AUTHOR: Sellin, B.
PUBLICATION INFORMATION: 1995, Translation from German, original work published 1993, New York: Harper Collins Publications, Inc.
I don't want to be inside me anymore, is the story of the life of Birger Sellin, an 18 year old German man who uses facilitated communication (FC). Born in 1973, Sellin eventually at the age of two was labeled as having autism. In 1990 he began to use FC for the first time as a means of communicating with those in his life. Sellin's writings lead the reader into his world and provide considerable insight into the experience, and the pain, of living in our world as a person who has autism. We learn of the struggles and the joys that are felt by Sellin as he learned to communicate through FC. "Now I am going to write a song about the joy of speaking, a song for the mute autistics to sing to institutions and madhouses...." PUBLICATION INFORMATION: 1995, Translation from German, original work published 1993, New York: Harper Collins Publications, Inc.
mmunicating with those institutions and madhouses...
25.10.2005
SISSI - SINNIKÄS
AUTISTINEN TYTTÖ
- Sissillä oli kertynyt varmaankin 60 sanaa puolitoistavuotiaaksi saakka. Sitten ne jäi yksitellen pois. Ihmeteltiin sitä, mutta meille sanottiin, että se voi olla ihan tyypillistäkin: että lapset unohtelevat sanoja. Ja sitten hänellä alkoi sen myötä kontakti meihin heiketä, kertovat Sissin vanhemmat Joanna ja Antero Kuhalampi.
Tämä on melko tyypillinen autistisen lapsen kielenkehitys: jo opitut sanat katoavat alle kahden vuoden iässä. Sissin vanhemmat eivät luovuttaneet vaan etsivät tyttärelleen asiantuntevan puheterapeutin.
KUVAKORTIT OIKEAAN AIKAAN
Sissin perhe onnistui saamaan puheterapeutin, joka heti alkoi tarjota kuvakommunikaatiota niiden hävinneiden sanojen tilalle. Se tuli juuri oikeaan aikaan: Sissillä oli säilynyt motivaatio kommunikoimiseen. Se on juuri autistisen lapsen ongelma: vastavuoroisuus kommunikaatiossa. Heiltä puuttuu kyky asettua toisen ihmisen asemaan.
Puheterapeutti toi mukanaan kuvakortit, joita Sissin vanhemmat alkoivat heti käyttää Sissin kanssa. Sissi ei aluksi suostunut käyttämään kortteja. Puheterapeutin mukaan monet autistiset lapset oppivat korttien käytön 6-12 kuukauden kuluttua. Mutta Sissi oppi korteilla kommunikoinnin 10 päivän intensiivisen harjoittelun jälkeen. Yleensä autistista lasta pitää kovasti houkutella käyttämään kortteja.
- Sissi on sinnikäs tyttö. Hän ei luovuta. Se on tämän tytön vahvuus. Hänellä on vahva motivaatio kommunikoida ja se on poikkeuksellista autistiselle lapselle, kertoo erityislastentarhanopettaja Ulla Koiste.
Juuri ennen kuvakorttien käyttöön ottoa Sissi oli sulkeutunut.
- Sissi oli vetäytynyt kuoreensa ja sai kiukkukohtauksia. Sitten tuli keino ilmaista itseään niin hän alkoi enemmän ja enemmän yrittää viestiä perille ja sitä kautta alkoi tulla ulos kuorestaan. Sitten alkoi sellainen voimakas vahvistaminen: aina kun Sissi pyysi jotain kortilla niin hän myös sen sai. Välillä se meni ihan mahdottomaksikin: dominokeksipaketteja meni useampi viikossa ja mehua litroittain. Mutta me halusimme vahvistaa, että hän ilmaisisi itseään ja sitä mitä hän tahtoi, toteavat Sissin vanhemmat.
Autistiset lapset hahmottavat asioita visuaalisesti. Niinpä kuvakorttien avulla kaikki tärkeät asiat ja toiminnot kuvitetaan. Esimerkiksi syöminen ja kylpyyn meneminen näytetään korteilla. Mutta tärkeintä on, että lapsi itse oppii ilmaisemaan itseään kuvakorttien avulla. Sissi on tuonut vanhemmilleen ahkerasti muun muassa keksi- ja mehukorttia. Nyt hän oppinut ilmaisemaan ikävää: jos äiti ei ole kotona, niin hän vie isälle äitikortin eli äidin valokuvan.
VARHAIN ALOITETTU KUNTOUTUS
Sissin kuntoutus alkoi hyvin varhain jo kaksivuotiaana. Niinpä hänen kehitys on ollut huimaa ja poikkeuksellisen nopeaa. Vanhemmat aloittivat kuvakorttien lisäksi kontaktiharjoitukset Sissin kanssa puheterapeutin opastuksella. Harjoitukset olivat erilaisia ota ja anna -tehtäviä. Niissä opeteltiin muun muassa vastavuoroisuutta ja oman vuoron odottamista. Puoli vuotta kuvakorttien ja harjoitusten aloittamisesta Sissi sai diagnoosin.
- Tehtävät olivat Sellaista yhdessä tekemistä. Autismissa on se, että lapsi ei halua tehdä mitään sinun kanssasi. Jos menet hänen luo, kun hän tekee palapeliä niin hän työntää sinut pois. Aluksi hänet piti pakottaa niihin harjoituksiin. Hän heitti palapelit nurkkaan ja itki kaikki sessiot. Välillä tuntui oikein pahalta, että onko tätä pakko jatkaa. Mutta kun se alkoi siitä huutamisesta, niin lopulta niistä tuli Sissille mieluisia hetkiä. Ja hän alkoi itse tuomaan meille harjoituskorttia, kertaavat Sissin vanhemmat harjoittelun alkuhetkiä.
Sissin kuntoutus, kuvakortit ja kontaktiharjoitukset, kotona alkoi hyvin varhain. Sissin kommunikaatio vanhempien kanssa jatkui, kun kuvakortit otettiin käyttöön. Samalla Sissin voimakkaat kiukkukohtaukset vähenivät huomattavasti. Sissiltä jäi pois myös autistisille lapsille tyypilliset stereotyyppiset liikkeet kuten vaikkapa itsensä heijaaminen. Sissi ei ehtinyt kehittää mitään raflaavaa autistista käyttäytymistä. Kun Sissiä tutkittiin, niin todettiin, että hänellä on hyvin vähän maneereja ja stereotyyppistä käyttäytymistä.
SISSI AUTISTISEEN LAPSIRYHMÄÄN
- Sitten, kun Sissi meni Lakelaan, niin me lopetettiin kotona niiden harjoitusten tekeminen. Sissi tekee niitä siellä Lakelassa. Sissillekin tarvitsee antaa lepohetki, eli kun hän tulee kotiin, niin hän rentoutuu. Tämä kontaktissa oleminen on selvästi Sissille työtä. Se on ollut meille alusta asti hirveän tärkeää, että me sallitaan Sissille se autistisuus myös. Me ei yritetä muuttaa häntä tavalliseksi lapseksi vaan hänellä on ne omat hullutuksensa ja hassutuksensa, Sissin vanhemmat sanovat.
