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Outo onnekas Veeti

Koulussa Nevalaisen Veeti vietti välitunnit pöydän alla lukemassa.

Luokkakavereiden kanssa tuppasi tulemaan riitaa: omituinen Veeti hermostui muiden yrityksistä ottaa kontaktia ja sanoa töksäytti välillä rumasti. Opettajat eivät oikein osanneet sanoa, onko pöydän alla nököttävä lapsi kiusaaja vai kiusattu.

12-vuotiaiden maailman sosiaaliset säännöt lienevät joskus olleet vaikeita kaikille. Suorapuheinen, looginen, omissa oloissaan viihtyvä Veeti ei edes yrittänyt päästä osaksi laumaa. “Askeleen päässä autismista”, koulupsykologi diagnosoi Veetin kuudennen luokan lopuksi. Aspergerin oireyhtymä, autismin lievä muoto, oli vielä uusi diagnoosi ja psykologille kai vieras.

Aspergerin syndrooma ei oikeastaan ole sairaus lainkaan: lääkkeet tai terapia eivät sitä paranna. Veeti Nevalaisen aivojen erikoisuus syntyy hienoisista poikkeavuuksista siinä, miten aivojen eri osat kommunikoivat toistensa kanssa. Veeti ajattelee toisin.

“Jos silloin olisi tiedetty Aspergerista, koulunkäynti olisi varmaan helpottunut”, Nevalainen pohtii. “Ei olisi ollut niin vahvaa oletusta, että sun on käyttäydyttävä sosiaalisesti juuri näin tai muuten olet vääränlainen.”

Asperger-henkilöt, assit, hahmottavat asioita kirjaimellisesti ja korostetun rationaalisesti. Sosiaalisten tilanteiden loputtomat nyanssit ja tulkinnat vaikuttavat vieraalta kieleltä, ja ne tuhannet sosiaaliset säännöt, jotka ovat muille itsestäänselviä, on opeteltava ulkoa. Juuri kouluajat voivat olla erityisen rankkoja: oman tien kulkijoita ja outoja töksäyttelijöitä siedetään peruskoulussa huonosti.

Nuori Veetikin oppi hitaasti ja monen riidan kautta sosiaalisen valehtelun ja muiden miellyttämisen taitoja. Sen, että toisen vaatteita ei sanota rumiksi, vaikka se olisi totta.
“Möläyttelyyn ja töksäyttelyyn olisi auttanut se, että joku olisi vienyt mut rauhassa syrjemmälle ja selittänyt, että älä toimi näin, vaan toimi mieluummin näin. Ja selittänyt perään, että miksi. Assit perää aina sitä loogista selitystä.”

Pöydän alla istunut koululainen ei muuten ollut mikään Veeti vaan Mira. Ala-asteen oudosta töksäyttelijätytöstä on kasvanut 19-vuotias nuori mies. Veeti Nevalainen, apuvälinetekniikan opiskelija askeleen päässä autismista, on matkalla uuteen sukupuoleen. Mutta se olisi aivan toinen tarina.

Nevalaisen Asperger-piirteet eivät varsinaisesti hypi silmille. Hän on älykäs, sanavalmis ja tavattoman tyylikäs, pärjää opinnoissaan ja käy ulkona.

Ja siksi kai puhutaan autismin kirjosta: autismi ei enää ole yksi diagnoosi vaan rykelmä sellaisia, ja kukin kirjon piiriin kuuluva diagnoosi on liukuma erilaisia oireita ja eri tason toimintavaikeuksia. Edes yksittäisen ihmisen sijainti autismin kirjolla ei ole muuttumaton. On hyviä ja huonoja päiviä.

“Ennen kuin lähdin hakemaan diagnoosia, kyselin kavereilta paljon, että päteekö joku tietty Asperger-piirre minuun. Että kämminkö mä kauheasti. Eihän sitä itse voi tietää, jos on sosiaalisesti vaikka täysin sokea.”

Ja kämmiihän Veeti, kaverit vastasivat, koko ajan. Sosiaalinen elämä on kuitenkin käynyt helpommaksi. Aikuistumisen myötä Nevalainen on oppinut noudattamaan neurotyypillisten – siis kaikkien standardiaivoisten – asettamia sääntöjä ja toisaalta hakeutunut entistä sallivampaan seuraan. Hän tietää, miksi toisen paitaa ei sanota rumaksi.

Mikä Nevalaisen käytöksessä sitten ylittää normaalin rajat? Milloin siirrytään arkisesta omituisuudesta neuropsykologisen poikkeavuuden alueelle? Raja on liukuva, Nevalainen sanoo, mutta diagnoosille lienee tarvetta silloin kun oireet tosissaan häiritsevät ihmistä ja tämän lähipiiriä.

“Mussa niitä piirteitä on sosiaalinen kömpelyys, asioihin jumiutuminen ja pakko-oireet. Tykkään siitä, että arki kulkee aina täsmälleen samanlaisena ja on täysin omassa hallinnassa.”

Pankkivierailuun täytyy valmistautua kuukausikaupalla, Nevalainen kertoo. Mitä enemmän hän valmistautuu, sitä enemmän hermostuttaa: mitä jos jokin ei menekään suunnitelmien mukaan? Jos pitkään mietitystä puheenvuorosta unohtuu sana ja itseluottamus kaikkoaa? Pankki on yksi niistä paikoista, joissa Nevalaisen odotetaan esittävän normaalia – vähän kuten aikanaan koulussa.

Ja sitten on koskettaminen. Nevalainen vaatii tuttaviaan varoittamaan etukäteen, jos he aikovat halata. Ei siksi, että kosketus sinänsä olisi vastenmielistä – Asperger-aivojen on vain vaikea tulkita lähestyvän ihmisen ruumiinkielestä tämän aikeita. Nevalainen ei tiedä, aikooko toinen halata vai lyödä.

Katsekontakti ja kosketus ovat tärkeitä rituaaleja neurotyypillisen ihmisen sosiaalisessa perusohjelmoinnissa. Niiden puute tulkitaan kylmyydeksi, epäinhimillisyydeksi; katsetta ja kosketusta välttelevä ihminen koetaan uhkaavaksi.

“Ihmiset, jotka tuntee mua huonosti, loukkaantuu, jos kiellän koskemasta. Ne saattaa rationaalisesti ymmärtää asian, mutta silti niitä loukkaa se, että ne eivät saa osoittaa läheisyyttä tuollaisilla sosiaalisesti yleisesti hyväksytyillä tavoilla. Ne sanovat haluavansa vaan piristää, mutta ei se piristä mua."

Asperger-aivojen omalaatuisuus ei asu missään pääkopan yksittäisessä osassa. Nykytietämyksen mukaan Veeti Nevalaisen aivoissa syntyy paljon lyhyitä yhteyksiä ja vähän pitkiä: tietoa on paljon, mutta se liittyy rajattuihin alueisiin ja sitä on vaikea etsiä ja yhdistellä. Kiinnostus yksityiskohtiin sumentaa kokonaisuuden tajun.

Ammatinvalintatestien mukaan Nevalainen on kaikessa joko erittäin hyvä tai hämmästyttävän huono. Siinä on hyvätkin puolensa. Asperger-aivot on optimoitu huippuasiantuntijuuteen.

Nevalaisen intensiivisen kiinnostuksen alueita on kolme: mutterit, kirjat ja neuropsykiatria. Apuvälinetekniikan opinnot sallivat ainakin välillä uppoutumisen johonkin näistä kolmesta. Nykyään myös lähipiiri jaksaa seurata tolkutonta innostumista.

“Kaikki, mikä kimaltaa ja on maassa, on otettava mukaan ja mielellään laitettava myös suuhun. Nykyään ihmiset ymmärtää aika hyvin sitä, että se mutteri on oikeasti mun mielestä ihan mielettömän upea ja loistava ja mahtava asia. Yläasteella sitä pidettiin erikoisuuden tavoitteluna.”

“Se on ehkä Aspergerin hyvä puoli. Mä voin olla niin mielettömän kikseissä jostain asiasta, johon kukaan normaali ihminen ei kiinnittäisi mitään huomiota.”

Epätyypillinen maalaa tyypillisen näkyviin. Autismin kirjon – siis Aspergerien, autistien, hyperaktiivisten ja muiden neuropsykologisesti erilaisten – olemassaolo piirtää rajat myös normaaliudelle, neurotyypillisten luokalle.

Pärjätäkseen maailmassa Nevalaisen on hallittava kaksi tapaa käyttää aivojaan: sen itselle tyypillisen Asperger-tyylin lisäksi on pyrittävä ymmärtämään myös neurotyypillisten ajattelua. Neurotyypillisten aivot puolestaan ovat tavallisesti yksikielisiä. Enemmistön ei ole tarvinnut sopeutua vähemmistön tapaan olla.

Nevalainen pohtii, että jos jokin on neurotyypillisen ajattelulle ominaista, niin tapa selittää asioita epäselityksillä. “Miksi näin tehdään?” “No kun niin on tapana.” Neurotyypillisen päättely on epäloogista ja nojaa välillä järkeen, välillä taas tunteeseen tai totuttuun. Ja negatiiviset tunteet – niitä ei millään haluta ilmaista suoraan.

“Neurotyypillisten logiikka muistuttaa mun mielestä sitä naisten logiikkaa, josta miehet valittaa – muka-logiikkaa, josta kukaan ei ymmärrä mitään. Tavallaan mulle kaikki on naisten logiikkaa, paitsi että mä en ymmärrä kumpaakaan sukupuolta.”

Loppujen lopuksi on kai kyse jatkumosta, jossa jokainen on jotakuta muuta epätyypillisempi. Autistien oikeuksien liikkeen parissa puhutaan neurodiversiteetistä: siitä, että tyypillisiä aivoja ei olekaan, ja eroavaisuuksia on helpompi sietää jos niitä ei luokitella puutteiksi.

Ajattelutapojen moninaisuuden tajuaminen lienee vaikeinta niille, jotka sijoittuvat jonnekin sosiaalisten kykyjen jatkumon äärilaidoille. Sosiaalisesti huiman älykkäälle ihmiselle autistin kohtaaminen on pelottavaa.

“Me autismikirjolaiset ollaan ihmisiä joihin on vaikea saada kontaktia. Kyllä mä ymmärrän, että se pelottaa sellaisia ihmisiä, jotka ovat tottuneita aina lukemaan toista ihmistä. Ei voi olla kovin helppoa kohdata ihmistä, jolla on hirveän vähän ilmeitä, eleitä ja äänenpainoja, ja joka aina tarkoittaa täsmälleen sitä, mitä sanoo.”

Veeti Nevalaisen viimeisin diagnoosi on yhä ala-asteen koulupsykologin epävirallinen arvio “askeleen päässä autismista”. Virallisen diagnoosin hankkiminen kiinnostaisi, mutta se on aikuisiällä vaikeaa. Tällä hetkellä ainoa mahdollisuus siihen löytyisi yksityisen terveydenhuollon puolelta, ja siihen opiskelijalla ei ole varaa.

Moni myös kapinoi diagnoosiaan vastaan. Sairausluokitus ja sen sisäiset tasoarviot koetaan vammauttaviksi: “hyvätasoiseksi” luokiteltu autisti ei saa tarvitsemaansa apua, “huonotasoista” taas kohdellaan kuin lasta.

Nevalaista Asperger-identiteetti on kuitenkin auttanut. Lääketieteellinen selitys auttaa muita ihmisiä ymmärtämään hänen erikoisuuttaan. Se taas vähentää painetta piilotella omia oireita.

“Sairausluokitus on siitä hyödyllinen, että erilaisuutta ei pidetä luonteenpiirteenä, josta pitää oppia pois. Suomessa vallitsee kuitenkin hirveän vahva behavioristinen näkemys, että ihmiset voi opettaa olemaan ihan mitä tahansa. Toisaalta tajuan, että moni pelkää esimerkiksi menettävänsä työpaikkansa, jos sana diagnoosista leviää.”

Ja jos diagnoosin saaminen helpottuisi ja tieto leviäisi, ehkä entistä useampi autismikirjolainen tulisi kaapista, Nevalainen pohtii. Silloin olisi helpompi vaatia tiettyä kunnioitusta työpaikkojen ja koulujen neurotyypilliseltä enemmistöltä – ja ehkä vaatimus normaaliksi naamioitumisesta hellittäisi.

“Sopeutumisvalmennuksissa neuvotaan yhä, että 'kengät jalassa housunlahkeiden tulee ulottua sentin verran maan yläpuolelle'. Se on sellaista 'näin näytät normaalilta' -koulutusta. Tärkeämpää olisi keskittyä siihen, miten tulet toimeen omien oireidesi kanssa ja miten saisit ympäristön ymmärtämään oireitasi paremmin.”

Vihreällä kortilla pyydetään varsinaista puheenvuoroa, oranssilla kommenttia. Autismikirjolaisten järjestötoiminta vaatii piirun verran ankarampaa järjestystä kuin tavallinen aktivismi. Silti se toimii, ja tavalla jota harva olisi arvannut vielä muutama vuosi sitten.

“Kaikki yhteistoiminta pitää miettiä viisitoista kertaa etukäteen läpi, ja jos joku ei mene sovitulla tavalla, kaikkiin iskee paniikki”, Nevalainen kuvaa. “Mutta yhdessä tekeminen on tosi hyödyllistä. Kaikki eläytyvät hyvin siihen, miltä toisista tuntuu.”

Nevalainen on mukana järjestämässä kesäkuista Autistic Pride Day -juhlaa, jota vietetään maailmanlaajuisesti vasta kolmatta kertaa. Tapahtuman kasvu on ollut melkoinen yllätys etenkin monille lääkäreille, joiden silmissä autismin kirjoa määrittää nimenomaan kyvyttömyys vuorovaikutukseen.

Verkostoitumisen myötä halu yhteiskunnalliseen vaikuttamiseen on vahvistunut alan järjestöissä. Enää ei riitä se, että autismikirjolaisia valmennetaan pärjäämään arjessa neurotyypillisten ehdoilla – pelisääntöjen on muututtava.
Nevalainen aloittaisi muutoksen kouluista ja työpaikoilta. Vähemmistön hiljaisuus on mahdollistanut syrjinnän, hän uskoo.

“Työelämässä ihmisiltä vaaditaan aina vähän enemmän kuin olisi tarpeen tai mihin he pystyvät. Osaat ehkä hommasi täydellisesti, mutta määräaikaista virkaa ei jatketa, koska et sulaudu sosiaalisesti työyhteisöön, et käy yhteisissä saunailloissa. Tosi moni on suojatyöpaikoissa tai jumissa pätkätöissä, vaikka siihen ei ole mitään todellista syytä.”

Enemmistö ei ole ikinä avannut silmiään vähemmistön näkökulmalle, ellei vähemmistö ole itse pitänyt itsestään meteliä. Nevalaiselle näitä vaihtoehtoisia näkökulmia on siunaantunut keskimääräistä enemmän ihan luonnostaan. Autismikirjolainen ja transsukupuolinen Veeti kävelee kepin tuella, sillä onnettomuudessa saatu aivovamma jätti viime vuonna jälkeensä kroonisen huimauksen. Sekin auttaa katsomaan maailmaa viistosti, standardinäkökulman ulkopuolelta.

