Saturday, April 8, 2017

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 OneTwoThree 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.


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". 


Anonymous said...

"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."

No doubt your parenting was rubbing off on him and changing him, no matter if it was "wrong" or "right"! :D

That's how raising children works. :D Children pay lots of attention to other people in their lives, and learn many behaviors even outside formal lessons.

For one example, my parents speak English and I speak English too. Does this point to a genetic link for English-speaking? No, it points to me having learned English from my parents and the English-speaking majority around us. ;)

To measure *genetic* links, it would make sense to also see children who were born to Aspies, then placed for adoption/foster care/orphanages, then raised by non-Aspies, and see how Aspie *those* children are.

Anonymous said...

Did you see ??

John Hobson said...

I am an Aspie, as are my two brothers. My youngest son is one, as is my twin brother's daughter. I'm quite sure my father was one, and I would not be surprised if his father was one as well. It certainly does run in my family.

Chase said...

NOBODY "tends to allow" OCD to rule their lives.

You want tolerance for your Aspergers while you have total intolerance for OCD.

Taking your blog off my reading list.

Gavin Bollard said...


I have OCD with Asperger's and I have friends with more severe versions of OCD. I do have a lot of tolerance for OCD but I find it irritating in both myself and my friends when we're trying to get somewhere in a hurry.

OCD doesn't just appear out of nowhere. It grows. It starts off lightly and steadily gets worse until one day you realise that you've already checked that the tap is turned off four times in as many minutes.

The best defence against OCD is to continually fight against it, especially in the early stages. If you don't fight it and you keep going with it, it will get worse. In that sense, by enabling it, you give it more power. Hence you allow it to rule your life.

I'm sorry that you feel I don't have tolerance for people with OCD. Perhaps I used the wrong words.

Anonymous said...

Hello! I'm a 14 year old girl and I've been doing research, and I think I might have Asperger's, but I'm not sure. I want to go to a doctor or psychologist or something, but I don't know how to say to my parents that I think I have Asperger's.
I think I also had some co-conditions, but I have never ever been to a doctor about my mental health, so again I just don't know. I think I have OCD, I used to have a very long, specific ritual before going to bed. I've kind of forced myself to make it shorter though.

When I was between the ages of 3-6, my primary school teacher thought that there was something different about me, apparently I wouldn't listen, wouldn't learn, and I only had one friend (my cousin) and I would barely speak to anyone else. My parents later made me move to a different primary school, and they taught me separatly in a tiny group, and again I only had one friend.

I'm in secondary school now, and I'm one of the smartest people in my year (:. I have 3 best friends, and about 4 other good friends. However I am extremely awkward and shy, and I cannot understand how other people think. I also have a very intense interest in astrology, and my uncle is Autistic.

Sorry my comment is so long. Can I hear your opinion please?

Gavin Bollard said...

Hi Anonymous,

From your description, there's a reasonably high chance that you're on the spectrum but of course you'd need to get a professional opinion on that. The problem of course is that very few doctors are able to diagnose females.

It's unlikely that your parents will react terribly well to a suggestion from you that you may be on the spectrum. Parents generally don't take that news well unless they're the ones seeking the information -- and even then, it's not always well received.

You should still broach the subject but just be prepared for denial.

It's also important to work out exactly why you want a diagnosis. Clearly it's not for academic support. You might find that simply working on your weaker areas such as social skills might make more difference than getting diangosed.

If you do seek a doctor, make sure that they've diagnosed women on the spectrum.