Part 67: It’s Not You – It’s Me.

Hello, and welcome back to The Autistic Writer. It snowed! Did it snow where you are? As I write this paragraph, I’m snowed in, and I just can’t get my home warm. It’s looking pretty picturesque out there, but the problem is, I won’t be able to get my car out, and I’ve only realised this morning that I don’t own a pair of wellies. Looks like I’m hunkering down until it clears.

In this week’s blog, I want to talk about being invisible. Not comic book invisible; I’m not talking about slipping into a supervillain’s hideout undetected. I’m talking about how autistic people end up not being seen and not being heard, even by the people who are supposed to care. Like most things in life, it turns out this problem isn’t quite as straightforward as it first appears.

Let me start by relating a conversation I was privy to this week. I’m changing some details to protect identities, but the gist of it is accurate enough.

When I thought about this conversation, something occurred to me. The nameless autistic child will not be a child forever. He or she will grow into an autistic adult. Like other people, he or she will develop a complex self-image, deep and conflicting emotional states, and opinions. That’s right, just like any other human being. And he or she will look back on life, and try to assess how experiences have shaped them. And, as part of that process, they will develop feelings about what it was like to have been widely regarded as a burden, a problem, a thing often not mentioned by name, and seen only as a source of the perceived heroism of their parents.

I cannot tell you how every single autistic adult would react to overhearing a conversation like the one above, because we are all different. But we also have a lot in common, and so, from an admittedly non-scientific and purely anecdotal viewpoint, I can tell you what I think autistic adults would have to say about it. Based on my experience of spending a lot of time listening to other autistics, especially in forums where it’s almost exclusively autistic people talking with other autistic people, I would say that at least 90% of them would be upset or angered, but not surprised,. There are a minority of autistic people who would be fine with it – I’ve communicated with a small number of autistic people who hate being autistic, who feel their autism is a problem, and wish they were not autistic. But they are a tiny minority, and we should think very carefully about why such people hate themselves. Most autistic people accept or, like me, are fiercely proud of, being autistic. It is who and what we are.

Why is it that autism – and by extension autistic people, including children – are seen as a problem and a burden? Some of it comes down to a refusal by some neurotypicals to genuinely accept that autism is not an illness. I call this the nudge-nudge-wink-wink syndrome:

Even for people who do understand that autism is not an illness, many of them still see autistic people as wrong in some way; not normal in a pejorative sense. And from that, seeing us as a problem is their inevitable conclusion. Is there any justification for it? Let’s see…

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One thing is for sure. Autistic people do have problems. And some of those problems will be health issues that can be difficult to deal with. We talk about autism as a spectrum, but we don’t often talk about the autism halo. By this, I mean the many health problems that often co-occur with autism, but are not autism themselves. Conditions such as epilepsy, migraines and gastro/digestive problems are very common in autistic people. These conditions can be difficult to manage for anyone, autistic or not, but when they occur in an autistic person, especially when that person is still a child, other people see these issues as autism. The perception is different from that of a non-autistic child dealing with such conditions. A similar thing occurs with learning difficulties. Some autistic people have learning difficulties; some non-autistic people have learning difficulties. But when learning difficulties are co-occurring with autism, people tend to label the learning difficulty as autism. The whole learning difficulties issue is a tricky one; the types of difficulties a person can experience vary wildly, some being more obvious, some less obvious. I have some less obvious learning difficulties, but they have been largely ignored because I have educational qualifications, including an A-level, and a first-class honours degree, I’m pretty well-read with a fairly broad base of general knowledge, and I write bloody good fiction. So my difficulties don’t matter as much, to some people. But the more obvious difficulties, particularly in autistic children, get called autism, even when they are the exact same difficulties experienced by some non-autistic children. Another health issue often encountered by autistic people is the mental illness double-whammy of depression and anxiety. Again, these problems can be experienced by non-autistic people too, but here is an important difference: In autistic people, anxiety tends to be triggered in two main ways. One way is from overload; sensory or social. When things are coming at us thick and fast that do not match our autistic way of experiencing the world, it can make us extremely anxious. The second way anxiety is triggered in autistic people is the same way depression often affects us; it is based on the way neurotypical people behave towards us. If you’re a sharp thinker, you will have spotted something important in this observation. But let me spell it out for you. For many autistic people, autistic anxiety and depression are among the biggest problems they face, and they are the most noticeable to people around them. Meltdowns and /or isolation can result. But these problems are largely the results of neurotypical society, culture and environment. This means that if neurotypical people show us a little empathy and understanding, and make simple accommodations for the fact that their noisy, bright, over-social world is alien to us, then the problems can largely go away. But you know one thing that can really make our anxiety and depression worse? Behaving in a way that makes it clear you see us as problems. Not only does that trigger anxiety and depression, but it exacerbates other halo health problems we might have; the gastro/digestive issues, the migraines and so on can all be made worse by stress and anxiety. This affects autistic children just as much as autistic adults. Neurotypicals tend to see meltdowns and shutdowns in autistic children as problems with the child, and don’t realise the problem is with themselves and the environment they create. They often don’t stop to look for the triggers; they focus on the behaviour of the child, whereas if they really saw the person the child is, they might look to remove or mitigate the triggers.

