power problems. Imagine having to appear cheerful and grateful, no matter your mood, to get food or be allowed to communicate. Until this power situation changes, you won’t be able to trust that the praise and thanks we offer you is not really terror in disguise.
The book “Power Tools” by Dave Hingsburger is a great little book about power and control in the human services industry. I’d recommend finding a copy. Many of his other books are worth reading, too. He himself is a recovered do-gooder and can help other do-gooders in their own recovery.
If you start to recover from do-gooderism, you’ll find the rewards are far greater than that warm fuzzy feeling I mentioned. Just as drugs offer only a counterfeit happiness, warm fuzzy feelings only prop up the ego that blocks you from both real happiness and really doing the right thing.
Also, everyone is exposed to and affected by disability prejudice. The following are examples from my own life of situations where people can take their prejudice to work with them.
Not What It Seems: Shame
I appear to have a genetic syndrome that makes me look a bit different than usual and like I’m a blood relative of other people with the syndrome. I used to hate my joined eyebrows and all the other things that make my appearance a bit different. Doctors and schoolchildren alike told me this appearance was ugly, diseased, and misshapen. I believed them.
Some people said my feelings were natural. They offered surgery and hair removal. Other people said, “Hold on here. You’re not ugly.” They showed me paintings by Frida Kahlo who had eyebrows a little like mine and exaggerated them in paintings.
When we hate our bodies, our supporters need to learn about disability shame and know it is like a girl who vomits after meals to try to be thin. When people treat our shame as natural, they are doing the same as the magazines who only print skinny supermodels.
I am strong enough now that when someone calls me names like retard, I can laugh inside and type to them, “And proud of it!” The people who support us can help us be rid of our shame but can also make it worse.
Not What It Seems: Cuteness
There’s something that happens when I am treated like a child. A routine snaps on in my head. I giggle a certain way, I react a certain way: Cute, utterly harmless. I may be too old for physical cuteness, but I can have a cute attitude.
Some staff mistake this for connecting to me. They do the right triggers, I giggle, and they think they’ve made a connection to me. All they’ve made a connection to is internalized disability oppression: “Be cute and people will protect you. Be cute and people won’t hurt you.”
People can even believe that when I fight this reaction, there’s something wrong with me, that I’m getting a bad attitude. Really, I’m just trying to act like my personality, not a wind-up doll. Many other women will know what I am talking about when I say
Page 8 The Communicator Fall 2006
Amanda Baggs - Real Supports: What works, what doesn’t
that assertive women can get called bitches for not being deliberately cute and non-threatening. The same happens with us. Please make it easy for us to be three-dimensional.
Not What It Seems: Dividing
Some people say I am a shell with no person inside. They see a tiny part of my body but refuse my mind. Some people say they can’t understand why anyone thinks I look unusual. They see a tiny part of my mind but refuse my body.
My mind and my body are intertwined. People are only masking their own prejudice by pretending one or the other isn’t there. My looks and my writing are part of the same person. Chopping me into manageable bits will never be a compliment. I do not want to be forever chopped in half for people to be comfortable in my presence. I am a whole person. Take a good look: This shifting soul and this shifting body are me.
Fall 2006 The Communicator Page 9
Amanda Baggs - Real Supports: What works, what doesn’t
Phil Schwarz - Real Supports: What works, what doesn’t
A report on his presentation
Phil Schwarz, our newest Board member, was asked to represent the Asperger part of the spectrum on the panel of presenters on real supports. He reminded us that a spectrum cannot be one dimensional but is multidimensional, with many areas of ability/disability found within the spectrum, and that these abilities are more orthogonal than “conventional wisdom” would have us believe.
Phil outlined a number of abilities used by “conventional wisdom” to measure how people function. These include having functional language and literacy, the ability to manage self-care, to maintain or co-maintain a household, to hold a job, to pursue a formal education and to function as a citizen and consumer. There is a wide variability in all of these categories, not only in the way they are manifested in each individual but also in the way that they fluctuate over time and in different situations. “Conventional wisdom” has a tendency to measure them concretely and put them in a hierarchy which adversely affects how support is offered and delivered. Real Supports are those that are flexible according to individual needs and individual situations in the moment.
After discussing the eight categories in detail, Phil went on to outline how real support must go on beyond these nominal categories. He stressed the importance of prompting, check-in, feedback, coaching, mentoring, interpreting, and breaking down problems into stepwise, solvable categories. He also stressed how important it is to recognize that support may not need to be continuous but may be needed intermittently.
The model of disability as constant and permanent may appear to be useful when one considers disability law and economics but presents a barrier when one is looking for real supports. Variable degrees of stress from external factors over time contribute to the variable degrees of disability over time. Skill acquisition over time needs to be accommodated and should not jeopardize unrelated entitlements and arrangements-in- place.
Other factors that are rarely considered are the attitudinal concerns for providers, such as respect. He reminded us that no type of disability makes one less of a person. We must make the effort to identify and actively counteract societal devaluation of some types of disability. We must understand the non-universality of the majority’s ways. They are not always the right way. Just because something works for most of us does not mean that it is the only way things can be done. We must presume competence and recognize that there is a huge difference between knowing how and not having a body that will follow through on what we know. We need to know how to tell the difference in these circumstances and be able to find and provide ways to adapt.
Phil concluded with the reminder that we must be aware of the power imbalance that people on the autism spectrum face each day. Providers are there because they can do something that the client cannot do and needs to have done. This need-beyond accessibility generates the power imbalance. It is imperative that we wield this power very carefully.
Page 10 The Communicator Fall 2006
Tracy Thresher - Real Supports: What works, what doesn’t
The speaking is what I want to focus on. What could I do to let the rest of the world know how badly I want to speak? Can they hear it in my voice or see it in my right hand typing the letters or words? Can they feel it in each word that is read silently? Past the silence into the world of speech I go, wishing my right to softly be in this real world of speech. That is my greatest challenge, to speak my words and type what I want to speak.
I am Tracy Thresher and I want to share my thoughts on using facilitated communication (FC) and having a voice. I have been using FC for about 16 years now. Not being able to express myself was like being in a world of silence. I couldn’t tell people what I liked and didn’t like. People thought I was retarded and that I didn’t understand what was being said to me. It was frustrating and made me angry, so I withdrew. The experience of the world looks different from my experience. Most people take their ability to talk for granted, and I take my inability to talk quite seriously. I live with it every day. It is always there each time someone wants to read my thoughts.
The impact of learning to speak up and have a voice has been quite meaningful for me. I have typed life goals and dreams that have actually come true. One dream of mine was to go to church and be baptized. I told my mother this, and it happened. I have been able to meet with my Pastor and discuss God and the Bible because religion is important to me. I am learning to do the things I want to—teaching others about autism and FC and movement difference. These are things I have wanted to do, and now they are happening. I have spoken about these things I wanted for my life and some have come true. This would never have happened without FC.
One of the barriers to speaking and being heard has been learning to work with facilitators; they don’t always know what to do and have to be told little bits of information at a time. It is also difficult to deal with staff turnover. When staff leave, I have to start all over again. It is hard to deal with someone who isn’t familiar with me or with FC or me with them. The problem of working with new facilitators is looking for the words and they look right back at you, but the words are stuck and don’t come out. What does come out are typed preservations and echoed phrases. Does anyone know what that feels like? That is anxiety at it’s highest! The learning is damn worthwhile when I can let someone know what I am thinking. I teach others about keeping with me when I type something. I want others to know that not being able to talk doesn’t mean there’s a lack of understanding or that the person doesn’t want to share what they are thinking. Letting people know what my dreams, wishes and desires are has helped me manage my anxiety. Not being able to speak doesn’t take away the desire and need to have respect and the attention of others.
