I’ve recently been diagnosed with Asperger Syndrome (AS) [1]. Among other things this means that I am genetically predisposed to have an interest in solving technical problems and give lectures about how I solved them, but that I tend not to be a “people-person”.
AS is generally regarded as an Autism Spectrum Disorder (ASD), but there is a lot of debate among the experts about the exact relationship. Some people (such as the psychologist who assessed me) believe that AS is a synonym for High Functioning Autism (HFA), however one theory I’ve heard is that HFA people are more sensory oriented and Aspies differ by being information oriented – in that case I would not be regarded as HFA. I’m not bothered by this issue, I’m sure that in a few years time the experts will have some consistent definitions for such things that most people can agree on.
There is no Boolean assessment for AS, the assessment is based on a sliding scale of number of criteria. People who are almost Aspies but don’t quite pass the test (or more commonly don’t get assessed because they don’t think they would pass) are sometimes referred to as Asperger Cousins (AC), this is a slang term that is not formally recognised but is often used in online discussions. I’m sure that a significant portion of the readers of my blog would regard themselves as being at least ACs if they investigated the issue. The test at Glenn Rowe’s web site [2] can give you an idea of how you rate by some criteria – but note that this is not at all conclusive and it’s based on the theories of Professor Simon Baron-Cohen [3], not all of which have general agreement. Leif Ekblad is running a project to analyse long-term changes to the Aspie score of adults [4]. The main quiz for that project seems quite popular for self-diagnosis, but again it’s not conclusive.
I think that diagnosing oneself for an ASD is not nearly as crazy as most things which might fall in the category of being one’s own psychologist, but I still strongly recommend getting a formal assessment if you believe that you are an Aspie. In Australia it costs about $600 and there’s a waiting list of about 3 months. Chaotic Idealism has an insightful post about the pros and cons of self-diagnosis [5], if you suspect that you may be an Aspie then I recommend that you read it before doing the tests.
Hi Russell,
congratulation on your new found neurodiversity. Some folks suggest that HFA folks had a speech delay where as Aspies did not. But the issues between these two seems to lessen as folks age, so that by the 20s or 30s, you can not differentiate or there are not sufficient criteria or tests. You might want to join GRASP online or in-person. Most folks with enough functional impairment get an assessment for an ASD. If you got it for that reason, then GRASP or similar might be a place to join, but if not, then it may not be as useful. Anyway, hope it provides some useful insight to your personhood.
-Kev
http://www.grasp.org/
Kevin, thanks for the suggestion, the URL for GRASP is above, strangely it doesn’t seem to be on Wikipedia yet…
I don’t believe that I had any speech delay. When I was about 6 a family friend who was a successful political activist suggested that I should consider a career in politics. I am sure that if my verbal skills were below average then such a suggestion would not have been made.
From the age of about 21 I have received many complaints about my pronunciation and the general clarity of my speech. I guess that at age 6 no-one expects you to speak clearly.
(background – see http://advogato.org/person/lkcl/diary/634.html )
congratulations, russell: you’re now in the “box” – the target of sympathy, misunderstanding etc. and believed to be “ill”, like there’s a “cure”.
research into autism, AS etc. gets plenty of funding when grant proposals come up that propose to research a “cure” for autism, but the money clams up on research proposals to simply find out more _about_ autism, and/or how to actually make _use_ of the skills and incredible abilities such people possess.
there was an article somewhere – i’ve heard of at least two companies, one that employs almost exclusively autistic and AS people, and the other is a contracting company that trains AUT and AS people, for six months, to interact with “normalies”, and then contracts them out as IT specialists (for above-average amounts of money). the typical AUT or AS person’s level of attention to detail and above-average memory skills make them absolutely invaluable in situations where most people simply can’t cope with the chaotic networking / cabling / whatever.
so… yah. congratulations. you now have a better handle than most on how your healthy but otherwise slightly-oddly-wired tiny brain works. question. now what? :) second corollary question, slightly tongue-in-cheek but still worthwhile asking: _so_ what? :)
luke: I prefer not to use words such as “normalies”. The term neuro-typical (NT) is commonly used for people who aren’t on the Autism spectrum and who don’t have other neuro-differences.
As for companies specialising in hiring ASD people, it seems that the engineering groups of most computer companies do that to some extent.
I have cerebral palsy and have been assessed as having “non specific learning difficulties” – I come out as outstandingly Aspergers/ASD on both the tests :) Seems like both you and I have self selected into being computer types and Debian developers. [I cite you as one of the three or four people in the world who actually understand SELinux – the others being Dan Walsh, somebody at NSA and Manoj :) ]
“luke: I prefer not to use words such as “normaliesâ€.”
ah, sorry – i was rhyming with “aspie”. i’ll try to not be a pigeon-holer, i promise.
“I cite you as one of the three or four people in the world who actually understand SELinux”
hey! i grok SELinux too, andy! :)
but – russell, seriously: now that you “know”, what’s next? i’m genuinely curious. in what ways will you be looking to take advantage of your now-identified-brain-wiring? will you be exploring ways to mitigate the “deficiencies”? will you now degenerate into depression and self-flagellative soul-searching? or, will you carry on as-is, making no more or no less effort other than that caused indirectly by your new-found self-awareness?
i wasn’t being flippant when i said “now what? / so what?” – given that this is all a matter of public debate, here on the in’ur’ne’, i’m interested to hear your thoughts.