Sissi aloitti kolmevuotiaana Lakelan päiväkodissa autistisille lapsille tarkoitetussa ryhmässä. Päiväkodissa tehdään päivittäin muun muassa erilaisia kontakti-, kommunikaatio- ja kehonhallintatehtäviä. Lapsia houkutellaan eri tavoin kommunikoimaan. Lapsilla on harjoituksia sekä ryhmässä että kahdestaan vastuuaikuisen kanssa. Lisäksi lasten kanssa harjoitellaan erilaisia liikuntalajeja ja käsityötaitoja. Päiväkodissa käy myös puhe- ja toimintaterapeutteja. Osa lapsista osallistuu musiikkiterapiaan. Mutta tärkeintä on ihan arjen perustoimintoihin harjaannuttaminen.
Autistinen lapsi tarvitsee erityisesti turvallisia rutiineja: asiat toistuvat saman lailla päivittäin. Päiväkodin tilat ovat selkeät ja kaikki toiminnat tapahtuvat omissa tiloissaan. Tärkeintä ovat selkeys, systemaattisuus ja toisto.
- Ensimmäinen vuosi menee yleensä kontaktin hakemiseen. Mutta Sissi oli jo aloittaessaan hyvin pitkällä. Meidän ei tarvinnut hakea sitä kontaktia eikä häntä tarvinnut koko ajan hirveästi houkutella. Perimmäinen tavoite systemaattisessa varhaiskuntoutuksessa on se, että he pystyvät elämään mahdollisimman itsenäistä ja itselle mielekästä elämää aikuisena, kertoo tavoitteista Ulla Koiste
Varhaiskuntoutus on melko uusi asia. Varhain aloitettuja ja strukturoituja autististen lasten päiväkotiryhmiä on Espoon Lakelan lisäksi vain Turussa. Suomen autistiset lapset ovat hyvin eriarvoisessa asemassa. Yleensä kunnat tarjoavat tavallista päiväkotia ja avustajan. Kuhalammen perhe oli juuri rakentanut omakotitalon Inkooseen, mutta muuttivat Sissin kuntoutuksen vuoksi Espooseen.
Varhain aloitettu kuntoutus ei poista autismia, mutta antaa paremmat eväät mahdollisimman itsenäiseen elämään aikuisena.
SISSIN HUIMA KEHITYS
Tutustuimme Sissiin toukokuun alkupuolella. Sissi täyttää neljä vuotta toukokuun lopulla.
- Tästä ei ole kuin kolme viikkoa aikaa, kun saatiin selville, että Sissi osaa lukea ja kirjoittaa. Sissin kanssa tämä kirjoittaminen lähti hänen omasta aloitteesta. Meillä on ryhmässä kahdella pojalla kirjoitin ja Sissi on tarkkaan seurannut heidän kirjoittamista. Tämä alkoi niin, että Sissi meni toisen laitteen luo ja rupesi näpyttelemään ja seuraavana päivänä hän toi kirjoittimen aikuiselle. Me tartuttiin siihen heti ja kysyttiin, että osaatko kirjoittaa. Sissi kirjoitti ensin Sissi ja sitten Ulla, muistelee Ulla Koiste.
Autistiset lapset tarvitsevat aluksi avustajaa kirjoittamisessa. He tarvitsevat tukea etusormen käyttöön, koska he eivät heti osaa eriyttää etusormea keskisormesta. Kirjoittamisen tavoitteena on, että lapset oppivat kirjoittamaan itsenäisesti ilman avustajaa.
SISSI ILMAISEE TUNTEITAAN
- Sitten kun Sissi itki ja raivosi niin hän kirjoitti siihen suututtaa. Hän kykeni ilmaisemaan tunteitaan mikä noilla korteilla on mahdotonta. Mä luulen, että tämä kirjoittaminen on Sissille iso juttu, koska noilla korteilla voi ilmaista itseään vain melko mekaanisesti. Ei olisi uskonut, että hän osaa ilmaista tunteitaan kirjoittamalla. Tästä kirjoituksesta on nyt melko suuret odotukset. Katsotaan miten se lähtee sujumaan. Ihan eri tavalla taas ymmärtää häntä.
Autismi on lukko, joka eristää muusta maailmasta. Kontakti, jopa katsekontakti, toiseen ihmiseen tai vastavuoroinen kommunikaatio ovat hyvin vaikeita - joskus jopa ylitse pääsemättömiä.
- Nyt ollaan siinä pisteessä, että esimerkiksi kun mä olin ollut poissa, niin sunnuntaina hän tuli halaamaan ja pussaamaan mua. Tällaiset ovat ihan uusia asioita hänelle. Sissi oli pitkään täysin välinpitämätön kuka oli kotona, kertoo Sissin äiti Joanna Kuhalampi.
Sissi nauttii monista asioista: päiväkodissa tehtäväharjoituksista, saippuakuplista ja pallomerestä. Kotona hän nauttii muun muassa isän kanssa riehumisesta, siitä kun isä "lennättää" ja ulkona juoksemisesta. Mutta television ja videoiden katselu on ehkä kuitenkin se paras juttu.
- Sissi on varmaan suurimmassa taivaassa, kun on joku hyvä videopätkä ja saa ranskalaiset eteensä. Sitten Sissi käy popsimassa niitä ja ottaa spurtteja käytävällä: kurkkii välillä videoita ja popsii ranskalaisia. Musta tuntuu, että hän on silloin kaikkein onnellisimmillaan, naurahtaa Joanna Kuhalampi.
Asiantuntijat: JOANNA ja ANTERO KUHALAMPI,
Sissin vanhemmat
ULLA KOISTE, erityislastentarhanopettaja,
Lakelan autistien osaamiskeskus, Espoo
Toimittaja: SARI SOININEN
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http://www.nic.fi/~margie/Maalis2002.htm#Ulos
ULOS HILJAISUUDESTA
Epilä/Raholan koulussa on menossa erään luokan aamutunti. Luokassa on 8 oppilasta, 3-7 luokkalaisia. Vikki, Sini, Ville, Terhi, Varpu, Jari, Linnea, Juha ja opettajana Seija Valkeeniemi ja avustajina Pauliina ja Salme. Luokkahuone on kaunis ja tunnelma luokassa lämpöinen ja kodikas. Esittelyjen jälkeen opettaja lukee jokaisen päiväkirjan edellisen päivän toimista. Välillä kaikki tekevät älyjumppaa, joka auttaa raksuttamaan. Sitten läksyjen tarkistus ja liikuntarastien merkinnät taululle. Luokassa on yksi oppilas, 11-vuotias Terhi, joka ei osaa puhua omalla äänellään, mutta kylläkin kommunikaattorin avulla. Kone muuttaa Terhin kirjoittamat kirjaimet sanoiksi ja puheeksi. Kirjoittaminen tapahtuu fasilitoimalla Terhin henkilökohtaisen avustajan Pauliinan avustuksella.