By making us feel we are the problem, by casting us as stage props in the heroic, long-suffering drama of our parents and families, neurotypicals make us ill.

If you are a non-autistic person reading this, stop for a moment. Try to get past any emotional response you might have of being offended by what I’m saying. Think about how autistic people might actually feel when they hear you say things like, how tough it must be for our parents, spouses, family, whatever. Do you want to know what is tough? Living as an autistic person in a world that sees us as a problem is tough, when half of the difficulties we experience are caused by neurotypicals, and the other half are difficulties neurotypicals also experience. That’s hard to take. Now, we come to another obstacle to the acceptance of autistic people. And it’s a biggie…

Interlude: A brief message

I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via Okay, back to the blog.

The many factors that influence the understanding of autism by the general public do not exist in separate spheres. There is a social environment around autism, that works rather like an ecosystem; everything affects everything else in a dynamic way. But some forces within the autism ecosystem are more prevalent and aggressive than others, and so have a more noticeable effect. I am speaking figuratively when I talk about an autism ecosystem; I’m not referring to a biological system, but a system of information. Within this autism information ecosystem, ideas and opinions are communicated, exchanged, and transformed along the way, much like Chinese Whispers, or Dawkinsian memes. The interplay of these exchanges of information, as ideas vie for prominence, is fascinating and terrifying in equal measure. For example, take the piece of information, Autism is not an illness. Any reasonably reliable source of information about autism is likely to repeat this information (some of the less reputable ones do, too). So, if you go to the NHS web page on autism, it will say Autism is not an illness. However, many sources of information, including lots of those that seemingly agree, Autism is not an illness, will also share information about treatments and therapies for autism, and some even talk in terms of cures; terms that relate to illness. These conflicting ideas circulate in the autism information ecosystem, along with lots of other information, good and bad. This circulation of ideas comes from people talking to each other, people reading and writing books, web pages and blog posts about autism, people filming documentaries, news reports and youtube videos about autism, and so on. All these emissions of information get repeated (sometimes accurately, sometimes not) and get commented on, and discussed in further emissions. Some emissions generate hardly any response. Some gain huge traction. From this, consensus ideas emerge; opinions regurgitated as factoids that come to be the prevailing views on autism. One thing that helps certain emissions gain traction, and thus become the prevailing views, is funding. Funding allows advertising, and higher rankings of web pages on search engines, and so on. A book about autism published with huge advertising fanfare is going to have a greater impact on public opinion than a pamphlet Joe Bloggs prints in his bedroom and hands out on the street, regardless of the relative accuracy of information in each publication. This leads to a gross inequality of ideas about autism, and importantly, leads to the exploitation of autistic people. Let me explain…

