I’m going back briefly to put myself into my mother’s shoes; you see I’m a second generation autism mum and a very new family addition to this world is my sister Christina and my nephew Alex.
Autism unless severe, was not diagnosed back then.
I have a brother; Brian whom is an undiagnosed autistic person and now 30 years old, I don’t need to be a medical professional to know this. I know this because my son Cameron and Alex who are both diagnosed share every trait of his. Back to the 80’s…
She would ask him a thousand times why he had done something; he never knew and would do it again as soon as her back was turned.
The tears she cried.
A Doctor once told mum that there were thousands of children like Brian who fall through the net and are let down by the powers that be.
By the time there were mentions of autism and complex diagnosis, Brian was in high school.
It was too late for him; he left school with no grades having had no support. The reputation he had obtained throughout his school life was of being naughty, instead of an ASD label he so deserved. He now has a family and found his own way but things could have been much easier for him.
Genetics… At present, no specific genes linked to ASD have been identified and there are currently no tests that can screen for ‘ASD genes’.
However, the specialist seeing your child may screen them for genetic conditions that have similar features to ASD, depending on any additional symptoms your child has or are present within your family history.
There are some families where only one member has a diagnosis of ASD, and no one in the extended family has a diagnosis. Such ‘one-off’ incidences of autism are referred to as ‘simplex’ autism.
On the other hand, there is a multitude of families (like my own), where more than one member of the extended family has a diagnosis, or several members have very high levels of autistic traits – even though they might have never received a formal clinical diagnosis. Such families are referred to as ‘multiplex’ families.
Experts estimate that between 400-1000 individual genes may play a role in the complex neurological issues involving autism.
I have read that if you have one child with autism then the risk of your next child having this also is only 2-6%, if autism was down to a single gene then this figure would be more 25 or 50%.
Present day; back in my shoes, a multiplex family.
So in the 80’s there was no diagnosis for Brian…2012 a thorough but lengthy diagnosis for Cameron…. and 2015 a quick diagnosis for my nephew Alex where we noticed on multiple occasions within the reports “maternal cousin confirmed ASD & uncle ASD traits!”
It’s easier in some ways for us; it goes much more beyond statements of “Ohhh he’s just like his uncle/cousin” or “He does that just like his uncle/cousin”.
For us the similarities are comforting, it’s reassuring if we have seen the trait before because we then can gauge if it’s a phase and if it was outgrown.
It’s the unique traits that are new or unknown that make us more nervous or take to the Internet for reassurance.
Christina and Alex were my inspiration to want to blog about autism.
I struggled during the early diagnosis days when battling to explain how Cameron was similar to my brother with autistic traits, who didn’t have a diagnosis.
I wanted to share my experiences for my sister as well as others to have a reference, to be able to relate.
For Christina the professionals were keener to listen to her as soon as she mentioned her nephew was autistic. For her I think it helps that I am a few steps ahead in my journey, for reference.
So as they say “It’s all in the genes”; be proud of your genes but use the information you have and what you know about your loved ones to your advantage when seeking a diagnosis or additional support.