Wars of Autism
I want to type about wars of Autism, movement and speech. With Autism my speech is unreliable and the words are stuck in my head fighting to come out. With typing I am able to get the words out and let people know what I am thinking and feeling. Doing facilitation properly requires patience, understanding and training from top notched facilitators like Harvey Lavoy. With that people can know the real me.
Volume of communication is hearing my voice and taking the time to type and talk with me. Wanting to type is one thing, having people to talk to is another. While in Whittier, CA, I had the chance to communicate with several people who listened to me and knew I would respond in my own way by typing. So much of the communication process depends on
Tracy Thresher (right) with Harvey Lavoy
people taking the time to listen and to ask enticing questions. With time and patience I can have some really thoughtful conversations. What works for me is communicating with thinking, patient people that understand my Autism and work through the problems with anxiety and impulsive movement problems and focus on thoughtful communication.
Want to treat people to my interior thinking. Sometimes I think wanting to say the words is what will convince others of how I really do understand. But of course I can’t say the words and passively stand alone hoping the person that is trying to communicate with me will see that I am wanting social contact, relationship and conversation. With a respectful favorite facilitator I can experience those things. Without people satisfying my meaningful typing conversations, I am at risk of being labeled as not understanding, not wanting to communicate, or wanting to do something else.
What my experience has been with trying to communicate before FC was frustration, erratic behavioral times to get my way, and helplessness. Now when typing I can self-express and connect with others in a way that wasn’t possible.
Possibilities…….please take time to hear my voice. Now good proper support from my case manager Rachel and daily proper support from Tristan and with Harvey’s guidance, I am getting real possibilities in my life. The main focus has been to train others. I wanted to be in the limelight doing training for so long. Syracuse, California, Michigan and Illinois training have given my dream the opportunity to present and show people how smart an autistic man is without speech. The really wonderful Marilyn Chadwick and Mayer Shevin have helped make this possible. Meeting Jamie and Sheree Burke was a tremendous experience. I watched Jamie speak his typed words out loud and was so utterly eager to do that myself that I jumped out of my silence and read the first part of a speech I had typed for a Communication Conference in Vermont. With that experience I was on my way out of silence, using a voice that went under-utilized for all of my life. This is bringing a smile to my face as I type it. How heartwarming for a silent autistic man to gain a voice.
Yes, I want to type to fine people out there to hear the sound I make when reading my typed words to you. Do you hear the possibilities?
Tracy Thresher, Trainer and self-advocate
Fall 2006 The Communicator Page 11
Tracy Thresher - Real Supports: What works, what doesn’t
Scenes from the Conference
Page 12 The Communicator Fall 2006
The Person with Autism as Mentor
A report on the presentation
Left to right: Akeem Evans, Rob Cutler, Michael Dowling, Ryan Evans, Amanda Sweeney, Bo Lembo
Robert Cutler and Michael Dowling shared the spotlight with Odyssey High School students Amanda Sweeney, Akim Evans and Ryan Evans and their teacher Bo Lembo, all of Boston. They worked to together to beautify an abandoned patch of land. But, they explained at their session, learning about each other was even more important.
Rob told of his experience with the project:
I love being at the high school. It is a very rewarding job. The first day I was there a young woman came out as disabled by standing and announcing you have a disability so do I. I found out later that she had not spoken in class before that. She, when we were making handmade books, was the only student who could divide one sheet of paper into six equal pieces. Some disability. Not! I can only say that the measured sameness we expect from each of our youths dumbs them down and away from their gifts. We spend the most time mining for the intrinsic value and gifts of each young person before we begin our work.
He then called on each of others, adding more of his perspective:
RYAN, CAN YOU TALK ABOUT FINDING YOUR TRUTH WITH OTHERS WHO DO NOT SHARE IT AND STILL FEELING GOOD? I AM THE HAPPIEST WHEN I HEAR THE STUDENTS SPEAK. RYAN HAS BEEN ONE OF THE BEST TEACHERS OF ACCEPTANCE FOR THE GROUP. WE HAVE SO MUCH TROUBLE WITH DIFFERENCES. RYAN DOES NOT. HE IS ENLIGHTENED. YOU CAN BE TOO IF YOU TAKE THE TROUBLE TO SEE YOURSELVES AND BE A MIRROR FOR OTHERS. HOW DO WE STOP BEING SELF CONSCIOUS AND BECOME SELF AWARE? WE HAVE TO PRACTICE BEING OURSELVES WITHOUT JUDGEMENT. NOT AN EASY TASK.
Each spoke about how the experience changed her/him, particularly by helping them feel included as a part of a community working to accomplish a purpose. Before leaving the conference, the three students each wrote about their experience for this newsletter.
Ryan Evans: Though I still have little knowledge of autism, I will be glad to fight for the misunderstood. For Medicine Wheel, I shall always be more than happy to speak for and support it. That goes for this conference as well.
Fall 2006 The Communicator Page 13
‘60s in Philadelphia 2006 – Autism Network International (ANI) Conference
I’d never thought I would gain an understanding of a time period in American history by going to an autism conference. My main goals for going to Autreat in Philly this year were these: 1) People have been begging me for ten years to go, and 2) I am one of the founders of Autism Network International (ANI), so it would be nice to be at a conference with an organization that was founded by me, Jim Sinclair and Donna Williams in St. Louis, MO, in February, 1992. I went with my friend Joel from Laramie, WY.
How did I learn about the ‘60s from this conference? By being among my own people, I realized that I can ‘let go’ and just be myself. I didn’t have to keep under wraps some parts of myself simply because people wouldn’t understand them. I could totally be myself and realize that I was “groovin’.” It is nice to be among people who totally understand you. Also, it was a communal experience in that we just were. In the late ‘60s, many hippies had Be Ins where they could just be themselves. (I am purposefully excluding the drugs and sex.) I realized at this conference that the ‘50s was the decade of McCarthyism, conformity, Ike, and the start of the Civil Rights movement. In the 50s, people like me were not seen or heard. We weren’t even in the back of the bus. We were hidden in institutions and then not thought about. And people think the ‘50s were great? Great for those white people who were not different or leftist. On a side note, when I was in Philly, I met a Communist whose parents were harassed during the McCarthy period and even the records were destroyed. But then a few people like Jack Kerouac, some beatniks, Martin Luther King, and others decided that America is for all the people, not just the privileged few. And then the young people, flamed by the idealism of JFK and the Peace Corps in the early ‘60s, wanted to make America a better place.
And Autreat taught me that. The young people of the ‘60s, tired of the hypocrisy of conformity, the lies of Vietnam, and fueled by the idealism of wanting to actually help those who don’t share in the American dream, made this country a better place. In fact, without the Civil Rights movement, there would be no disability movement. And not only that, but many of the leaders of the counter-culture of the ‘60s had neurological differences. Abbie Hoffman was either bi-polar or had depression. I believe that Janis Joplin had undiagnosed Asperger syndrome, that Jim Morrison of the Doors had a different brain chemistry (what, I don’t know, I just know that he perceived things differently), plus countless others who perceived things differently and made themselves known and in many ways changed the country for the better.
