Asperger's Syndrome, Diagnosis and the Genetic Link

I was recently asked about my diagnosis and about the whole genetic link in Asperger's Syndrome. I thought I'd already answered this somewhere on the blog but when I didn't find it, I figured that it was something that I should clarify. 

Yes, I do have Asperger's syndrome. I also have a son, currently aged 16 with Asperger's and NVLD and ADHD(I). I have a second son with HFA but since he's very verbal, even more son than his older brother, it's clearly Asperger's now... or would be if the diagnosis of Asperger's still existed. 

You can find out more about my family and I on the "About page" and you can find out more about me specifically via my four part introduction.

See here for Parts One, Two, Three and Four.
Part four in particular talks about diagnosis.

"This Book is About You"

In a nutshell though, my eldest child was diagnosed at 5. His differences were picked up by his teachers who met with us several times and who kept saying to my wife with pointed looks towards me; "the apple doesn't fall far from the tree".  I had no idea what they were talking about.

Being good parents, we read a lot of books of Asperger's but what was interesting is that we read them completely separately. I read during my transport to and from work, while my wife read at home while I was at work. We didn't talk about it until we were mostly through the books.

I couldn't see anything odd or different about my son. He was very normal to me. In fact, he was "more normal" to me than most kids his age.

He was doing everything that I did at his age. The books described me far more than they described my son and for a little while I wondered if somehow my "wrong" parenting was rubbing off on him and changing him.

When we finally got back to talk about our books, my wife's first words were; "this book is about you". 

We got our son diagnosed but kept reading.

It was another six months or so before I decided to talk to the psychologist. By then I had read a few more books and I was pretty sure of my diagnosis. So, apparently was the psychologist. He'd met me a few times before and said that he'd known from the start.

Genetics

The books made the whole inherited part fairly clear but I couldn't see a family connection at first. After all, my father was just my father and I had more in common with my uncle.  My uncle liked similar (techy) things to me but apart from that he simply didn't fit the profile. I later talked to my parents about my grandfather whom I didn't know well enough because he was older and too unwell by the time I knew him. That was when I realised that he fit the profile of Aspergers. I then re-evaluated my father as a "person" rather than as "my dad".  I watched him meeting new people and I watched him in conversations with family and friends. It was there all along, I'd just never noticed it.

When my youngest was born, we fully expected that he had a chance of being on the spectrum and we recognised the signs from an early age even though he was (and at 13, still is) vastly different from my older son. 

There's absolutely no doubt in my mind that there's a genetic link and that it's a strong one. Over the years, I've met quite a few people on the spectrum, particularly during my five year stint as a scout leader. In those years, I got to know the kids very well before getting to know their parents. I would usually know which kids were on the spectrum long before they were diagnosed and I would nearly always see the signs in one, sometimes both, parents.

Sometimes I'd know that a child was on the spectrum and I'd meet their father and think... "no, he's definitely not on the spectrum" .... and then months or years later, I'd meet their mother, and I'd see the signs immediately. 

Co-conditions make Great Disguises

If you have one person with Asperger's or any other autism spectrum disorder in the family, there's a pretty good chance that there are others. The link isn't always 100% direct but it's there, somewhere.

Co-conditions, particularly ones which aren't "fully-fledged" are very good indicators. If a person has fully-fledged OCD for example, they tend to allow it to rule their lives. It becomes extremely difficult for them to leave the room because there are so many leaving rituals which need to be performed, so many doors which have to be closed a certain way, footsteps which have to be repeated to end on an even number and so on.

A person with an OCD co-condition that isn't fully fledged, can have some disorder in their lives but they will still have rituals.

They may still require specific pockets of order, for example, they may sort their shelves very specifically or alphabetise their collections but OCD doesn't rule their lives. It doesn't prevent them from living their lives normally.

Asperger's rarely travels alone. There are nearly always co-conditions such as ADHD, Dyslexia, OCD and Bi Polar disorder and these are usually what people notice first. It's these co-conditions that make Asperger's particularly difficult to diagnose. 

At the same time, if you look for the co-conditions, you'll quite often find the "aspie".