“Ottaahan se välillä päähän, mutta ongelmansa kullakin. Ainakaan en ole yksi niistä, jotka pohtii jotain suvaitsevaisuuskysymyksiä: että suvaitaanko me nyt jotain homoja tai vammaisia. Mulle sellainen puhe kuulostaa ihan absurdilta – että mitä erityistä suvaitsemista niissä nyt on? Pidän itseäni siinä mielessä aika onnekkaana.”

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Kirjava autismi

• Autismin kirjoon kuuluu joukko keskenään samankaltaisia neuropsykologisia oireyhtymiä, joilla on geneettinen pohja.

• Kirjoon arvioidaan Suomessa kuuluvan 35 000–50 000 ihmistä.

• Noin kolme neljästä kirjoon kuuluvan diagnoosin saaneesta on miehiä. Naisten epäillään jäävän useammin diagnosoimatta.

• Aspergerin oireyhtymä -diagnoosiin liittyy tyypillisesti suhteellisen vahva kielellinen ilmaisu, mutta kommunikointi nopeasti muuttuvissa sosiaalisissa tilanteissa voi olla vaikeaa.

• Autismin kirjoon liittyy usein myös positiivisia oireita: kyky keskittyä intensiivisesti omiin kiinnostuksenkohteisiin, omaperäinen mielikuvitus sekä poikkeuksellinen kyky visuaaliseen ajatteluun ja itsenäiseen päättelyyn auttavat menestymään mm. luonnontieteiden tai taiteen aloilla.

• Autismi-diagnoosi syntyi 1940-luvulla. Aspergerin oireyhtymä ilmestyi sairausluokitukseen vuonna 1994.

• Autismin kirjoon kuuluvia oireita on usein selitetty virheellisesti lapsuustraumoilla tai skitsofrenialla.

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Amanda Baggsin oma kieli

”Minun kieleni ei perustu sanoihin tai visuaalisiin symboleihin, joita ihmisten tulisi tulkita. Siinä on kyse jatkuvasta keskustelusta koko ympäristöni kanssa.”

Tietokoneohjelman mekaaninen naisääni lukee manifestia. Videolla autistinainen pyörittää käsiään ilmassa, remputtaa piirongin nuppia ja hieroo kasvojaan kirjaan. Naisen melodinen hyminä jää soimaan päähän.

”On ironista, että kun vastaan näin ympäristölleni, liikkumisestani sanotaan, että olen ’omassa maailmassani’. Jos taas rajoitan itseni vähäisempiin toimintoihin ja reagoin vain tarkkaan rajattuihin asioihin, ihmiset sanovat, että olen ’avautumassa maailmalle’.”

Tietokoneääni on kanava, jonka kautta 27-vuotias yhdysvaltalainen Amanda Baggs viestii ei-autistien maailmaan. Baggs ei puhu. Silti hänestä on tullut autistien oikeuksien liikkeen voimakkain ääni, ja yksi sen radikaaleimmista.

Baggsin mukaan hänen manifestinsa puolustaa kaikkia niitä, jotka jätetään huomiotta, koska heidän epätavalliset viestintäkeinonsa hämmentävät valtaväestöä. Teksti pätee autistien lisäksi viittomakielen käyttäjiin, liikuntavammaisiin ja niihin, joiden puheessa on aksentti, sekä eläimiin, joiden puhumattomuus sokeuttaa ihmiset niiden tunteille.

Baggs ilmaisee itseään tietokoneen avulla kirkkaasti ja kauniisti. Hän haluaa silti yleisönsä muistavan, ettei teknologia ole antanut hänelle itseilmaisun lahjaa: se hänellä oli jo ennestään. Puhe "muiden kielellä" on välttämätöntä vain siksi, että harva ymmärtää Baggsin omaa kieltä, jota puhutaan kaikilla aisteilla.

Baggs on esimerkki siitä, miten syvää autismia on tulkittu väärin vuosikymmenten ajan, aivotutkija Thomas Zeffiro sanoo Wired-lehden haastattelussa. ”Jos hän olisi kävellyt klinikalleni viisi vuotta sitten, olisin diagnosoinut hänet huonotasoiseksi autistiksi, jonka kognitiivinen toiminta on merkittävässä määrin rajoittunutta. Olisin ollut täysin väärässä.”

Amanda Baggs on synnyttänyt myrskyn autismitutkimuksen maailmassa. Autistien vanhemmat pelkäävät, että Baggsin ristiretki sairausluokitusta vastaan uhkaa riistää hoitomahdollisuuksia niiltä, joille autismi todella on invalidisoiva sairaus. Skeptikot epäilevät, voivatko taidokkaat videot todella olla autistin kuvaamia ja leikkaamia tai tekstit tämän käsialaa. Baggs vastaa epäilijöille yhä uusilla manifesteilla.

”Tämä on julistus monien erilaisten ajattelun ja vuorovaikutuksen mallien olemassaolosta ja arvosta maailmassa, jossa sinun suhteesi yhteen tiettyyn malliin määrittää, nähdäänkö sinut oikeana henkilönä, aikuisena tai älyllisenä ihmisenä”, Baggsin koneääni sanoo. ”Vasta kun ihmisyyden monet muodot tunnustetaan, voivat oikeudenmukaisuus ja ihmisoikeudet olla mahdollisia.”

ballastexistenz.autistics.org
youtube.com/silentmiaow

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Oikeus olla autisti

Sokeilta ei edellytetä näkemään opettelua Kelassa tai työvoimatoimistossa asiointia varten, Jan-Mikael Fredriksson huomauttaa. Miksi neuropsykologinen poikkeavuus pitäisi sitten kätkeä?

Autismi- ja Asperger-liiton empowerment-toimintaa suunnitteleva Fredriksson on sitä mieltä, että viranomaisten olisi jo aika tulla autismikirjolaisia vastaan. ”Ihmisistä tuntuu, että heitä vaaditaan muuttumaan jotenkin toisenlaisiksi, että tulisi ymmärretyksi ja saisi palveluja. Kun pärjäävänoloisella ihmisellä on ongelmia virastokielen tai kaavakkeiden täyttämisen kanssa, sitä pidetään kiukutteluna tai teeskentelynä.”

Fredriksson haluaa nyt olla mukana rakentamassa omaehtoista autismikulttuuria ja muuttaa yhteiskunnan suhtautumista autismikirjoon. Sen sijaan, että autisteja yritettäisiin pakottaa muiden asettamiin käyttäytymisnormeihin, onkin väljennettävä normeja, Fredriksson vaatii.

”Autismi voidaan nähdä erilaisuutena ja erityisyytenä, täydentävänä tapana hahmottaa maailmaa. Ei häiriönä tai sairautena.”

Ilmaisuvoimaisten ja itsenäisten autismikirjolaisten esiinmarssi viime vuosina on muuttanut radikaalisti oletuksia ryhmän tarpeista ja mahdollisuuksista. Fredrikssonin mukaan kumousta selittää osaltaan internet, jota on sanottu autisteille viittomakieleen verrattavaksi välineeksi.

Tietotekniikan avaaman kommunikaatioyhteyden avulla monesta vuorovaikutuskyvyttömänä pidetystä laitosasukista on kuoriutunut älykäs ja oikeuksiaan vaativa ihminen, jolle oikea paikka on kenties laitoksen sijaan oma asunto. Se taas asettaa uusia vaatimuksia terveydenhoitoalalle: olisi tarjottava kevyttä apua, joka kattaa todelliset tarpeet mutta kannustaa itsenäisyyteen.

Autistien oikeuksien liike lainaa kieltä ja kuvastoa historian vapautusliikkeiltä. Fredrikssonin mukaan samastumiseen on hyvä syy, sillä jokainen voitto maailman moninaisuuden puolesta auttaa muita alistettuja ryhmiä.

”Kun homoutta pidettiin sairautena, se mahdollisti pakkotoimet. Kun vasenkätisyys nähtiin virheenä, vasureita pakotettiin kirjoittamaan oikealla kädellä. Valkoiset ovat pitäneet mustaihoisia lapsina, jotka eivät ymmärrä omaa etuaan ja tarvitsevat valkoisen ihmisen kaitsemaan ja ohjaamaan. Nämä ovat meille hirveän tuttuja asioita.”

Autistin kohtaaminen on testi muille ihmisille, Fredriksson pohtii. Se voi laajentaa tajuntaa.
”Kaikki kehitys sallivampaan suuntaan on tärkeää koko yhteiskunnalle. Se etenee, kun erilaisia ihmisiä tulee esiin koloistaan ja saa äänen.

23. syyskuuta 2007


Mitä voimme oppia sademieheltä

Harvoin amerikkalainen mainstream-elokuva kertoo näin vaikuttavan tarinan, kuin Sademies. Elokuva kertoo omahyväisestä liikemiehestä, Charlie Babbittista (Cruise), joka kuulee, että hänen isänsä on kuoltuaan jättänyt koko omaisuutensa autistiselle veljelle Raymondille (Hoffman), jonka olemassaolosta Charlie ei ollut aikaisemmin tiennyt. Hän pyrkii rahan toivossa tekemisiin veljensä kanssa ja kaappaa tämän mukaansa hoitokodista, jossa tämä siihen asti on asunut. Matkan edistyessä hän kuitenkin ystävystyy veljensä kanssa, mikä vaikuttaa positiivisesti myös Raymondiin.

Tärkeämmässä roolissa elokuvassa on ohjaajan mielestä Charlie. Hän muuttuu ja kasvaa Raymondin opissa veljesten pitkän matkan aikana, kun taas Raymondin muutosta ei näy ulospäin. Tämä on harvoja elokuvia, joissa katsoja itse huomaa muuttuvansa matkan varrella. Vaikka elokuvaroolissa sademiehen kommunikaatiotaidot ei muutu, voimme huomata kasvua ja oppimista uusissa sosiaalisissa tilanteissa, joita hän matkan varrella kohtaa vaikka kaipaakin tuttuja laitoksessa opittuja rutiineita.

Pakko ja pelko aiheuttaa stressitilanteet, joista on vaikea selvitä. Yhteisymmärryksen löydyttyä vaikeimmatkin asiat pystytään hoitamaan. Elokuvassa nousee esiin katsojan oma kasvaminen vammaisen omaisen rinnalla. Auktoriteettisuhde autistisen henkilön kanssa toimi. Komentaminen ei auta. Asettumalla viisaampana toisen yläpuolelle aiheuttaa muurin kommunikaatioon. Kun ymmärtää, että autistiseltakin ihmiseltä voi oppia yhteistyö ja kommunikaatio aukeaa.

Elokuvan sademies on matemaattisesti lahjakas, mutta ei pysty hoitamaan omia asioitaan. Tähän ei kuitenkaan syynä ole autismi, kuten elokuvan lääkäri päättelee, vaan pitkäaikainen laitoshoito, joka ei opeta taitoja selvitä itsenäisestä elämästä. Ilman tarvittavaa kuntoutusta autistinen ihminen helposti taantuu.

Vaikka elokuvassa sademies palaa laitokseen, jää tarina loppu avoimeksi. Sademiehen roolimalli Kim Peek toimii kirjaston hoitajana ja asuu itsenäisesti. Elokuvan DVD-version lisämateriaalit kertovatkin elokuvan malleina olleista autistisista henkilöistä. He ovat selviytyneet vaikeuksistaan huolimatta erityislahjakkuuksien ansiosta itsenäiseen elämään. Elokuva antoi autismille kasvot ja on inspiroinut mm. autistien oikeuksien liikettä. Se on kasvattanut autismin kirjon perheiden itsetuntoa. Lopulta on voitu tunnustaa ja olla omasta autistisesta sisaruksesta.

Sademies oli ehdolla kahdeksaan Oscar-palkintoon. Se voitti niistä neljä, sillä sille meni parhaan elokuvan, Dustin Hoffmanille parhaan miespääosan, Barry Levinsonille parhaan ohjauksen ja Ronald Bassille ja Barry Morrow'lle parhaan alkuperäisen käsikirjoituksen palkinto. Elokuva palkittiin myös parhaan draamaelokuvan Golden Globella ja Hoffman ansaitsi Globen parhaasta miespääosasta draamaelokuvassa.

Elokuvan DVD-version lisämateriaalit ovat ensiluokkaisia ja auttavat ymmärtämään paremmin mistä autismissa on kyse. Seuraava video kertoo Kim Peekistä, joka toimi sademieselokuvan esikuvana.


Real-life 'Rain Man'. - More bloopers are a click away

16. syyskuuta 2007

Meissä kaikissa asuu pieni autisti

Seuraavassa "Autism: The Musical" ohjaajan Tricia Reganin haastattelussa nähdään väläyksiä uusimmasta draamaan perustuvasta autismikuntoutuksesta. Reganin elokuva seuraa autistisia lapsia ja heidän vanhempiaan Elaine Hallin kehittämässä draamakuntoutuksessa. Elokuva on saanut erinomaista palautetta mm. Tribeca Film Festivaaleilla.

Draamakuntoutuksessa lapsen haastavaa käytöstä ei nujerreta pakolla, perinteisten psykodynaamisten terapioiden tapaan. Draamakuntoutuksessa paneudutaan aluksi aidosti lapsen omaan maailmaan. Näin saavutetaan lapsen luottamus ja kommunikaatiotaso. Tämän jälkeen lapsi voidaan ohjata myös tähän maailmaan ja syntyy pohja tehokkaalle kuntoutukselle. Tulokset draamakuntoutuksesta ovat hämmästyttävän hyviä.

The Alcove ohjelmassa ohjaajaa haastattelee Mark Molaro. Tässä hienossa haastattelussa Tricia Reganin kertoo kuinka myös autistisen lapsen vanhemmat ja suhde lapseen ovat muuttuneet kuntoutuksen myötä. Haastattelussa ohjaaja kertoo lopuksi omasta suhteestaan autismiin, kuinka tämän elokuvan teko ja tutustuminen autismiin auttanut häntä ymmärtämään paremmin omia vahvuuksiaan ja heikkouksiaan - meissä kaikissa asuu pieni autisti.



"Autism: The Musical" on tulossa teatterilevitykseen vuonna 2008. Toivottavasti saisimme tämän kiinnostavan, vahvan dokumentin myös Suomeen.

14. heinäkuuta 2007

Assimaisuus eri kulttuureissa

Emeritusprofessori Theodore Millon kertoo tuoreimmassa Scientific American Mind (3/2007) lehden artikkelissa kuinka Japanissa ei pidetä pyrkimystä äärimmäiseen täydellisyyteen psykiatrisena obsessiona tai patologisena käyttäytymisenä kuten lännessä, sillä täydellisyyden tavoittelu on osa japanilaista kulttuuria. Tämä autismiinkin liitetty ominaisuus on siis patologista lännessä. muttei idässä. 

Esa-Pekka Salonen vieraillessaan Suomessa vertaili ylpeänä raitiovaununussa hiljaisena mököttäviä suomalaisia Amerikan intiaaneihin, jotka hän näki yhtä itsetietoisina kuin maanmiehensä. Yleensähän ulkomailla "sivistyneet" härmäläiset ovat huolissaan "smalltalkin" puuttesta, vertaillessaan itseään vaikkapa ruotsalaisiin. 
Autististahan tuo suomalaisten hiljaisuuden sietokyky on. Mutta silti tosi-assi on sikäli poikkeava, että esimerkiksi puolison löytyminen on usein kiven takana, kun on tuo "smalltalk" ja hiljainenkin viestintä niin hankalaa. Väärinkäsitykset on arkipäivää. Vaihtoehtona onkin "jos ei maassa maan tavalla – niin maasta pois". Simon Baron-Cohen mainitsee teoksessaan "Olennainen ero", että monet assit ovat löytäneet puolison oman kulttuurin ulkopuolelta, jolloin puolison assimaisuus pannaan vieraan kulttuurin piikkiin. 
Ritalin on keskusteluissa nostanut suomalaiset esille autistisena kansana. Tuntuukin siltä, että autismin piirteet vaihtelee heimosta heimoon. Suomessakin löytyy hiljaiset hämäläiset ja vilkkaat karjalaiset. Eli meitä on moneksi. Heimoperusteella hyväksymme erilaisuutta, mutta kun samat piirteet psykologisoidaan niistä tuleekin patologista! 
Olisi hauska kuulla minkälaisia kokemuksia on assi-piirteistä eri kulttuureissa?