It was at Autreat that I realized that people need to be themselves to go on in life and need some breathing space to be creative and alive. Also, Autreat was a place where you could ask for help and not be looked down upon. Autreat was a place where you could not worry what others think and just BE. Also, the relaxed pace of the conference helped because the rush, rush, rush of this world is killing people, and we’re not even realizing it. And it was in this atmosphere that I realized that this country needed the ‘60s. People need to be themselves and not always hide who they are, and to me, that is what the ‘60s taught. Akeem Evans: I really enjoy talking about my experiences with people who have autism. The thing that really touched me when I got to know everybody with autism is this: “People with autism are not different from us and you should be treated equally like us.” Amanda Sweeney: It has been a great experience working with Rob and Medicine Wheel to help spread the word about inclusion and acceptance. After Ryan, Akeem and Amanda spoke, Rob conclud-ed: THESE YOUNG PEOPLE ARE MY HEROES. INCLUSION DOES NOT EXIST ANYWHERE TODAY. WE GET CLOSE BUT SOMEONE IS ALMOST ALWAYS LEFT OUT. WE TRY TO TEACH THAT WHAT ONE DOES ON A SMALL SCALE HAS GLOBAL SIGNIFICANCE. WE CAN EACH OF US START EACH DAY WITH THIS IN MIND. IT THEN HAS UNLIMITED POTENTIAL. WHEN ONE LEARNS TO GIVE RESPECT I HAVE TO SAY ONE IS ENLIGHTENED. The Person with Autism as Mentor - continued
Page 14 The Communicator Fall 2006
Introducing our Newest Board Member
Phil Schwarz, 50, has AS, is married to Susan (who is not on the spectrum) and is father of Jeremy, who has autism, and Rachel, who is in the broader phenotype. He is a software engineer by profession.
Phil is vice president of the Asperger’s Association of New England and has played an active role in its leadership for many years. He has also been long active with Autism Network International, including the program committee that plans the annual conference/retreat, Autreat. He has been an active participant in the autistic community and the autism self-advocacy movement on the internet. He brings the connections he has made in these capacities and his knowledge of people and resources to the AutCom Board.
His principal goal as a board member is to advance AutCom’s visibility and clout by fostering greater connection and cross-pollination between AutCom and other organizations, resources, and people across the autism spectrum who are working toward common goals of human and civil rights and greater understanding, equity, and parity for people with autism in the larger society. He’d like to broaden the presence and awareness of AutCom in regions of the spectrum in which it has not historically been associated.
Support the Autcom Bookstore!
The AutCom bookstore, which is available on-line at www.autcom.org, represents one of the most important functions of the organization. In a world full of misunderstanding and misrepresentations concerning autism, the bookstore offers a clear path to what is useful and informative. Every book and pamphlet has been checked against the principles of the Autism National Committee (as stated on the facing page).
Visit the website and check out the selection. Find information about many of your pressing concerns. Tell everyone you can about this resource. It is the best autism-related information available!
Sandi McClennen finds it hard choose, with so much to choose from!
Fall 2006 The Communicator Page 15
Because I endorse the principles of the Autism National Committee, I would like to (circle one):
JOIN NOW RENEW MY MEMBERSHIP
CITY,STATE, ZIP ___________________________________________________________________
I AM A (circle): Family member Person with autism Friend Professional (field_____________________)
Annual membership: $30.00. Persons with autism: $10.00. Supporting membership: $75.00
I am enclosing an extra $_________________ to speed up the good work.
Make checks payable to Autism National Committee and mail to:
Autism National Committee
Wade Hitzing, Treasurer
1045 Wittman Drive
Fort Myers, FL, 33919
The Autism National Committee is a 501 (c) (3) charitable organization. Your contributions are tax deductible and will be promptly acknowledged for your records
PRINCIPLES OF THE AUTISM NATIONAL COMMITTEE
As a member of the Autism National Committee I endorse for all people with autism, pervasive developmental disorders, and related disabilities the development of appropriate community services, including education, residences, jobs/job training programs, and of individually appropriate and adequate support services in all locations for both individuals and their family members; of state-of-the-art communication options for all individuals with unique communicative and social needs; of adequate supports to every family to assist them in maintaining their disabled family member in their home at least throughout the childhood and adolescent years; and the dissemination of available knowledge of those aspects of the disability requiring special support and understanding; the promotion of research to provide parents and professionals with greater insight into the unique needs of individuals with autism and related disabilities; and the use, development, and promotion of positive, respectful approaches for teaching every aspect of life.
Moreover, I oppose the use of institutions to separate people from their communities, and deprive them of dignity, freedom and the level of independence they can achieve in supportive community living; the use of procedures involving pain, humiliation, deprivation, and dangerous drugs as a means to alter and control individual’s behavior; the increasing use of bizarre technology to control self-injurious and aggressive behavior; the widespread ignorance of the basic social and communicative needs of people with autism; and the widespread disregard for the individual’s unique, basic and human needs. I object to programs which disregard the skills, preferences and basic human needs of the people they serve, and I believe that there is no longer need or any justification for using painful and abusive procedures.
The Autism National Committee
Information and Referral
P.O. Box 429
Forest Knolls, CA, 94933
Time to Renew or Join Today!
Annual membership begins in January
(Membership form on page 7)
THE COMMUNICATOR is a publication of the Autism National Committee, Inc., a 501 (c)(3) charitable organization founded in 1990 to protect and advance the civil rights of people with Autism/Pervasive Developmental Disorder and related disorders of communication and behavior. Contributions of articles, information and letters are welcomed. The Communicator does not carry advertising or fund raising announcements, and we reserve the right to edit all submissions. Your comments are actively sought. Send them to Gail Gillingham at PO Box 11245, Main Post Office, Edmonton, Alberta, T5J 3K5, Canada, or e-mail her at:
THE COMMUNICATOR may be copied in its entirety or individual articles reprinted without permission except when otherwise noted. Please credit them to the Autism National Committee.
Officers and Chairpersons
Anne Carpenter, M.S., President
Margo Williams, Vice-President
Anne Bakeman, Secretary Wade Hitzing, Ph.D. Treasurer
Jeff Strully, Ph.D. Past-President
Carolyn Nuyens, Information and Referral
The COMMUNICATOR Committee
Alan Kurtz, M.Ed.
Barbara Cutler, Ph.D.
Gail Gillingham, M.S.
Sandra McClennen, Ph.D.
Douglas McClennen, Ph.D.
Volume 18, No. 1 - Winter 2009
A Publication of the Autism National Committee
In This Issue: Web Site: www.autcom.org
Page 2 & 3: After the College Degree - Jenn Seybert; IOD Summer Institute
Page 4: After the College Degree - Sean D. Sokler
Page 6: After the College Degree - Ian Wetherbee; Poem by Sharisa Joy Kochmeister
Page 7: Getting Good Health Care - Robert Cutler
Page 8: Visit the AutCom Bookstore
Page 9: Policy And Principles Regarding Facilitated Communication
Page 11: Membership form; Principles of the Autism National Committee
Chris & Johnny Seitz
Embracing the Hope and
Joy of Autism
The 2008 AutCom Conference was held in Ann
Arbor, Michigan, on October 17 – 18. Attendance
was outstanding, with more than 200 people from
Michigan, the rest of the U.S. and Canada. On
Friday, Paula Kluth, Anne Donnellan, Martha Leary,
David Hill and Sharisa Kochmeister conducted an allday
workshop: Getting beyond “Behavior” – Including
and Supporting ASD Individuals in Home, School and
Community. Friday evening, Johnny and Chris Seitz
gave us a beautiful mime performance, “God Does
Not Make Garbage,” with a discussion afterward.
Saturday’s presentations included panels on a
wide range of subjects. Jenn Seybert coordinated
and led the panel, “Our Bachelor’s Degrees Are on
the Wall, but Our Journeys Are Far from Over,”
whose other participants were Ian Wetherbee and
Sean Sokler. Their presentations are featured
in this issue, as is Rob Cutler’s. Other panels and
“A Little Experience Often Upsets a Lot of
Theory: Stereotypes about Disability” - Amanda
Baggs, Nick Pentzell, Kassiane Sibley & Sharisa
“Living a Healthy Life with Autism” - Mike Hoover
& Rob Cutler
“Maximizing the Communication Potential of
Facilitated Communication Users” - Pascal Cheng,
Larry Bissonette, Tracy Thresher & Harvey
“Friendships, Dating and Relationships” - Anne
Carpenter, Ian Sterret, and Johnny & Chris
“Neurodiversity: Views from Those of Us Who
Are Supposedly Neurologically Atypical” - Jacob
Pratt, Jamie Burke, Daniel McConnell & Ari
“Life and School As a Teen on the Spectrum” -
Alex Kimmel, Michael Matthews, Dylan Russell,
Krista Shuler, and Andrew Ackner
“Parenting on the Spectrum” - Jim Butler, Jay
Kochmeister, Phil Schwartz & Paulette Wyman
Future issues will feature other presentations.