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It is becoming increasingly common for information about autism to focus on the parents and families of autistic people. Articles, news reports and books are regularly talking about the effects of autism on families. This is something you can research for yourself by doing a quick internet search. Before starting to write this article, I did a little googling with the phrase, parents of children with autism (deliberately choosing person-first language for this search). I could have picked out a lot of stuff, but I’ve gone for just two typical examples of the kinds of problems thrown up by this focus on the families of autistic people. The first, predictably, comes from the despicable Autism Speaks:

You will see from this screenshot how Autism Speaks puts a focus on the struggle of a family coming to terms with having an autistic child, or a child that has autism, as it is phrased. This particular example stops short of calling autism an illness, but insists that You want your child to get better! With its talk of shock, and how parents might experience grieving – equating an autism diagnosis with the death of a child – this propagates some awful ideas about autism. Autism Speaks is a huge, multi-billion-dollar worldwide autism propaganda machine. Any google search you do about autism will bring up hits for Autism Speaks. The organisation makes huge amounts of money on the back of its autism misinformation, which goes toward paying huge salaries for its top employees, and for fending off litigation, amongst other things. With the immense global profile and financial clout behind Autism Speaks‘ propaganda, is it any wonder that false and harmful ideas about autism dominate the autism information ecosystem? Let’s have another example, from a different source:

Here we go again, from the website Love To Know. In their article, we immediately see two mentions of treatment for autism, despite the fact that there are no treatments for autism (unless you count dangerous snake oil scams, like bleach drinks), and autism is not an illness to be treated, anyway. This article also focuses on the financial impact on a family of a child’s autism diagnosis. Phrases like emotionally devastating are used. Why? The net effect is to yet again present autism as something wrong with a person. You know, autism isn’t an illness, but nudge-nudge-wink-wink, that’s just politically correct bullshit; it is an illness, really.

There are two drivers behind this kind of reportage. From the likes of Autism Speaks, it is all about the big money, and keeping the billions flowing. As long as autism is presented as problematic, parents and families will continue to panic, and look for expensive treatments and therapies, however inappropriate and useless. From some of the smaller news and cultural outlets, the agenda is also about money, but it’s usually focused on getting people to read the articles and then see/click on advertising links. It simultaneously creates and exploits social panic and misunderstanding of autism, to get clicks. These articles and claims go out there into the autism information ecosystem, and get liked, shared, copied, and reposted. They get discussed at the breakfast table, in the classroom, the canteen, and the pub. The focus of the discussions becomes how awful autism must be, and how brave, strong and resilient the parents and families are for coping with autistic children. Meanwhile, the autistic people themselves are rendered invisible. We are forgotten in the maelstrom of handwringing about those poor, poor, parents and families. I’m not insulting parents or families, here. They are victims of this misinformation, too, and it can hardly help their mental health to be constantly barraged with information telling them that autism is bad, wrong, and needs treatment, and that they are so brave for coping with an autistic child. Too many people simply believe what they are told if they think it comes from an authoritative source or just someone they trust. If someone is told often enough they are a victim, they will start to believe it. You don’t have to spend long in online communities to find parents of autistic children revelling in their roles as victims of their child’s autism. They crow about how they will never give up, and will fight to the end.

If you are a non-autistic parent or family member of an autistic child, or related to an autistic adult, I have this to say to you: Autism is not about you. It is about me and people like me; autistic people. Your behaviour, if you are not thinking carefully, could end up harming your autistic child or relative, either because of the trauma they will experience from always being seen as a problem, or because you fall for the nonsense about treatments and therapies, or try putting an autistic child through ABA. If you are a non-autistic parent of an autistic child, you are no more brave or strong than any other parent. Furthermore, you do not know what it is like to be autistic. You need to understand that the well-intentioned sympathy of others for your “struggle” might be indirectly traumatising your child. Where autism is concerned, you need to get your information from the most reliable sources possible; autistic people. Autism is not about you; it’s about us; autistic people. There should be nothing about us without us. We will not be the invisible props for your drama, nor shall we be relegated to the status of commodity, exploited for profit by the global autism industry. We will continue to deploy our voices in the autism information ecosystem until we are heard and seen.

That’s all for this week. Until next time, take care, be good, stay proud.


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.

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