Facilitated communication on tuettu kommunikaatiomenetelmä, jonka avulla autisti pystyy ilmaisemaan ajatuksiaan. Oppilas tarvitsee kirjoittamiseen avustajan, koska hänellä on pakkoliike kädessään. Avustaja tukemalla oppilaan kättä antaa kädelle vastavoiman. Ja oppilas antaa oman tahtovoimansa osoittamalla mihin kirjaimeen haluaa etusormensa kohdistuvan edessä olevassa aakkostaulussa tai tietokoneen näppäimistöllä.
Olimme Helyn ja Tuulan kanssa vierailemassa Terhin luokassa ja saimme seurata hänen kirjoittamistaan. Saimme Helyn kanssa myös konkreettisen näytön siitä, mitä käden vastustaminen tarkoittaa. Mietin mielessäni sanan 'kissa'. Sitten avustaja otti tukevasti kädestäni kiinni ja vastusti käteni liikettä, niin että itse hain kirjaimet ja naputin etusormellani. Tiedän että hän ei ohjannut kirjoitustani. Kirjoittaja saa tukea kädelleen, mutta itse valitsee kirjaimet. Ei todellakaan voi sanoa, että avustaja kirjoittaa puolestani.
Kaksi vuotta sitten kirjoitin tällä palstallani Tuulasta otsikolla 'Löytöretkeilyä Tuulan maailmaan'. Tuula, jonka sijaisäiti Hely on, on 10-vuotias reipas autistityttö. Hän on valtavasti edistynyt näinä kahtena vuotena, jotka olen hänet tuntenut. Haastattelin nyt Terhiä ja kysyin myös Tuulasta.
Miltä tuntui silloin, kun osasit lukea ja kukaan ei tiennyt sitä? - Se tuntui surulliselta. Saanko kirjoittaa tästä lehteen? - Minä tykkään kyllä siitä. Kirjoitatko myös kotona? - Äitin kanssa kirjoitan. Haluaisin näyttää sinulle minun runoja. Voinko laittaa runon lehteen? - Sopii se autistiruno. Millainen on autistinen? - Autisti on yksinäinen. Miksi? - Niin elän omissa ajatuksissani, hiljaisuudessa. Minusta tulee isona toimittaja, äiti kirjoittaa minusta kirjaa. Missä asut? - Tahmelassa, meillä on iso perhe. Joonas, Jouni, Roosa ja pikku Vili eli Simppa. Minä olen vanhin. Mitä ajattelet Tuulasta? - Hän on samanlainen kuin minä. Miten? - Tuula ei puhu. Tajuaako hän puheemme? - Uskon niin. Kirjoitan kaksi asiaa: Tuula on kaunis. Tuula ääntelee ihan kuin minä. Haluaisitko Tuulan ystäväksesi? - Minä olisin iloinen ystävästä. Luuletko että Tuulakin voisi oppia tätä kirjoittamista? - Voisin opettaa Tuulaa. Mitä luulet, miltä Tuulasta nyt tuntuu kun hän on seurannut sinun kirjoittamistasi? - Oudolta. Mikä sinulle on vaikeaa? - Kun olen yksin kotona, minulle tulee kiusaus syödä kaikkea mahdollista, ruokaa, kyniä, tavaroita jne. Ohjaako Pauliina sinun kättäsi? -Ei. Mitä Pauliina tekee? - Vastustaa kättäni.
Erityisopettaja Seija Valkeeniemi kertoi, että Terhi on nyt kirjoittanut 1 1/2 vuotta. Kun Terhi pari vuotta sitten tuli kouluun, hänet testattiin 2,5 vuotiaan tasolle. Opettaja testasi ja Terhi itki. Sitten opettaja huomasi kuinka kirjaimet kiinnostivat Terhiä heti. Tietokoneella annettiin tukitunteja. Irmeli Salminen Kouvolasta, jolla on useamman vuoden kokemus fasilitointityöstä, kävi kouluttamassa yhden päivän koululla, ja siitä kaikki alkoi. Myöhemmin Terhi on kertonut, että hän oppi lukemaan jo 8-vuotiaana kun muita opetettiin luokassa. Seija Valkeeniemi kertoo, että hän itse on oppinut valtavasti opettajana. Aina on pidettävä mielessä, että oppilaat ovat kyvykkäitä oppimaan uusia asioita, on vain oltava itse ennakkoluuloton. Tapasimme koulun käytävällä myös 16-vuotiaan Kimmon. Hän on viime marraskuusta asti kirjoittanut fasilitoimalla siten, että hän osoittaa kirjaimia aakkostaulussa, mutta kommunikaattoria hänellä ei vielä ole. Kun Kimmo piirteli, luokka-avustaja Marja-Leena huomasi kuinka käsi teki ympyrää, mutta kun kättä tuettiin, syntyi selviä erilaisia kuvioita. Näin syntyi idea siitä, että Kimmolla on kykyjä ilmaista itseään.
Hely on tuntenut Kimmon vauvasta asti ja niinpä hän kutsui vierailulle kotiinsa Kimmon hänen äitinsä ja pikkuveljensä Tommin kanssa. Olin myös innokas tapaamaan Kimmon. Meillä oli rattoisa iltapäivä. Innostuimme kokeilemaan erilaisia tapoja laittaa kirjaimia esille. Varsinkin Tommi-veli innostui asiasta, leikkasi kirjaimia ja asetteli niitä lattialle. Sain myös luvan olla Kimmon avustajana ja huomasin, että opin sen vaivattomasti. Kimmo innostui ja meistä tuli hetkessä sydänystävät. Sanoin hänelle, että 'minä uskon sinun kykyihisi'. Näin todella teen.
Kun ajattelen näitä nuoria ja kaikkia autistisia ja vammaisia lapsia, lämmin rakkaus säteilee sydämessäni. Kun katson heitä syvälle silmiin, näen kauniita, viisaita sieluja, jotka ovat täällä opettamassa meitä, niin sanottuja terveitä.
Lopuksi kaikille meille pääsiäistervehdyksenä Terhin runo.
Sydän runo
Sydän on hyvä asia. Se on rakkautta.
En osaa kirjoittaa miltä se tuntuu.
Jokaisen ihmisen sydän on punainen ja lämmin.
Lämmin kuin takka.
Autistin sydän on erilainen.
Se on hiljainen.
Loppu.