Save This Date!
AutCom 2009 Conference
September 25 – 26
Nashua, New Hamshire
Crowne Plaza Hotel
Page 2 The Communicator Winter 2009
Jenn Seybert with her mother, Kendall
Le Moyne College
B.A. (Psychology), 2006
It has been one hell of a journey with many twists
and turns and ups and downs. I sat for 24 years in
silence not being able to be understood or be heard.
The rage and frustration is too hard to share.
I sat in self-contained classrooms except
for specials as adaptive phys-ed, music, art and
assemblies. The whole time I was in school, there
were minimal academics taught. The mind-set was
no inclusion in any area of the school setting, and we
were spoken to in a condescending manner. After all,
our I.Q. showed we were retarded and simple. For
the most part, my teachers were lovely, but there
were a few I wish would have dropped off the face
of the earth.
You can see a pattern evolving here, just time
spent doing very little, with no one listening or
questioning the frustration. Then, after 21 years
being in the system, I graduated with my neurotypic
peers. What a great feeling I had with this
experience, but this feeling was shared with
emptiness inside knowing I was not a partner in this
graduation, only in a bodily sense.
I wanted more. I wanted what they had. I wanted
to have an education and decided that night that
somehow I was going have this.
As the weeks moved on, my peers sought
employment or went off to college. I went to a
workshop to put paint sets together, stack cups and
other mundane trivia. At least I had the education
to back this venture! I was retarded and this was
I was fortunate to be freed from the world of
retardation on July 18, 1995, when I was evaluated
for Facilitated Communication (FC). Not only the
label of being retarded was removed, the label
of having intelligence was attached. My life was
open from the dark hell I was attached to and the
opportunity this miracle gave me, and is still giving
me, is overwhelming.
It took about a year before I was ready to move
on. I had, along with my family, many adjustments
to adapt to in my new circumstances. Trust played a
very important role here, and trust was and still is a
hard lesson to learn.
The next step in my life was to develop a life. A
new dear and trusted friend stepped in and taught
me the way to respond to accessing my dreams by
helping me sort my thoughts so I could set goals
and master them. This is called Person Centered
Planning and is a process as you strive to become
self-determined. This process for me allowed me to
pull away from the dark hole of autism and realize I
could have a more enriched life. Regardless of the
positive end results staring at me, it still became a
struggle of emotions as I evolved.
I wished to meet others who used augmentative
communication as I, so The Lonesome Doves were
born. I wanted to seek my life-long dream of going
to college, and that became a reality as I entered
Penn State University, taking one course at a time
until I was ready to add another and another. I was
able to carry 9 credits each semester and still keep
a 3.0 or better.
In 2001, my father accepted a new position in
Central New York, and I chose to move with my
parents. I transferred 33 credits from PSU to
Le Moyne College in Syracuse where I graduated
in May, 2006, with honors. That fall I applied all
my graduation monetary gifts and took my first
I wanted to continue with my education but
was not sure what avenue to proceed on. After my
graduate course was over, I realized I needed time
to figure out my next step.
I was accepted into New York State Partners
in Policymaking Training in March, 2007. This
commitment was for eight months. I graduated from
Our Bachelor’s Degrees Are On the Wall, But
Our Journeys Are Far from Over
Winter 2009 The Communicator Page 3
there in November, 2007. I found the information
valuable and applicable to my current journey.
Following are some of the “happenings” that have
occurred in my life that I want to share with you.
I am active in the community. In October, 2006,
I attended a Community Leadership Retreat and
represented the Central New York Self-Advocates.
I continue to serve on the Community Participation
Steering Committee through the Central New
York Office of Mental Retardation/Developmental
I have been published in books and journals. I
have given presentations in many states and in Bolton,
Manchester and Liverpool, England. I am a member
of the Board of Directors of the Autism National
Committee (AutCom); an Associate of Networks
for Training and Development, and with The New
York State Disability Advocacy Association and
On March 24, 2007, I took the step of typing
independently, with only a light touch on the back
of my elbow for support. I love the freedom it gives
me but draw back because the hard tug from the
autism within keeps trying to pull me back inside,
not allowing me the feeling of total excitement. My
support is growing less as my facilitator is lightly
touching the top of my arm for feedback. I will type
Being involved in community activities near and
afar, there was a piece of me that was empty. I
still felt the need to continue my education. I was
so bored at home. I began to explore different
programs online and locally and chose to apply to
Syracuse University in their Masters program of
Disability Studies. While waiting to hear, Le Moyne
College offered me an acceptance in their Education
Department for a Masters in General Education. I
was very touched by this, but in the end I didn’t
know where I could seek employment.
In January, 2008, I registered for my first SU
graduate course. I felt it would be wise to familiarize
myself with a much larger university compared to
the small college I came from. I was overwhelmed
at first because there is a vast difference between
graduate school and undergraduate school.
Finally the letter I was hoping to receive arrived
this past February! I was accepted into the Masters
Program in Disability Studies at Syracuse University
for this fall’s term!
I work hard and read several hundred pages of
assignments a week depending on the class. I have
bloodshot eyes and am sleep-deprived depending
on the week. When the griping is done, I am having
a great time. We have brown bag lunches with
fascinating speakers. I have joined the group called
Beyond Compliance that concerns itself with looking
after students with disabilities on campus, arranging
for speakers for brown bag lunches, and setting up
movie nights with a disability genre. There are also
great get-togethers at The Incomplete. There,
wine comes in red or white, beer comes in thirteen
different brands. The food is great if you like hot,
spicy and fried.
One of the privileges of being a grad student,
I have been invited to sit with the Facilitated
Communication Institute (FCI) and be a part of the
planning committee, along with other grad students,
for various events happening on campus.
From the time I was able to communicate, the
driven feeling I had was to reach out and share
what I could about autism. I have also worked with
individuals and families to help these folks with
their issues and for family members to develop a
greater understanding and insight into the world of
The field of Disability Studies is exactly the
way I wish to follow my pursuit in developing skills
and information to guide, direct, listen and become
someone for those in the area of disabilities to rely
on. My Bachelor degree is in Psychology and has
provided me a solid base on which to now build. Herb
Lovett has had a profound effect on me. I plan to
continue to follow his legacy throughout my career.
I am enclosing an additional $ to speed up the good work!
Send the above information and a check in the appropriate amount to
Anne Bakeman, AutCom Treasurer
3 Bedford Green
South Burlington, VT 05403
Winter 2009 The Communicator Page 11
Time to Renew or Join Today!
Annual membership begins in January
(Membership form on page 11)
Autism National Committee
Information and Referral
P.O. Box 429
Forest Knowles, CA 94933
THE COMMUNICATOR is a publication of the
Autism National Committee, Inc., a 501 (c)
(3) charitable organization founded in 1990 to
protect and advance the civil rights of people with
Autism/Pervasive Developmental Disorder and
related disorders of communication and behavior.
Contributions of articles, information and letters
are welcomed. The Communicator does not carry
advertising or fund raising announcements, and
we reserve the right to edit all submissions. Your
comments are actively sought. Send them to:
619 N. Sheldon Rd.
Plymouth, MI 48170
or email him at: firstname.lastname@example.org
THE COMMUNICATOR may be copied in its
entirety or individual articles reprinted without
permission except when otherwise noted. Please
credit them to the Autism National Committee.
