Saturday 26 November 2011

The autistic elephant in the server-room

A bit of a serious blog-entry this time. Normally I blog about language lemmas, IL intricacies, serialization subtleties, and materialisation mechanisms; but occasionally bigger topics present.

This blog entry is probably more for my purposes than yours. But you might like it anyway. If not, just come back next time.

Woah, lots of words; why should I read this?

Because knowledge never hurts. You might start to understand a colleague better; maybe it might help you recognise autistic traits in a family-member; or maybe you'll just think for a second before "tutting" when you see a child apparently misbehaving in the supermarket - perhaps you don't know what is happening quite as much as you think.

Why am I putting this on my geek blog?

Because, while the reasons still aren't exactly clear [edit: alternative], it tends to present more commonly in the children (mainly sons) of people in geeky professions. Indeed, our profession has a pretty high rate of successful autistic or Asperger's members; some very notable, some doing the day job like everyone else.

More specifically, I care because my eldest son is autistic. Now, autism (or more correctly, ASD) is a pretty large spectrum. In the UK, there is a trend not to bother trying to diagnose more specific groupings (like Asperger's) because it doesn't actually help with treatment: everyone with ASD needs to be assessed as an individual to understand their needs.

Evan is at the (perhaps unfairly named) "high functioning" end of the spectrum, which means he is of pretty normal intelligence and largely independent, but experiences the world in a slightly different way.

If you want to very quickly get a feel for stereotypical ASD at the "high" end, then Sheldon Cooper is perhaps the easiest place to look, with two caveats:

- there is no automatic "brilliance"; normal intelligence (albeit it, focused) is more likely
- everybody truly is individual; it helps to remember that generally speaking, generalisations don't help

Also, AFAIK The Big Bang Theory has never explicitly labelled Sheldon with ASD or Asperger's

(boo, someone deleted my Sheldon image... take your pick from here

Typical observations would include (not exhaustive):

- attention / interest can be intensely focused on a narrow topic, to the exclusion of others
- sensory perception (sound, touch, taste, smell, sight, etc) can be extreme (both hyper- and hypo-); for example, simply the washing/size-label on a t-shirt can cause agitation
- cognitive processing can get focused on a particular detail rather than processing the wider context; in programming terms think "depth first" rather than "bredth first"
- language and interpretation can be very literal (for example, "laughing your head off" could be concerning) and repetitive
- routine and predictability are important (in particular, this reduced the stress of processing unfamiliar scenarios), to the point where an individual can seem inflexible and stubborn
- social interaction tends to be limited (people aren't predictable, and often aren't very interesting - even less so if they aren't talking about your preferred topic) and a little awkward (not least, brutal honesty doesn't always go down well - "that lady smells bad" etc)
- there can be a definite need for "quiet time", or just time to unwind in whatever way works. That might be "stimming", or it might be sitting under a table for half an hour
- recollection (in particular visual memory) can be more acute

Of course, at the other end of ASD are far more debilitating issues, which may mean dedicated life-long care, maybe institutionalisation. It is not always gentle. I can't speak of this from experience, so I won't try.

So... What is the point of this blog entry?

It is a serious issue that affects our industry, perhaps more than most. Also, our industry is well suited to ASD. Computers are predictable; IT has a use for massively-focused detail-oriented people (experts perhaps in a very narrow and specialised field), and people who can quickly spot some really minor and subtle differences.

Perhaps more importantly though: it shouldn't be something we don't talk about. ASD tends to be an invisible and private thing (you can see a wheel-chair or hearing-aid; you can't necessarily see that the person you are talking to is actually massively stressed to breaking point because a road was closed and they took a different route to work, and then the 2nd lift on the right - THE LIFT THEY USE - was out of order).

Ultimately, no matter where on the spectrum someone is, we should not feel anything like embarrassment. I'm not embarrassed by my son - he's awesome! It took us as a family a little time to properly understand him and his needs, but I think we have something that works well now. And his current school is really great (mainstream, but really understand ASD; his last two schools..... not so much).

If you have a child with ASD

Moving from denial through to acceptance can take time. There's only so many birthday parties you can take them to where opening and closing a door for an hour is more interesting that the hired entertainer - eventually you need to accept that they are simply different. Not better or worse; just different.

Yes, I know, it can be hard sometimes. You may feel like a chess grand-master constantly thinking 12 steps ahead to avoid some meltdown later in the day. Remembering to give advance notice of change, and implementing damage limitation when something truly unexpected happens. Talking openly about it can be hard (yet is also very liberating). There are often local groups of other parents with similar experiences that you may find helpful (assuming you can arrange cover - regular babysitters may not work out so well).

Laughing helps. Try reading #youmightbeanautismparentif. Or watching Mary and Max

Also, don't buy into any of the snake-oil.

If you have ASD

Then you know ASD better than me. I've seen some folks with ASD get annoyed before because it is always "parents of..." doing the talking. Well, the world is your podium: I'd love to hear your thoughts. The "parents of" also have an awful lot to bring to the table, though.

And for Evan

He's doing great. He likes maths and his handwriting is almost as bad as mine. He can probably name a handful of the children in his class, but I'm sure he could tell me how many lights there are in each room in the school (and how many have broken/missing bulbs). We have good days, and we've had some really horrible days - but as we get better, together, at knowing what each of us needs, we get more of the former and less of the latter.

Final words

Dr. Sheldon Cooper