________________________________________________________________

Autistisen oireyhtymän ennustetta pidettiin aina 1970-luvulle saakka
huonona ja eräiden tutkimusten mukaan aikuistuneista autisteista oli
38 - 76% sijoitettuina laitoksiin. Heidän koettiin olevan muihin
laitosasukkaisiin verrattuna vaikeammin hoidettavia, koska he eivät
olleet saaneet asianmukaista kuntoutusta.

Lähes ainoa kuntoutusmuoto oli yksilöterapia, jota ei tosin ollut edes
tarjolla kaikille autistisille lapsille. Pikkuhiljaa kuitenkin
lääkkeiden ja yksilöllisen psykoterapian käyttäminen alkoi väistyä ja
ajatus mahdollisimman varhain aloitetusta tiedonhankintaan ja
jäsentämiseen tarvittavien toimintojen sekä sosiaalisen kommunikaation
osuudesta kuntoutuksesta käyttäytymisongelmien vähentämiseksi alkoi
yleistyä.

Aikojen saatossa on tapahtunut myös suuria muutoksia asennoitumisessa
autististen lasten vanhempiin ja heidän merkitykseensä lastensa
kuntoutuksessa. 1940 - 1960 -luvuilla nähtiin autismin johtuvan äiti-
lapsi -suhteen häiriöstä ja tuolloin puhuttiin tunneköyhistä niin
sanotuista "jääkaappivanhemmista". Vanhempia pidettiin syyllisinä
lapsensa vammaisuudesta, mutta nykyaikana tutkimukset ovat
vahvistaneet autismin biologisen perustan.

Vanhempien rooli lapsensa parhaina asiantuntijoina sekä
kuntoutusryhmän jäseninä on noussut yhä enemmän esille. Jokaisen
autistisen henkilön kohdalla tulee kuntoutus suunnitella
yksilöllisesti ja miettiä, mikä on vanhempien rooli kuntoutuksessa.
Autistisen lapsen vanhemmilla on hyvin haastava kasvatustehtävä. He
tarvitsevat keinoja ja tukea, jotta jokapäiväiset askareet sujuisivat
lapsen ja koko perheen kannalta tarkoituksenmukaisesti.

Autistin kuntoutuksessa perheiden merkitys on suuri, koska heillä on
lapsestaan pitkä kokemus, ja kuntoutus perustuu mahdollisimman
tarkkaan tietoon juuri tästä autistisesta ihmisestä persoonana. Näin
heidän asiantuntijuutensa huomioiminen myös aikuisen autistisen
henkilön kuntoutuksessa on tärkeää.

Toisaalta autistisen henkilön kuntoutus ei voi tapahtua ajallisesti
tai paikallisesti irrallaan hänen tavanomaisesta elämästään, sillä
saavutetut tulokset eivät itsestään siirry tai yleisty toiseen
ajankohtaan tai paikkaan. Näin ollen kuntoutuksen tulee olla myös osa
perheen arkielämää. Kuntoutus on kokonaisvaltaista arkipäivässä
ryhmätyönä tapahtuvaa pitkäjänteisyyttä vaativaa tuloksia tuottavaa
toimintaa.

Monesti vanhemmilta saadaan myös tieto käytöshäiriöiden syyn
selvittämiseen. Vanhemmat voivat tietää asioita ja ärsykkeitä, jotka
aiheuttavat haastavaa käyttäytymistä, mitä ei esimerkiksi
palveluyksikössä tiedetä. Säännöllinen keskusteleminen vanhempien
kanssa ehkäisee monia ongelmia.

Perheiden asiantuntijuuden hyödyntäminen perustuu vastavuoroiseen
tiedonantoon. Vanhemmille tulee antaa riittävästi tietoa, jotta he
voivat olla osallisina päätöksenteossa. Heillä tulee olla mahdollisuus
valita eri vaihtoehdoista ja antaa niille hyväksyntänsä. Vanhemmat
eivät kuitenkaan pysty tekemään tietoon perustuvaa valintaa, jos he
eivät ymmärrä saamiaan tietojaan tai jos he eivät saa tietoa
vaihtoehtojen hyvistä ja huonoista puolista.

Lähde:
http://www.lappeenranta.fi/includes/file_download.asp?d
eptid=13580&fileid=2381&file=selvitys%20autismin%20kirj oon%20kuuluvien
%20henkilöiden.pdf&pdf=1

Sinun on kirjauduttava sisään, ennen kuin voit lähettää viestejä.
Jos haluat lähettää viestin, sinun tulee liittyä tähän ryhmään.
Päivitä lempinimesi ennen viestin lähettämistä tilauksen asetukset -sivulla.
Sinulla ei ole vaadittua oikeutta lähettää viestejä.

pekka  
Katso profiilia
 Lisäasetukset 26 touko, 12:33
Lähettäjä: pekka <pekka.mo...@gmail.com>
Päivämäärä: Sat, 26 May 2007 03:33:59 -0700
Paikallinen: La 26 touko 2007 12:33
Aihe: Re: Perhe asiantuntijana
Helsingin Sanomat Mielipide 20.05.2007

Erityislasten vanhemmuutta palkitaan huostaanotolla

Kirsti Sivosen tunnustus vaikeasti kasvatettavien lasten äideille (HS
13.5.) kohotti varmasti äitienpäivän tunnelmaa monessa kodissa.

Yksi tunnetusti vaikeasti kasvatettavien lasten ryhmä ovat autististen
lasten kirjo. Klassisen autismin useimmat tuntevat, mutta sosiaalisina
vaikeuksina ilmenevä aspergerin oireyhtymä aiheuttaa edelleen
ympäristössä kummastusta ja paheksuntaa.

Vanhemmat ovat usein tehneet vuosien ajan työtä oppiakseen ymmärtämään
ja käsittelemään lastaan. Kun ongelmia kuitenkin tulee sosiaalisesti
vaaativissa ympäristöissä, kuten koulussa, saattavat vanhemmat joutua
viranomaisten tutkivan katseen kohteeksi. Vaikeinta on, jos lapsi ei
ole vielä saanut asianmukaista diagnoosia.

Toisinaan autisti- ja asperger-lasten vanhemmat päätyvät kamppailemaan
lastensa puolesta viranomaisia vastaan. On perheitä, joista lapsi on
otettu huostaan epätyypillisen käytöksen takia - esim. katsekontaktin
välttäminen, syrjään vetäytyminen ja raivokohtaukset tulkitaan usein
kasvatuksesta ja huonoista perhesuhteista johtuviksi.

Kaikilla opettajilla, päiväkodin työntekijöillä ja
sosiaaliviranomaisilla ei ole tietoa autistisille lapsille
tyypillisestä käytöksestä; monet eivät myöskään tiedä, että syynä on
neurologinen poikkeavuus.

Toki autismin tai asperger-oireyhtymän tunnistaminen kuuluukin siihen
perehtyneille asiantuntijoille, mutta usein lapsi ei edes pääse
tutkimuksiin, koska hän ei saa lähetettä: vanhemmat on jo saatettu
leimata "huonoiksi" vanhemmiksi eikä nähdä mitään syytä neurologisiin
tutkimuksiin.

Joku tajuaa hakeutua yksityiselle lastenneurologille, mutta siitäkään
ei välttämättä ole enää tuossa vaiheessa hyötyä, eikä kaikilla ole
kalliisiin tutkimuksiin varaa.

Usein lasten ongelmat vain pahenevat sijoituspaikoissa. Voi vain
kuvitella, miltä kotoa pois joutuminen tuntuu autistisesta lapsesta,
jonka elämässä mikään ei ole niin tärkeää kuin arjen ja siihen
kuuluvien ihmisten pysyvyys ja ennustettavuus. Lisäksi harvoissa
sijoituspaikoissa osataan kohdella autisti- tai asperger-lapsia
oikein.

Omat vanhemmat ovat oppineet lapsen kasvun myötä hyviä keinoja, jotka
toimivat juuri tämän lapsen kohdalla. Kun lapsi reagoi voimakkaasti
palattuaan kotilomalta sijoituspaikkaan, tapaamisia vanhempien kanssa
saatetaan rajoittaa. Toisinaan asperger-oireyhtymä myös sekoitetaan
psykiatrisiin häiriöihin, ja lasta aletaan "kuntouttaa" väärillä
menetelmillä.

Suomessa tarvitaan kiireesti enemmän julkista keskustelua huostaan
otetuista lapsista - myös siitä näkökulmasta, että osa huostaanotoista
on perusteettomia ja haitallisia lapselle.

Suomessakin on perheitä, joissa on jouduttu viranomaisten mielivallan
alle. Tällainen perhe on epätoivoinen: apua on vaikea saada.

---

           3. KEHITYSPSYKOLOGIAA

 

 

3.1. Yleistä autistien kehityksestä

 

Yleensä lapset ovat erittäin vilkkaita ja nopeita oppimaan uusia asioita, mutta autisteilla asiat ovat yleensä toisinpäin. Muut tutkivat innokkaana uusia asioita, ympäristöään ja mikä tärkeintä, pyrkivät kontaktiin ihmisten kanssa, kun taas autistilapsi on yksin omissa maailmoissaan. Autistien ominaispiirteistä ei vieläkään vallitse täyttä yksimielisyyttä. Käyttämiemme lähteiden mukaan yleisin näkemys on, että autismi on keskushermoston neurobiologinen häiriö eli siis syndrooma-tyyppinen häiriö. Tyypillisiä oireita autisteille voi esiintyä myös muillakin, esimerkiksi asperger-lapsilla. Niinpä mielestämme autismin määrittäminen on hankalaa, sillä autistiset piirteet muodostavat erilaisia yhdistelmiä ja näin ollen erilaisia sairauksia.

 

On vaikea määrittää, mikä on meissä ihmisissä on kehitystä, mikä oppimista ja mikä taas ympäristön vaikutusta, eikä tästä asiasta varmaan päästäkään vielä pitkään aikaan yksimielisyyteen. Autistilapsi voi kehittyä ilman, että käyttää hyväkseen puheviestinnän meille suomia mahdollisuuksia. Ongelma onkin miten saada autistiseen lapseen yhteys opetusmielessä. Motivaation ja tarkkaavaisuuden herättäminen on myös vaikeaa, sillä autistista lasta ei tunnu kiinnostavan ympärillä tapahtuvat asiat.  Me etsimme tai kysymme tietoa, kun sitä tarvitsemme, mutta entäpä jos meillä ei olisi kiinnostusta edesauttamaan kehitystämme?

 

3.2. Lapsen kehitys alle kouluikäisenä

 

 3.2.1 Kommunikoinnin kehitys

Me kaikki käytämme oppimaamme puhekieltä pystyäksemme kommunikoimaan toisten ihmisten kanssa tunteistamme ja toiveistamme. Normaalisti ymmärrämme myös toistemme eleet ja ilmeet, ja me myös osaamme reagoida niihin. Kommunikointi toisten ihmisten kanssa on merkittävä asia meille kaikille, mutta miten autistinen lapsi ilmaisee halunsa kommunikoida?

Autistiset lapset saattavat aluksi kehittyä kielellisiltä taidoiltaan normaalisti, esimerkiksi vauvoilla saattaa esiintyä jokeltelua, tosin se on poikkeavaa. Erityisesti heidän kielen kehitys poikkeaa siten, että se perustuu ensisijaisesti näköaistiin. Tämä on mielestämme aika ristiriitaista sen tiedon kanssa ettei vauva ensimmäisinä elinkuukausina osoita kiinnostusta ympäristöään kohtaan, mutta autistisen maailma on muutenkin niin salaperäinen ettemme voi tietää millä keinoilla hän yrittää viestiä. Opituissa kielellisissä taidoissa tapahtuu myöhemmin taantumista eivätkä lapset kehity eteenpäin. Toisille ei taas kehity minkäänlaista puhetta, noin puolet jääkin puhumattomiksi. Autistinen lapsi kuitenkin yrittää ilmaista tunteitaan ja tarpeitaan käyttämällä kommunikointiinsa esimerkiksi huutamista, tavaroiden heittelyä, kädestä kiskomista, karkaamista ja kaapin hyllyille kiipeämistä. He käyttävät usein toista henkilöä ovelasti hyväkseen saadakseen halunsa. Eli hän käyttää hyväksi erilaisia mahdollisuuksia kommunikoida ja pystyy hyödyntämään niitä elämässään. Joissakin harvoissa tapauksissa lapsi osaa käyttää kielellistä kapasiteettia vuorovaikutteisesti, mikä jää kuitenkin aika vajavaiseksi. Tavallista on asiayhteyksistä irrallisten ilmausten esiintyminen. 

Kielen kehitys autistisella lapsella perustuu mekaaniseen muistiin ulkoa opittuihin fraaseihin, näkoaistiin, toistuviin tilanteisiin ja konkretiaan. Toistuvat kysymykset, joiden vastauksia ei sisäistetä ja kaikupuhe ovat tyypillisiä piirteitä autistisen kielenkäytössä. Autistisella ei välttämättä ole tarvetta opetella kieltä, koska hän ei ymmärrä mihin sitä tarvitaan. 

Opetuksessa pyritäänkin kehittämään kieltä ja vahvistamaan autistisen lapsen omaa kommunikointikeinoa, niin että myös ympäristö ymmärtäisi hänen tarpeensa. Mielestämme puhetta kommunikoinnin ainoana vaihtoehtona ei tulisikaan yliarvostaa vaan tulisi antaa enemmän arvoa myös muille kommunikointikeinoille. Pärjääväthän aistivammoista kärsivät ihmiset maailmassa. Harjoittelutilanteen on oltava autistiselle lapselle turvallinen, rauhallinen, selkeä ja luonnollinen. Kyllikki Kerola kertoo kirjassaan "Lauri", kuinka hän kehitti itse lapselleen ns. laurinkoulun, jota hän piti joka päivä samaan aikaan ja siellä katseltiin aina samaa kirjaa. Lauri tottui tähän ja autisteille onkin tyypillistä stereotyyppinen opiskelumuoto. 

 

 

3.2.2 Sosiaalisuuden kehitys

 Jo lapsena alamme kehittää ensimmäisiä suhteita vanhempiimme ensimmäisen hymyn ja muiden eleitten avulla. Sosiaalisiin perustaitoihin kuuluu taito kuunnella, kiittää, pyytää apua, noudattaa ohjeita, olla muiden ihmisten seurassa jne. Kaikki tämä on meille jokapäiväistä , mutta autistisille henkilöille nämä taidot tuottavat yleensä vaikeuksia ja jäävät usein mysteeriksi.