Officers and Chairpersons
Sharisa Joy Kochmeister, B.A.,
Sandra McClennen, Ph.D.,
Pascal Cheng, Secretary
Anne Bakeman, Treasurer
Anne Donnellan, Ph.D.,
Anne Carpenter, M.S., Past-President
Information and Referral
The COMMUNICATOR Committee
Barbara Cutler, Ph.D.
Escaping The Glass Bubble Through Facilitated Communication
by Mary Lapos, M.S.
Imagine yourself as the person you are now and then imagine yourself not being able to speak or move the way you presently do. Imagine that you have had a stroke or have developed Parkinson's disease or some similar disorder. It wouldn't take you long to figure out that when you can't speak either clearly or at all, and when you move in different or unusual ways (or don't move at all!), it is very difficult to help other people come to know who you really are.
If you have had something go wrong with your health as an adult which affects your speech and movement, at least some people had a chance to get to know you before these important circumstances changed. Those people have a "picture" of you that they hold in their mind even when your talking becomes unclear or when you can't control your hands and your body. That "picture" allows people around you to continue to think of you as a competent person.
But when you are born with difficulties in the areas of speech and motor or movement control, people come to know you in a very different way. They see you, perhaps, as incompetent or less capable. The trouble is, there is no chance to convince them otherwise if you can't speak and don't move very well. The labels "mentally retarded," "autistic," "developmentally delayed," and the like frequently result.
Recent research efforts and articles in professional journals (Leary & Hill, 1996; Williams, 1994) suggest that (contrary to what we have always thought) some people who don't develop speech and who don't "respond" to their environment and other people in typical ways may not always have mental retardation. They may be competent people who just can't speak or physically respond to their world in typical ways. This is truly a trap for the affected person, like being frozen in a glass bubble. You see and understand everything going on around you and everyone can see you, but you say very little or nothing and your movement is very limited. Others can't understand who you really are.
For some people who have been known as mentally retarded, autistic, or developmentally delayed, all this is changing. Through a process which supports communication in a different way, we are beginning to understand who these people truly are. That process is known as facilitation or, in this instance, facilitated communication training.
Facilitation provides necessary physical support so people can move in purposeful ways. Typically, for people who can't speak and who don't have reliable hand movement, that means physically supporting them so they can point to or select in some fashion with their hand or fingers desired pictures, words, or letters. In this fashion, some people effectively communicate by pointing to pictures or whole words. Others are capable of typing complex thoughts.
In the early stages of using facilitation, the most frequent type of physical support involves stabilizing the hand and forearm of the new communicator. The person who does this stabilizing is called a facilitator. The facilitator uses various hands-on techniques to enable the person to reliably point to symbols, words, and letters in order to communicate. As the training progresses and the person gains skill, the objective is to reduce the support offered by the facilitator and for the person to gain independent physical control of their own movement so they can select pictures, words, or letters by themselves.
Early research into this process suggested that there was a strong possibility that letter selection on key boards was more a product of the facilitator's intent than a product of the person with the communication difficulty. The facilitators appeared to be creating the typed messages. Reports quickly circulated via media "exposes," suggesting that there was little benefit to be derived from involving people in facilitated communication training.
That was then ( 1992-1993); this is now. Recent research (Cardinal et al., 1996; Sheehan & Matuozzi, 1996), which is essentially quite different in form than earlier efforts, has discovered that, under specific conditions, some people are indeed able to produce typing that is authentic - produced by the user, not the facilitator. The new research has shown us that facilitation is very sensitive to the conditions under which it is tested.
Simple things like
Practice of the process
Accommodating sensory issues
Providing wait time
Creating supportive relationships
all appear to be important variables to successful communication attempts.
These newer findings in people who are described as developmentally disabled parallel the literature from other disciplines such as neurology and neuropsychiatry (Damasio, 1994; Rogers et al., 1991; Sacks, 1995; Sacks, 1990; Sacks, 1987). Work with patients who are described as having Parkinson's disease, Tourette's syndrome, catatonia, among others, informs us that these groups of people can be observed to engage in very similar behaviors and have many of the same issues as many people with the labels of autism, Down syndrome, and PDD (Pervasive Developmental Delays). Not surprisingly, they respond in much the same way to their environments and the people around them and they benefit from many of the same adjustments that have been incorporated into the newer research around facilitation.
Developmental disability has always carried with it the inference of mental retardation, which has created major barriers for supporters in their relationships with people who might benefit from facilitation. However, learning, motivation, and physical control issues present in much the same way in all these people, whether they are known as developmentally disabled or neurologically impaired.
Research is beginning to support the concept of facilitation as a viable process for people with severe communication disorders, and in fact increasing numbers of people have achieved independent communication after several years of practice. These individuals are able to type their thoughts completely independent of any involvement from a facilitator. I have worked with a young woman who now produces and edits her own newsletter - independently. I know a young man who has undertaken his own research into the difficulties experienced by people with severe communication disorders similar to his own. He has gradually become able to type his responses to research questions independently. Many others, of school age, are finishing up their elementary and high school studies and taking their exams independently. However, all began their journey toward full communication and self-determination with the support of a facilitator and continued the trek, putting in the long hours of hard work necessary to achieve independence.
Jennifer, who is a young adult with autism, has been the key person in developing her own behavioral support plan. She has been able to be very specific in describing her internal perceptual circumstances. Some of Jennifer's suggestions to her supporters involved major life changes; others involved seemingly insignificant factors which were supporting her difficult behaviors. Armed with that information, those working with her have been able to significantly reduce many of her major behavioral problems. Concurrently, after only 14 months of facilitated communication training, Jennifer is approaching independence. Her desire to achieve that goal is tremendous, as is her willingness to make the effort that it requires.
In addition, Jennifer's new-found communication skills and the accompanying boost in confidence they have given her have spilled over into other areas of her life. She is now printing independently, playing board games independently, and trying out new activities. She is clearly a bright, energetic young woman who has finally escaped the glass bubble and some of the labels which had been her life until 14 months ago.
If her communication had been stopped when some called her method of communicating a hoax, Jennifer might well have gone on being viewed as a less-than-thinking being; instead, she is now seen as the vibrant, funny, and intelligent person that she really is. How many other Jennifers exist out there, living their lives frozen in glass bubbles, waiting for an opportunity, waiting for the rest of us to see them for who they truly are?
Facilitated Communication (FC) was devised by an Australian, Rosemary Crossley, thirty years ago. Rosemary Crossley worked in an institution for people with severe disabilities. She asked a patient who had cerebral palsy to come and live with her and tried to find an alternative to speech in order to communicate with her. She wrote a book entitled "Annie's Coming Out", which is based on their experience. According to Rosemary Crossley, the difficulty that some disabled individuals have with language is not cognitive but due to the fact that they have a problem expressing themselves; as a result their intellectual skills tend to be underestimated but once they are able to communicate they often reveal unexpected understanding and academic skills. She believes that when individuals' communication skills improve they tend to become more confident and independent. She founded the DEAL Communication Centre in 1986. The charity based in Victoria, Australia, assesses individuals needs and tries to find some means of communication for people who have little or no speech; it also provides training for parents or carers.
How does it work?
The aim of FC is to help individuals with limited or no speech find other ways of communicating using Alternative and Augmentative Communication strategies (AAC). The technique involves gesture and body language such as pointing, eye gaze, touching or sound. A "facilitator" helps a child or adult by giving them physical support, for example holding their hand, wrist, forearm or finger while they point to objects, signs or letters or even type or write. Each session is individualised. After assessing the client, the "facilitator" chooses a specific type of communication or technique which is appropriate to the needs of the client:
-Graphics: pictures, drawings, abstract symbols, text
-Concrete objects touched or pointed to.
