A severe problem

I received a message this morning, letting me know about an article on the FaceBook page of the Department of Education and Training in Queensland’s Autism Hub.

The article is upsetting in a number of ways. It contains misinformation, stereotyping, lots of negative language, and lots of blaming autistic people for their parents unhappiness and stress.

There are a couple of good things in the article; it does address some inadequacies in the systems that should provide supports, but it then goes on to advocate for interventions, treatments, and more autism specific experts and professionals, with an emphasis on support for the family.

It doesn’t once call for the input of the real experts on autism- autistic people themselves. It does not acknowledge that the cause of the stress autistic children experience could be attributed to the fact that their needs are not being met. It blames everything on the severity of the child’s autism.

And, to top it all off, this article (called “Yours Severely” if you want to look it up) is published on the website of a parent run organisation that claims to be wanting to help autistic people, but routinely ignores them and speaks up over them instead of centring  autistic voices in conversations about autism. And it has been shared by an arm of a government organisation that is supposed to be doing something to support autistic kids to access a good education.

I don’t often respond directly to the problematic stuff I see published every day. There’s just too much of it out there. But today I’ve got a bit of time, and I’d been thinking about this topic lately. So I’m going to use this article as just one example, and address an issue that I see in it and in many many other places as non-autistic people theorise about autistic lives.

When people find out that a child is autistic (or even when they find out an adult is autistic), they want to know how “bad” it is. Articles like “Yours Severely” perpetuate the fear of having an autistic kid. They play on people’s fear to garner sympathy. When they are published on websites of big organisations who rely on fundraising to stay operational, you can bet the publishers are looking to raise money from the pity generated.

They categorise us in ways that stigmatise, limit, and disadvantage us. Functioning labels, like severe or mild, are an excellent way to stigmatise and cause misunderstanding about autism and autistic peoples behaviour.

There is an excellent saying amongst autistic advocates (if someone can tell me where it originated I’ll add credit here) that says that the labels of severe and mild are more about how you experience my autism than about how I experience it. Advocates also point out that once a person is labelled as severely autistic people will assume they are less competent than that truly are, and that once a person is labelled as mildly autistic their support needs are often overlooked. The discourse created by non-autistic people about what we need is damaging!

So, I’m going to be really clear about this:

There is no such thing as severe autism. There are autistic people. 

Autistic people all have needs to be met. Just like everyone else. 

These aren’t special needs, or different needs, they are human needs.

Autistic people need food, shelter, connection with other people, and to feel safe and valued. Just like everyone else.

Autistic people will communicate their distress when their needs are not being met. Just like everyone else. 

An autistic person who uses what the people around them label as “challenging behaviours” is simply a person resorting to communicating their distress in confronting ways because their previous attempts at communicating were not recognised or acknowledged. Which is something that any human being would do if their needs were not met for long enough.

There is definitely a severe problem here. But it is not autism. The problem is where parents seeking to understand their autistic children are getting their information from.

Bringing in non-autistic “experts” to talk about what they think they know of autism is not going to get autistic people’s needs met. You would likely scoff if I told you that I, a straight white woman, was an expert who could tell you about the lived experience of a homosexual black man. So why is it alright to get all your information about autism from non-autistic professionals?

If you want to understand the behaviour of an autistic child, and if you want to gain insights that will help you modify the environment and actions of the people around the autistic child in order to ensure the child’s needs are met, then listen to autistic people.

That child you have labelled severely autistic is a person who is struggling in a world not built for them, and that stubbornly refuses to bend to make things more accessible to them. They are not “severely autistic”- they are autistic and severely misunderstood, severely stigmatised, severely stressed, severely anxiously, severely exhausted by trying to get you to hear them. Listen!

There are plenty of autistic adults out there who understand this, have lived through it and can offer insight and advice to non-autistic parents. You might have to look a little harder to find them because the non-autistic voices are more prominent, but we are here. There is no need to settle for the advice of professionals with theoretical understanding only.

I’m going to conclude, as the author of “Yours Severely” did, with some of my hopes…

I hope that eventually we’ll raise a generation of autistic kids whose parents didn’t publish articles about how hard they were to raise.

I hope that our society can realise the simple truth that all of us are human being with rights and needs, no matter who we are and how our brains and bodies work.

I hope that one day people will recognise that autism is not a curse or a burden, and that the key to a happy life as an autistic person is acceptance and kind support.

I hope that the respect families are shouting loudly to demand these days will be afforded to autistic people so that we don’t continue to have to live bearing the brunt of the emotional harm done by growing up knowing you are considered less valuable than others because you can’t do the things everyone expects you to.

I hope that autistic adults will soon begin to be seen as the experts in their own lives, the experts on autism, and as a valued part of the broader community sought out for their insight, advice and support of the younger members of the autistic community, their families and the growing community of professionals and educators currently positioning themselves as experts.

I hope that we can move past this ideal of the perfect child so that all children can be spared the burden of unrealistic expectations placed on them for their whole lives. And so that when it becomes obvious that a child will need different supports than expected it won’t be seen as a crushing blow, a tragedy or a disaster to be recovered from.

11 thoughts on “A severe problem

  1. An excellent and much needed response to the ” article”. Congrats Michelle!
    We autistic adults seem to be invisible having our knowledge of ourselves dismissed in favour of the assumptions of those for whom life in a completely different experience.

    To acknowledge knowledge may be intimidating to them for they would have to admit their ignorance and our expertise which would then call into question all the work previously done based upon their assumptions. Ramifications of such would call into question the ” intervention industry” etc., a brave move and non-autistics professionals embarking upon seeking out ” autistic voices’ are to be applauded, particularly if they actually listen, take on board what they learn and acknowledge their awareness has come from contributing autistic people.

    There is a concern that our voices may be misinterpreted and thus the actual individuals providing significant entrance /awareness into the autistic experience should be formally recognised as both a form of appreciation, respect, and a means to render the interpretations open for discussion and, if needs be, to rebuttal.

    1. Yes, I agree, and you know I wouldn’t mind seeing the dismantling of the current popular model/s of intervention. I do think there is a place for non-autistic voices in this discussion…. it’s just that the right place is *with* us, rather than *over* us, *on behalf of* us and *instead of* us.

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