Russell, if you’re interested in understanding “both sides of the coin” and learning why diagnosis can be counter-productive, please read the section entitled “Avoid diagnosis”, written by one of my favourite authors, Irvin Yalom (Emeritus Professor of Psychiatry at Stanford University) in his book “The Gift of Therapy”. The section is available at http://www.psychotherapy.net/article/The_Gift_of_Therapy
there are confused, well meaning and monied groups (eg. autism speaks) who seek to ‘cure autism’, blame vaccines, try to make ASD folks more NT-like to ‘pass’, etc. But this knowledge that (self-)diagnosis offers is not about becoming a victim (as was mentioned in the blog post Russell mentioned that talked about the possible negatives of self-diagnoses), blaming or cures, it is about being able to move forward and get tools and strategies to survive in the NT world. As an example, some aspies have sensory issues like hearing sound too loudly, so they can ask to work in a quite room. There is no cure for the sensory issue but dealing with it through accommodation helps your life. Aspies seems to have a certain verbal fluency if that was why you were told to go into politics. But because of other uneven language, learning and communication skills, that may not be a fit for many aspies.(body language reading issues, talking too softly/loudly, pragmatic speech issues, processing issues, etc.).
For learning about AS, I highly recommend Tony Attwood’s book “The Complete Guide To Asperger’s Syndrome”. In my experience, far too many people, even parents of Aspie children, think AS is only about delays/deficits in social skills and human interaction. That does form a part of the diagnostic criteria but there are other areas to consider as well such as executive function, sensory issues etc. The book gives good insight in to how Aspie and NTs tick differently.
Russell: “however one theory I’ve heard is that HFA people are more sensory oriented and Aspies differ by being information oriented”
Yes, I have heard this too directly from people that work with children with autism and AS. When I ask their opinion on AS and HFA being the same, they never answer with a definite yes because as they say, in their experience the children with autism are different to the children with AS. They definitely agree that AS children are more sensory avoiding where kids with autism tend to be more sensory seeking (obviously not in all cases but enough to be significant). Yes there are many similarities between AS and HFA however the strategies used in educational/social skills sessions for the children with autism don’t always work with the AS children. Then you have gifted AS children who, in my opinion and the expert opinion of the special ed teachers I know (and they really know their stuff, more so than any psychologist I’ve spoken to) often require a different approach. I absolutely believe this to be true as I’ve experienced it firsthand.
I also have firsthand experience of children with AS being treated very badly by their schools and teachers, despite being aware that the child did have additional/special needs.
Building bridges of inclusion means all sides contribute and educate eachother. From what I see, there is no building from general society’s side. Just a whole lot of meaningless talk. And it’s not just about understanding AS or kids with autism, but adults too.
Kevin: “Some folks suggest that HFA folks had a speech delay where as Aspies did not.”
This does seem to be the general assumption, however I have spoken to parents fo Aspie children who had early speech delays who are really annoyed that this assumption is out there.
Hi Russell,
Congrats in ‘coming-out’. It helps break down the walls and stigmas associated with many so called personality and mental illnesses/diseases.
My own cousin suffers from Asperger’s so I’m quite familiar with it.
He’s found that psychologist and behavioural therapists have helped to elevate many of his symptoms. Having said that he’s a healthy, fully-functioning member of society. More often it’s there to assist him through to understand his own mental frustration.
It’s no noose around your neck at all; and in fact it appears to be liberating to finally have a ‘label’ for many. Understanding comes through the discovery and you’ll find that now you have somewhere to focus your own research and efforts.
For your loved ones it adds additional understanding to behaviour of yours that may be puzzling to them. (Puzzling — not disturbing or fearful — just puzzling!)
I’m not saying you bite chickens heads off.. .just ‘wired’ a little differently, so your thought process may not marry exactly to the ‘norm’. (whatever the hell that is).
Kudos for being brave enough to announce it to the world, many wouldn’t be. More power to ya!
Cheers,
Matt.
Andy: I believe that the incidence of ASD within the Debian community is significantly greater than the population average. The Debian social and technical in many ways does seem to select for AS traits – more so than the rest of the IT industry.
I’ll discuss your comment about SE Linux in another blog post.
Luke: I’ll discuss some other things in other blog posts. Trying to cover too much in one post (or the comments section) will only cause confusion.
Jaime: Interesting link. In terms of the self-fulfilling prophecy, I think that the Chaotic Idealism post addressed that in terms of the people who use AS as an excuse. Also I think it’s worth noting that a large part of the down-side of ASD is the difficulty in relating to other people, so getting diagnosed and making friends on the spectrum can be a significant benefit which can outweigh some potential down-sides to a diagnosis.
Finally someone who is diagnosed with AS and knows the ways that Aspies tend to fail to get along with other people can take corrective action.
Agree with you Russell RE: the ‘relating to others’.
