Gestión de la TSA y operaciones

“I think that well, what I did do was, get lots of books. Um, um, I can’t remember what they’re called but we’ve still, still refer to them now. Err, ‘my brother has autism’ and books describing autism . . . and, and we showed him a lot of that, and showed him a lot of um, clever people with autism. Um, on the internet, so, ‘Okay here’s a musician, he’s amazing, he’s got autism’. So, so we just planned to tell him about it and all the

positive things about it.” (Laura)

All parents verbally communicated about autism with their child in the first instance and after this supported learning and exploration with the use of television programmes5, books6, and/or the internet. It appeared that parents packaged their responses and approach to discussing autism with the aim of enhancing communication and fostering greater understanding in the child. Such processes have been peppered throughout the analysis where parents

5

For example Clarke & Griffiths (2011) My autism and me

6

133 have described ‘sharing in the here and now,’ ‘taking the child’s lead’ and

‘drawing upon everyday experiences’. Like Laura, parents used resources which detailed famous or successful people considered to be on the autism spectrum:

“One of the things that we did, erm, oh, I think I found it on Google, all the people that have supposedly got Aspergers or Autism, like Bill Gates, Einstein and all them, and I think that, that boosted Dylan’s confidence, […] it’s good to show that it hasn’t stopped them. I mean they said Einstein didn’t speak until he was four or five or something, you know, and things like that. So it just goes to show that you can achieve, if they put their mind to it. So yes, that was, that was a positive that we did for Dylan I think.” (Kirsty)

Parents also personalised talk of strengths and positive qualities to their child: “[…] His maths ability, how good he is at that. The way that he looks at different things, you know, certain things differently. He can solve a problem much quicker than some other people, certain things, you know, see things differently. He’s very quick on the mark. Also with comments, he’s got quite a dry sense of humour, you know, which is really, really good, he makes me chuckle.” (Erica)

Consistent with the thread running through the analysis, Kirsty and Erica demonstrate how interactions about autism were overwhelmingly positive, perhaps with the aim of instilling hope and retaining positivity in the child’s current and future self-concept. Parents appeared to have greater difficulty talking about the ‘negatives’ associated with autism:

“Err … I think mostly, um, mostly, it’s, it’s, it’s hard when it came to, the kind of the negatives of autism or kind of having learning difficulty, um, especially if you had to say something, something negative or something that, um, that he couldn’t do as well as other people.” (Jenny)

Jenny alludes to “the facts” of autism which has been interpreted to mean everyday difficulties such as disliking change or experiencing intense emotional responses. Such difficulties may be part of the shared understanding of autism

134 which has developed between parent and child and which is openly

communicated about. Conversely, parents appeared to filter out information about the vulnerabilities associated with autism, understanding this to protect the child. Jenny went on to suggest that other systems may also support a minimising approach:

“[…] he had a personal review last November. When he’s present, you know, everybody’s very careful to talk about strengths and positives and things like that. And it’s only really when he’s gone out of the room that we can talk about how vulnerable he is, how he struggles with this and that, you know. So, you know, I think it’s the same at home, […], if it came to, to the negatives, then it’s finding the right way to, to phrase it, so as not to upset him or hurt him because he’s actually quite sensitive, so, you know.” (Jenny)

Parents (and perhaps broader systems) tend to take a balanced approach to communication about autism, whereby they draw on strengths, positives and, day-to-day challenges in supporting their child to understand autism. However, it is perceived that parents need to gate-keep information relating to autism and the future, the assumed reasons for which have been captured in the broader analysis (e.g. parental preparedness, perceived child preparedness).

Interestingly, there appeared to be a tension in parental accounts regarding the autism spectrum as a difference versus a disability, which of course is also observed in professional and Neurodiverse communities. At times parents appeared uncomfortable describing autism as a disability and often adjusted their narrative; appearing to be in a conflicted position of “well, it is, and it isn’t” (a disability).

Perhaps parents’ descriptions reflect the conflicting discourses available in society, and importantly, suggest that parents do not communicate about the autism spectrum with their children as a disability, although may do so privately. Arguably, parents may use the language which best fits their intention for

example, talking about ‘disability’ may be useful and indeed required when accessing support for a child, whereas ‘difference’ may be used in context where parents want to cushion others and their response to autism.

135 “[…] I don’t think it has to be a negative thing really. I don’t think it’s, it’s not like a disease is it? It’s just a different way of thinking. […] Wendy Lawson7, […] you know her? (R: yeah) She calls it “diff -ability, differently abled”. You know, […], as soon as you start saying disability, it’s like something wrong and … it’s only wrong if, you know, you’re told its wrong. But, it, it’s not wrong is it? It’s, you know, why, why are they wrong and we’re right? I … and when, and a lot of it when you think of how we are, how we talk and how we, don’t finish our sentences, and presume things and don’t say what we mean, you think ‘God, no wonder they’re confused and think we’re the weird ones’ (both laugh) So no, you know I’m very positive about autism.” (Rebecca)

Rebecca’s is clearly aligned to autism being a difference and also draws upon social notions of disability and disabling environments; which contrasts greatly with Susan’s account below:

“And also, I ensured that … um, it’s not my personality to sort of say, ‘Oh it’s just a difference’, you know, we’ve all got a, you know, we’ve all got a right to be who we are. It was, it was explained, ‘Yes it is a disability’ … some people take the extreme attitude of; it’s not a disability it’s just a difference. Um, I don’t … go with that. I will say; it’s a disability.” (Susan) Susan infers that a person being aware of their disability allows them to adapt in ways to accommodate life’s challenges. These divergent accounts perhaps encapsulate how a parent’s position in relation to autism will be likely to shape the shared understanding they construct with their child.

That is not to make a value judgement on either position, but rather to reflect on the broader social and cultural factors which may impact on diagnosis sharing. This further raises curiosity about the difference-disability conflict and the range of descriptions available to parents when sharing an autism diagnosis with their child and indeed whether or not they decide to share.

7

Dr Wendy Lawson is a renowned speaker and professional in the field of autism; she has a diagnosis of High Functioning Autism.

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