Valoisin pääsiäisajatuksin,
Margie
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PRT-Pivotal Response Training
PRT-menetelmä pienten lasten kielen kehityksen vauhdittajana
PRT eli pivotal response training (ydinvalmiuksien harjaannuttamisohjelma) on luonnolliseen oppimiseen tukeutuva menetelmä, jolla voidaan opettaa monille autistisille tai autististyyppisesti käyttäytyville lapsille nopeasti ja tehokkaasti funktionaalista sosiaalista puhekieltä. Menetelmä perustuu lapsille luontaisen iloisuuden, motivaation ja uteliaisuuden hyödyntämiseen sekä halutun käyttäytymisen (puheen) asteittaiseen positiiviseen vahvistamiseen.
”PeRtTi” on intensiivinen harjaantumisohjelma, jossa kuntoutusta ja opetusta toteutetaan kullekin lapselle 6-8 viikon ajan, 10 tuntia viikossa niin, että toimintatapa jää perheen toimivaksi kommunikaation ja yhdessäolon muodoksi tulevaisuudessakin. Menetelmän omaksumista ja siirtovaikutuksia varmistellaan 7 vkon seurantaohjelmalla, jolloin tapaamme lapsen ja perheen 1-2 krt viikossa.
Käytännössä vanhemmat seuraavat aluksi terapeuttien työskentelyä ja opettelevat menetelmää. He ryhtyvät pian toimimaan itsekin ”Pertin” periaatteiden mukaan terapeuttien tuella. Tavoitteena on, että lapsen lähipiiri oppii toimimaan lapsen kanssa niin, että hänen kommunikatiivisia yrityksiään tuetaan ja vahvistetaan jatkuvasti sekä luodaan hänelle mahdollisuuksia onnistua vastavuoroisessa merkityksellisessä vuorovaikutuksessa ja kommunikaatiossa joka päivä. Ilo ja motivaatio ovat avainsanoja.
”Perttiä” voidaan toteuttaa missä tahansa. Ohjelman aluksi menetelmää opeteltaessa terapia toteutuu Honkalampi-säätiön Kliinisen tutkimus- ja kuntoutusyksikön tiloissa, n. 2 x vkossa, ja sen jälkeen lapsen kotona, päiväkodilla, kerhossa tms. lapselle mukavassa paikassa. Terapiaistunnot sisältävät leikkimistä, kirjojen lukemista, piirtämistä, laulamista – eli mitä tahansa lasta motivoivaa toimintaa, johon liitetään tarkka käyttäytymisterapeuttinen lähestymistapa puheen vahvistamiseksi.
Honkalampi-säätiöllä alkoi 1.3.2005 nelivuotinen RAY-rahoitteinen kuntoutushanke, jossa tarkoituksena on muokata menetelmä Suomeen sopivaan muotoon ja tehdä siitä ohjaus-, koulutus- ja infomateriaalia. Syksyllä 2006 alkavat yhteisluennot ja keväällä 2007 ohjaajakoulutus.
”Pertti” on intensiivistä, mutta palkitsevaa toimintaa. Muutaman viikon sitoutuminen tuottaa tuloksena parhaimmillaan uudenlaisen kontaktin autistiseen lapseen: puheen.
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May 14th, 2007
Longing to escape from my prison, longing to let someone know that I was very smart, longing to stop wasting my years in school and longing to say “I love you” to my family, I tried once again to alert someone to my predicament. My hopes for success weren’t very high.
I am autistic — my prison is my own body. I don’t know how to begin to explain the constraints my body puts on me, though I will try. My body won’t obey my mind. Only silly noises emerge from my mouth when I try to talk. I can’t do the simplest of tasks, such as tying my shoes or writing my name. There are the times when I totally lose control of what my body does. I refer to those moments when I do loud and crazy things as “losing it”. I can tell when those “losing it” explosions are coming, but I can’t always stop them. My body and my emotions take over and I don’t regain control for a long time.
Inside, I feel and think the same way that everyone else does. Other people have the same feelings that I have. They feel the same way that I do in stressful situations. They control their distress. Because I am autistic, I can’t control mine.
Because of this, people can’t see the real me. They see someone who acts compulsively, doing crazy things. They see someone who needs laborious training to master even the simplest of tasks. Even when a task has been mastered, they see someone unable to initiate that task. My inside self is embarrassed by my body’s inability to do “normal everyday” tasks.
Until the age of 13, though, my biggest problem was that I had no way to communicate with the rest of the world. Many methods of communicating were attempted, such as sign language, some type of picture board, or typing on a computer. Because my body wouldn’t obey my mind, none of these efforts succeeded. Consequently, I was thought to have a mental age equivalent to a two-month-old baby. My only efforts at communication that somewhat succeeded were screaming, biting my hand, and hugging my family.
A side effect of my inability to communicate was that people held few expectations of me. They rarely addressed me in conversation. As a consequence, I rarely paid attention or reacted appropriately to conversation around me. No one knew that I could understand everything said in my presence.
I was in the Severely and Profoundly Physically and Mentally Handicapped Class in a local elementary school. I was receiving speech therapy, something I had been receiving since I was four years old. Maybe a better term would be “communication therapy”, because speech therapists seek ways for everyone to communicate, even nonverbal kids like me. These years of therapy had helped me in some ways, but didn’t enable me to communicate, though we explored many alternatives to actual speech.
To escape from my autistic prison, I needed to communicate with somebody. When I was 13, Sue Leedy was my school speech therapist.
I remember sitting with my parents, listening to Sue recommend that we stop my speech therapy since so little progress had been made over the years. This didn’t bother me since therapy hadn’t opened any doors for me. However, my dad and mom didn’t want to give up. Sue suggested that we make one final attempt, using a picture board.
Using a picture board means pointing to a picture of a hamburger if you want something to eat or to a picture of a school bus if you want to go to school. Of course, understanding this concept was easy, but using the board was nearly impossible for me. I couldn’t get my pointing finger to touch the right choice of pictures.
During my years of communication therapy, I did learn one crucial skill – to isolate one finger as a pointer. Someone was always asking me to point at things that they wanted me to identify, like shapes or colors. I could rarely point at the right object, but I could point at something. Because of my inaccurate pointing, I knew a picture board wouldn’t work any better this time than it had worked the last time someone tried it with me.
Sue’s board was different from past boards. She happened to use pictures with writing on them. For instance, the picture of the school bus would have printed below it something like “A school bus takes you to school”. Sue didn’t mean for me to read them, because no one had any idea that I could read. She just used the best pictures that she had on hand. The words were right under the pictures. Despite my skepticism about the board idea, I saw these words as an opportunity.
The words under the pictures motivated me to try something that I had tried many times before. I tried to let someone know that I could read by pointing to words rather than to pictures. The problem with these attempts to show that I was intelligent was that I couldn’t point very well. When I did point to words, people probably assumed that I had missed the picture that they thought that I was trying to point at. When Sue asked me to point to something to eat, I would often do something like point to the words under the school bus. But I always tried to point to words instead of a picture. I actually succeeded quite often, because this time the words were right under the pictures and easier to hit than usual. I still expected nothing from my efforts, because they never had worked before.
