Every day I see it and I hear it – people talking about autism as ‘just a different way of thinking’, ‘same computer different processor’, ‘neurodiversity’, ‘different ability, not a disability’.
There is a whole movement of people with autism who are advocating for themselves who believe their autism just makes them unique, it makes them quirky, it makes them good at their hobbies and jobs, it is a part of their identity and their autism is a gift.
I applaud that, I really do, if you can advocate for yourself and that is how you feel about yourself and your life then that is fantastic. You should self advocate, of course you should and that is commendable but what about the autism spectrum as a whole? What about autistic people who can’t advocate for themselves? What are we telling people about autism when we are speaking for everyone on the spectrum? What are we telling the world about people with autism who can not voice their opinions? What happens when we say autism is just a difference and not a disability?
Here is my concern as a mum to a child with autism.
Our daughter has autism. When she was diagnosed with autism the word ‘severe’ kept cropping up. I don’t know how severe or not severe our daughter is, I don’t know where she sits on the spectrum, it isn’t really a huge concern of mine, but there is one thing I know for sure:-
Our daughter is disabled.
Isla is disabled because of her autism.
It doesn’t matter if we think of autism as a different neurology or a different view of the world, us thinking that won’t magically stop Isla from having a disability. She is disabled and she has autism. She isn’t alone.
Here is where I believe the issue lies. It lies in the word disability. I believe people have a real issue with the word ‘disabled’ and the connotations that go with that when they are talking about themselves. Disability implies you can’t do something, disability implies vulnerablity, disability implies that you need help.
Here is the actual definition of disability as found in the Oxford English dictionary:-
It really is that simple.
Disability is not a dirty word.
According to the definition of disability our daughter has a disability and many children and adults with autism do too because autism can make it difficult to do what others do. I know plenty of people with autism who all sit on different places of the autism spectrum that would say that they are disabled, they would tell me they find things difficult because of sensory issues, communication, social situations or anxiety to name but a few.
Isla can do so many wonderful things and is progressing all of the time, in ways some people never expected, but she can’t do things that her peers without autism can do, she just can’t. Maybe one day she will, who knows but I can hand on heart say at this very moment in time she struggles with the things her peers don’t struggle with and that’s because she has a disability – she has autism.
She isn’t just quirky (for the record she is pretty quirky but I digress), she doesn’t just have a different way of thinking and she can’t be compared to a computer.
Isla is Isla. Isla is a beautiful girl, a clever girl, with a huge smile, the biggest heart, who gives the best cuddles and also happens to have a disability.
We can celebrate Isla’s infinate abilities and everything that makes Isla the amazing child she is whilst also embracing her disability because that is also a part of what makes her so wonderful. To deny her disability would be denying a huge part of her life.
Her disability does not define her and I think that’s the issue – that people don’t like to think of the word disability because they fear it will.
What if we simply embraced the word ‘disability’? What if we celebrated it instead of shunning it?
Isla can’t advocate for herself and it worries me that some people are telling the world that autism is not a disability, it worries me that children and adults with autism who can’t communicate like you and I simply can’t get their view across, can’t tell people how autism affects them, can’t show the world that autism has a huge spectrum and isn’t what they think it is.
Imagine one day autism is viewed as ‘a difference’ and not a disability.
Well then the little support people get now will vanish, the therapies will be none existent, people may not even get a diagnosis, disability allowances and benefits will stop, supported lodgings will cease to exist, any equipment you need will have to be paid for because the NHS swill no longer fund it, special school places will no longer be given, all support systems shut down, all help available vanishes, you are on your own trying to navigate a very confusing world.
Isla may need help and support for the rest of her life and if autism wasn’t classed as a disability she wouldn’t receive any. She wouldn’t even be able to attend the school she loves so much.
We need to think about the vastness of the autism spectrum. We need to consider that everyone on the spectrum is so very different. We need to think about everyone on that spectrum.
If you can advocate for yourself do so fiercely, do so with the appreciation that you can, do so with drive and passion but do it for you, for yourself, and for you only.
Please don’t do so for our daughter, please don’t try and downplay our daughters struggles, please don’t try and talk for strangers unless you’ve walked their path, please let people with autism advocate and speak for themselves and if they can’t allow their loved ones to do so for them, and just as importantly please don’t shy away from the word disability like it’s something to be ashamed of….
because we aren’t ashamed. We couldn’t be any prouder.