Adam Feinstein: A History of Autism. Conversations with the Pioneers
März 19th, 2012 by Taymur Teardrop

Lange habe ich an dieser Stelle nichts veröffentlicht, und noch viel länger nichts ergiebiges. Immerhin habe ich eine Übersetzung von Michelle Dawsons Notes on autism severity and the DSM-V seit Dezember 2010 und Notizen zu meiner Erfahrung mit einem Neuroleptikum in der Warteschleife. Von anderen Ideen und wichtigen Fragestellungen, die mir immer wieder durch den Kopf gehen, ganz zu schweigen.

Aber mal abgesehen von der fehlenden Zeit oder dem nötigen Superstoffwechsel, die notwendig wären, um all den Interessen, die mich kitzeln, nachzugehen und dem ständigen Krampf mit Menschen, deren Probleme very confuzzling für mich sind, kann ich mich über meine Situation ja nicht beschweren. Tough shit to deal with, aber als Autie seinen Weg durch das Chaos zu meistern, wird immer eine Herausforderung sein. Zu meinem Glück gelingt mir das immer besser, und ich denke, ich bin nicht der einzige, der davon profitiert.

Heute möchte ich gerne auf Adam Feinsteins „A History of Autism. Conversations with the Pioneers“ (Wiley-Blackwell, 2010) aufmerksam machen. Eigentlich wollte ich gerne eine Rezension aus der Perspektive eines Autisten schreiben und fragen welchen Gewinn, welche Impulse es für das autistische Individuum und eine autistische Selbstvertretungsbewegung bietet. Doch dafür reicht die Zeit nicht. Deshalb sei nur allen, die sich für Autismus interessieren, die Lektüre dieses Buches dringend empfohlen und mittels einiger Zitate die Leselust dazu bereitet. Vielleicht hole ich die Rezension mal nach. Wenn jemand eine Übersetzung des Buches in’s Deutsche finanzieren kann und will, bitte melde Dir!

Chapter 6 – The 1970s: Major Steps Forward

For her part Lorna Wing told me: „If you look at all the different criteria – Mike Rutter’s and lots of other individuals‘ suggestions – all of them emphasize the social impairment, the communication impairment, and perhaps language. We do agree with Isabelle Rapin that it is the way language is used that is impaired in autism. Judy [Gould] and I thought that imagination was very important – it was the development of imagination in the non-autistic children which enabled them to think and feel that other people were thinking and feeling. That is what imagination and pretend play are for. That is the root of the social skill – and that is why we put imagination in the Triad [of impairments]. We now emphasize that it is social skills, communication, and imagination which are impaired. Autistic children do have imagination, but it is not social.“

[Judy Gould:] „In fact, we first called it the ‚autistic continuum‚ and then we realized that the word continuum had an implication of discrete descriptions along a line, whereas that was not really what it was. It was not a question of moving in severity from severe to mild. That was not what we were trying to get across. The concept of a spectrum is more like a spectrum of light, with blurring.“

Chapter 7 – Definitions, Diagnosis, and Assessment

[Tony] Attwood added: „My view is that, if we are not careful, we are going to have an ‚autistic‘ view of autism. We are going to overfocus on the tiny details and miss the big picture. There may well be academic studies which suggest that there could be differences between the two groups [Asperger’s and ‚classic‘ autistics] on some aspects. However, I think that this is more of academic than practical interest, because when it comes to socializing, communicating, community integration, etc., there are more similarities than differences.“

Chapter 8 – The 1980s and ’90s: Theories and Conceps:

[Darold] Treffert added: „The main messages of the movie [Rain Man] – that there is no six-day cure for autism and that is really Charlie who changes, not Raymond – overshadow any caveats. Charlie’s accomodation with, acceptance of, and appreciation for his brother at the end of the movie – rather than the stereotypical rejection and ridicule – that change in Charlie – is a message for all of society.“

Chapter 10 – Where the Future Lies

Most people who meet a child with autism would, I hope, find Bruno Bettelheim’s choice of title for his 1967 book, The empty fortress, profoundly misguided. There is nothing remotely fortess-like about autism, which can so often be marked by fragility. And we know, from the first-hand accounts of articulate autistic individuals like Temple Grandin and Donna Williams, that their minds are anything but empty.

Dr. Temple Grandin, the world’s most famous woman with the disorder, told me: „There would be a horrible price to pay if we got rid of all the mild autism and Asperger’s. There would be no science, no arts. I don’t think social people invent things.“
Rita Jordan told me she was very unhappy about the idea of „getting rid“ of autism. „The idea of curing autism implies that people with autism are somehow more ‚diseased‘ than people without autism. That is not my experience.“

Dr. Read Montague, Dr. Pearl Chiu, and their colleagues scanned the brains of adolescents with Asperger’s syndrome while they played an interactive trust game. They found that these adolescents played the game just as a non-autistic person would but they lacked the characteristic „self“ signal in the brain. Normal people lacked the signal only when they believed that they were playing against a computer, suggesting that high-functioning autistic people viewed interactions with other people similarly to the way that non-autistic people thought interacting with a computer.

One remarkable recent incident gave hope to many parents and professionals, alike. An autistic man in St. Louis, Missouri, spoke his first-ever words at the age of 50. Those words – for the record – were „I don’t want that. Get away.“

For [Theo] Peeters, autism is such a complex condition that „exceptional people need exceptional professionals“ who have both an in-depth knowledge of the disorder and an ability to be flexible. „When you listen to people with very high-functioning autism, like Jim Sinclair or Claire Sainsbury, they very often use the analogy of a different culture. Sometimes, I say that what we need is not more psychologists but more anthropologists who have learned to look at other cultures without prejudices. We need each other. People with autism need us, because they have to learn about our culture or behavior. But if we want to understand autism better, we need much closer collaboration with people who understand autism from within. So I really feel we are entering a new era in which at least some people with autism will be our collaborators.“

Weitere Eindrücke vom Buch bieten einige bekannte Autismus-Experten, eine Präsentation zu einer Buchvorstellung und zwei Rezensionen bei Autism & Oughtisms und Autistic Hoya (alles in englischer Sprache).

Die siebenundzwanzigseitige Seiten Bibliographie lassen mir nicht-sprichwörtlich das Wasser im Munde zusammen laufen.

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