Much to my amazement, Sue picked up on my pointing to the words and, for the first time, someone entertained the thought that I might be able to read. I had had little hope that anyone would actually “get it” when I pointed at words. It was like walking through a casino and pulling on the same slot machine each time I passed it, with no expectation of actually hitting the jackpot. Now I had to confirm her “wild idea” that I could read if I was to collect my jackpot.
Sue began by showing me cards to match together. Some had a word on them like “computer” and the rest had pictures of the word items. I had been asked for years to match cards by color, so this task wasn’t totally beyond me. She showed me the word sometimes and asked me to point to the right picture. Sometimes she did the opposite. I was right in my pointing about half of the time. Since there were many more than two choices, this was a higher number of successes than would be expected if I were doing random guessing. Sue was getting very excited. I was too.
Next, she tried cards with sentences on them like “The boy is kicking the ball” or “The girl is brushing her teeth.” She again had pictures to match. Again, I got about half of them right. This seemed to imply that I could grasp a series of ideas from one picture or sentence. My supposed mental retardation was now in doubt. More excitement! But Sue wasn’t done.
Why was I only right half of the time? Sue had a theory. She thought that I was missing because I often shifted my eyes around, not looking directly at the cards. Actually, I could see the card that I wanted to point to perfectly. I missed anyhow. I still don’t know why I missed, except that it is part of the results of being autistic. Sue acted on her theory.
Even when I was 13, Sue was half my size. She reached up and grabbed my chin and aimed my eyes at the cards. Much to my surprise, I could suddenly point to the right card almost every time. Sue thought she had figured it out – my eyes weren’t tracking the cards half the time. I knew that my eyes were already tracking the cards all of the time – I didn’t understand it – there was no apparent reason for my newfound accuracy. It was really strange how Sue’s holding my chin allowed my finger to go where I wanted it to go. Nevertheless, someone now knew that there was more to me than was apparent from the outside. At last! Someone got my message!
This happened in the spring of 1991. The journey leading me from a special education class to the college classroom began when Sue noticed the significance of my pointing to the words on my picture board and her touch on my chin was also a major step. Thank goodness Sue acted on her incorrect theory about why I missed my target when pointing. It helped lead my family and me to a communication method called Facilitated Communication (FC), which depends on human touch as a way to allow me to point to letters on a letter board. Without FC, there would have been no journey. This journey was filled with many miraculous moments, but none more crucial to my escape from the imprisonment of my autistic body than Sue’s moment of revelation.
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My right hand is my life'
11-year old girl writes about the world of autism
January 28, 2007
By CARLA OCCASO Staff Writer
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Keri Darling, left, talks to her daughter, Maleia, 11. Recently, Maleia, who has autism, began communicating with her family for the first time by typing her thoughts and feelings on a computer keyboard.
Photo: Photo by Carla Occaso |
Maleia Darling shocked her family just over a year ago by communicating volumes of bright, articulate thoughts although she has never spoken a sentence. Until then they didn't know what her favorite color was, let alone what her complex thoughts and feelings about her experiences might be.
"My name is Maleia and I am eleven years old," she wrote with a typewriter-like device on Oct. 2 in a piece titled "My Life With Autism." "I feel like other kids my age but my world is very different. I am forced to live in the world of autism. To me there is a gospel different from yours. Autism affects me both academically and personally."
Before Maleia (her name is pronounced MAH-LEE-AH) learned to type on a keyboard about a year and a half ago, her parents, Todd and Keri Darling of Barre, said they had no idea what went on in their daughter's head. They picked out what they thought she would like or need by trying to guess the desires of their sometimes expressionless child with big beautiful eyes and short blonde hair. short blonde hair. Once she began writing, her inner world came alive to them.
"We were blown away," said Todd Darling, who is a wholesale flower distributor. "We didn't know she knew what she knew (and) for me, it gave me a stronger will to help her get out of the world she was in."
Now, Maleia tells her parents what she thinks, feels, likes and dislikes. Her favorite colors are pink and yellow. She likes volcanoes. She likes riding on snowmobiles, roller coasters and other amusement park thrill rides.
"It's made us closer because we know how she feels," Keri Darling said. "Before, I made all the decisions. It's helped to get to know her more."
Autism is classified by the World Health Organization as a neurodevelopmental disorder. The condition affects a person's ability to communicate, understand spoken language and interact socially. Symptoms usually appear in the first three years and continue throughout life.
Maleia's medical problems started at nine months when she had a grand mal seizure. Keri Darling called emergency rescue and felt "helpless" and "clueless" as her tiny daughter was rushed to Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
Doctors diagnosed Maleia with autism at age 3. Her parents cared for her as she endured seizures for days in a row, every hour on the hour, according to Keri Darling. The early years were "rough," Todd recalls. As Maleia matured, the duration and frequency of the seizures decreased, and though she had seizures as recently as last summer, the episodes have been regulated with medication.
The Darlings credit their own parents, extended family, the Barre Town School and the community for supporting them along the way.
Keri Darling, who works as a victim's advocate for the deaf, said the Barre Town school has been "awesome." The school board promised the Darlings the school would help Maleia with whatever she needed when she enrolled in kindergarten. Now in fifth grade, she works with a one-on-one aide, often in a room by herself, because it is difficult for her to be with groups of people.
Todd Darling said it was impossible to tell how much Maleia was taking in until Harvey Lavoy of the Barre Town School introduced her to "facilitated communication" last year.
In her case, someone holds her wrist or elbow in place so that she can access the keyboard of a computer or other writing device with her fingers. Maleia hits the keys on her own, Todd Darling says. Her writing is not edited by her parents or her teachers.
Maleia is reading and writing at a fifth grade level, and she has produced pages of sensitive, intelligent essays.
"Words, thoughts, hoards (sic) of emotions spin a riot in my head," Maleia wrote. "How can I speak or know drops of thoughts when there's an ocean in my head? … How can I fit into a world forcing feelings I don't have?"
Her writing reveals a thoughtful person full of hopes and joys, even though on the outside she appears to be cut off from others.
The Darlings had no idea how their dedication touched their daughter until recently because Maleia only utters occasional single words to indicate what she wants, her father says. And while she can say many words, she's not able to string them together verbally in sentences, he says.
Maleia recently wrote, "My mom is pretty and smart. She loves me the way I am. She loves me as much as she loves (brother) Jake. I'm surprised that she loves me when I'm a devil. I love her, too, and I'm so really happy that she's my mom."
Maleia also wrote a letter called "My Special Place" to her grandmother: "Roots of love, rays of happiness, torch of hope, these are the things that touch me when I am at Mimi's house. Mimi's house is truly peaceful … She's always a fountain of love for me and filled with real hope that I am smart and really lovely." Kay Lamberti, Maleia's grandmother, said she cried when she read this letter.
