There’s a war going on out here, and my people are dying.
People are calling us snowflakes. People are saying we’re making a fuss over nothing. People are saying they know better. People are saying everyone has a right to their opinion. People are perpetuating the ‘we are all on the spectrum’ myth that belittles our experience.
“You’re not really that different” they say, “This stuff isn’t important”
But no matter how trivial some think our struggle is, we are still being attacked. There are many people still saying we are an epidemic that needs to be wiped from the face of the earth, and we are still dying.
It doesn’t matter that we are on the side of fairness and justice, just fighting to be allowed to exist, because we do not have the resources they have, and so we are dying.
Of course, as in all wars both sides think they’re in the right, both think they are fighting the ‘good fight’. History will eventually judge the ‘good guys’ and the ‘bad guys’ in any war – and on the whole the people who are persecuting others just for existing and being who they are, the people who are denying the voice of those people, those tend to be seen as the bad guys. History might be written by the victors, but when it’s that clear cut, time reveals the truth.
The autistic side
On one side are the autistic people that accept, embrace and celebrate being autistic. We are the autists who understand that the struggles we have in the world are because the world isn’t made for us – whether that be not accommodating our sensory needs, our alternative communication, our alone time or anything else that we need to just exist as we are. And that’s all we’re fighting for, just to be allowed to exist as we are with the same rights everyone else has. The world is already adapted to neurotypicals, why shouldn’t it also be adapted to autists?
As well as us there are a growing number of amazing neurotypicals who are our allies. Some are NT (neurotypical) parents of autistic kids who seek out and listen to adult autists. They understand that forcing their child to be neurotypical is not a desirable or sensible goal. Others are just interested NTs who can’t believe how subjugated our voices are and want to do what’s right to support this wonderful community.
They are often the people who understand how important autists are to the world. Some see a broken world and they know that the only people who stand a fighting chance of working out how to fix it are those who can see it in a completely different way, and they want that chance for the world, and so they fight along side us.
The anti-autistic side
On the other side are many.
They are the autism professionals who do not bother to listen to the voices of autistic adults and base their assumptions on an outdated medical model. Worse, there are those who make money from ‘cures’ and therapies that traumatise our people.
I was told that I had to make my child uncomfortable in order for her to learn – why? Who learns when they are uncomfortable? That’s not learning that’s forced compliance. And because so many autists are taught forced compliance we are more open to abuse and manipulation, and we are being abused and we are dying. Some of us are dying at the hands of those that abuse and manipulate us. Some of us are dying because a lifetime of being told that everything we feel is wrong and we should to suppress it eventually takes its toll and we take our own lives. A 2016 study (see NHS website) showed that we are nearly 8 times more likely to take our own lives than the average population and our life expectancy is nearly 16 years less than the average.
Some of us are dying because of the lack of understanding in the medical profession, so that if we go into hospital because of our different reactions to pain or the differences in the way we express ourselves we are more likely not to receive the treatment we need. We are more likely to be dismissed. A recent study showed we are more likely to die in hospital because of not receiving the correct treatment than others with the same condition.
There are the NT parents of autistic kids who blindly believe those professionals and so think the autistic adults must be wrong. Even though it is our lived experience they think professionals must know better and we are being unreasonable to say otherwise. They continue to force their children to be like the perceived norm. When they sit in the Early Bird programme for parents with children under five, like I had to, they are reassured that ‘the good thing about autism is that no one will notice’. They are told autism is a bad thing that should be hidden – overtly or covertly but the message is there. They are told to make their kids more like the norm, and they believe that is what’s right because they are ‘good people’ who don’t question these things and think if it’s ‘official’ then it must be right. I feel sorry for these people. They are caught up in a war that is not of their doing and they are often the ones that once given the correct information swap sides.
Then there are the parents of autistic kids that are so obsessed with how hard their own lives are that they ignore their child and the communication that that autistic child attempts, because it’s not like their own. They ignore autistic adults who offer to help them communicate with their child. They write blogs that utterly annihilate their child’s privacy and autonomy. They write books that act as if their child is a voiceless object that they are a hero for looking after. They write plays like ‘All in a row’ or ‘Living with Luke’ that perpetuate the myths that are causing our people to die – and are celebrated for it by the autism professionals and organisations that benefit from treating our very way of being as if it’s a disease.
There are the parents who invent ‘cures’ forcing their children to drink bleach and selling it to other people who blindly accept and force that abuse on their own children. The say the white lumps they see the children bringing up/out after this are the parasites that are causing autism, when in fact those are chunks of their child’s own insides. That is how deep the hatred of being autistic runs.
Even worse there are parents who kill their autistic children because they believe they can’t cope, and they get away with it because of the ‘hero in a tragedy’ myths so many of these ‘autism warrior’ parents are putting out.
We are dying and these are the group that are directly killing us the most, but the myths that perpetuate from them are supported by many many professionals and organisations working with autistics and that is horrific and deadly.
I have little sympathy for parents who behave in any of these ways. Sometimes I wonder if the single minded focus they show, the fact they struggle to cope with the sensory and emotional challenges of caring for their autistic children, and the fact that autism often runs in families, means these parents are actually undiagnosed autists. But being autistic isn’t an excuse for being an abuser or murderer, even in a world in which you are surrounded by messages about autism that could easily make you think such things were sad but acceptable when it comes to autists.
