What’s the first thing one does when one becomes aware of autism in the family? I went online, I read books, I watched TV shows. In my view, this can cause unnecessary upset when it comes to autism. I have seen very few articles in mainstream media that give a balanced view of autism. Here’s an example:
Click here for an unbalanced article about the experience of children with autism, written by authors who have no experience of an autistic childhood and didn’t feel the need to consult with those who do
‘How does a child experience autism?’
If I wanted to know what it felt like to snowboard in the alps would I want the opinion of someone who had never done it? If I wanted to know how women experience being women would I be interested in the opinions of a man? Of course not. Yet in the article linked above, there are no opinions from an autistic child or (it appears) from any autistic adults.
It is possible the authors of the article are autistic. They have ‘two children on the autism spectrum’ so it is certainly possible (likely?) that at least one of the authors is autistic. If that is the case I would love to have read about their own autistic childhood. I prefer to read autistic people writing about their own experiences rather than attempting to speak for us all as though we are a homogenous group.
What is autism?
No one could write a paragraph adequately answering this question as there is so much still to learn about autism. The description of autism in this article includes a lot of clichés. Autism frequently gets described as a spectrum which to me is too linear. It makes me think of a line of autistic people ordered from ‘low functioning’ to ‘high functioning’. Humans are more complicated than that. Our ability to function is dependent on many different things and will vary throughout our lives and even throughout each day. We don’t describe non autistic people as on a spectrum, that would be equally illogical.
I could also comment on the use of person first language (perhaps a future blog post), describing autism as a disability (already blogged on this here). But what about describing us as different? I’d love to hear the views of other autistic people on this. I am quite happy with that term but only if the non autistic person who describes me in this way understands that they are also different. They are different from me. There is no one correct neurotype.
The statistics presented are not facts! The media like to simplify data and I understand why, but this can be harmful. The data are useful and can help inform priorities for services and future research. Please don’t describe them as facts though. These figures can obviously only be based on children who have been identified as autistic. I wasn’t identified as autistic as a child and I am an example of an autistic person who wasn’t bullied and wasn’t excluded from school. I believe this data to be biased and overly negative compared to reality. You are more likely to be identified as autistic when you are struggling and therefore come to the attention of teachers. It is unavoidable as we can’t know facts, whilst we don’t know who all the autistic people are, but the media ought to include caveats and inform people of limitations of research. They have a responsibility to do that in my opinion.
Problems with social communication and interaction
Young people on the autistic spectrum live in a world that is difficult for others to understand, and one which has difficulty understanding their needs. They can have problems with social communication and interaction, which may result in low self-esteem and confidence. Socialising in groups can be difficult, so time away from school is often spent alone. That’s why the ski club is so important to the boys and girls at Kaimes
The above quote from the article demonstrates how autistic people so often are considered the ones with the problem. I don’t think we have more problems with communication than non autistic people. Communication is two way! Why is non autistic communication considered superior to autistic communication? When I misunderstand others it is frequently because they didn’t say what they actually meant? Why is that my fault?
For me socialising in groups can be difficult and I do like my alone time. But I would add that many non autistic people appear to have difficulties spending time alone. Many people need others around to keep them entertained. Maybe we should help them improve their ‘alone time’ skills? They could benefit greatly from this.
For me, it’s about personal choice. I love that there is a ski club so that autistic children who want to socialise get an extra opportunity, but it’s absolutely fine to prefer time alone.
Difference between boys and girls
I enjoy seeing so much about female autism in the media but this article as with many others over simplifies. It assumes gender is binary. It also doesn’t acknowledge that there are other children, not just girls, who are good at ‘masking’ and ‘fitting in’ thus at risk of slipping under the radar with potentially serious consequences. As with the rest of the article this section is very medicalised with talk of ‘symptoms’, ‘diagnosis’ and functioning levels.
At first glance the section called Eddie’s day appears as though we could be about to get some insight from an autistic person. But no, the contributions are from the neurotypical people around him. I am not going to comment further than that even though I have a lot of opinions on this section.
Advice on how to support us
This is perhaps the worst section of them all. As well as being patronising, with ableist language, it completely over generalises. This is what they have to say about slower brain processing:
That doesn’t mean you should talk slowly or over-pronounce- they are not stupid! Using a calm, reassuring tone of voice and smile can lower anxiety.
Thanks for the suggestion of smiling at us, just in case it gets forgotten that autistic people are humans who are equally deserving recipients of good manners.
The writers have assumed the reader is not autistic throughout. Just like much of the autism research I read, this article is another example of ‘us and them’. An article written about us, without our input, for the benefit of people who have to associate with us.