The big problem with the medical model of autism that barely anyone is talking about

I know it sounds like a click bait headline – but addressing this problem could be absolutely life changing for many, many autists, so I think that’s justified! Here’s why: loads of conversations online, inside and outside autistic groups, got me thinking about something major that’s missing in our discussions, and it’s this:

Many autistic advocates have spoken about the fact that the medical model of autism means that, by and large, only autists who’ve experienced problems/trauma seek diagnosis, and that warps society’s view of autism, leading society to think the characteristics of autistic trauma (e.g. meltdowns) are the characteristics of autism. However, while that is a huge issue in itself, there are two other issues with the medical model that are also damaging:

  1. Those autists who’ve managed to live autistically without problems are lost to our community. They don’t understand themselves to be autistic, because of society’s warped view, so all the things that they have somehow managed to have in place that have allowed them to do that are lost to us. That means we can’t learn from all that invaluable information so we all can stand a better chance of living like that.
  1. Autistic led support groups are often populated by many traumatised people. This has issues for communication, understanding and support that many are unaware of. I’m going to deal with that in my next blog. I’ll link here when I do, but right now, I’m going to focus on the first of these problems

So, what is it that leads to an autist living comfortably without diagnosis?

To be clear, I’m not talking about people who are masking here. It seems that most of those will eventually hit a wall where they do have problems and therefore seek diagnosis. I’m talking about people whose experience of the world and methods of communication is autistic, but they are able to be authentically themselves and advocate for what they need without it being a significant problem for them, and so never seek diagnosis, or even necessarily realise that they are autistic

There is to my knowledge, no research looking at this because how would people know they were autistic to be involved in it? From the people I know that I consider autistic in the way they think and experience the world, there are definitely some things that I’ve observed they have in common, here’s what they are:

  1. Privilege

This is how I first came to the realisation:

Someone on facebook shared a post attributed to Anthony Hopkins – famously diagnosed very late in life as autistic – and I can’t remember the exact details but essentially it was saying: if people aren’t for you, don’t get you or aren’t listening to you, move on.

And it struck me that if you’re an autist who’s in a position to be able to do that, to move on from anyone who doesn’t get you and still have all the supports you need to function then you’re never going to seek an autistic diagnosis. You wouldn’t need to. You’d naturally gravitate to people who shared or were open enough to accept your different way of doing and understanding things and your different needs

Equally if you were brought up confident/arrogant/cynical enough to just think there were a lot of ignorant/stupid/unkind people in the world, then you equally wouldn’t seek a diagnosis because you’d see the problem as external to yourself. I often meet autists like this online (diagnosed and undiagnosed), who can’t see what the rest of us are making a fuss about.

However, what everyone needs to realise is that to do that, to be able to make that choice to walk away from circumstances that don’t suit your neurology and only live and work in circumstances that do is a position of privilege. It requires certain levels of resources and support that many traumatised autists simply do not have through no fault of their own.

They may be children who cannot walk away from parents or caregivers. They may rely on spouses for financial or physical support for a disability and not be able to simply leave and still survive. They may rely on an employer for a job they cannot afford to lose. They may have teachers every day they cannot simply walk away from without there being repercussions in every other aspect of their lives.

Privilege comes in many forms and if we don’t understand how race, gender, class and any other privilege impacts our ability to create a world that is comfortable for us, then we are not showing true compassion to our fellow autists.

However, even if we are hugely privileged in all those areas, there can still be another factor that influences our ability to create the circumstances we need, and that is…

  1. Love

I know this might seem obvious, but if your autistic perception and experience of the world is accepted fully and you are loved deeply for it, not in spite of it, then you are more likely to have the courage to continue to be yourself, to advocate for your needs and to find circumstances that suit you, than if you’re brought up to believe that there’s something wrong with you that needs to be fixed.

This is where the kind of parents who see fighting for autistic cures and ‘normalising’ therapies as a sign of their love really miss the point. Fitting in might be what makes them happy and feel loved, but being allowed to live authentically and express our existence without judgement is what makes us as autists happy.

Acceptance and accommodation will reduce the overwhelm that leads to meltdowns much more than any ‘normalisation’ ever could. I know that that level of deep acceptance is challenging for many, because we live in a neurotypical world where so many people don’t realise what they consider ‘human nature’ is actually just ‘neurotypical nature’. If you’re in the midst of the picture, its hard to see outside the frame. That’s why love alone can lead those who want to support down a path that can do so much damage, love has to go along with….

  1. Acceptance

Try to imagine though, a world where autism wasn’t a medical diagnosis, where it was just a fully accepted natural human trait – like being left-handed for example. That just like being left-handed it was something that you realised you are by experience and people helped you realise through observation. We no longer force left-handed people into using their right hand, because that’s barbaric and unhelpful. But imagine if we still did, and then waited until they had problems, or got frustrated or couldn’t achieve what they wanted; and then instead of just trying out left-handed ways of doing things, we first subjected them to a lengthy medical process with lots of different professionals to make absolutely sure they were left handed; and then still decided they would be better off if they were right-handed, so subjected them to loads of ‘therapies’ to make them more right-handed. That is the literal equivalent of what happens to autistic kids in the medicalised process every single day.

What if, instead, we just allowed people to realise they were autistic, by talking about it. What if we just asked questions like:

“So are you one of those people who likes to hear other people’s experience when you’re sharing a problem, or do you prefer to just talk about what’s going on for you? Which makes you feel more heard?”

“Are you someone who finds it comforting for people to be direct and get to the point or do you find comfort in having small talk first?”

“Do you listen by giving eye contact or does doodling or looking down mean you’re really listening?”

“Do you usually notice every sensory experience going on around you in a space, or do you focus on the main social thing going on in that space?”

There are a myriad of other questions that you could ask to establish, without prejudice, the difference in neurology with your fellow human – and we just so happen to call one of those groups autistic and one group neurotypical. Just like we call people with an in-born tendency to use their right hand right-handed, and those with a left left-handed.

The future

If we lived in a world where autism was fully accepted by observation of difference and not diagnosis, then all autists would know about their differing neurology – not just those that experienced trauma. And we could all share our experiences then, and learn from one another. Those with the privilege, love and acceptance to never seek diagnosis, could share the practical things they’ve been able to do because of those things and could help look at how to implement those things for those who had not been so lucky. Those who had experienced the trauma and problems could educate others about their experience and find the love, acceptance, healing and practically support they needed to live authentically and contentedly. And with more autists living authentically we might start to address society’s conflated view of autism and autistic trauma, and the world might get a little easier for all of us and the generations that follow us.

I, for one, will continue to advocate, educate and share what I know to try to help that vision of the future to be a reality. I hope you’ll join me.

Author: royalcircleofautism

Single mum of three kids blogging about our life as autists on the glorious spectrum that the middle kid renamed The Royal Circle of Autism

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