There’s that saying you’ve no doubt heard…
“you meet one person with autism; you meet one person with autism”.
Sometimes I think that only those who really know someone with autism get how little others understand this.
That not everyone who has autism has the same symptoms or traits.
That just because your friend’s child with autism doesn’t make eye contact, it doesn’t mean that my child won’t be able to.
That just because the man who you worked with, who also has autism, has a photographic memory, it doesn’t mean that my child will have.
That there is a reason that it is called autism spectrum disorder, and in case it’s not obvious, the key is in the word “spectrum”. Everyone with autism is unique and the spectrum is huge.
Primarily, my 5 year old son Brody has an undiagnosed genetic disorder, with a secondary diagnosis of autism spectrum disorder and epilepsy. We are members of a great charity called SWAN UK (Syndromes Without A Name) who support families like mine, who have children with no overarching diagnosis to explain all of their symptoms. And we are part of a huge genetic study, called the DDD (Deciphering Developmental Disorders) to try and find answers.
I regularly hear stories that it wasn’t easy for parents to get an autism diagnosis for their child. It wasn’t straightforward for us, either.
Brody’s paediatrician was reluctant to diagnose in case his autistic traits could be part of his undiagnosed syndrome. But the truth is, we may never find out what syndrome Brody has, so I was keen to make sure that he had a diagnosis of autism. Thanks to his speech and language therapist, we received this last year.
I wanted a diagnosis, like so many others, because sometimes a label can help. Yes they may bring prejudice and ignorance, but they can also bring understanding and much needed support.
Too many of us know that when you have a child with disabilities, you have to sometimes fight for help and services. Without a diagnosis, this fight is a lot tougher. A diagnosis can help you win some of those battles, even if sadly it’s not every one.
And when Brody is screaming because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behaviour to those around us.
For me, that helps.
So, what’s our autism story? Well, it doesn’t look like the Rain Man type characters you often see portraying it on the television.
I hate the term high or low functioning. It’s uncomfortable, clinical and rude. After all, we’re talking about human beings. We’re talking about my beautiful child. But I suspect that if health professionals were to tick a box with these thoughtless terms, they would say that Brody fits in to the latter category.
Brody has a severe learning disability and a low level of understanding. He is completely non-verbal and dependent on adult care. He cannot wash or dress himself. He is doubly incontinent. He can be sat playing with you and out of nowhere hit you in the face or pull your hair. He has sensory issues. He can laugh and cry inappropriately. He has no danger awareness. And it is likely that he will never be able to live an independent life.
But regardless of these facts, Brody is not defined by his autism or any of his disabilities. He is Brody – our brilliant little boy who is much more than these things.
Brody who can look you straight in the eye and share a laugh with you, like only you and him are in on the joke.
Brody who likes to be pushed in his swing or spun round in his IKEA egg chair.
Brody who loves the car wash.
Brody who likes to use your hand to point to things in books.
Brody who could eat an impressive amount of McDonalds Chicken Nuggets if given the chance.
Brody who loves to be tickled.
Brody who, although is up at the arse crack of dawn each day, loves to lean against you downstairs in the dark and snuggle (with his iPad of course) so you can get over the tiredness a little easier.
Brody who has a smile that will light up the darkest of rooms. And who has the best sense of humour.
I’m glad that our son has an autism diagnosis – and I’m pleased that this diagnosis can hopefully help to ensure that we can get him the right support he needs as he grows older.
But admittedly, I hope that people don’t hear the word autism and just see a label.
I hope they see Brody – just like we see him.
For all of the wonderful things he is.
This blog was originally written for my friend James, who writes at Stories About Autism.