Her parents are amazed how simple communication devices, such as portable electronic keyboards, have opened Maleia's world.
Knowing her preferences has allowed the Darlings to provide an enriching environment at home. Her bedroom has become a soothing retreat decorated in her favorite colors with soft lights. On a recent Sunday afternoon Bob Marley's rhythmically lilting reggae music filled the air as Maleia swung on a swing in her bedroom. Todd Darling explained Maleia puts on music and swings every day when she gets home from school to unwind from the daily stress. Autistic children need certain kinds of physical stimuli other children don't, according to Keri Darling. In the summer, she swims in their backyard pool.
Maleia's seemingly miraculous discovery of the written word has inspired her uncle, Randy Lamberti, to join with Sue LaGue of Berlin, a grandmother of an autistic child, to raise money help families like the Darlings purchase equipment for their loved ones.
"We wanted to do something to raise awareness," Lamberti said. "It is a disease that gets one in every 166 children."
Lamberti and LaGue formed the Autism Puzzle Foundation to serve people statewide in need of toys or devices to enrich their lives. They held a fund-raiser at the Barre Elks Club last April, which raised nearly $21,000. Of that, $10,000 was given to Cure Autism Now (www.cureautismnow.org), a research organization that is offering to pay for devices that can people with autism.
Families throughout Vermont are invited to contact the Vermont Assistive Technology program about the Autism Puzzle Foundation gifts of up to $500 for therapy swings, facilitated communication equipment and other alternative communication devices. Funds are also available for toys that help with sensory integration, fine motor skills, gross motor skills, tactile skills and cognition skills.
"We're trying to help Vermonters statewide," Lamberti said. "There's a huge need."
And now, thanks to help from family, teachers and others, Maleia can speak for herself about how important these devices are to those with autism.
"I want to tell people how much my life has changed with typing," Maleia wrote. "Typing is my voice and my right hand is my life. Before typing I had little way to tell people my needs and feelings."
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An Essay from a Non-Verbal Child on What It Is Like To Be Autistic
This was on one of my lists today. I really enjoyed reading it.
When my Dear Daughter's supervisor showed me this letter from one of her other clients, I immediately wanted to share it with all of you. I was amazed at how articulate this boy is and his depth of thought on the topic.
He is 9 years old, nonverbal, and diagnosed with severe autism. He just began using a Facilitated Communication device recently. The question my dd's supervisor posed was "What does autism mean to you." Here is his reply. I have typed his words verbatim. I have not altered his sentence structure or thoughts at all.
"What do I think autism means. To me it means not to be able to fully connect with myself. I can not control some of the things I say or do. I feel at times out of control. Other times I feel scared of what others may think. I have all my life had to prove to people that I am really intelligent and kind. Huge amount of people have finally believed in me. The toughest part of being autistic is the silly thoughts that go through your head. People don't understand what I am thinking of. It's frustrating. Autism is not easy to define to somebody who isn't but, the easiest way to put it into words would be probably disconnection from yourself and others. People are now understanding that it more prevalent. There needs to be more research on infants while in the tummy. I know there is some clues there. As to why there is autism. I'm just happy to be alive and healthy. I'm just lucky to have my family and friends. Having them helps me cope with life. I'm very lucky."
When my daughter's supervisor asked him if she could share this letter with others so that they could understand what it's like to have autism, he typed the following response:
"Yes. Yes please. I want others to know. I think it's important for people to know. I'm really proud of my paper. I worked really hard on it. Thank you."
I was blown away by the complexity of mind that this boy displayed. I taught typical 9-10 year olds in 4th grade for 5 years and this level of thought is rare indeed.
I hope you enjoyed it as much as I did.
Shelly and Natalie (3 and we have high hopes!)
By Gina M. Scherffius
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Houston resident Gena Shaw assists her son, Brett, in typing on a computer keyboard. Brett, 12, has severe autism, yet is able to complete extensive writing projects using this facilitation method.
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(Houston, TX) When Brett Shaw’s attendant asked his mother if she could try using “facilitated communication” with him, Gena Shaw said to go ahead. Diagnosed with severe autism, Brett does not speak, write or sign.
Before long, the 11-year-old began to express himself through typing—both anecdotes and journal entries. The biggest project was his poem, “Autism” (see box at left).
“Facilitated communication is controversial, but I think it should be attempted with all non-verbal disabled people,” Ms. Shaw said.
Facilitated communication uses a second person without a diagnosed disability to assist the person with a disability to write or type. In Brett’s case, attendant DeeDee Short first placed her hands over his on a computer keyboard and showed him how he could make letters and words appear.
Skeptics think facilitators are deceiving themselves into believing that the resulting communication originates with the disabled person, when it is really from the facilitator. However, when Brett typed the poem, his facilitator only placed her hands on his elbows, not over his hands.
“It took two days for him to write the poem,” Ms. Shaw said. “He’d type a line and run off to do spinning and other behaviors (associated with autism).”
Ms. Short would gently prompt him to come back to the computer again and again, and eventually the poem was finished.
Brett, now 12, is “up to shoulder support only,” Ms. Shaw said. Since the poem, Brett has written a short autobiography, stories and academic work. However, Ms. Shaw explained that Brett requires constant prodding and prompting because he still has problems focusing.
Although Brett has a serious disability, Ms. Shaw is quick to point out that “autism doesn’t shut down everything.” Brett goes to a public middle school, attending special education in a self-contained classroom. Through his newfound ability to communicate, he has shown that he understands spoken language, which was not always apparent.
“He has a wonderful setup this year,” his mother said. “They are assuming he has intelligence, now that through his typing he is able to let people know he has a brain, that he is a person.”
EduCare Community Living, part of the ResCare family of companies, supplies respite care and secures adaptive aids for Brett. EduCare also administers a program that helps Ms. Shaw to hire and employ attendants herself. According to Ms. Shaw, Ms. Short no longer works with Brett because she needed to earn more money.
“That was very difficult because she was a huge part of his life,” said Ms. Shaw. “She took him places and encouraged him to interact with the world. She could even get him to clean his room!”
Ms. Shaw explained how Ms. Short would take Brett to a bookstore to select a book, which they would read together. Afterward, she would test Brett on the book’s material.
Ms. Shaw and his current attendant are still working with Brett on typing.
“They tend to type better with one person,” she explained. “It has been a challenge to get him to do the same caliber of work, but we need to keep him typing and not shut down. This is the only way he has been able to communicate.”
Soon, Brett may have another “voice.” Through Texas’ Community Living Assistance and Support Services (CLASS) program, EduCare is working to obtain a voice output device that will speak what he types. CLASS began assisting Brett in 2000.
Autism
Written by Brett Shaw, age 11, for his mother’s birthday.
I am autistic.
I can’t speak.
I can’t write with a pencil.
I can’t ask for the things I need or want.
People look at me funny.