Margaret Mahlerin mukaan kaikilla 0-3 kk ikäisillä lapsilla on normaali autistinen vaihe. Silloin vauva ei kykene vielä erottamaan itseään ja objektia eikä myöskään sitä, mitkä kokemukset tulevat hänen ulkopuoleltaan ja mitkä sisäpuolelta. Ensimmäiset merkit autistisuudesta ovat vauvan reagointi epänormaalisti sylissä pitämiseen, hoitotoimenpiteisiin ja muutenkin ympäristönsä ärsykkeisiin. Vauva ei kuitenkaan selkeästi osoita havaitsevansa ympäristössä olevia ihmisiä. Osa autistisista vauvoista on ärtyisiä ja itkuisia terrorisoiden koko perheensä elämää. Toiset taas ovat rauhallisia ja vaivattomia unelmavauvoja. Lapsen autistisuuden vuoksi on koko perheen ehkäpä muutettava elintyyliään vauvan tarpeiden mukaan. Arkipäiväinen elämä antaa suuntaa sille, miten sosiaalisuuden kehitykseen voidaan vaikuttaa myönteisesti.

Poikkeava ja erikoinen vuorovaikutus on yksi keskeisimpiä ongelmia autisteilla. Autistiset lapset eivät voi myöskään luoda suhteita toisiinsa, koska he elävät kaikki omissa maailmoissaan. Meille huomion jakaminen ja aloitekykyisyys ovat yleensä melko helppoja asioita, mutta autisteille nämä tuottavat usein suuriakin hankaluuksia. Katsekontakti ja tunteiden ilmaiseminen on poikkeavaa, sillä autistinen ei osaa käyttää niitä vuorovaikutuksessa.

Rakkaus, rajat ja hyvät mallit eivät pelkästään riitä autististen lapsen sosiaalisten taitojen oppimiseen. Niiden lisäksi tarvitaan opetusta. Sosiaalisia taitoja opetetaan luonnollisissa tilanteissa ohjaamalla, mallittamalla ja sosiaalisten tarinoiden avulla. Näiden taitojen opettaminen on hyvin vaikeaa, mutta autistiset henkilöt voivat oppia sosiaalisuuteen. Opettaminen on hidas ja pitkä prosessi, joka opitaan vasta monien toistojen jälkeen. Usein autistiset lapset haluaisivat olla muiden kanssa, mutta heidän sosiaaliset keinonsa ovatkin puutteelliset ja erikoiset. He hakeutuvat yleensä itseään vanhempien seuraan ennemmin kuin leikkisivät oman ikäistensä kanssa. Kyvyttömyys toimia samanikäisten kanssa saattaa jatkua koko iän. Epäselvyys voikin karkottaa autistisen lapsen sosiaalisista tilanteista.

 

 

3.2.3 Käyttäytymisen kehitys

Autistisen lapsen käyttäytyminen voi olla hyvinkin poikkeavaa ja ongelmia esiintyy jo vauvana. Ravitsemus ongelmat ovat yleisiä ja imemis-refleksin kanssa voi olla suuriakin hankaluuksia. Myös nukkumisvaikeudet ovat yleisiä, sillä vauvan unirytmi voi olla virheellinen. Vauvalla voi esiintyä myös itsensä stimulointia eli hän saattaa hakeutua outoihin ja epämukaviin asentoihin, joita hän ei halua korjata. Lisäksi epileptiset kohtaukset ovat yleisiä autistisilla vauvoilla. Ensimmäisen ikävuoden aikana voidaan havaita useita joko äkillisiä säpsähdyksiä tai kouristelua.

Autistinen lapsi reagoi usein epänormaalisti ympäristönsä ärsykkeisiin ja senhetkiseen tilanteeseen. Lapsi saattaa yli- tai alireagoida esimerkiksi valoon, kosketukseen, hälyyn jne. Erikoisen käyttäytymisen takana on usein poikkeava aistimus eli aistikanava reagoi liikaa tai liian vähän. Lapsella on myös vaikeuksia havaita esimerkiksi haavan ja kivun välistä suhdetta. Lapsen kognitiivinen kehitys edistyy hitaasti, koska hän ei kykene käyttämään kieltä kommunikatiivisessa merkityksessä. Myös lapsen motorinen kehitys voi olla hidasta tai kehitys etenee normaalista poikkeavassa järjestyksessä. Autistinen lapsi on mieltynyt stereotyyppisiin kehon liikkeisiin. Hän saattaa esimerkiksi heijata kehoaan edestakaisin tai lyödä päätään huonekaluihin tai muihin kohteisiin. Esineiden käsittely on muutenkin poikkeavaa kuten muukin käyttäytyminen. 

3-6 vuoden ikäiset autistiset lapset voivat olla voimakkaan aggressiivisia, mikä ilmenee kiukutteluna ja raivonpuuskina., joihin ei yleensä ole mitään järkevää ja näkyvää syytä. Lapsi voi tuntea pelkoa arkipäiväisiä tilanteita kohtaan, mutta silti hänellä voi olla vaikeuksia ilmaista pelkoaan vaaran, kivun tai onnettomuuksien yhteydessä.  

                                                  two bears walking down a path

 

3.3. Lapsen kehitys kouluiässä

 

Suurin osa autistisista kouluikäisistä on mukautettuina erityisluokkiin, mutta jokunen myös yleisopetuksen luokkiin. Yleisin suomalaisten autistilasten opiskeluympäristö on kuitenkin kehitysvammaisten lasten harjaantumisluokka. Tämä ei kuitenkaan mielestämme ole paras mahdollinen vaihtoehto autistin kannalta, sillä autistilapset vaativat erilaista opiskeluympäristöä ja opetusta kuin kehitysvammaiset. Autistiset lapset häiriintyvät helposti työjärjestysten, henkilöiden ja paikkojen vaihtumisesta, mikä tulisi ottaa huomioon. Toisaalta kehitysvammaiset lapset voivat tarjota autistiselle lapselle myönteisen ja hyväksyvän opiskeluilmapiirin.  On tärkeää, että autistinen lapsi saa ongelmiinsa sopivaa, suunnitelmallista opetusta.

Osa vaikeimmista käyttäytymispiirteistä näyttää poistuvan autistisen lapsen saavuttaessa kouluiän. Kuitenkaan kaikki autistiset piirteet eivät häviä. Osalla autistisista lapsista ilmenee kouluiässä erityislahjakkuutta. Lahjakkuus voi näkyä esimerkiksi musikaalisena, matemaattisena tai mekaanisena erityisosaamisena. Noin 6 ikävuoden ja murrosiän paikkeilla epileptiset kohtaukset tulevat yleisimmiksi.

 

 

3.4.  Autismin kuntoutus

 

Onnistunut kuntoutus edellyttää laajaa tietämystä autismista yleisesti sekä kuntoutukseen kehitettyjen testien ja opetusmenetelmien riittävää hallintaa. Ammattihenkilöt työskentelevät kuntoutus ohjelmassa kiinteässä yhteistyössä autististen lasten vanhempien kanssa. Vanhemmat toimivat oman lapsensa asiantuntijoina ja ammattihenkilöt kuntoutuksen ja opetuksen asiantuntijoina. Suunniteltaessa kuntoutusta on tärkeää ottaa huomioon lapsen yksilöllisyys. Henkilökohtaisen kuntoutussuunnitelman tekeminen onkin tärkeää ja se on tehtävä heti kuntoutusta aloittaessa. Sen laatimisessa olisi hyvä olla mukana vanhempien ja opettajan lisäksi myös eri alojen asiantuntijoita sekä myös itse kuntoutettava.  Yleensä kuntoutus on hyvin pitkäjänteistä, usein se kestää jopa koko elämän.

Mielestämme on tärkeää, että autistiselle lapselle on määritelty selkeä diagnoosi ja sen perustalle luotu yksilöllinen kuntoutussuunnitelma. Vaikka lapsi tuleekin leimatuksi diagnoosissa, voivat opitut taidot  kadota tai käyttäytymisongelmat palata, jos autistinen lapsi jätetään kuntoutuksellisesti heitteille. Saatavilla alkaa olla moniakin keskitettyyn hoitoon tähtääviä tai näennäisesti tähtääviä hoitomenetelmiä. Mikään yksittäinen hoitomenetelmä ei tehoa kaikissa tapauksissa. Myös terapeuttisia lähestymismuotoja käytetään kuntoutuksessa, joita ovat esimerkiksi psyko-, käyttäytymis- ja musiikkiterapiat.  Jokaisella terapiamuodolla on omat hyvät ja huonot puolensa. Nykyään on olemassa monia hoitomuotoja, mutta kaikkien hyödyllisyydestä ei voi olla varmoja.  Seuraavaksi esittelemme pari terapiamuotoa.

 

 

3.4.1 Käyttäytymisterapia

Käyttäytymisterapian avulla pyritään aikaansaamaan ja modifioimaan toivottuja käyttäytymismuotoja. Siinä ei suinkaan pyritä saamaan selville sitä, miksi lapsi käyttäytyy tietyllä tavalla. Tämä menetelmä perustuu ärsyke- reaktio- ehdollistamiseen eli tavoitteisiin pyritään selkeitten palkintojen ja rangaistusten avulla. Ehdollistumisen katsotaan tapahtuvan leimautumisen kautta, joten ehdollistumisprosessi vaikuttaa fysikaaliseen hermostoon. Terapiamuoto on olennaisesti yksilöllinen lähestymistapa.

 

 

3.4.2 Musiikkiterapia

Musiikkiterapian avulla pyritään aktivoimaan autistista lasta. Sillä on epäilemättä mahdollisuuksia saada iloa, emotionaalista vapautumista sekä toimintaa autististen henkilöiden arkipäivään ja ehkä myös kehittää vastavuoroisen kommunikoinnin taitoja ja motivaatiota. 

 

 

3.4.3 Lääkkeet

Lääkkeiden avulla pyritään helpottamaan hermoston toimintaa. Jotkut lääkkeet vaikuttavat hermostoon kiihottavasti, toiset taas rauhoittavasti. Rauhoittavia lääkeaineita käytetään huomattavasti harvemmin. Näillä pyritään hidastamaan hermoston toimintaa. Joitakin rauhoittavia aineita käytetään hillitsemään tietynlaista aggressiivista ja tuhoisaa käyttäytymistä. Lääkkeiden käytöstä ollaan kuitenkin montaa eri mieltä ja niiden käyttöä pyritäänkin välttämään.

 

 

Lähteet:    Carl H. Delacato 1974: Muukalainen keskuudessamme

                  Kyllikki Kerola, Sari Kujanpää, Tero Timonen 2000: Autismikuntoutus

                  Kyllikki Kerola, Sylvi Santalahti 2000: Jukka ja Lauri - suljetun maailman pojat

                   Oiva Ikonen 1998: Autismi - teoriasta käytäntöön s.154

                 Lea Himberg, Juhani Laakso, Ritva Peltola, Risto Näätänen, Jan Vidjeskog 2000:    

   

               Kehittyvä ihminen, psykologia 2

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This is the place where I tell you about my autism...

You get to know about...

  • What my autism does to me
  • What it means to me
  • My relationships with other people
  • How I have to learn

So, this is where I get to tell you what life is like when you are autistic... Well, it's hard! The best way for me to do this is to tell you what my autism does to me, but I shall use correct terminology (don't worry, I'll either use brackets to give you the explanations in, or I'll create a link to a glossary page (if I can figure out how the hell one does it!!!) Or I could try telling you about it in the way that my friend Martin and me would talk things over when I turn up at his house and we get into the saga, and complicated ideas get turned into easy-listening academia! Martin's a good mate, and he believes there's an autistic side to every one, if they'd only admit it to themselves.... he's a true individual, and that's what I like about him - as well as the propensity to have 'saga!

How does my autism affect me? What does it do to me? Well, firstly, it makes me more of a loner than most people would be. Not that I'm anti-social, though - the sad fact is that I can't easily cope with too many human-to-human interactions all at once. This is because I find it difficult to process all that verbal and non-verbal information all at once. It's a bit like a PC, you know... you run your PC under Windows and then you select about four applications to use. What happens then is that you spend ages waiting whilst the computer is trying frantically to sort out which of these tasks it is going to work on and for how long. Then, it shares out the processor time on a basis that cannot prioritise, and this is also a problem for me. The upshot of all this is that I can only cope with things on a one-to-one or small group basis, and I don't know how to evaluate and prioritise things.

Another thing it affects is my ability to deal with emotions. In the "normal" human brain, one finds that the cells that link the cerebrum (i.e., the "thinky" bit of the brain) to the limbic system (the "feely" bit) tend to develop in quite an organised manner. In my brain, they probably don't! Instead, they're likely to be like those of the "Type II" schizophrenic (who is basically autistic, really...)... totally disorganised - as if they'd developed their links whilst on the piss!!! This means I can't easily control my emotions, and this is why I still have tantrums at the age of 35.

I also have difficulties understanding what people say to me. That's not to say I'm stupid, but rather that I have a pragmatic-semantic language problem (this is where the sufferer has difficulty in extracting the meaning from what is said to him - or, of course, her!!!). Taking turns in conversation is something I've learned a little bit about, but I still feel that I never get to say what I really mean. Along with this, I have a dyslexic-dyspraxic syndrome, which is part of Asperger Syndrome (the posh name for my kind of autism)... I have serious difficulties in reading and writing, and these do not clear up with practice. This means that when I get stressed, I can hardly co-ordinate planned movement to do anything. This is a distressing problem, and for those who have it, few people have any sympathy... The language difficulties (not fully understanding what is being said to me, and not being able to instantly give replies because of not having the mind that can ... perhaps a bit of explanation could be useful here, yes?

The thinking bit of the brain is actually two very separate structures, which only "talk" to each other via this thing called the corpus callosum (almost literally, the hard bit!). On the whole, it is the right side structure that thinks in pictures, and the left side one that tries to describe these pictures. For me, this right side one is rather active - the left side bit is largely buggered, and so describing the right side pictures is difficult.

What my autism does to me is to make me vulnerable to being abused, and this has happened to me all my life. Most autistic people are emotionally capable of loving, but the expression of emotions is very difficult for us. And here also is the autistic person likely to be abused. It has taken me ages to actually come round to accepting that I was sexually and psychologically abused by a couple of people I became involved with. One of these was a high status nurse. I don't get the gist of a lot of things that are said to me, including things said in jest. This is a nasty situation to be in, because it is easy to end up getting paranoid about people in general. I hate being paranoid about people, because it detracts from what little real affective contact I can actually make with people.


What does my autism mean to me? Hmmm... this is a good question. I suppose that, since I've had this conditon all of my life, I don't really know any different! But what it actually means to me is difficult to say, since I am just getting used to the fact that my difficulties have all been down to my autism, rather than me just being an arse. The differences in thinking style I have tend to give me problems with relating to "common sense" stuff, but - if the following is true - there are positive aspects to being autistic. It is known that Albert Einstein (one of the most amazing physicists of the current century) had a condition that one biographer referred to as schizophrenia. However, if it was schizophrenia, there is no doubt that we would not have the bank of knowledge we have on things like relativity, electro-dynamics, and even quantum mechanics that we have today. His ability to focus so intensely on his interests was totally against the grain for schizophrenia. I found out that he was almost mute until age 4, and that he was always very prone to tantrums (possibly the reason why his marriage to Mileva fell through). He was also not a very good communicator, unless the topic of conversation was involved in his spheres of interest. In other words, Einstein was autistic. In fact, descendents of his frequent a lot of the autistic societies' activities in their localities. Another autistic person without whom, etc., was Isaac Newton. He was an arse of a person, and not very likeable, but he was a systematic thinker, with a preoccupation with his "inner space-time" (as R. D. Laing would describe it) to the point where - as one source tells it - he was hosting a dinner party, when the wine ran out (a good time being had by all, despite Newton's being a grumpy old arse... or did the wine actually loosen this guy up?). Isaac trots off to the wine cellar to find more of this stuff... and he's gone for about two hours or more! A search party is sent to look for him, and he is discovered in the cellar, entirely inside his own world... doing what we now refer to as differential equations in the dust!!! Who was this guy???? I suppose that there must, therefore, be more advantages to being autistic than most people think. Unfortunately, they do not outweigh the disadvantages autism puts on you (if you're autistic!) in modern-day societies. I have some rather direct tee-shirt designs that I want to get printed.

