Oops… I’m sorry to say that I fell down a typical advocates loophole... When I first started advocating, I though the world needed positive stories about Autism, to best make positive change. The world had convinced me that, in order, for Autism to have value to people, it had to be a gift and make them go “wow!” -To make people listen and learn. I was wrong. I honestly don’t know why I thought that? (As it is so wrong). I didn’t realise people needed to relate to story’s to holistically help - and ‘gift’ stories aren’t that relatable to a lot of our Autistic community (who face the disability side of Autism like I do) - even if the gift story’s do show sparks of hope for the future. Sparks of hope aren’t helpful though - sparks of hope for a disabled child’s future should literally be about the child -not moulding them to become the inspiration story the parent or carers once read about. They shouldn’t become a version of me, or anyone else. The child is wonderful as they are- they need accessibility and support to shine in their special way.
Autism, no matter how it fluctuates or impacts any individual, is valuable as the person is human. Their capabilities should not come into that. Ever. I made that mistake. How did I get sucked into that mess of believing people will only see my worth as a human if I prove to them that I have something to offer? Like “ooh I’m Autistic but I advocate and stuff, so I’m kind of worthy of support... right?” or “Look at my cool talent! I’m worthy of being Autistic and alive!”. Yuck. No - that’s not how being a living breathing human works. We exist. We are 100% human and we are 100% automatically deserving of humanity, and are 100% worthy of dignity and respect. That should be the baseline of care we receive. By advocating mostly on how able I can be, focusing on gifts, I was:
-unintentionally combining worthiness with ability - leaving behind all those in our Autistic communities who are not so able, who present with medical comorbidities or a dual diagnosis; and also, ironically, I left behind all those who are just like me, with severely fluctuating disability’s and capabilities, who perhaps, needed a relatable story to learn self acceptance. (A story that I wasn’t sharing as I thought the world didn’t need/ want to know the hard stuff). The world needs the nitty gritty hard stuff of being Autistic, in order to learn and develop and encourage Autism acceptance no matter the disabling impacts. I was being unknowingly ableist and insensitive. I’m so sorry for that.
As an Autistic advocate, I do think that so much of advocacy in recent history, is largely created as a means of trying to prove to the world that we are worthy of being seen as humans; this is because, historically, we were so often dehumanised, and seen as stealers of dreams, monsters and shells that had to be moulded into real people. In this way those advocates had to overcompensate to earn us any type of respect, care or support at all. This is one reason why ‘savant’, ‘gifted’ and person-first language is still so prominent (see my ‘key’ if you would like to learn my thoughts on the language debate). In order to get the public to acknowledge our humanity and worth, they highlighted special cases where disabled or Autistic people did extraordinary things or had talents or savant abilities - because that was just about the only way to get people to respect us.
The thing is, we have moved past that now – and now we are advocating that we are still human and worthy of love and support, even with our disabilities – and that yes – it’s also not offensive to be called disabled, as it doesn’t take away our worth, quirks, positive attributes, or humanity. We advocates do scream into the void about this a lot- but it is slowly making a difference, when people learn about functioning labels, Autism acceptance, Autism awareness and diagnosis stereotypes. Society has a gross obsession with the ‘overcoming suffering’ dynamic of “oh wow they can overcome X to achieve greater things than we expected them to!”.
The problem is that this expectation of greatness is put on every Autistic person.
All the ‘non exceptional’ normal Autistic or disabled people are then shunned for not being inspiring, while being blamed, shamed and disregarded. Then, their baseline support is lowered and gaslighted, because they are judged as ‘not even trying hard enough’ when their autistic peers are ‘exceptionally talented’ or geniuses – so if they’re truly trying hard enough to overcome their struggles - why can’t they also be exceptional?
Not only is this perception harmful and wrong, this expectational conditioning is not equal in neurotypical society who all accept that the exceptional few in their midst, are not also talents and successes that are also expected of them. This ‘exceptional talents advocacy only’ is a perception taught from disability advocacy that tried its best to help us throughout history -but now is outdated; it’s also disability advocacy that is not centred from the Autistic lived experience of actually Autistic or disabled people, and is centred from nondisabled, neurotypical people.
This perception is like trying to showcase that only the neurotypical Olympic athletes and neurotypical geniuses are worthy of being viewed as human, or viewed as needing support or loved or seen as genuinely trying their best to overcome. Everyone accepts that this level of greatness is unattainable to most humans – and that this is okay – no one expects anyone to actually achieve those things unless they have truly unique, and exceptional circumstances. Yet because of how grossly we have been dehumanised, when it comes to Autistic people - who are disabled by their brains and also a misunderstanding society - we are still only giving respect if we can inspire others.
So much so, that it has become the expectation pressured upon every Autistic person, who is somehow at fault and gaslighted when this impossible achievement is unattainable.
You may read this and think that I am hardly one to talk about human worth and value based on humanity, because I have achieved so much of that ‘greatness’ people expect of Autistic people. Yes, it’s weirdly true, I do not like to admit it, but I guess to other people I have achieved some of 'greatness' expected of Autistic people, in my life too – but I would like to clarify that if I was in the same situation as most Autistic people, I wouldn’t have achieved nearly any of the things I have.
I would also be deemed as 'unexceptional'; but most importantly – I would still be trying my best, and my worth is still valuable, and my progress still valid, because of my humanity – and not what I offer to the world.
True, I may be under privileged but I am also very privileged too, because the two can coexist – whereas most Autistic people aren’t nearly as privileged as I am. Just like with neurotypical and non disabled people, who can use privilege to achieve greatness where as others use any privilege they have to survive or thrive at a more acceptable baseline.
For me, this disabled identity empowers me to be my best self - 100% accepting of ALL of me- Autism, quirks, hardships, gifts. disability and all. There’s nothing more empowered than taking what the world sees as a negative, and using it as your positive, because you understand there’s nothing wrong with you. I’m a proudly Autistic woman, 100% disabled and perfectly imperfect-and I wouldn’t change my Autism or my fluctuating functioning for the world-I love my Autistic Wings, and never wish to change.
That said, I am one of those people with the rare, exceptional circumstances that allowed for my success and self love – if you can avoid it, never, ever compare yourself, or your child, to me; my achievements never can minimise yours, and my progress will never demean the value and worth of yours. You don’t have to be exceptional or gifted or talented to be worthy – you’re perfect as you are and you are making progress, because you try.
Please believe it. Please believe in you – I sure do.
x <3 x