Can we talk about a cure?
There’s a real problem when it comes to Autism, and it’s not to be found in us autistics. It’s to be found in the focus of funding.
Time and time again I see people struggling to get diagnosed, and then struggling when there is so little real support post-diagnosis.
The vast majority of funding appears to be spent on finding a cause for Autism, and studying what it really means neurologically.
I’m not saying those things shouldn’t be funded, but that leaves a tiny percent left for actually supporting people.
I’ve recently seen a disturbing comment by a parent of an autistic child, berating an autistic adult for calling themselves autistic, “You wouldn’t call a child with cancer a cancer child!” is the argument.
I wonder if they know how hurtful and offensive that is? I wonder if they realise that they’re comparing a life destroying illness with a brain process. My brain process. My autism isn’t a cancer on my soul. It’s a profound part of who I am. It’s the way I see the world.
If you take away cancer, that is a good thing. If you take away my autism, who am I? Because I can guarantee that I would not be me.
Taking the cancer analogy further, if all terminal cancer patients were treated like autistic people, there would be an outcry. “I’m terribly sorry about the symptoms and the pain, but we cannot provide you with pain relief, counselling or practical supports or anything that might help slow your decline, since we’ve focused all the funding on finding a cure. Isn’t that great?”
But I don’t want a cure. I want support for the negative symptoms that my autism causes. I want education for society in what being autistic means.
Essentially I want to be the happiest version of me possible.
When you talk about curing me, not curing my negative symptoms, you are talking about exterminating who I am. You are talking about taking away the way I connect to the world. My fascination, my obsession, my joy.
When I say dealing with negative symptoms, I mean those that actually harm the autistic person or those around them. I don’t mean training a child not to do a harmless stim because it looks weird.
If we admit that ABA (Applied Behavioural Analysis) works to change behaviour, but in the same breath say that it’s the autistic child that must be forced to behave normally, then we’re missing a trick. Why squash the autistic child? Why force them into behaving in ways that will cause them exhaustion and harm? Why not turn it out onto the rest of society? Force acceptance?
If you think the idea of forcing acceptance on society is appalling, but forcing acceptance on an autistic child is for their own good, then perhaps you need to re-examine your thought processes.
I needed help getting diagnosis. There wasn’t any help and it took 18 months to get my first appointment. There’s no funding.
I need help dealing with sensory overload. There isn’t any help for me. There’s no funding.
I need help dealing with my anxiety at times. There isn’t any help for me. There’s no funding.
It’s just not there. It should be.
Autism is not cancer. Autism is not the enemy. Autism is a normal neurological variance. Just like being left handed. We need the right scissors, or rather the left ones.
We need alternative methods of communication. We need understanding. We need to be treated with respect.
We are an integral part of this world. There are millions of us. It’s time acceptance meant just that. Accepting that we are here now we’ve been noticed. Accepting that it’s ok to change things for the minority when it won’t be a negative change for the majority.
Accepting that some of us want to be called autistic, and not “with autism”, just like we want to be called left-handed, and not “with a sinister preference”.
When you correct the way I describe myself, you are using language in such a way that suggests autism is stigmatising.
I am Rhi. I have blonde hair. I have children. I have a husband. I have autism. I have a passion for writing.
I am Rhi. I’m blonde, I’m a mother and a wife, I’m autistic and I’m a writer.
Both are fine. Telling someone they should use one over the other is not fine. It means you’ve decided certain terminology is negative, and instead of fighting that negativity, you’re accepting it.
It’s time we saw Autism as normal. It’s not a fad. It’s not fashionable. It just is. It’s time to accept what is, and work on making the world a better place. The time has come.