I also do think there probably is more AS people in highly technical fields (engineering, advanced maths/physics, and computing) than the general population.
I don’t have stats to back it up, but traditionally AS people are above average intelligence, and are brilliant problem solvers.
Matt: I hope that this post will make other people feel more comfortable in seeking a diagnosis (and treatment if appropriate/necessary). I also hope that others will feel brave enough to make similar announcements now that I’ve done so.
http://www.autism-society.org/site/PageServer?pagename=life_aspergers
From the above URL ‘by definition a person with Asperger’s Disorder cannot possess a “clinically significant” cognitive delay and most possess average to above average intelligence’.
So when you have a group of people who must all have average or better intelligence then either every single member of the group has an IQ of 100, or the group will be more intelligent than the general population.
As for problem solving, that is a matter of IQ and perseverance. Both of which are required for an AS diagnosis.
Technically, a clinically significant cognitive delay is considered an IQ of 79 or lower (that would be the borderline category), plus delay in self-help skills. (Insert “IQ is crap” argument here.) So, if you happened to get the right group of Aspies, their average could easily be below 100. It won’t be far below, though; odds are that when you take the bottom 3% of measurements out of a group, like you do when you (somewhat artificially) mandate that Asperger’s can’t be cognitively delayed, you should get an average IQ that’s a couple of points higher than the general population–102, 103 maybe.
In any event, what makes Asperger’s brains so interesting isn’t the requirement that we’ve got to have average-range-or-better IQs; it’s that we specialize so easily and so well. Our brains are basically min-maxed, focused on details and optimized for one thing and not the other (obviously the “not the other” tends to be socialization, language, sometimes executive function).
What reveals more than the actual IQ is looking at the IQ subtests, which will often be all over the scale, revealing a really scattered skill pattern. What you have with autism, often, is somebody who can do some things unexpectedly well, mixed in with a bunch of equally unexpected weaknesses, sometimes in oddly related skills (for example, I kick butt at calculus but didn’t learn my times tables ’til high school). Every one is different; every one learns differently. Which makes me really annoyed that the US education system (and Australia’s, too, likely) expects kids to be pretty much the same, and make do with a cookie cutter education. You’d think they’d figure out such basic facts about us after so much research. Oh, I forgot–they’re obsessed with staring at our DNA and blood samples and behavior inventories instead of actually asking us how we learn best. Yeah, that probably explains it.
CI: I didn’t memorise the multiplication tables until I was about 25. I remember my grade 6 teacher quizzing me on them, he was suspicious because I got the answers more slowly than other students even though I was by all other measures better at maths than anyone else in the school. The teacher was too stupid to test me on multiplication of numbers greater than 12, otherwise he would have discovered that I just worked everything out – I could multiple any pair of two-digit numbers in the same amount of time.
I ended up doing reasonably well in the Australian Mathematical Olympiad training program, if I hadn’t been interested in computers I might have ended up representing Australia in the IMO.
Matt: “My own cousin suffers from Asperger’s so I’m quite familiar with it.”
Matt, please change your thinking. People do NOT ‘suffer’ from Asperger’s.
Congratulations! Having a term, even if it’s somewhat waffling, can be helpful. I have ADHD, and it’s caused some problems, but overall I’m rather proud. The benefits of vastly increased attention span (sometimes) and intelligence and creativity I call my “super powers.” Autism I’d imagine is similar. I’ve followed the work of Temple Grandin — she’s an inspiration in being able to achieve what no one else has, and at the same time being able to describe her thought patterns to help others.
I’ve been suspected of both Aspieness & HFAness.
I’m a very strong visual learner (visuo-spatial/visuo-temporal) which of course makes IT a paradise as far as I’m concerned (think of photographic memory, but instead of an image for life, you get connections, patterns, the network).
Visual stuff is very fast, not much detail (the -spatial aspect here adds _heaps_ of detail; I essentially collect knowledge, the deputy postmaster (Rae Little) I worked for (as a postie) for a year would refer to me as “a mine of useless information”), so it is easy to mistake for autism, however, I know a full-on autistic boy (in Tambellup, hello from Albany) & this is completely different.
In conversation with my girl in Wisconsin (born one real day after me, my youngest is AnneRose, hers is Amanda Rose, same age as my eldest etc) who is a kinesthetic learner, it’s become kind of obvious that IQ tests span a very narrow field, that there are many _kinds_ of intelligence not measurable by such tests.
In this case, drop a tech problem before us, I’ll come up with a good answer in seconds to minutes, she’ll refuse to even try; drop a social problem, I’ll spend hours or day & come up with a wrong answer, she’ll intuit her way instantly to a good answer & begin using it.
My perspective on @EffC’s remark: “suffering from” neurological variety (as with visuo-spatial stuff) can actually involve possessing an immense advantage.
I did this quiz, which said “nope.” Well… I strongly suspect that easier ways exist to learn about it than living it.
http://www.rdos.net/eng/Aspie-quiz.php
I have decided not to allow negative comments about random people to remain on my blog. If you want to criticise someone for something bad that they did to you then your own blog MIGHT be an appropriate place, but my blog isn’t.