I don’t know why they do that.
I am a boy who wants to be okay.
I am smart and funny.
Will I get to learn things like other boys?
I want to learn everything.
When will my teachers let me learn?
I can type to answer questions.
I can write by typing.
I can do anything I want to do.
I can learn anything I want to learn.
I am Brett Shaw.
August 13-15, 2003
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Autistic Boy Finds Voice Through Typing
The latest research shows autism affects 1 in 166 children. It's a complicated disorder that requires different treatment strategies for each autistic child. For one East Bay family it's been a challenging journey. But now their non-verbal son has found his voice through typing.
Ten-year-old David Teplitz wants people to understand he's a "no-talker, not a no-thinker."
He communicates through a keyboard.
"For a long time I was silent," he writes. "But now people can hear a no talker and I feel free."
David's battle with autism began about 8 years ago. His mother Linda noticed a change in his behavior.
Linda Teplitz, David's mother: "At first I thought it was the terrible twos because that's what happens at that age, but then I realized he had also stopped understanding me."
After doctors diagnosed David with autism, his parents poured their energies into exploring ways to reach him.
The biggest roadblock was David's lack of language development and poor motor skills, but a breakthrough came when they discovered he had learned the alphabet.
Linda Teplitz: "He had learned it before we went to teach it to him, and when we found out that he could read, he's about four years old and could identify words, and that moment I thought this is something we can work with."
Eventually, that led them to teach him typing and ultimately to what's known as "facilitated communication."
Christy Sotter, speech pathologist: "Because of his motor needs and him not being able to hit the keys he wanted to, it just came that we started facilitating him."
Facilitating by helping to support his wrists, but the technique is not without controversy.
Speech pathologist Christy Sotter remembers hearing some of the early criticisms about it.
Christy Sotter: "People came in to really study it, and they did these double blind studies that weren't coming out in favor of it being a legitimate form of communication, and that's how I thought about it for years."
But not anymore.
Christy Sotter: "These are his own words, this is him, there's no doubt in my mind."
She and David's tutors were very careful about maintaining objectivity and avoiding any unintentional influences on his communication. What they discovered was the brilliant mind of a young man with incredible language abilities.
Christy Sotter: "Even humor and those nuances of language that are more developed, he had all those, he just couldn't get it out."
Sabrina Iwasaki, David's tutor: "It's been really interesting to see his writing because he does organize it really well and you really get a picture of how he thinks."
David just completed fourth grade, just like all other 10 year old boys. He's taught at home, and goes part time to Hillcrest Elementary School in Oakland. His fellow students created a mural at school based on one of David's creative stories.
Gary Teplitz, David's father: "You see a child like David and you think, he's not there, you think he's not listening, but he is there, he is paying attention, he's learning, so its important to take advantage of that and really push that."
David has found his voice. His dream is to cure autism, not because it's bad, he says, but because life would be so much easier without it.
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31/07/2006
Jamie finds his voice - but facilitated communication remains controversial
WESTVALE, New York, USA: Jamie Burke speaks with poetic elegance. That he can speak at all is a triumph of his own determination, years of intensive and innovative therapy and access to inclusive classrooms.
Burke, 19, of Westvale, is severely autistic. And until he said his first words at the age of 12, the realistic fear of his parents was that he would never talk.
"Before that, it was a very dire future," said his mother, Sheree Burke. She said the woman who diagnosed Jamie at the age of three ended the session by saying: "There are group homes."
Instead, he is a Westhill High School graduate about to enter Syracuse University.
Not only does he speak, but he has addressed an international conference in Germany, a therapy training session in England and several seminars around the United States. His story has been filmed by CNN and reported in People and Time magazines and El Pais, Spain's most widely circulated newspaper.
In September, he will join the Association of Persons with Severe Handicaps in presenting to United States Congress a public policy statement, "The Right to Communicate."
Having claimed his spot in the community, Burke has a lot to say about the years of silence when nobody knew exactly how smart he was.
"Yes, I understood everything, but people thought I was lost in the reverie of autism," he says. "I screamed at the idiots who treated me like a kid that was invisible."
He can speak short thoughts extemporaneously. For long sentences, he types on a small keyboard or laptop, then says the words out loud.
This autumn, he will enter Syracuse University's College of Health and Human Services.
"I would love to study the genetic puzzles of the brain," he types, then says the words.
Burke was one of the earliest students, and is one of the most successful beneficiaries, of facilitated communication, a controversial therapy brought to the United States from Australia by Douglas Biklen, now the dean of Syracuse University's School of Education.
A facilitator supports the finger, hand, wrist or arm of a person with a speaking disability (not always autism), allowing him or her to type. The writings of such subjects have sometimes revealed high intellect where mental retardation was thought to reside. Critics say it is the facilitator, not the subject, whose thoughts are being typed.
Scientific studies are split on whether the therapy is effective and several professional organisations remain highly sceptical.
Biklen confirms that the therapy can be abused or misused and that it is not easily subjected to simplistic studies. He insists the results of the therapy can be, and have been, measured.
His evidence is in the progress made by Burke and a handful of others with autism who have learned to communicate virtually independent of help.
"They're really giving us a completely different vision of what is possible," said Biklen.
Burke is the perfect example of why those who cannot communicate should be afforded standard educational opportunities, says Biklen.
"It's like the Hippocratic oath for educators," he said. "If you don't take that position, you've really written the person off."
Biklen and Burke co-wrote an article titled "Presuming Competence" published this year in the periodical, "Equity & Excellence in Education."
One passage in the article is Biklen's favourite observation written by Burke. In it, Burke describes, with frustration and a bit of humour, all the fuss associated with his inability to tie his shoes, an accomplishment used by both parents and educators as a signal of development.
In the grand scheme of his struggles, Burke viewed tying shoes as inconsequential.
"Isn't tying the speech to my mouth from my brain more critical to life than making a piece of cotton secure?" he wrote. "When I was 15, I tied my shoes and people rejoiced as if I had won an enormous prize in some battle."
Burke and his mother, Sheree, say he was fortunate to have access to inclusive education - rather than segregated classes for people with disabilities - from an early age.
He started out at Jowonio, which teaches children with a wide range of abilities and disabilities.
"Jowonio opened the door to the heart and I sallied forth into the world of the regular life," says Jamie Burke.
His big breakthrough in facilitated communication came with the acquisition of a small keyboard that digitally displays what is written on both the front and back. The device, a $4,500 LightWriter developed in England, also speaks the typed sentence.
With practice, Jamie progressed to typing, then speaking on his own. He still needs a facilitator, most often his mother, to provide cues that help him act on his thoughts.
"It looks deceptively simple," said Sheree Burke, "but there's a lot of intricacies. There's a lot going on."
Sheree and her husband, Michael, have employed a laundry list of theories and techniques - SAMONAS listening therapy, craniosacral therapy, The Flo, The Infinity Walk, Wilbarger Brushing and Joint Compression, Neurological Music Therapy - to advance Jamie's development.