What else does my autism mean to me? This is a good question, because I have only just got used to having a name for it. It means something like... "Hi, world... I can see you, hear you, feel you, smell you and taste you... but I don't think I can know you very well!" There is an emotional detachment from things around me, so it's very difficult for me to relate to things the way that a non-autistic does... I don't, for example, understand things like relationships very well. I was cruelly abused by someone who purported to be my girlfriend and in love with me, but who turned out (by her own admission) to be a psychopath! People like me are vulnerable to bastards like these!!! On 6 November ('97), I was in a pub and a woman on a nearby table was confused as to how I could sit and study in a fairly noisy bar. I told her about my autism, and she then ended up having a tutorial of sorts on psychology... this is in a pub! But she pointed out that, from what she had seen of me - and Einstein and Newton - there must be some positive sides to being autistic. There was a site I visited recently that actually lists the advantages and disadvantages of being autistic. But my comment above still holds, because society still expects autistics to fall in with the crowd and be the same as everyone else - something we clearly cannot do. Ergo, society is (on the whole) bloody ignorant, and totally false in the way it provides its "care" for autisics (and schizophrenics, whose difficulties are almost always stress-induced). It tends to blame us for our individuality and inability to fit in with what it wants... but the best is this: even society doen't know what it wants. It changes its mind more often than the Palace changes the Guard! No wonder schizophrenics crack up, and autistics just hide inside their own heads... modern society's just a pain in the arse to people who are HAPPY with their individuality, and just want to be left alone to enjoy that individuality. Other members of society may well get a kick out of pretending to be like each other, but that's a bloody cop-out from real life, and real individuality. In short, normals and psychopaths are WUSSES who can't cope with individuality.

RELATIONSHIPS.... AAAAAAAARRRGH! They scare the shit out of me! It is very difficult for me to judge how someone is going to be towards me, so I can't tell how open to be with them (especially emotionally!). I opened up to one woman, whose behaviour towards me put me back twenty years in my very flimsy psycho-social development. She was older than me and should have known better, because she was a nurse. However, one relationship was with someone younger than me and she is the first person that I opened up to who really meant it when she said "I love you!"

It sometimes occurs, though, that an autistic person can come into contact with someone via the Internet, and find that there is a lot of emotional/affective contact can be made... probably more so at first than could otherwise be made in the initial stages of relating to someone... it's just one channel of communication to worry about!!!! This is a recent finding... someone really nice has come into my life via the mailing list we're both on. She's cautious, and I am too... we've both had weird shit happen to us in our lives, but we get on very well... well enough to have fallen in love with one another... e-mail, snail-mail and phone calls occasionally... she's absolutely gorgeous! In fact, she visited me recently, and our gut feelings about each other proved right... and it would be very true to say that we're in love...(it's actually neuro-typicals who get sensory hysteria....!!!! Most psychiatrists can't understand this, but they understand precious little anyway... look at what they do the schizophrenics and manic-depressives!)... Love does happen for autistic people. I know of two people who came together via the net, and they're now engaged... Hmm... interesting! Heta and I are not particularly into this "marriage" thing, but we do want a serious long term/permanent relationship. And marriage has been discussed. She has a page of her own on my site, which eventually will link to her own site, if she can get one going - it's a time thing. She works in research.


Learning is very difficult for an autistic person. I have to learn by linking something to something that I like, know about or understand - my understanding of the world around me is substantially different from the way others purport to understand it. In fact, this is why I tend not to socialise like I used to think I had to. In the end, the only person's mind I know with any degree of certainty is my own, but I still have problems expressing it. What goes into it is idiosyncratic, and what comes out of it is also idiosyncratic. The upshot of all this is that my communications tend to be restricted in content, scope, and style of delivery - I won't say discussion, because that is still a relatively new skill I have been learning. Learning new skills is awkward, because of my dyspraxia... I am not the person to do your DIY stuff. Nor am I the person that you ask to give the patient his injection. I have a very limited motor skills base, but my intellectual skills (though limited) have been developed over the years. My dad did a lot to help in those years he lived near me... he had found a way to get into his son's mind, see what it linked to outside it, and then show his son what the links were. It is only in the last ten years (if that) that I have been able to make any logical leaps. My thinking is associative - that is, it links up like http links in mark-up language (this is Temple Grandin's analogy, but I can't think of one, so I'll use hers... she is one of the more able autistic people because she is a professor in a university in America. Instead of going "if... then... " or "if ... and/or... , then... ", it goes: image/word... AHA! links with image/word... where the link is often a rather tight association (to use Personal Construct Theory terminology) which is also very idiosyncratic! Learning like the "normal" person learns is impossible. In some ways, I have to learn backwards, and that means I have to literally backtrack through say a mathematics problem in order to understand it, and that is a definite handicap to learning. Also, I have to understand what I am told AS I AM BEING TOLD IT for it to work. It gets very frustrating, and of this is born depression, which you will find is most of what an autistic person like me has to look forward to in life. Would you like being autistic? To be honest, I think that, given how our society and culture treats those who are different, I'd give you a week as an autist before you tried to kill yourself, and a further four weeks before you finally did it!

Following the success of my thesis at University, I am going to be changing a lot of what you see in these pages. I believe in differences in autism, rather than disability in autism (what disables me is the negative attitude of the general populace towards those who are different, the prejudices that those people have against those who are different and the refusal by "normals" generally to accommodate such differences as may be see in autistic people and schizophrenic people. In the end, people are individuals, and the true psychopathology is the one that makes people want to be all the same as each other!

_____________________________________________________________

Living with Autism

I can only write about my experiences, my thoughts, and my perspective. I can't write about what it feels like to be someone else, not even another autistic. So, please remember that these are my personal experiences, although I've tried to mention traits that other autistics might share with me.

Obsessions

When I'm interested in something, I might spend so much time immersed in it that I forget to eat or sleep! Many autistics share this characteristic with me, becoming obsessed with what the world might see as unimportant things. I've been asked what it feels like to be immersed in an obsession. It is absolutely wonderful! Time seems to stop, and nothing could bother me while I'm pursuing my "obsession". It doesn't drain me, but it energizes me. I wouldn't give up these "obsessions" for anything. I ask the non-autistics reading this to decide for themselves if there is a problem with someone just because they have an intense passion for something that most people don't enjoy. I wonder how George Washington Carver would have responded if someone told him to quit obsessing over the peanut!

The subject of an obsession can be anything for an autistic. Some of my obsessions include aviation, software engineering, underground tunnels, and mass transit. Do most people consider thinking about mass transit or walking through an underground tunnel to be an "absolutely wonderful" experience? Probably not, but I've learned there is nothing wrong with taking pleasure in these things! If anything, many non-autistics need to spend some time enjoying a simple pleasure.

Unwritten Rules

Non-autistic society has many, many unwritten rules. These rules are very pervasive; many non-autistics sincerely believe they communicate very directly, unambiguously, and honestly. As an autistic, I must disagree. While I've learned - by rote - what some of the unwritten rules are, I'll never understand the more complicated ones. For example, I usually don't notice body language. When I do notice it, I have to expend a great deal of energy to try to figure out what it is saying. At other times, I'll hear someone tell me something like, "Call me anytime!" When I hear this, I might not realize that there is an unwritten rule that you don't call people after they go to bed! Of course, this is a rule I now understand, but I find out about new rules every day. Autistics need additional understanding when we violate "socially acceptable behavior." We probably don't even realize what we did wrong, so rather than getting upset at us, feel free to ask what we were trying to communicate or if we realize that there is an unwritten rule about it.

Criticism

I tend to speak my mind, without always following the unwritten rules that say I should criticize something using words which don't really seem to say what I am thinking. I realize that many people assume that criticism of their work is the same as criticism of them, but I don't. I don't get upset if someone tells me that I did a bad job writing a piece of software. I may have. I will want to know why they thought that, though, so that I can learn and improve (this is often misinterpreted as becoming defensive when it actually has more to do with vulnerability than defensiveness!). Because this is the way I want to be treated, it is often the way I treat others. When I say that I don't like some of your work, I'm not saying that I don't like you. I'm also not saying that I think you are stupid, lazy, or a poor craftsman. What I am saying is that I see an obvious flaw in something you did. I'm trying to understand how to be less "rude" or "abrasive" (words others have used to describe my criticism of their work), but it is something that I still don't understand - especially since I actually want to be criticized in this way!

Sensory Overload

A trait of autism that I experience is a somewhat lacking "sensory filter". When I see, hear, feel, smell, or taste something, I experience all of these senses simultaneously. The typical non-autistic or NT (neuro-typical) processes these things through a filter which removes the information that isn't needed. My personal experience with this indicates that at least this author doesn't have a normal sensory filter, and I suspect that I'm not alone. When I enter a busy scene - especially if multiple senses are present or there is a lot of loud noise, flashing lights, and people bumping into me, I will experience this sensory overload. Simply put, my brain is trying to analyze everything that is going on, without bothering to pick out the truly important details (like the person right in front of me who is trying to talk to me). As a result of this, I will often want to retreat or go back to somewhere quiet and peaceful again. I'll never understand how non-autistics can enjoy loud parties, dances, or meetings.

The only way I can explain this to a non-autistic is to have them go into a room, turn on a stereo (loud!), TV (also loud), open up the blinds, turn on a strobe light, and then try to talk on the telephone. Many autistics live like this all the time (so, please, cut us some slack when we ask you to repeat yourself for the 5th time in a loud room!).

Look at Me!

I've often been told, "look me in the eye!" Often, it was well-meaning teachers while I was growing up, who thought that looking someone in the eye would somehow make me better able to communicate. What they didn't understand was that the face gives off a tremendous amount of information. The eyes are the worst part of the face for me, because they give off even more information than most of the face. When I look someone in the eyes, I can't concentrate as much on what they are saying. When I look at the floor, a wall, or (with people that are willing to accept who I am) close my eyes, I'm not trying to communicate that I'm not listening. Rather, I'm listening very deeply! If I want to hear someone's words, I have to find a way to not be distracted by other sights and sounds! So, please, next time I watch a wall while you talk, please remember that I may be honoring you by listening so intensively! If you're ever concerned that I'm not listening, just ask. I won't get offended!

Confused Senses

Many autistics process the signals their senses are sending in unusual ways. Some have reported that they taste smells, hear touches, and see sounds sometimes. While I have never experienced this (not quite true - I can see flashes of lightning with certain touches or sounds), I often find that what I think I'm experiencing is different than what is actually happening. Most commonly, I'll have a hard time determining if I am hot or cold - I've often put a sweater on to find that it only makes my feeling of being cold worse. In addition to not knowing if I am hot or cold, I sometimes can't figure out what direction a sound is coming from. Someone might be on my right side, trying to get my attention, yet I'll sometimes look to the left.

Another page I wrote about my sensory traits

Often Tired

Some of my friends have told me that I'm always telling them that I'm tired! Autism can explain much of this, though. Autistics often have a combination of sensitive and insensitive senses. A given sense may be very sensitive at one time and very insensitive at another. When the senses are insensitive, I'll also want to stimulate that sense myself. For example, at night, I'll often "wiggle" one of my legs. I don't know exactly what this does, but I know I usually can't get to sleep if I try to hold it still. But sometimes even this movement will keep me awake. I have to sleep under a heavy blanket, preferably fully clothed - to further stimulate my sense of touch. In addition to this, my hearing becomes over-sensitized at night. I hear every little thing - the fridge in the next room, my neighbor closing his door, the wind, even the leaves outside my window. Any one of these things could wake me up. I probably wake up at least two times during a normal, restful night. Simply put, it's hard work to go to sleep!

What Are You Feeling?

The face conveys a lot to people who can read it. Let me try to explain how I see faces, and how I determine what they are saying. You might then be able to better understand other autistics. When I see someone, I might notice that they aren't smiling. I think to myself (yes, this is conscious thought), "he isn't smiling. Why not? Is he unhappy?" I then recall that people don't smile when they are sad or when they are mad. I might then look for a red color in his face. If I see that, he is probably mad - but, maybe, he is just concentrating really hard. Now, most people wouldn't go through all this work. They would know instantly if the person was mad or concentrating. I don't, though. I've never understood why people don't just tell others how they feel.

Who Are You?

I don't recognize faces. Instead, I use other cues to tell me who someone is. For example, I'll remember if they are bald or not, wear glasses, what type of clothing they wear, etc. But, I won't recognize them by their face. I'll often meet someone that I know I should know, but not be able to place them in my mind because they are wearing different clothes or cut their hair. At one point, when visiting my parents, I didn't recognize my dad when he came to the airport to pick me up. He had cut his hair and trimmed his beard.

More about my face-blindness

Please Don't Touch Me

While some autistics have a greater aversion to touch than I do (some report that it is painful when someone else touches them), I don't exactly appreciate people touching me! It seems that some people think that they have to come up to me and hug me, without giving me any advance notice so that I might be able to brace myself. Please don't hug me, at least not unless you ask if you can do it first (and, be warned, I might say no). Someone grabbing or hugging me - especially when I don't expect it - can overload my senses.

Solitude

Sometimes autistics need to be left alone, so that we can calm our minds and bodies. We'll often retreat when we're experiencing sensory overload or when we are under a lot of stress. This behavior sometimes seems strange to a NT, as it seems that we are running away from the people who are willing to love and support us. As an autistic, I recognize my need for friends to support me. However, because I am autistic, interaction with even my closest friends and family can tax my reserves - especially when I'm under a lot of stress. If you see me push you away in a stressful time, please realize that I'm not doing it because you did something wrong. I sometimes push my friends away when I need that quiet solitude to regain my senses. Let me know you are available, and that you care, but please don't push the issue if I am unable to interact at that moment. Don't worry, I'll come to you when I'm recharged - I still need your support, for I get lonely and need wise advice just like you do.

A Cure?

No way!

I am not sick! Yes, I have many difficulties that I have to deal with, but I also experience incredible joy and success. I wouldn't be the same person if I was a neuro-typical, nor do I think that I necessarily want to be that person. I like who I am, although I do wish that society would allow people to be who they are, even if it is different than them. I believe that, in heaven, we will one day rejoice with many different brothers & sisters - even the ones that are different.

As a Christian, I would prefer that people wouldn't pray for me to be "healed" from autism, either. When I hear this, I hear, "I will be praying that you will become a different person." I am a whole person. Autism is a key part of who I am. Asking me to want to give up that part would be like me asking you to give up a sense of humor! Without the autism, I would be less whole, not more whole.

___________________________________________________________________________


 

Inside the Autistic Mind

A wealth of new brain research--and poignant testimony from people who have autism--is lifting the veil on this mysterious condition

By CLAUDIA WALLIS

May 15, 2006

The road to Hannah's mind opened a few days before her 13th birthday.

Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support. But it wasn't until the fall of 2005 that traffic finally began to flow in the other direction. Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded. But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. "Is there anything you'd like to say, Hannah?" asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, "I love Mom."

