If you’re walking a similar parenting path to mine, you’ve quite possibly heard the saying:
“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 five-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…