Various tools and devices may be used such as: alphabet or picture boards, mouth or headsticks, switches, keyboards or typewriters and synthesisers. Emotional support, for instance giving encouragement, also plays an important role in FC.
FC is very controversial, Douglas Biklen, from the Facilitated Communication Institute at the Syracuse University in America, claims that "Facilitated Communication is not a cure for autism or other developmental disabilities...but a means of communicating". Opponents to the technique argue that the "facilitator" can influence or manipulate the users as they attempt to point or type and therefore do the communicating. Recent scientific studies have not been conclusive:
- Mostert MP. Facilitated communication since 1995: a review of published studies
J Autism Dev Disord 2001 Jun;31(3):287-313.
This review critiques and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.
- Gorman BJ. Facilitated communication: rejected in science, accepted in court-a case study and analysis of the use of FC evidence under Frye and Daubert. Behav Sci Law 1999;17(4):517-541
http://crow.open.ac.uk/education-and-languages/research/groups/chdlrg/cdmhsn/projects.htm: Facilitated communication in Autism Andrew Grayson is completing the third year of a project on facilitated communication with adults with communication disabilities, involving the fine-grained analysis of video records.
Facilitated Communication Institute
In recent years, TASH has reached out to support self- advocacy and self-determination. This is reflected in TASH conference keynote addresses by people with disabilities -- Sandra Jensen's address this year-- in the participation of self- advocates in the conference and on the Board, in their support of the Home Of Your Own coalition, and in collaboration with ADAPT and other disability rights groups. It is also reflected in TASH's commitment to pursuing science that makes a difference in people's lives by supporting self-determination and inclusion.
The issue of facilitated communication has often been cast as a scientific issue: i.e. is it real or not? It is also a political issue: i.e., what kind of research should we do and to what end; should we support facilitated communication users and, if so, how; and what responsibility do schools and agencies have for allowing and supporting facilitation? This article suggests that TASH members cannot support a self-determination agenda by remaining silent on the facilitated communication controversy. As with every other issue we address, a commitment to science, self-determination and inclusion can and must go hand-in-hand.
Whose Side Are We On?
Lucy Harrison has autism and until her early teens was assumed to be moderately retarded and unable to read. In 1989 she began to learn to express herself using facilitated communication. Since then, she has appeared on two television programs (including ABC Primetime Live and NBC NOW) and has been written about in the New York Times Magazine. Currently, she takes college preparatory high school courses in English Literature, Mathematics, Science, and History, and has plans to attend college next year.
Two months ago, Lucy Harrison gave a presentation at a conference on autism sponsored by the Geneva Centre in Ontario, Canada. She spoke her speech -- recently she has been able to read aloud what she types with facilitation. She still cannot speak conversationally in sentences, but she can read her own prepared text.
Despite her successes, she recognizes and worries about the controversy surrounding facilitated communication. The world may appreciate the controversy, seeing it as a kind of contest, but she wonders at what cost. "Will voices be silenced forever? This is the fear that haunts me." "Perhaps one day," she writes, "I will look ... and see really free people. But today there is thick confusion, too much pain, and trash of dreams."
It seems to me that the question facing TASH members and other people in the field is where to locate ourselves in the debate. Unfortunately, the debate usually boils down to whether the method is real or not, legitimate or hoax, a way of eliciting words of people with communication impairments or words of their facilitators. This way of framing the issues clouds real understanding.
We already know that in some studies all of the facilitated communication users were unable to prove they were authors of the words typed with facilitation. Yet we also know that in some studies the majority of those tested were able to prove they were typing their own words (see the annotated bibliography in this issue for examples of both kinds of research). Predictably, researchers will continue to explore the issue of authorship as well as many other questions about the method.
But as Lucy Harrison explains in her writing, this is more than an academic debate. It is a struggle over whether certain people will have any voice at all and whether the world will hear them:
The battle will continue and there will be many casualties. There will be people who will reach the end of their lives without having a chance to talk to the family and without a chance to show who they are inside. I hope that there is a heaven where at last they will be free.
Action Steps for A Change
The last seven years of research and experience with facilitated communication provide a solid basis for formulating a progressive agenda on facilitated communication. The following are action steps that TASH members can take to support people who use facilitated communication or who might benefit from learning to communicate with facilitation (please note that these apply not only to facilitated communication but to any situation involving people whose communication has historically been disregarded or suppressed).
Know what the method is and what it is not. Facilitated communication is a means of communicating through pointing, with physical and emotional support from a communication partner. It may be useful for people who cannot speak or whose speech is limited and who cannot point reliably. Facilitated communication is not a cure for autism. It does not work for everyone. It does not guarantee high level communication for all who use it.
Support the right of people to communicate and to prove they are communicating. The TASH Resolution on Facilitated Communication supports the right of individuals to have access to any method that might help them, the right to speak freely, and the right to prove that they are communicating their own thoughts. Whenever educators try any method, they cannot be sure whether it will succeed with a given individual. But one thing is certain about facilitated communication and every other method, if you do not try it, it cannot work. And you will never know if it might have worked.
Support people to use the method in everyday settings; this means making sure that schools provide equipment, facilitators, appropriate training, and assistance to families so that they can learn about the method. In 1994, Sharisa Kochmeister addressed the TASH conference through typing; she is a person who at one time had a measured intelligence score of 10. She does not speak. She learned to communicate first through facilitated communication and now types without physical support; her father, step mother, and sister need only sit nearby for emotional support. Sharisa accomplished this level of independence after several years of using the method and with extensive support from family, school, and other interested friends.
At the 1996 conference of the Autism Society of America, Lucy Blachman typed without physical support. Yet she needed to have her mother sitting nearby. Since 1989 when I first met her in Australia, she has earned a Bachelors degree at Deakin University and is currently enrolled in a Masters Degree program at Melbourne University.
When I first observed her at her high school in Victoria, she needed arm support from her teaching assistant/facilitator. And under some conditions, particularly with a brand new facilitator, any communication at all was problematic. Yet even then, in 1989, I observed that with her mother's or Rosemary Crossley's hand resting on her shoulder, she could type out conversational text.
Lucy Blachman, Sharisa Kochmeister, and Lucy Harrison and many others have done well with facilitated communication. Each has attended regular classes, had the assistance of facilitators in school, had communication equipment available to them, had excellent training in facilitated communication, and had intense family support.
Be knowledgeable about the most controversial aspects of the method. Facilitated communication became especially controversial when fc users purportedly typed allegations of sexual abuse. Some of these allegations were found to be groundless. Others were found to be accurate. Recent law review articles (Dwyer, 1996; Phipps & Ells, 1995; Maurer, 1995; Luxton, 1995) and court decisions (Kansas v. Warden) have concluded that people who use facilitated communication must not be denied access to the courtroom just because they use an untraditional mode of communication; to deny them access to the courtroom would be a violation of the Americans with Disabilities Act and of the Due Process clause of the Bill of Rights. Simply put, individuals who make allegations must have a chance to prove that their words are their own. Then, courts will have to decide, as they must in cases involving speaking individuals, whether particular allegations are true or not.
Call for research that is sensitive to people's disabilities. In several studies, most of the individuals tested were successful in proving, under controlled conditions, that they were authors of the words they typed with facilitation (e.g. Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; and Weiss, Wagner, & Bauman, 1996). These studies appear to include disability- sensitive protocol conditions that are different from most studies in which all or most individuals being tested have failed. Such conditions include extensive practice, natural environments for testing, extended time for responding, involvement of the fc user in designing the study conditions, constant feedback and so forth. Such tests prove that it is possible to test facilitated communication, but that not any old test will do. Educators and parents need to advocate for test protocols that are disability- sensitive. Otherwise, we allow research to discriminate against the people being tested.