Jamie credits a listening therapy with providing the key to his ability to tie his shoes.
Sheree Burke is still amazed that the Westhill Central School District not only accepted but embraced all the complicated methods required to help Jamie complete his courses.
"Westhill, they certainly stepped up to the plate," she said. "And not just bodies but committed educators."
Jamie Burke will be Syracuse University's first severely autistic student, but not the first in Central New York. Three have graduated from Le Moyne College, according to the school's public information office.
Biklen will not speculate on how much Jamie Burke can improve his speech. "There's an incredible variety within the disability," he said. "We have a long way to go. We've got to have a lot more people with the kind of success Jamie has had."
And, he added, the problem would remain more an issue of society's willingness to deal with Burke rather than his desire to interact with society.
"Clearly, the biggest struggle is with a society that doesn't get it and is still uncomfortable with disability," Biklen said.
Burke is philosophical about the upper limits of his progression. Even as he chips away at his limitations, he is accepting of his disability.
He typed, then said: "Autism is a partner in my dance of life and I fear sending it to a seat on the side."
(Source: Syracuse Post-Standard, July 31, 2006)
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9, 2003
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 Lynn Bariteau gets a hug from her son, Tyler Fihe, who is autistic.
Sentinel Photo by Shmuel Thaler
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Autism spike baffles experts
Wave of local cases threatens school, social service systems
By PEGGY TOWNSEND
Sentinel staff writer
Seventeen-year-old Tyler Fihe lives in a world few people can understand.
He can watch a single ‘‘Sesame Street’’ video for hours at a stretch and play one song on his CD player so many times it becomes almost unbearable to those around him.
He’ll flick his fingers into a shape like a shadow-puppet dog and stare at it like he was seeing his hand for the first time.
And if you let him, Tyler could rock in one chair for a whole afternoon.
Tyler is autistic, a boy at the forefront of a tidal wave of kids like him — and one that threatens to swamp school and social service systems in the coming years.
It is a wave that has left researchers wondering if the leap in the number of autistic children is simply a new way of diagnosing what has been there all along, or if there is something in the environment triggering a string of cases.
In Santa Cruz County, the number of children diagnosed with autism and autism-related disorders has nearly doubled during the past 10 years — with an apparent, and unexplained, concentration of cases in the Aptos area.
Scientists know little about what causes the condition, although a surge of money has gone into research, including the establishment of an autism study center called the M.I.N.D. Institute at UC Davis.
Some scientists believe autism has both hereditary and environmental origins — some kind of genetic hard-wire that makes a child more susceptible to an outside trigger.
Everything from childhood vaccines to viral infections to pesticide use are being examined as potential causes.
But whatever the reason, no one disputes that autism numbers are on the rise and will have a substantial financial impact on the state and an even bigger emotional impact on the families it affects.
world he lives in.
"I think people need to see beyond what the eyes can see. To see BE-yond" he says, repeating the words in a sing-song voice as he types them into the computer.
He types some more.
"I can’t talk like you," he says. "But I can think.
"Sometimes I’m thinking so much I feel like I’m going to burst wide open."
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Lucy Harrison uses facilitation with her mother, Nita Harrison, who said it gave her a new window into her autistic daughter's life. (ABCNEWS.com) |
Making Their Way
Despite Critics, Autistic Youths Still Typing
Jan. 20 — Autism is like a heavy curtain between its sufferers and the outside world, and when facilitated communication was introduced, it seemed like the curtain had lifted and autistic people were at last able to reveal themselves.
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Facilitated communication is an attempt to help autistic children speak by using a "facilitator" to steady their hand as they type words and sentences into a keyboard, expressing their thoughts. The facilitator — or whomever is standing there — is able to read it aloud. It was 11 years ago when facilitated communication first started making waves in the autistic community.
When ABCNEWS' Diane Sawyer interviewed three teenagers about it back in 1991, they told her that facilitated communication had changed their lives. One 16-year-old autistic boy, Jeff, seemed overjoyed at being able to communicate.
"Yes, it has changed my life because now I can let people know that I am intelligent and I am good with words and I care about people," Jeff's facilitator said, reading what the teen had typed into the keyboard. "I love them."
But several leading experts in the field said they tested facilitated communication scientifically and found conclusively that it didn't work — at all — and that well meaning facilitators were unconsciously guiding fingers toward the keys. Still, the families of the three teens that ABCNEWS met, Lucy Harrison, Ben Lehr and Jeff Powell, say they have continued to use facilitated communication and when Good Morning America visited them again recently, each said it was still changing their lives.
'We Didn't Know She Was There'
Lucy Harrison, who was 15 at the time of the first interview, talked about autism when ABCNEWS first met her.
"I wish I was not autistic," Lucy Harrison said through facilitated communication. "I wish I could do all the things other kids do."
Nita Harrison, Lucy's mother, said her daughter's communication astounded the family.
"As she says, 'I am like everyone else inside my body,'" Nita Harrison said."And she is in there, two feet away from us, and we didn't know she was there."
Lucy Harrison is now 26, and her facilitators touch only her shoulder as she types into the keyboard. She speaks as she types — though not always clearly — and is an incredibly fast typist. Observing her, it seems impossible that her words are not her own as she writes about facilitated communication, which she calls FC.
"And a good way to be in the world was a way to have the FC for the people who need understanding," she typed. "The person who's autism, the person will be the one who needs to be the....quickly the world will pass the person with the lack of the communication."
" (Communi) 'cation, yes," she says aloud as she typed.
Lucy is nearly finished with college, taking classes with the help of facilitated communication, and is thinking about getting a job when she's through, possibly at Pizza Hut, she says.
A Poet of Winter
Jeff Powell was 16 when ABCNEWS first met him, and through facilitation he explained that his body makes involuntary movements that he can't control
"Yes, it does what it wants to," Powell's facilitator said, reading the words typed out by Powell. "Sometimes I can't help what it does."
Powell, an ace student and inspired poet, audited a couple college courses after high school, but then stopped going to school. His practice of typing without looking — shared by many people with autism — is something even supporters say seems impossible.
He still writes poetry with facilitated communication: "Caving in the snow, my feet feeling cold, snowbound, not easily defrosted, testing the icy jingles of fresh freezing snow … "
Ben Lehr, another teen, was full of personality when ABCNEWS met him in 1991. He declared himself a Democrat and typed out that Anita Hill was telling the truth.
Lehr, now 29, finished college and surprised his parents, by telling them, they say, through facilitated communication, that he wanted to get a roommate and move out on his own. He did just that, and today, with his sister's help, he builds furniture that is sold in local stores.
The three teens who first told their stories a decade ago are each in their way —making their own way in the world.
"It was a dream of the … getting the cure, the cure of the autism, autism," Lucy Harrison said.