A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial (critics complain that it's often the facilitator who is really communicating), but it has clearly turned Hannah's life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue's Clues. Instead, she is working her way through high school biology, algebra and ancient history. "It became obvious fairly quickly that she already knew a lot besides how to read," says her tutor, Tonette Jacob.

During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, "Do you have a photographic memory?" Hannah typed "Yes."

Like many people with autism, Hannah is so acutely sensitive to sound that she'll catch every word of a conversation occurring elsewhere in the house, which may account for much of her knowledge. She is also hypersensitive to visual input. Gazing directly at things is difficult, so she often relies on her almost preternatural peripheral vision. Hannah's newfound ability to communicate has enabled her intellect to flower, but it also has a dark side: she has become painfully aware of her own autism. Of this, she writes, "Reality hurts."

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder. Its causes are still uncertain, as are the reasons for the rapidly rising incidence of autism in the U.S., Japan, England, Denmark and France. But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what's going on in the bodies and brains of people with autism and as more of those who are profoundly affected, like Hannah, are able to give voice to their experience. Among the surprises:

• Autism is almost certainly, like cancer, many diseases with many distinct causes. It's well known that there's a wide range in the severity of symptoms--from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.

• Once thought to be mainly a disease of the cerebellum--a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it's not clear how much is the cause and how much the result of autism.

• The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.

• Many classic symptoms of autism--spinning, head banging, endlessly repeating phrases--appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms--a lack of emotion, an inability to love--can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.

• The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene. And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.

THE CURIOUS INCIDENCE

DR. THOMAS INSEL, DIRECTOR OF THE National Institute of Mental Health (NIMH), which funds much of the nation%2


N E T W O R K

December 2000 Vol. VII, No. 3

Page One

In our series on alternative and adjunct therapies this time we cover special diets, specifically diets excluding gluten and casein. The Autism Research International has for a decade carried reports from parents who have seen their children take a leap in their development after being put on the diet. Popularly known as GFCF - Gluten Free Casein Free - diets, they require no special expertise to implement. However they do require a great deal of ingenuity and persistence to implement, since removing both wheat and dairy seems almost like removing the basis of most diets. Many parents give up in the face of initial resistance from their child. Those who see quicker results feel motivated to continue, and we carry reports of two such families.

Bente Johansen studied Autism in England, Austria and Sweden, from 1952 to 1958. Since then she has worked in various areas of caregiving and management both at residential services as well as in day schools and nursery schools. Currently she is a Supervisor monitoring autism services and giving lectures on the subject. Bente has also authored two books on autism in Danish. She has helped set up an autism-project in the Czech Republic and was in Ghana researching the possibility of launching an autism project. We had the great privilege of having her visit at AFA, study its working and the services it provides, observe the methods of teaching, and give us valuable feedback that made us think and introspect on our methods. At 70 plus Bente is full of energy and love for her work. A nasty fall the day after her arrival in Delhi did not deter her from climbing up and down the stairs several times during every visit to the Centre while she observed the day-school and other intervention programmes. We learnt a great deal from her visit, and look forward to a repeat.

Disability Activists have once again shown that persistence leads to results. Through timely action and dogged persistence they have ensured that the Census 2001, to be conducted by the Census Commission from 9 to 28 February 2001 will include questions on disability. This landmark decision will ensure that when policy measures that will impact on the disabled are planned, correct numbers will be taken into account. This will lead to a more realistic allocation of resources. If we want to create a society of equal rights for all, each of us has to ensure that members of our families, or we, who have a disability are not left out of the census due to our negligence or otherwise such as social pressures and embarrassment.

On the road to reaching our goal of being able to train more professionals and reach out to more families, we have encountered yet another hurdle. In its current rented premises AFA is barely able to handle the huge numbers of parents and professionals that approach it for help daily. There is an urgent need to move into our own purpose built National Centre, so that we are able to train more professionals, reach out to more families, and help parent groups to start elsewhere in the country. With this aim an application was made to the Delhi Development Authority (DDA) to allot land to AFA on concessional rates, under category B-V, as recommended by the Department of Social Welfare, Government of NCT Delhi. We now learn that the authorities are not inclined to give land to AFA at B-V concessional rate, though in principle they are agreed on the need for services for those affected.

AFA is an organisation that has a track record that India can be proud of. In barely ten years, with no government funding, it has had a major impact on the face of autism awareness in the Indian Subcontinent. It is the Center of choice for referrals by the leading medical institutions in the country.

India has the dubious distinction of being one of the few countries that is yet to start the process of setting up basic services for those affected by autism, despite the large numbers affected, the severity of the disability, and the dramatic difference that timely and focussed intervention can make in the lives of those affected. In this bleak scenario, AFA has stretched every donated Rupee to provide quality services to those approaching it for help. It will be a great pity if inspite of the doughty efforts of beleaguered parents to help not only their own children but all those effected, AFA has to curtail its work because of a lack of suitable premises.

We earnestly appeal to the Finance Committee of the DDA and the Honourable Lieutenant Governor to allot land to us at concessional rates under category B-V for the setting up of the National Center for Autism and make a pivotal difference in the lives of those touched by Autism.

We wish all our readers a joyous Christmas and a splendid New Year! And a magnificent Millenium that sees the fulfillment of all our dreams and aspirations!!!

 

Alternative Therapies - VI
Gluten, Casein and the Child with Autism

Mia Nilsson

What we are is often determined by what we eat. In the complex world of autism, researchers strive to determine the various factors that perhaps contribute to the unusual behaviours that mark the disorder. For decades now parents have been reporting a connection between autism and diet. Now current research shows that many cases of autism result from an immune-system dysfunction that affects the body's ability to break down certain proteins which in turn affects the developing brains of some children causing autistic behaviors. The key of course is to uncover the
foods that may be causing this intolerance or sensitivity.

According to Paul Shattock and Dawn Savery
(Autism as a Metabolic Disorder, 1997):

"...autism could be the consequence of the action of peptides of exogenous origin effecting neurotransmission within the Central Nervous System (CNS). We believe that these peptides result in effects which are basically opioid in nature....the CNS neuroregulatory role which
is normally performed by the natural opioid peptides... would be intensified to such an extent that normal processes within the CNS would be severely disrupted.

The presence of this intense opioid activity would result in a large number of the systems of the CNS being disrupted....Perception; cognition; emotions; mood and behaviour would all be affected...Many and diverse symptoms by which autism is...defined would result. We believe that these peptides are derived from an incomplete breakdown of certain foods, and in particular, gluten...and from casein."

Proteins are normally broken down and digested by the enzymes in the intestines. However, sometimes this breakdown is incomplete and they remain as short chains of amino acids, known as peptides. These peptides have been found in the urine of a large number of children with autism by researchers. The effect of the incomplete breakdown of these foods is seen as leading to a manifestation of 'autistic behaviour.'

The two significant food groups in this respect appear to be Gluten and Casein. Gluten is a protein fraction found most commonly in wheat, and other grains, most notably oats, barley, rye, and their derivatives. "Derivatives include malt, grain starches, hydrolyzed vegetable (plant) proteins, textured vegetable proteins, grain vinegars, soy sauce, grain alcohol, flavorings and the binders and fillers found in vitamins and medications." Casein, a protein fraction found in milk and all dairy products, has a molecular structure that is extremely similar to that of gluten. This suggests that, breads, rotis, kulchas, pizzas, hamburgers, many popular brands of noodles, biscuits and cookies, paneer, cheese, butter, dahi, chocolates, and other everyday foods could possibly be leading to much of the behaviours in our children.

Curiously, many children with autism appear to prefer a diet that is almost exclusively restricted to wheat and dairy! In the hundreds of children that visit the AFA centre a surprising number seem to subsist on a diet of breads and rotis. Some appear to survive on a diet of just biscuits. Or roti and dahi. If their systems are unable to break down the proteins in these foods appropriately why then do these children appear to crave these very foods. The explanation could very well lie in the fact that these peptides are believed to have an opioid activity on the brain. We know that opiates are highly addictive. If the effect these foods have is similar to an opiate, is it possible that this is the reason that the children appear to be addicted to these particular foods? That they 'self-limit' to the near exclusion of other foods?

The solution would appear to lie in eliminating gluten and casein from their diets. Reports from parents published in the Autism Research International for many years would indicate that gluten and casein free diets do indeed appear to help some individuals with autism. Not all show dramatic results, many may just show positive changes in one or two areas, but most children on a gluten free casein free (GFCF) diet show some small improvements. In addition, smaller children show greater improvements than fully gown individuals.

However, though many parents are convinced of the validity of dietary intervention for autistic individuals, most find the implementation a daunting prospect. When the child eats only foods that contain gluten, for instance, parents worry that the child will starve if a gluten-free diet is implemented. But experience shows that initially the child will not want to eat other foods and crave foods with gluten. Many also go through a phase of irritability, anxiety and upset stomach. But most eventually surprise their parents by broadening their diets and eating foods never eaten before!

How does one implement a GFCF diet? Since it is difficult for many parents to remove both gluten and casein from the diet at the same time they could start by just removing one - whichever is easier given the family's lifestyle. Changes in the child's behaviour and learning will be motivating for the parents and make it easier to remove the other as well. We will not here discuss what that diet will be as it is adequately covered in parental accounts that follow. Suffice to keep in mind that the diet is all or nothing. Research seems to indicate that even small amounts of gluten in the diet can set the results back. Remember to read the labels on foods in stores to check ingredients. In order to determine whether the diet helps your child, a few things need to be kept in mind. Firstly, the child should be put on the diet when no other treatment is being started. Otherwise it becomes difficult for the parent to determine whether the benefits are due to the diet or the other treatments that have just been put into place. Next, it helps to keep a daily record of the child's behaviour to be able to judge changes objectively. Finally, stick to the diet for at least a month. Ideally three months are recommended for results though some researchers suggest upto a year.

While on the subject of diets it is worth noting some other foods that are best avoided. Sugar (sweets) creates more activity and should be avoided. Processed foods contain preservatives and colourings - chemicals - that could lead to more hyperactivity and less focus. Try removing products like tinned foods, colas - Pepsi, Coke. Soft drinks often contain caffeine that tend to worsen irritability and restlessness.

Finally, it is important to acknowledge here that implementing a GFCF diet is a lot of work. Particularly for already overworked mothers. The fact is that in most families it is the mothers who are the prime if not the only carers. In addition to all the housework and perhaps careers outside the home. Implementing the diet is often a challenge. There is also the difficulty with typically developing children in the house who might be eating foods with gluten and casein. All the hide-and -seek in front of the child with autism is not at all helpful. Some parents have found it useful to turn the entire household into a GFCF household. For many it has almost been a lifestyle change particularly when their diets have previously been bread, pasta, and dairy based. Not all can do this. Besides not all families have the same resources. What is important to remember is that every family has its limitations. If I can give my child a GFCF diet that's great. But if I cannot, that's okay too. That does not make me a less caring or bad parent.

The following article is reprinted with permission of the Autism Research Unit of the University of Sunderland. These notes should be taken as observations. They do not constitute a recommendation or endorsement of a dietary method to alleviate the symptoms of autism. Any decision to undertake such a method must lie solely with the person with autism or with those having responsibility for their care.

Background:
In the early 1980's a number of researchers, including Herman and Panksepp, noted the similarities between the behavioural effects of animals on opioids, such as morphine, and the symptoms of autism. In a very speculative paper, Panksepp proposed a mechanism whereby people with autism may have elevated levels of opioids which occur naturally in the CNS (Central Nervous System) of humans. The best known of these naturally occurring opioid compounds is beta-endorphin and certainly there is a degree of correlation between the known effects of this compound and the symptoms of autism.

Just after this, Gillberg produced evidence of elevated levels of "endorphin like substances" in the cerebro-spinal fluid of some people with autism. In particular, elevated levels appeared in those children who appeared to feel pain less than the normal population and who exhibited self-injurious behavior. At about the same time, Reichelt produced evidence of abnormal peptides in the urine of people with autism. We ourselves, like a number of other groups, attempted to replicate his findings. Although his technique was comparatively simple there were technical difficulties and these attempts were, initially unsuccessful. Later on we switched to a more sophisticated technique and have been able to confirm Reichelt's findings. In the urine of about 50% of people with autism there appear to be elevated levels of substances with properties similar to those expected from opioid peptides. The quantities of these compounds, as found in the urine, are much too large to be of CNS origin. The quantities are such that they can only have been derived from the incomplete breakdown of certain foods. Proteins consist of long chains of units known as amino acids. Normal proteins are digested by enzymes in the intestines and are broken down into these units. However, if for some reason, this digestion is incomplete, short chains of these amino acids (known as peptides) will result. It is proposed that these peptides may be biologically active and could result in the symptoms which we see in autism. The majority of these peptides will be dumped in the urine, which is where Reichelt and we are finding them. A small proportion will cross into the brain and interfere with transmission in such a way that normal activity is altered or disrupted. It may be that these compounds, themselves, have a direct effect upon transmission or that they will attach themselves to the enzymes which would break down our own naturally occurring enzymes. The consequences would be the same in either case.

It is well known that casein will break down in the stomach to produce a peptide known as casomorphine, which, as the name implies, will have opioid activities. Similar effects are noted with gluten from wheat and some other cereals in which the compounds formed are gluteomorphins. If this opioid excess hypothesis is correct, there are a number of strategies which can be adopted. Firstly the anti-opioid drug "naltrexone" could be considered and promising results have been reported. [Note: a recent study of 41 children conducted by Magda Campbell, did not produce positive results with low doses of naltrexone. It is possible that doses were too low, but for now effectiveness of this medical intervention must be questioned.]

Alternatively, a diet which excludes casein or gluten could be considered. It may be possible to determine, from the pattern of the urinary peptides, whether casein or wheat or both should be avoided, but such conclusions may be premature at this stage. It has been observed that those children whose autism appears at or around the time of birth may have a problem with casein whereas those whose autism becomes apparent at about two years of age, when a wheat based diet is more likely to be adopted, have particular difficulties with gluten. Some children may have difficulty with both.

Norwegian colleagues of Reichelt have published data which support the effectiveness of such dietary programmes but these studies cannot be considered as conclusive. There have been no other real attempts to demonstrate the effectiveness of such diets on a scientific basis. Numerous people have experimented on an individual basis and have reported successful responses but such evidence cannot be considered as, in any way conclusive. In Rimland's studies of parental reports, however, the results appear to be very much superior to those obtained with any drug based theory.

Practical Aspects:
The theoretical processes described here are toxicological in nature rather than allergic. The results are akin to poisoning rather than an extreme sensitivity such as occurs in celiac disease or sensitivity to certain food colourings. Removal of gluten and/ or casein containing products requires the active participation of all those concerned with the child's well-being. Tests have often been ruined by a well meaning relative who ignores parental instruction, or by schools or therapists who feel that the proposals are rubbish. Carers must satisfy themselves that the diet is being adhered to before any evaluation is possible.

Gluten and casein free products, together with advice on their use, are available from Pharmacies. Nutritionists and dietitians would also be able to advise. Initially the reported effects may be negative, upset stomach, anxiety, clinginess and slight ill-temper. Experience would suggest that these are good signs and precursors of a positive response. Reichelt recommends a trial period of three months. If it has not worked within that time it is unlikely to do so. Experience also suggests that the results are more easily demonstrated in younger children. The effects in fully grown individuals appears less impressive. Given that there appear to be a number of possible causes of autism it is not unexpected that no unitary solution will be found for all cases.

