Why I Wanted the Autism Label for My Son
There’s a saying you might have heard, “If you meet one person with autism, you’ve met one person with autism.”
Sometimes I wonder if only those who really know someone with autism get how little others understand this saying. Not everyone who has autism has the same characteristics or traits. Just because your friend’s child with autism doesn’t make eye contact doesn’t mean my child won’t either. Just because the man with autism you worked with has a photographic memory, it doesn’t mean my child does, too.
There is a reason it’s called autism spectrum disorder, and in case it’s not obvious, the key word is “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 Deciphering Developmental Disorders (DDD) 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 pediatrician was reluctant to diagnose him 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 he had a diagnosis of autism. Thanks to his speech and language therapist, he received it last year.
I wanted a diagnosis, like so many others, because sometimes a label can help. Yes, labels 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 sometimes have to 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 it’s not all.
And when Brody is upset because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behavior 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 portrayed on 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.
Brody has a learning disability and struggles with understanding. He is nonverbal and dependent on adult care. He needs help with personal needs. He has impulse control and sensory issues. He can laugh and cry in what appear to be inappropriate ways. He has no danger awareness. And at this point we don’t know if he will be able to live independently.
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 around 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 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 humor.
I’m glad our son has an autism diagnosis — and I’m pleased that this diagnosis can hopefully help to ensure we can get him the right support he needs as he grows older.
But admittedly, I hope 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.
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