Support facilitated communication users to be in control of their own words. A major limitation of facilitated communication is that at least for some people it is easy to influence or cue their communication--of course it important to recognize that all communication, including all augmentative communication, involves various kinds and degrees of cuing. And, in complex ways, all communication is co-constructed. This poses a significant problem in any communication situation where there is a real or potential imbalance of power among those involved; how do we ensure that people who use the method are supported to author their own words? Here are some suggestions:
Be patient and try not to anticipate what a person is going to type; facilitated communication, like all augmentative systems, is much slower than speech and requires the communication partner to wait for what is being produced.
Provide feedback. Let the person know what you are reading from their pointing and when you are not sure what the person is pointing at, say so, asking the person to point again. Also provide feedback and support in terms of how the person is typing; don't facilitate if the person looks away from the letter board, computer keyboard or other target -- looking away leads to many errors in pointing and to reliance on the facilitator to guess what the fc user intended.
Ask clarifying questions. There should be numerous situations in a conversation where you are not certain about what the fc user means. Ask for clarification: i.e. "I'm not sure what you mean? Could you explain that?"
Encourage the fc user to feel comfortable making real choices.
Encourage the fc user to state his or her own opinions freely and to disagree with you as much as he or she wants. If the fc user never disagrees with the facilitator, this is probably a good sign that the fc user is not taking control of his or her communication.
Encourage the fc user to work toward and achieve independent typing for some or all of his or her communication. As Rosemary Crossley (1994) has explained, independent typing is a realistic goal for most fc users. But as we have found in our research, people who use facilitation are often not convinced they can achieve this goal or that it is even worth working on, unless they have a lot of support to do it (see Biklen and Cardinal, in press).
Encourage fc users to have many facilitators. This will maximize opportunities to communicate across multiple settings. Also, multiple facilitators will come to see that the individual who uses the method has a distinctive style, distinctive themes, and will share information across multiple facilitators; my colleagues and I discussed this in an article entitled "How Teachers Confirm Authorship of Facilitated Communication," which appeared in the Spring, 1995 issue of JASH.
Read the writings of authors who use the method. As individuals get good at using the method--some are achieving greater levels of independence and some develop extremely distinctive styles of composition-- we have a new opportunity to learn about how a group of people with disabilities experiences disability. I especially recommend Birger Sellin's autobiography, recently translated from the German language: I Can't Live Inside Me Anymore(1994) and Sue Rubin's opinion editorials in the Los Angeles Times. (1995a, 1995b). These are provocative works, for they give insight into breakdowns in communication, problems with excessive stimulation in the environment, and the dangers of how mental retardation is currently assessed.
Don't be afraid to speak about the accomplishments of people who use facilitated communication. Sharisa Kochmeister types now types without physical support. Sue Rubin and Lucy Harrison are planning to attend college. Jeff Powell has published some of his poetry. Birger Sellin's book offers valuable new insights into autism. We need to share this information with educators and communication specialists; these are important accomplishments that could give encouragement to thousands of others.
Learn from people with disabilities about how the method works and how it best might be tested. Encourage thoughtful research on the method, especially research that honors the perspectives and advice of people with disabilities, including facilitated communication users. Donna Williams, author of Somebody Somewhere, Nobody Nowhere, and Like Color to the Blind, reminds us that unless we learn to listen to people with autism, we will not have a clue about how a person with autism experiences the world. Here is what she says in her 1994JASH article about testing:
The person with autism, in my view, learns quickly that the ways of people who do not have autism do not work for them. What is more, I feel they learn quickly that when they attempt to manage or sort out (and, inevitably react to and be frustrated by) their own systems' chaos, people without autism will generally treat their attempts as a "problem" and will interfere like dentists working with garden tools who refuse to admit their way may not be the only comprehensible and right way of managing things and learning. One result for this may be that people with autism generally learn to "smell out" the dentists who come along with garden tools and arrogant assumptions.
Larry Bissonnette, an fc user who types with just hand-on-the- shoulder support, made a similar point when he wrote,
You cannot learn titling of disability unless you imprint real experiences of people who live with limitations of lasting intensity on property of esteemed scientific inquiry.
At the 1995 TASH Conference, Eugene Marcus gave a presentation on how he learned to do the name-the-picture style authorship test of facilitation first described by Wheeler and his colleagues at the O.D. HECK institution in New York State. Initially he found the test format very difficult, but with practice and several other minor modifications, he was able to use that protocol to prove he was communicating his own words. His research will appear in my forthcoming book (co-edited with Don Cardinal) entitled Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy.
Presume competence, not incompetence. Current views of mental retardation still focus on deficits (i.e. what are the personþs limitations?); it is time we began to challenge how mental retardation is assessed. The idea of presuming competence is an important rule for educators. It places the burden for success equally on the teacher as well as the learner. Any failure to elicit evidence of competence always begs for a new strategy or approach, a new way of finding ability. We have enough evidence from facilitated communication as well as from accounts of other augmentative communication aid users such as Christy Brown (My Left Foot), Ruth Sienkiewicz-Mercer (I Raise My Eyes to Say Yes), and Christopher Nolan (Under the Eye of the Clock) to know that had their parents or teachers not kept trying with them, they would never have succeed to the degree they did. Each of them proves the point that not being able to speak is not the same as not having something to say. Historically, many individuals who today are recognized as being very capable were formerly kept silent and presumed retarded. And presumably many more are still silenced. It is time to abandon the deficit model and embrace the presumption of competence.
___________________________________________________________________ Facilitated Communication Revisited
Contributed by Nancy Kalina
In its brief time in the public eye, facilitated communication (FC) has generated an incredible amount of publicity and controversy. In one sense, the controversy is surprising since the techniques used in facilitated communication are similar to the techniques used by parents, teachers, and therapists for many years. On the other hand, the controversy is very understandable, since facilitated communication challenges how we view the individual whom we are attempting to support.
As we embark on the summer of 1995, it seems like a good time to take a step back and think about the actual application of facilitated communication. Lets begin by defining the word facilitation. Facilitation is a strategy that can be used to assist people to make voluntary movements, whether it is to use a spoon, to make a selection from a supermarket shelf, to use scissors, to kick a ball, or to write. In other words, facilitation is a tool to assist a person in accomplishing an act. Building on this notion, facilitated communication could be defined as a technique to assist an individual to communicate his/her thoughts. More specifically, facilitated communication involves physical, emotional, verbal, and conversational support which assists the person to make selections on a keyboard that spell out his/her individualized message.
The physical support generally involves backward pressure applied to the hand, wrist, or arm. This pressure creates a resistance that the person who is typing must push against to make a selection on the keyboard. Physical support is not limited to supporting the individuals hand or arm. Support also includes positioning the person while typing, positioning of the keyboard to the person, and selecting and/or adapting the augmentative communication device.
Emotional support is more involved and harder to describe. It involves two general areas. The first is treating the individual as a competent, intelligent person who has important messages to contribute.
The second facet of emotional support is providing verbal encouragement, reassurance, and a safety net. It has been described by many people who facilitate that it is a tremendous risk to communicate not knowing if you will be listened to or taken seriously. It is the facilitators responsibility to create an atmosphere of safety upon which the person can rely. Creating a safe environment includes:
Listening to what the person has to say.
Not judging what the individual has to say.
Responding, both verbally and behaviorally to the person.
Telling the person that what he/she has to say is of value and is important to be shared.
Not talking and being patient while the individual collects his or her thoughts and types them out.
Supporting the person while he/she determines what works for him/her. For example, a person may need to decide what is the most effective way of communicating once he/she is already upset.
Allowing the individual to have private conversations.
Informing the person that his or her information will not be shared with anyone unless he/she gives approval.