Conclusions:
Although the hypotheses may appear "off the wall" in many respects, there are a number of pieces of evidence which support them. The ideas are compatible with virtually all the accepted biological data on autism and are worthy of consideration.

The dietary method must still be considered as experimental and no positive results can be promised or are claimed. The use of diet may well be far less harmful than other medical interventions or therapeutic regimes. We would be pleased to receive any feedback of a
positive or negative nature from anyone utilising such dietary modification in the amelioration of autism.

Contact:
Autism Research Unit, School of Health Sciences
University of Sunderland,
Sunderland, Great Britain SR2 7EE
TEL: 091 510 8922 FAX: 091 567 0420

 Remember that not getting
what you want is sometimes
a great stroke of luck.

If it's right you keep at it.

How to Implement a Gluten Free Casein Free Diet at Home:
A Mother's Experience

Some of the recent studies made on autistic children suggest the autistic kids do not have the proper enzymes to digest gluten (a protein found in wheat, rye, barley and oats) and casein (a protein found in milk). The brain perceives the gluten and casein that are not digested properly as a substance that has a drugged effect on the brain. If these substances were removed from the diet, slowly the effect of casein and gluten would go and the child would awaken to its environment, responding to activities around him or her. I had read some of the success stories. I thought about it for quite some time and as the argument sounded quite convincing I decided to put my four-year-old son on a Gluten-free Casein-free (GFCF) diet this July.

Planning the diet was a big challenge, I had been loading him with gluten and casein from morning to night- milk, bread, chapati, cheese, curd, biscuit, ice-cream, etc all this time. Stopping all this basic food sounded like a big challenge. In the first week, it seemed like a very tough decision as a lot of my time was taken in locating and perfecting recipes to my son's taste.

Initially the reported effects may be negative. As soon as we stopped gluten and casein in our son's diet he became quite dull and craved for those foods. Experience would suggest that these are good signs and precursors of a positive response. These symptoms indicate that the child was addicted to those substances and now shows withdrawal symptoms.

My son has been going to a play school for one year but did not sit in class and did not learn anything much there. I used to teach him at home one to one. But after about a week on GFCF diet he became very active and his speech became louder and clearer. His eye contact improved. The diet helped him to give a better response, as he did not remain lost in his own world. His response to the ABA teaching program improved very much. In school he started sitting in class, responding to the teacher and participated in the class activities. He no longer shunned the company of children and teachers. After about three weeks of the diet his teachers had good things to say about him.

Much of my time goes in planning for his diet. Replacing dairy milk with soymilk was the first diet replacement. We could trace only one company in Delhi making soymilk. However, it was strongly flavoured and contained preservatives so we decided to make our own. With our homemade soymilk we made curd, paneer, custard and also ice cream. At first one may not like the taste of soymilk, but young children soon develop the taste for it.

I have thought of replacements for most of the things our son misses. I use flours other than wheat to prepare chapati. Planning beforehand helps because kids remain hungry all the time and give no time to prepare. As kids remain hungry they are willing to try new things which they earlier would refuse. I keep a batter of dosa ready and bake a GFCF cake every week. Fruits and salads are also handy. Actually if you see this as a more healthy diet, we can all of us switch to it, particularly the elders in the family.

The problem of eating out with our son, once he started on the GFCF diet got resolved easily once we realized that almost all south Indian foods are GFCF as they are based on rice and dals. In a north Indian restaurant he could have rice, vegetables and pulses. All can enjoy having orange bar with him after dinner. If we go for parties we try giving him rice, dals and vegetables and if he insists on chapati we carry some GFCF chapatis with us. Carry fruits on outings. At a fast food joint the choice may be limited to just fries and soft drink for the kid. Many parents say that their kids dig into other children's tiffins at school. While they try and find ways to control this they can continue their diet therapy at home. For an older child the diet could be explained to him.

The diet should be tried for at least three months for some visible change. The results of the undigested casein and gluten take about eight months to be flushed out of the system. When the child is ill and at other times too parents tend to get disheartened and may want to discontinue the GFC diet. But if they can stick to it they would soon realise that the children do better with it.

If you want to start your child on a GFCF diet then do not give any dairy products such as milk, butter, cheese, paneer, curd, ice cream, chocolate or any food items that contain these.

Do not give biscuits, bread, cakes, atta, maida, suji, dalia and any food items that contain these.

You would be surprised to know that much of our Indian foods are GFCF. Our namkeens are all besan based with chirwa, peanuts, chana etc. These can replace the biscuits our children snack on.

As already mentioned, soybean can be used to make a nutritious milk that is quite close to dairy milk. Curd, paneer, custard etc can be made from it.

Wheat flour also has to be replaced by other flours like soyabean, chana, makka, jwar, bajra, kutu, singara, etc. You could also try to make a combination of them. Cakes can be baked using a mixture of rice flour, soybean, chana and corn flour.

While removing dairy products from the diet we must make sure the child gets sufficient calcium from other sources. Rich sources of calcium are ragi, chana, rajma, moth, lotus stem, almonds, gur, figs, cherries, currants, dates, watermelon seeds, cumin seeds. Multivitamins and Calcium supplements could also be given if the doctor advises.

Foods you can give include all fruits, all vegetables, all dals and pulses, all nuts, ghee and all oils (ghee has only fat the casein of milk has been removed so it is safe), egg and fish and meats, rice and most cereals (excluding wheat, oats, rye, barley).

Some suggestions for a GFCF diet for mealtimes are:

--For breakfast: Soya milk, Juice, Chirwa, Potato fries, Saboodana, Dosa, Idli, Cheela ,Fruitso For lunch/ dinner: Soups without milk, Chapati made from GFCF flour, dal, whole pulses, vegetable, curd from soya milk, rice, khichri, fried rice with vegetables
--For snacks: potato chips, banana chips, popcorn, cake and biscuits made from non-wheat flours (cocoa can be used in cake and biscuit recipes), fruits, vegetable cutlets, vada, pakori, murmura, rice noodles.
--For sweets: besan ladoo, boondi ladoo, petha, coconut barfi, other non-wheat and non-milk sweets, ice lollies , jellies, peppermint polo, sweet candies.
--For juices: all juices, cold drinks (watch out for the sugar content in them, as some kids tend to get hyperactive.)

Kelloggs products that do not have wheat can be used. These are fortified with calcium and iron.


GFCF Recipes

Soya milk
Roast Soya bean at 800 C for 20 minutes
Soak them for 8 hours.
Grind into a paste
Add 5 parts water and boil.
Then sieve it through a fine cloth.
Add water to make it of the consistency of milk.
Refrigerate.
Add sugar or any flavoring for taste.

GFCF flour
Suitable for roti or try any other combination
1 parts soya bean
1 parts chana
3 part jwar

Cake
Replace butter with1 part oil and1 part ghee
Replace maida with1 part rice flour, 1 part GFCF flour
1 part corn flour
Replace sugar with Brown sugar or gur (complex sugars are better than simple sugars)
Follow usual cake recipe.

Eggless cake
(Egg can be given in GFCF diet, but if someone is a pure vegetarian or is allergic to egg they can try this)
Replace every 2 eggs with 1 teaspoon baking powder and any liquid such as soya milk, juice or water, to make the right consistency.

Biscuits
Use the cake ingredients and follow any biscuit recipe.

Bread
Bread can be made the same way as the pizza base.Without gluten the bread may not be as soft. We can try using a solution of gondh which is a kind of edible gum available in the market.
Ingredients
2 cups white rice flour
2 cups soya flour / chickpea flour
1/4 cup sugar
4 tsp xanthan gum or gondh
1½ tsp salt
4 tbsp oil
1 cup water
1 tsp cider vinegar
½ cup warm water mixed with 2tsp sugar
4 tsp dried yeast
3 eggs
Method
Combine the first 5 ingredients in a large bowl. Add the yeast to the sugar water and let stand to 'proof' for about 15 mins (or less). Mix oil, vinegar and 1 cup of water, then beat in the eggs. Add the oil mixture and then the yeast mixture to the dry ingredients and beat. If necessary add a little more water. Beat preferably in a heavy-duty mixer; if not beat by hand. The softer the dough the softer the bread! Form the dough into whatever you want (rolls, pizza base or bread). Grease the loaf tin and put the dough into it and keep it in a warm place until risen. Sprinkle with sesame or poppy seeds. Bake until golden brown. In my oven the bread took about 50 mins. You will have to experiment with your own oven.
Makes an excellent Pizza base also.

Pizza
Make the pizza base from the GFCF flour, rice flour and corn flour. Mix yeast with the flour and let the dough rise for 3-4 hours in a warm place. Use paneer made from soya milk instead of cheese.

Chocolate Soynut Cookies
Ingredients
3 cups light brown sugar
2 cups vegetable oil
4 large eggs
4 cups all purpose GFCF flour
1 tsp salt
2 tsp baking soda
2 tbs soymilk
2 tsp vanilla
2 cups roasted soynuts(soaked and then roasted),chopped
2 tbs cocoa powder

Method
Preheat oven to 375o F. Beat oil and sugar in a large bowl. Add eggs one at a time, beating well after each addition. Mix in baking soda, salt, all purpose flour and cocoa gradually along with soymilk and vanilla. Stir in soynuts. Drop by rounded teaspoons onto greased baking sheets. Bake for 8 - 10 minutes or until golden brown. Cool 1 minute and remove to wire rack to cool.

Zubin's Story
Nasreen Mazumdar

A mother shares how a special diet has accelerated her son's progress

I would like to share with the readers the reasons why I believe a special diet is necessary for our children. Many children with autism have trouble digesting certain proteins called glutens (found mostly in wheat, oats, rye and barley) and casein (found in diary products). Gluten and casein contain certain amino acid chains called peptides. The digestive systems of individuals with autism have difficulty in breaking these peptides into simple structures. As a result, these peptides leave the intestine and reach the brain through the blood stream and react at certain sites in the brain. These may then radically affect behaviour, cognitive abilities, emotions, pain thresholds and even sound sensitivity. They also react with areas of the brain which are involved in speech and auditory integration.

I first became aware of these facts when I started my fight with autism, that certain foods can actually be detrimental to our children. Yet, I had not planned to change my son's diet as I was not sure how far it was going to make any difference. Moreover it was difficult to find substitutes for the kinds of common foods to be excluded eg wheat and dairy products. It wasn't until I read a book by Lynn M. Hamilton titled "Facing Autism" that I began to seriously consider the idea. A report published in Autism News also influenced my decision.

Once we were convinced that a Gluten Free Casein Free (GFCF) diet might be worthwhile, we first eliminated all dairy products from his diet. This was followed soon by foods containing gluten. We removed bread, butter, biscuits, cake, pastry, chocolates, ice-cream, cheese, cottage cheese, yogurt and in fact all food stuffs with any suspected gluten or casein ingredient. It is extremely important to adhere to the GFCF diet strictly or the result will be flawed. So, though at first I faced utmost difficulty in choosing the right as well as interesting diet for my son, I was not weakened by his requests for non-GFCF snacks. Gradually he started eating and enjoying fruits, roti made of rice powder, idli, chiwra, murmura etc. I found, to my surprise, he didn't hanker after those foods as much as I had expected and he didn't lose weight. Slowly he started taking new foods, almost all the vegetables, cereals, fruit juices and soups.

When the first positive signs began to show after three weeks of GFCF diet, we were happy but still skeptical about its efficacy. But then as the weeks went by we found consistent improvement in his behaviour and cognitive skills - his tantrums gradually reduced and finally disappeared, his depression spells became smaller; his verbal skills also improved though not substantially. But what surprisingly emerged was a strikingly well-developed inner language! With slight help he can now not only write about events and objects but his feelings as well.

He has now been on the GFCF diet for seven months and on the whole the progress has been good, if not spectacular. From my experience I strongly suggest that all parents of children with autism, try it seriously for at least nine months.

Here are some lines from Zubin's writings. The questions were written down for him. He followed each of the questions and wrote down his answers:

Q. How are you feeling?
A. I am feeling happy because I ate chips
Q. Why are you sad?
A. I am feeling sad because I don't want to study
Q. Why can't you talk?
A. I can't talk because I feel pain in my tongue
Q. What is talk?
A. Talk is yes or no and a way to know many things
Q. Why is talking important?
A. Because it can make others know what I want
Q. What do you want to do as a young man?
A. I will look a young man. I will drive a car. I will go out alone to the market. I will watch TV.

Visit to Action For Autism and Open Door
Bente Gad Johansen

From 12 until 21 of August 2000, I had the very great, interesting and warm experience to visit the Action For Autism centre. The purpose was, together with the parents, director, and staff, to help in the plans for the National Centre that will house the school, the Resourse library, the office and all the other activities of AFA. The reason for that was that the D.S.I. Denmark have supported the work of AFA and would like to continue helping in whatever manner possible, so that it could be a reality for AFA to some day get a much better place, with more space, and designed for their special needs.

Before leaving Denmark I had read about the programmes at Open Door on their website, and
I had heard a lot of positive things about the work being done and their dynamism from some Danish persons who had already visited.

At my very first meeting I saw this dynamism and the energy in action! The next day some mothers, the staff and the director came to where I stayed and we had a brainstorming session. Before the end of the next day our discussions were already written up. Really fine work
and what involvement!

The two days I spent at the centre was so impressive for me. I saw all the classrooms, the different activities in small groups as well as one on one activity. Not only was the atmosphere warm and understanding of the children, there was cooperation and confidence between the persons working there: Whether it was persons who came to be trained, or persons who were the trainers. And though the director was everywhere, doing observations - talking to the different persons, who came, talking in the phone, writing at the computer she took the time to explain and answer my questions! I also spent time observing, and had the opportunity on both days to give my feed back on what I had observed, as well as sharing some of my own work experiences.

Coming from a small, rich country as Denmark, where we have fine nursery schools, schools, residence places for children, youngsters and adults as well as daycare centers and much more, it made a deep impression on me seeing the very fine quality of work being done in this environment! There is a very big difference between us when we compare our buildings, equipment, materials and so on.

But here I saw what it means to have the spirit in spite of the lack of materials and space.

The philosophy of AFA that I encountered is a very fine and a good one. We have to accept the autistic person as a person if we want to help them to a better life. But it is hard work, that demands a lot from us. It demands, that we can give structure as structure is strongly needed for a person with autism. Structure gives confidence, and that gives them the courage to try to go into more activities. We have to try to change things into a better way of understanding, also to understand, that what causes autism is a damage somewhere in the brain, as no one has responsibility for!!

Because of my background and from my over forty years of experience I could at once feel and gauge the excellence of the activities AFA is engaged in, with the parents group, the counselling, workshops, and the other activities at Open Door. I do hope Action For Autism will succeed in raising the money for a National Centre, and I hope to be able some day to return and see the new place!! I wish the children, the parents, and everybody, all the very best in the future.

 

 YOU CAN HELP !
Action for Autism needs Sponsors for:
o Autism Network in 2001
o Photocopying needs
o Teachers for Open Door

 

Disability & Census 2001
Rama Chari
National Centre for Promotion of Employment for Disabled People
Member, Disabled Rights Group (DRG)

India is one of the few countries that conducts Census every ten years. The irony is that despite this we do not have authentic statistics on the population of disabled people in our country. Comparing official figures of the disabled population in various Asian countries: India 1.9% (Source: NSSO Survey 1991) China 5%, Pakistan 4.9%, Philippines 4.4%, Nepal 5.0% - one would imagine that we have eradicated disability completely from the country!

