Understanding autism
Understanding autism

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Understanding autism

5 Personal testimonies

While not everyone with autism is able to describe their experiences, an increasing number of personal accounts provide insights which both complement and differ from ‘outsider’ insights. Parents may also provide deep insights which are not available without these close bonds. Remember, though, that individual accounts of autism are just that. For instance, some autistic individuals describe their thinking style as highly visual. But this does not necessarily mean that visual thinking is a general trait in autism. Next you will consider some parental and personal accounts.

Activity 6 Learning from personal accounts

Allow about 20 minutes

Read these two passages and listen to the interview extract. Make a few notes on similarities and differences between the accounts. For instance, are the accounts given by autistic individuals or by parents? What interests and difficulties do they talk about?

Jessy’s social understanding remained, and remains, radically incomplete. Such simple lessons. ‘We can’t ask them to move because they were there first.’ The difference between irritation and hurt feelings. Making sense of people, ‘grasping the general significance of situations’. What the autistic adult, like the autistic child, finds hardest of all.

What is it like to have a mind that picks ‘remembrance’ out of the newspaper yet must struggle to comprehend the most ordinary vocabulary of social experience? What is it like to have to learn the myriad rules of human interaction by rote, one by one? By rote, because the criterion of ‘how would I feel if’ is unavailable, since so much of what pleases (or distresses) her, does not please others, so little of what pleases (or distresses) others pleases her.

Clara Claiborne Park writing about Jessy, aged 42 (Claiborne Park, 2001, pp. 16–7)

I must mention that the boy loved to watch the different calendars of different rooms and then recall the numbers. He also compared them. He thus spent a lot of time, gazing at the numbers. He wanted to know what they meant. He found a kind of pattern in them. He wondered how the figures bent and straightened up, curled and sometimes broke!

Tito Mukhopadhyay aged 8, writing about himself as an infant (Mukhopadhyay, 2000, p. 19)

Listen to the following extract from a recorded interview with Dr Wenn Lawson discussing his autism with Dr Ilona Roth (Lawson and Roth, 2011). Note that Wenn was living as a woman at the time of this interview.

Download this audio clip.Audio player: aut_1_wk01_lawson_childhood_experiences_clip.mp3
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Transcript

ILONA ROTH
You have talked a little about your childhood and you’ve written about your childhood; in what ways did you feel different from others when you were growing up?
WENN LAWSON
I know that I didn’t experience life in the same way as other children simply because people kept referring to things which didn’t make sense to me, everyday things, children’s games, things that adults required of you, things that were said. When people said things like they would just be a minute, but they weren’t a minute, they were much longer, I used to feel lied to and get very angry about things which other people, other children, kinda took in their stride, so those sorts of things I think I experienced very differently
ILONA ROTH
Would you say that you felt lonely as a child?
WENN LAWSON
That’s a difficult one because I don’t think I felt lonely. I often felt alone, because of being misunderstood, the isolation of not connecting to understanding, which is actually quite different to feeling lonely, I think
ILONA ROTH
And looking back now how do you think your autism manifested itself in your behaviour as a child and adolescent?
WENN LAWSON
I was very obsessive, I had interests that just took over all of my being really, mostly interests in insects, in animals, later on in my teens very obsessed with engines; piston engines in particular not into rotaries, and I think that was very noticeable because my sisters and my brother were not interested in those sorts of things and the things they were interested in often varied so they would be interested in something for a very short time and then that would change, whereas my interests, my passions, were very passionate and stayed with me for quite a while. Other things that were quite different was I didn’t talk for quite a while and then when I did speak I tended to monologue or talk about the things that I was interested in and not so good at listening or turn-taking-those sorts of things; very noticeably different to the ways my sisters and brother interacted with their peers and with each other.
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Answer

Tito Mukhopadhyay (a young boy in 2000) and Wenn Lawson (an adult) contribute their personal reflections, while Clara Claiborne Park speaks for her adult daughter Jessy.

Tito and Wenn Lawson mention passionate engagement with particular topics (calendars, numbers, insects, machines) while Clara mentions Jessy’s attention to detail.

Clara Claiborne Park and Wenn Lawson both mention problems and frustrations of understanding the subtleties of language, the rules governing social situations, and the difficulty of taking other people’s feelings into account.

Finally, in this clip meet Alex, who will describe his experiences of autism at various points in the module.

Download this video clip.Video player: boc_aut_1_video_week1_5_alex.mp4
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Transcript

ALEX:
I'm 21, and I live in Crawley, which is next to Gatwick Airport. I any currently work a part time job, but I also study. I'm doing pharmaceutical science, because that's the route I would like to go down, to do pharmacology or pharmacy.
ILONA:
So you have an autism diagnosis?
ALEX:
Yep.
ILONA:
And do you remember how old you were when this was made?
ALEX:
I was actually one of the lucky ones, very young. I was about 2 and 1/2, 3.
ILONA:
So you wouldn't be able to remember what it was like to be diagnosed. But what about your family? How do you think they reacted?
ALEX:
Well, I think my dad was all right, but my mum was quite upset about it and that. And she thought, would I be able to do things on my own independently and all that. But obviously, I am now.
ILONA:
Were your parents particularly helpful in encouraging you to do things independently?
ALEX:
Yeah, I meant now I'm pretty independent. I drive, I work, obviously. I'm studying. So I've got a busy lifestyle.
ILONA:
Do you live at home?
ALEX:
Yeah, I do at the moment. But I do one day hope to have my own place.
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