Horses are like magnets for humans. People of all ages have drawn to the horse because of their beauty, grace, power, majestic stature and the mystery of their noble being. It’s been that way throughout recorded history. In modern times, it has been clinically documented that just being around horses changes the brain wave patterns of humans. We calm down and become more centered and focused in the present when we are with horses. We are transformed in a very positive way when in the presence of horses. It is no wonder that the beneficial effects of positive and appropriate interaction with horses should prove therapeutic to grownups and children alike.
I first discovered Equine Facilitated Learning nearly ten years ago when I began researching, via the Internet, various ways people were interacting with horses. The North America Riding for the Handicapped Association (NARHA), a non-profit, national organization here in the United States, had a new program called the Equine Facilitated Mental Health Association (EFMHA). These particular programs sought to focus help not so much for individuals with physical challenges, but rather centered on the emotional and mental health development of children and adults when they were put in the company of horses and guided appropriately through positive interaction. Startling improvement was observed in children with various mental and emotional challenges from A.D.D. to Autism, to anti-social violent behavior. Great improvement was seen ‘across the board’. This interested me a lot as I have always believed that horses can produce positive mental and emotional effects within the humans around them if the interaction was appropriate. So I visited several places offering training in this new field and took their courses.
Upon returning to my ranch on Maui I began The Maui Horse Whisperer Experience, which was an experiential, interactive, hands-on experience of horses for non-horse people (experienced horse people and horse owners were invited as well). The positive effects of this type of successful inter-species communication were immediate and, sometimes, life altering. The confidence and self-esteem of individuals who were able bond and communicate with the horses dramatically improved and the improvement was immediate. People would drop their projections, misconceptions and judgments about the horse and themselves once the communication became conscious, mutual and appropriate.
For children with mental and emotional disorders the positive benefits of the experience with the horses was frequently profound. Children with Attention Deficit Disorder would magically focus on the horse for long periods of time when either grooming or leading the horses. Once they understood how to ask for and receive cooperation from the horse, their self-esteem went sky high. What a wonderful sight it is when I see a shy, withdrawn, fearful child standing tall and confident as they lead a 1200 pound animal through an obstacle course of a series of twists, turns and stops. Autistic children who would come to me mostly withdrawn and very much in their own world, would begin to say new words and attempt to express themselves as rarely seen by their parents and therapists. Given the lead rope of a horse they would proudly lead the horse around the ranch for extended periods of time and not want to give them up. Observers would stand there with mouths a gasp and tears streaming down their faces to see such profound and wonderful response in their children and wards. Once again the horse is easily recognized as a positive force and influence for humans.
Equine Facilitated Learning is gaining popularity across this country and around the world. Prisons have instituted similar programs to assist in the rehabilitation of inmates. Wild horses are given over to some prisons so the prisoners can train and gentle them to get them ready to be adopted out. Techniques are shown the prisoners on how to gently communicate with a fearful horse and develop the trust needed to help the horse accept human contact and interaction. The inmates discover that respect, gentleness, mindfulness, compassion and kindness go a lot farther than brutality, dominance and force. These programs are so successful as to have become the single most effective form of rehabilitation for the penal system today.
At about the same time The Maui Horse Whisperer Experience came about, I began ‘Leading With Quiet Strength’. This is a leadership/teambuilding program developed for corporations seeking to advance the leadership qualities and skills of top executives. There are now a few programs across the country that focus on these goals for the corporate world utilizing guided, successful interaction with horses. In this age of corporate greed, poor management, distrust, and wide spread fraud, a program that teaches responsibility, accountability, respect, trust and mindful interaction was a natural development for Equine Facilitated Learning. My current list of clients includes; AT&T Wireless, GM, Charles Schwab & Associates, Murtiz Group and others. Enlightened leadership is a goal being pursued by many top organizations around the world. Accountability and responsibility are taught through interaction with horses and the feedback is immediate. Success or failure of the interaction and communication is tossed back into the face of the human right away in the response of the horse. If there is a problem, it can be quickly recognized and corrected by the human. Once everything is back on track, the interaction again becomes successful. A horse forgives us our mistakes. If a horse is abused by a human and eventually the human changes their way of dealing with the horse, the horse will forgive the human their mistakes and accept the friendship if it is offered appropriately.
The principles of Equine Facilitated Learning are basic and easy to understand. The horse is the perfect mirror of the human that is with it (horses do not lie). The horse is looking to have feelings of safety and peace always. This is because the horse is a ‘prey’ animal always looking over its shoulder for the ‘predator’. If the human is trying to control the animal for whatever reason, this produces fear within the horse. If the human is unconscious around the horse, this makes the horse fearful as well. If the human is disrespectful of the horse (inappropriate touching, movements, sounds, thoughts or feelings), this produces fear with the horse too. When the human begins to make conscious and appropriate requests, rather than demands, of the horse cooperation begins to happen. When a human waits for and notices responses of the horse to the human’s communication, that is showing acknowledgement and respect for the horse. Trust and respect are earned with horses in much the same way as with people. The ‘golden rule’ applies to horses. However, with the added aspect of great guidance and leadership coming forward from the human. It is the human’s responsibility to approach the horse as a great parent approaches a child. Along with the love, compassion, patience and consistency of a great parent, comes confident, skillful, knowledgeable guidance and leadership.
In the wild the horse gets its sense of peace and safety from the herd leader. Unfortunately for the domesticated horse, there usually is no great human leader filling that role of the herd leader. Relationships between domesticated horses are somewhat aborated, as stables and barns are an un-natural environment for horses. There are no humans making appropriate requests that the horse can follow and comply with. Horses miss this good leadership. What normally is the case are humans making unconscious, inappropriate demands, trying to control this big beast through dominance, punishment and restraint and abusing the animal through ignorance and misconception. Compliance is frequently done through bribing with food or inducing fear. A child, even one with mental or emotional disorders, given a little insight into joining appropriately with a horse, becomes the natural leader the horse is looking for. Peace abounds and cooperation and compliance come forth from the horse when the communication from the human is kind and appropriate. Actually, children can become successful with a horse quicker and easier than with many adults. This is because children are frequently less judgmental and more open to ‘heart to heart’ forms of communication than adults who seek ‘to control’ much of the time.
Simple, clear, conscious requests are what the horse is looking for. Stop, go, backup and turn this way or that, are examples of simple requests that a human can make of a horse, clearly and consciously. When the horse complies a thank you in the form of a “Good Boy”, is all that is needed. Horses understand acknowledgement. They know that they are being respected and acknowledged when praise is offered. I am not talking about fawning over a horse because it is compliant. Overdone praise becomes shallow and meaningless. A simple “Good Boy (or Girl)” is all that is required. There is a balance to be struck. We humans seem to have a tendency to either over do or under do something. Being out of balance has become our way of being in the world. There is a natural balance to a horse’s being. There is to ours as well but we do not see or feel it because of our need to ‘control’. This puts us out of balance a lot in our lives. We are either too much or too little. Or, at least it seems that way. Appropriate, successful interaction with horses can lead us back to that natural balance because to be successful with a horse that balance has to be present in the communication. Equine Facilitated Learning supports natural balance coming forward in all those participating. A natural balance begins to appear when there is consideration, thoughtfulness, awareness and kindness present in the interaction. ‘Balance’ is another great lesson and attribute taught by Equine Facilitated Learning.
When I teach the gentle horse training techniques through my ‘Way of the Horse/Training Thru Trust’ seminars I am constantly using Equine Facilitated Learning. Children coming to me for emotional or mental health development experience this Equine Facilitated Learning too. CEO’s coming for leadership/teambuilding improvement, experience Equine Facilitated Learning as well. The benefits of this type of simple, yet successful interaction with horses is immediate, profound and wide reaching. It is part of my personal mission to bring Equine Facilitated Learning to other parts of the world to benefit as many people (and horses) as possible.
Read a news story
about Franklin's Equine Facilitated Learning techniques
as demonstrated in the U.K. (May, 2004)