Then there are, unbelievably, some autists on this side of the war. They look at their struggles, believe the hype and blame autism for them. They see their autism as separate to themselves, they want cure, their goal is to be neurotypical, no matter what it costs them. They have been conditioned by all the others on this side of the war that who they naturally are is wrong and pathological. They have completely internalised that ableism. It is tragic. They become foot soldiers and say to autist advocates fighting for our existence ‘we are not all like you, you don’t speak for me’. The professionals and organisations who benefit from their view point parade them as examples of how grateful autists should be of their abuse, just because some autists believe the tragedy narrative. Those autists often attack us even more vehemently than the others on this side, so attached to their denial, and so desirous of the support of the rest of their side. They are single minded in their focus because their struggles are great and they genuinely believe that autism – not the attitude of those around them who support that belief – is the problem. I know those not willing to hear this yet will feel patronised and angry just by reading it, but I am one of the many autists for whom it is sickeningly hard not to tell the truth, no matter what the consequences.
Many of us have been through that stage of just wanting to be ‘normal’, many of us have been in denial precisely because of the societal myths around autism – for some this stage is just a passing phase, but some get stuck at that point in the journey. I hope one day something breaks through, some article, some comment, something that starts them back on that journey to lose that internal hatred of who they are towards self-acceptance and seeing the amazing gifts of being autistic and not just the challenges.
How will history judge this war?
As I said, where one side of the war is trying to subjugate the other, to deny their experience, their voice and their right to exist, those are usually seen in hindsight as the ‘bad guys’, even if it takes many years to get there. It doesn’t matter that they think what they’re doing is best for the ‘good guys’, it doesn’t matter that they think it would make things better for the world. All of the things most of us find abhorrent today were once believed to be ‘for the best’ by huge numbers of people
We don’t consider the extermination of the Jews acceptable just because the Nazis genuinely believed the world would be better without them.
We don’t consider slave owners okay, just because they genuinely believed that non-whites were a savage species and so it was okay to ignore their voice, own them and give them no autonomy over their own existence.
We don’t consider conversion therapies to ‘cure’ people of being gay acceptable, just because the people pushing them thought it was best. Did it make it okay because some gay people said they wanted to be cured? (And if we find those conversion therapies unacceptable why do some consider it acceptable that the same form of therapy is used to traumatise autists in to being ‘normal’ to this day?)
We don’t consider it okay for women to not have the vote and be considered the property of their husbands just because many people believed women were not as intellectually capable as men.
Being autistic is just as much a part of who we are as our race, gender or sexuality. Just as with all of those things, finding yourself born into a non-dominant category can present massive challenges in a world that is not made for you. The problem, however, remains the world, not us, as all the fights that those groups have battled and continue to battle have shown us.
What some people find hard to accept is that for autists with differing support needs it is still the case that it is the lack of accommodation and understanding in the world that is the problem. That is why functioning labels are offensive – what our support needs are bears no relation to how we ‘function’ internally as most people would understand it.
Those of us who are non verbal or need support with our physical needs do not have less right to dignity, respect and access to communication than those who have less obvious support needs and are able to communicate through spoken language. It is a spectrum and we all have different presentations on it (it does NOT mean a spectrum from ‘not autistic’ to ‘severely autistic’). I use spoken language and can usually move about but sometimes I can do neither of those things. Calling me ‘high functioning’ therefore denies me the support I need. For some whose experience is similar to mine this becomes too much over many decades and they take their own lives. We are dying.
Those considered ‘low functioning’ by society are regularly denied their rights and their privacy and no attempt is made to seek their consent about things in their lives that impact them or are about them. The injustice of that is only highlighted when considered against the background of both anecdotal and research evidence of non-verbal autists being written off as not having thought or feeling because they didn’t communicate in the way neurotypical society believed they should, who then communicated clearly and eloquently once given access to appropriate alternative communication. Some of those non-verbal autists are amongst the most eloquent advocates, poets and writers in our community, but so what if they weren’t? Does that mean they shouldn’t have the rights or privacy that the general population take for granted? If you can’t communicate with someone, does that mean you can automatically assume they have no thoughts or feelings just because they are not expressed in a way you understand? Does that mean you can then use them however you want? Speak for them? Share their struggles through blogs, plays, books without ever giving them a say in that?
There is a war going on. I call it a war because we are being attacked and are dying as a result. We are dying because of the misconceptions around autism and the refusal of our attackers to accept our right to exist as we are.
I hope that eventually we will win, because we have as much right to a long and happy life as every other neurotype, but I don’t know if that’s the way the war will turn. The world is not made for us, we need both support and solace to access so many things. We do not have the time or resources either financially, physically or emotionally that the other side have, as so much of those are taken up just in existing in the world. But we are autistic and the focus we are capable of in the right circumstances is undeniable and we will continue to fight and find our way through.
Please help us, please be on the right side of history. Listen to autistic adults. Challenge the so-called experts when they tell you we are to be pitied, marginalised, normalised. Challenge people when they claim ‘we’re all on the spectrum’ to learn about what autism actually is, to go beyond the stereotypes and the myths. Learn about our communication and our culture and direct others to it. Fight with us, and maybe more of us will survive, because it’s been a long long battle and we have a very long way to go and we are so, so tired, as we drag ourselves onwards just for our basic rights.
We have a right to a voice even if no one has worked out how to hear it yet.
We have a right to dignity and respect and not to be used without our consent in someone else’s tragedy narrative.
We have a right to not be trained to be compliant making us vulnerable to abuse.
We have a right to be heard when it comes to medical treatment and not denied because of how we experience things internally or how we communicate externally.
We have a right to not be pounded by the weight of people’s ignorance and denial to the point that our suicide rate is nearly 8 times higher than the national average.
We have a right to not be blamed when we are murdered.
We have a right to life.