In the Ninth Five-Year Plan (1997 - 2002), the Planning Commission had categorically stated that, "to ensure planning for the welfare and development of the disabled more meaningfully, there is an impending need for the Office of the Registrar General and Census Commissioner, to revive their practice of 1981 Census to collect the data on the size of the population of persons with various types of disabilities and to make it available through the next Population Census of 2001 AD."

The Census allows statistics on persons with disabilities to be analysed by a wide range of variables such as age, marital status, income, labour force status, family status and then compared with the results for the total population. Further, the Census can give estimates for small areas and small populations, which is usually not possible in Sample Surveys because of size limitations. No doubt the Census may have problems with under-estimation of persons with disabilities, particularly with mild disability and children and older persons with disabilities. However, while analyzing the data, this can be taken into account to provide baseline information on frequency and distribution of disability in the population: essential for policy planning and fund allocation. Data obtained in the Census can then be utilized for the development of representative surveys and studies where more detailed information can be collected on persons with disabilities. The data could be used to reduce the disadvantage inherent in the limited sample size of sample surveys. The ideal approach would be to use the Population Census as a screening device and then use it to improve the efficiency of the sample selection in a Sample Survey.

However, our Census Commission was not even considering the inclusion of disability as a category in the Census 2001. Interestingly, the first Indian Census of 1872 included questions not only on the physically disabled but also on the intellectually disabled! The practice was discontinued in 1931. Thereafter only once in 1981, the International Year for Disabled Persons was an attempt was made to collect information on disabled persons under the Census! This practice was once again discontinued in 1991. No one saw fit to question this move. The DRG wrote to the Census Commissioner, as well as to the President, Prime Minister, Leader of the Opposition, Home Minister, among others, explaining the need and importance of the issue. We contacted NGOs, disabled people and politicians, appealing to them to protest strongly against this omission of the Census Commission.

Shri Arun Shourie initiated a meeting on 18 February 2000 with the Census Commissioner to discuss issues related to the inclusion of disability in Census 2001. However the Commisioner asserted that:

1. The Census on disability that was conducted in 1981 did not give a correct estimate of disabled people in our country for which the Census Commission was held responsible, which justified the current stand.

2. The Enumerators find it difficult to elicit information from the respondents regarding the type of disability, etc.

3. People with disabilities and their families will anyway hide their disability because of the social stigma attached.

The very wording of the 1981 Questionnaire is illustrative of its shortcomings, not only listing the 'totally crippled, totally blind, and totally dumb', (indicative of awareness levels at the time) but excluding completely hearing impairment, mental impairment, and partial disablement. Rather than excluding disability from its agenda the Commission should consider removing these shortcomings. As for the difficulty in gathering information, the Ministry of Social Justice and Empowerment had given the assurance that it would take the responsibility of training and sensitising the Enumerators. To address the third argument, there is social stigma attached to caste, religion and even gender, yet questions on these issues are not excluded.

The alternative offered by the Census Commissioner was a Sample Survey! DRG argued that there was simply no justification for an Either/Or approach. Population Census and Sample Surveys are complementary to each other. You first get the raw data with the help of the Census and then refine it with the help of Sample Surveys.

When the Census Commissioner remained unmoved the battle was taken to the media, the Parliament and the public. A Public Rally was organised, followed by a day-long Dharna and a planned Nation-Wide Dharna!

A day before the proposed day-long Dharna, the Home Minister's office called the DRG to a meeting to discuss this issue under the chairpersonship of Shri L.K. Advani himself. The Draft Questionnaire of the upcoming Census, brought along by the Census Commissioner, showed a total of 26 questions. These include items such as whether one is a Vegetarian or not. Non-Vegetarians were further asked whether they ate duck or chicken?!! Shri Shourie, who is also a parent of a disabled person, asked the members present, "Are these questions more important than asking whether my child is disabled or not?" Shri L.K. Advani assured the DRG team that the issue would be resolved. An informal Committee was constituted that met the very next day and drafted its recommendations. The recommendations were then presented to the Home Ministry for its final approval. Finally, on 11 June, the Government made an official announcement that disability has been included in Census 2001.

Statistics emerging from Census 2001 will bear directly on policy planning, resource allocation and the well being of 70 million disabled citizens of our country! If we do not play our role effectively, we will have to wait another ten years for a correct figure regarding the disabled population in our country. We therefore appeal to all well-wishers of the disability sector to take up the challenge and ensure that the message trickles down, so that that the maximum number of disabled people are accounted for when the actual Census takes place all over the country, from 9 to 28 February 2001.

The Action for Autism
Annual Benefit Cum Awareness Concert

VENUE: India Habitat Centre, New Delhi
DATE: 20 January 2001
TIME: 6:30 pm - 9:30 pm

The wonderful Sushmit Bose has kindly consented to perform for us at the IHC Amphitheatre
in the New Year!

We will show a short film on autism. Children with autism will also give performances.
It will, as usual, be a fun event for the entire family. Mark your calendars now!

This is the one event that helps to raise funds for keeping AFA's activities going through the year.

If you want to help with contributions, or by raising advertisements in the Souvenir that will be
brought out to mark the occasion, please write, email or telephone the AFA office.

Learning with Aadit
Shirley & Vinoj Manning

Aadit, our son is now four and a half years old. At about three years he was diagnosed as being autistic. Soon thereafter we started the Weekly Intervention Program at Action For Autism (AFA).

Aadit is non-verbal but is able to communicate all his needs very well and in an appropriate manner. Thanks to Merry, Kumkum (Aadit's teacher at Open Door, AFA) and all at AFA we have learnt a lot in handling our child in an appropriate way. We are still learning and we need to continue in our pursuit to learn more so that we can bring up our child to live in an independent manner.

We would like to narrate some of our experiences, which we hope would benefit other parents.

1. The first lesson we learnt at AFA was to avoid using the word NO. Ignore unwanted behavior and always praise good behaviour.

Whenever Aadit would get angry he used to go and bang the door of the refrigerator. At first we scolded him for this behavior. This only aggravated the situation each time he needed to vent out his anger. We then moved the refrigerator to another corner of the house. But the behavior still continued though at a lesser frequency. Finally, we decided to ignore this behavior (at the cost of damaging the refrigerator - but thank God no damage was done). Each time he banged the door, he would wait and see if we responded. He consistently got no response on the next four to five occasions. And it has worked wonders!!! He never ever bangs the door of the refrigerator now.

1. Aadit loved playing in water. While in a swimming pool, he would refuse to get out when it was time to go. Similarly, at the park, if he were enjoying the swing or the slide, he would create a scene when it was time to leave the place. At AFA it was suggested we use timed preparation. So the next time Aadit refused to leave the pool or the park or any other place or thing that he enjoyed doing, when it was time to leave we would warn Aadit that he had five minutes to go.

2. A little while later, we would signal that two more minutes were left, followed by a minute to go. And then when it was time to go, lo and behold Aadit walks out quietly !!!

There are times when he does try very gently to see if we would give in. But no, we are consistent and mean what we say each time. So now no more scenes and he walks out very happily.

3. We have learnt to prepare Aadit for upcoming events that are difficult for him to deal with. For instance, as suggested at AFA we have kept a calendar on which Aadit is shown the day, date and month every morning after which he marks or crosses out the date. Very important events are told to him in advance and that date marked on the calendar in advance. Over the next days these events are talked about and reinforced every morning during calendar time so that he is prepared for them.

Aadit, like many autistic kids, hated the idea of a hair cut. There was a time when we had to hold him so that the barber could do his job. We tried all kinds of tricks like seating him in front of a TV, giving him favoured foods like toffees and cokes. The first time we had given him a packet of gems so as to distract him while his hair was being cut. Subsequently, when on a different occasion he was given Gems, he threw the pack and began to cry. It was only when this behavior was repeated each time he was given gems, did we realize that he connected the packet of Gems to the torture he felt when he had to undergo his haircut.

Kumkum then advised that we prepare Aadit for his haircut a week in advance by marking the calendar and showing him the date on which he was to go for his hair cut. We did so and told Aadit that the barber would style his hair on such and such a day, and he would look handsome like Shah Rukh Khan (Aadit's favorite actor) after the haircut. This was reinforced to him every morning during the calendar schedule until the day of the haircut. On the day of the haircut, though he was a bit afraid due to the sound of the scissors, he held on to papa but sat still without any sounds and let the barber do his job !!! Thereafter, all the three recent haircutting occasions with Aadit have indeed been very pleasant.

This idea of preparing Aadit for any event has not only helped us handle the haircutting event but also other sensitive issues.

Update on Open Door

A new Open Door project, the Mother-Child -Program, started this term as an experiment. It is a day school program where the mother comes with her child and is the implementer of a schedule of group and one- on-one activities. At the end of the school-day a trained therapist gives the mothers feedback on dealing with and teaching their child. The speed with which the mothers learn is what was anticipated when the program was launched. Nevertheless one cannot but feel moved each time it happens with a new mother!

Some of the mothers are now proficient enough to run their Programs almost completely on their own. This is an ambitious project and we are hoping that mothers from far flung areas of Delhi will take advantage of it. The aim being that when three or four mothers from an area get trained they will set up a unit in their own area. Interestingly, some outstation mothers have availed of the program as well and returned to their areas.

One family from Himachal Pradesh availed of the Three-Month program and have gone back. We wish them great progress. Three families, two from Bengal and one from Pakistan, are expected on the program in January. We look forward to welcoming them.

Three of the professionals at this year's training workshop - two medical doctors and a clinical psychologist - have taken the initiative to help set up services for autism in their states. More power to them!

In August Bente Johannsen visited us from Demnark. With more than forty years of experience behind her, Bente is not just knowledgeable about autism-related issues, she keeps an excellent balance and sees things from both the parent and the professional perspective. Bente visited Open Door and observed extensively and gave us feedback on our work: our work with the children, our interaction with families, our training of teachers, and also feedback on the feedback we give each other. It was very refreshing having a trained person from outside come and tell us what we can do to improve. It is inspirational and helps us to focus our energies better. Her visit was a great opportunity to recharge ourselves. She shared with us some great ideas and we learnt a lot from her. What we liked best was that she was very straightforward and outspoken and expressed her opinions clearly. And it is of course also motivating to have someone like her tell us what a good job we are doing!! We all need some appreciation sometimes!!!

We welcome two new therapists, Indrani Basu and Jayati Ghosh, who have completed their training and joined our staff, and Glenys Roberts who has taken over administrative functions.

Sandra who has been with Open Door since shortly after its inception married Abhrajit Bhattacharjee in Delhi. We join all the AFA family from across the country - and abroad - who have sent in their good wishes, in wishing the couple much happiness and joy.

Helpline

Q. My son was going to a normal play school till last session and now he would be going to a special school. However, we are not very sure how much support the school will provide as the school mainly deals with children with Mental Retardation. We are considering moving to the US.

A. I am curious as to why you took A out of the regular school. Did the school ask A to be removed? Till such time as you can take a decision to move to the US or not, you want A to continue at a regular school that is comfortable around him, while you continue working with him at home. This is just in case you decide not to relocate to the US.

As you yourself have noted, the special school that he goes to is not specially trained to deal with him anyway. So where is the advantage of putting him there. On the other hand if the regular school is comfortable having him then there is always the possibility of his continuing there. Getting a child into a mainstream school once he is older is always harder.

Oftentimes we are told by parents that as soon as their child received a diagnosis they removed him from a mainsream school and put him in a special school. Just because a school is called 'special' it does not automatically become special. A special school is a school that is equipped to help special needs children. If a special school is not equipped to deal with your child then it makes no difference.

I realise of course that it is possible that you had no option but to take your son out.


Q. My three-and-a-half-years old son has not started speaking yet. We are in touch with a speech therapist. In her opinion he is not yet ready to start therapy

A. Lets put it this way: Z is ready for intervention right now. The sooner you start the better. He does not require 'speech therapy' so to speak. Children with autism usually do not have any physical difficulties with regards to speech. Put simply, it is more an 'autistic inability' in using speech. What they really require is communication therapy rather than traditional speech therapy. However some speech therapists do figure out appropriate methods of teaching. If your speech therapist says he is 'not ready to learn' either she is not well aware of autism, or is not comfortable working with a child who is not easy and compliant. Which is fair enough, because we all have different teaching styles. What you can do is try and find a therapist or special educator who will be comfortable working with your son, and has a clear understanding of autism.

But finally, given the levels of misinformation regarding autism, you have to be knowledgeable about the disorder and about teaching methods because only then would you be able to tell whether what is happening with Z is appropriate or not.

Q. Have you come across anybody who got properly treated, cured or outgrew this.

A. Autism is a lifelong disorder. You do not get cured of it. But there are many individuals who have progressed to an extent that you would not know unless told that they have autism. They are able to function appropriately in their environment. Every child with autism who receives appropriate help will progress. We have seen children travel amazing distances. However some will progress more than others will.

 Buy an Action for Autism tee shirt
and help support us in our efforts to create a society
that is accepting of persons with autism.
Just Rs 150/- for one!

 

Letters to the Editor

Munira and I would like to compliment all at AFA for the great work you all are doing. Also we do get a lot of encouragment and inspiration from the interesting write ups and articles in Autism Network.

As parents most of us want to create savings and growing investments for our children. Most investments in the name of handicapped children, however leaves us with a concern. How do we handle the matter when the minor child becomes a adult of 18 yrs. Since the 'adult' is now expected to sign.

I am pleased to inform, that on sharing this with 'Tata MutuaL Fund', their General Manager, Ms. Latha Rajaraman (at their H O: Mulla House, Mumbai) was most considerate and agreed to make an exception to allow the Parent/Guardian to sign the discharge on behalf of the special child/adult. I am referring to their scheme called 'Tata Young Citizens Fund' which has the flexibility of allowing investments even in small slabs. This scheme has had a very good past record of doubling the investment in three years. I am disclaiming any 'implied' fixed returns nor am I an agent/ canvasser; it is for the parents to evaluate the scheme. I am making other parents awareof the 'special provision', so that they may make an investment based on their own judgements. They however , need to make a special note on their application form and route it through Ms. Latha for her to add her instructions on the form.

You may visit them at:
WEBSITE: WWW.tatamutualfund.com or
EMAIL: kiran@tatamutualfund.com "

ZAKIR HUSSAIN
Mumbai

I'm back in Goa feeling totally energised after attending the workshop and meeting you all. What a job you guys do! Really, I cannot stop telling my colleagues about my experiences in Delhi. You all are an inspiration and those of us who work in the field of autism in India couldn't have a better set of leaders and motivators than you. Keep up the great effort and we hope to see you in Goa in 2001. Thank you all for one of the best weeks of my professional life!

DR NANDITA DE SOUZA
Goa

Congratulations on the renewal of your website. Great Job! Many parents with new diagnosis have been looking forward to opening the renovated website. I like the FAQ part the best. It is a sea of information. Keep up the good work. Thanks for being an fathomable sea of information.

DR ( MRS.) VIMAL J. THAKUR
New Delhi

Congratulations on the latest Autism Network and on your attractive and informative home page. To Merry Barua our special appreciation for your part in bringing AFA and all its activities from those first desperate yearnings to this ever more powerful organization.

BERNICE & DANIEL SINGER
Israel

I have joined a parents' support group here and wanted you to know that I noted that print-outs from the Action For Autism web-site are in circulation.

SUPRIYA GUHA
Switzerland


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