This is a brief outline of Asperger’s Syndrome* which I emailed to family members to provide quick background information when I told them that I have Asperger’s Syndrome.
The summary is designed to be an island of background understanding to stand in the vast sea of often conflicting information that can be found on the Internet; oversimplified stereotypes, outmoded research, scare mongering, popular hype.
The summary is translated from Danish and mildly edited for this use. Some of the links are to Danish articles.
Before complaining that this post is superficial and poorly referenced, please scroll down and read the disclaimer in the end of the post.
About Aspergers Syndrome*
The following is the essence of what I have learned about Aspergers syndrome during the last few years.
Asperger’s Syndrome* is a neuro-biological developmental disorder in the high functioning end of the autism spectrum. It represents a mix of traits and tendencies which can be present in different combinations and degrees of severity, from subtle to obvious.
The core problems in autism, including asperger’s, is thought to be:
Poor Theory of Mind. Poor ability to imagine and understand other’s independent perspectives, and to perceive and comprehend personalities different from one’s own.
Weak Central Coherence. Tendency to get lost in details and overlook the bigger picture. [See my personal examples in “Important types of coherence“]
Executive Dysfunction. Executive Function is the mind’s inner “secretary”, which manages the practical side of life. Executive Dysfunction means poor ability to plan, start, stop, execute, manage and oversee over the multitude of tasks a normal life requires plus direct one’s life overall (e.g. have a career).
Typical tendencies seen in person’s with Asperger’s Syndrome (examples)
Social development delays or lack of social development is usually considered the primary handicap, because it causes pervasive difficulties in social functioning and the ability to develop social connections in all aspects of life, such as: school, work, friendships et.c.
Senses, emotions, health and motor skills
Focus and interests
Typical implications and co-morbidities
(especially for undiagnosed autism in adolescents and adults)
The issues mentioned above are some typical tendencies, not an exhaustive description. The general rule of thumb is that “if you know one person with autism, then you know one person with autism” – the autism spectrum covers a wide variety of personality types.
Intelligent adults with Asperger’s often keep evolving throughout their life, and gradually replace the need for social intuition with rule-based social systems, so the social difficulties gradually become less visible.
Rule-based social systems can work well from a superficial point of view, but are slow and ineffective as social methodologies relative to social intuition. Social intuition is hyper-complex and fast and can process many layers of communication and social dynamics simultaneously – often without people even needing to pay much conscious attention to the communication processes (apparently). In contrast, having to get by primarily by using one’s intelligence and systems skills to figure out social motives and communication, requires a lot of energy – and doesn’t necessarily lead to good results.
Therefore person with Asperger’s – even those who appear to have relatively good social skills – uses vast amounts of energy on being social and rapidly wears down socially – and typically needs social interactions to be short and time limited, with plenty of alone-time between and afterwards to focus on own interests.
Girls with Aspergers
Asperger’s often looks different in girls compared to boys, even though the core condition is the same. For example do girls often appear more social, albeit somewhat “different” and special. Their interests are often typical for girls – like animals, horses and fiction stories, whereas the boys often have peculiar interests which other boys don’t have.
However, the girls’ interests are typically more intense than normal. For example, it is common for girls to have pets such as a couple of guinea pigs – but perhaps not 17 guinea pigs and hay everywhere, guinea pig photos on the wall and drawing guinea pigs all the time, building things and making training systems for guinea pigs, writing long elaborate fiction stories about guinea pigs and guinea pig handbook-ish things et.c.**
Tony Attwood is one of the world’s leading experts in Asperger’s Syndrome. In his book “The Complete Guide to Asperger’s Syndrome”, he describes 4 main strategies which girls with Aspergers often use to cope with or camouflage autism problems while growing up (based on my memory***):
1. Depression and withdrawal. The girl is aware of her social deficits but has no effective solutions or explanations… Hopelessness, pessimism.
2. Arrogance. Feeling special and better than others.
3. Imitation. The girl copy-cats selected persons’ behaviours (often “the entire package” including intonation, manners, moves, choice of words and dialect), and that way appears socially competent to people who don’t know the “originals”, and who therefore don’t realise that it is copy-cat behaviour.
4. Imagination. The girl finds refugee in fantasy worlds, which offer alternatives to the social world – be it through books, movies, day dreaming, or creativity. Often a fairly good constructive strategy, which can lead to development of competencies that are useful in the real world****.
Socially, the girls typically fall through catastrophically from the teenage years, when play and interests stop being the basis of friendships and social activities. The social norms shift towards an adult-like social conversation culture and centre around chatting, going to parties, mingling in groups and making new friends, and on developing an adult social identity through social intrigues, shifting groups and so on.
It isn’t because the girl’s social skills suddenly shrink (although it may look that way), but because her skills are no longer sufficient. The “fall” comes when the social demands exceed the capacity, and there are no practical strategies that can help overcome the insufficiencies.
Common implications: school refusal, isolation, social anxiety, depressions, suicide, anorexia, stagnation, and a variety of mental disorders.
Rudy Simone has written the book “Aspergirls” about the topic, where she interviewed about 50 women with autism about an arrays of life aspects such as growing up, friends, keeping order, education, work, and relationships. She has also created a list of “typical female aspergers traits” based on her research for the book: Typical female aspergers traits.
A similar type of book has recently come out in Denmark, I haven’t read it but more information can be found here: Kvinder og piger med asperger. (in Danish)
Maja Toudal’s YouTube Videochannel about being a girl/woman with Asperger’s provides good insights: The Anmish.
Autistic girls & genetics
More boys/men than girls/women are diagnosed with autism, especially in the high functioning end of the spectrum. There are several theories speculating as to why that may be. The common assumption is that there is a difference in the actual frequency – that more boys than girls are born with an autism spectrum disorder – plus a gender bias in the diagnostic frequency, because the diagnostic criteria are based on the typical male presentation of Aspergers – to some extend a self-reenforcing loop. Moreover, autistic girls symptoms often appear “milder” (but the difficulties are not mild, because the social expectations to girls are often higher).
One of the main theories (aside from girls “flying under the radar” and not getting diagnosed) is that girls have better genetic protection against autism. Some theories suggest that autism may be related to mutations on the X-chromosome, and then boys are more vulnerable because they only have one X.
Some research seems to indicate that families with autistic girls have a higher probability of having other children with autism diagnosis as well as other family members with autistic traits too, compared to families where only boys have autism. The implication appears to be that girls “require” a higher genetic load to develop autism, such as for example Asperger’s.
Online screening tests
Here are links to some of the most common online self-screening tests for Asperger’s. The tests are of course not diagnoses, but just for-fun screening tools. Some use them to make a decisions whether they should consider a professional evaluation.
The Aspie-Quiz programmer is a non-professional with a range of weird pseudoscientific theories about various things, but his test is good. Most of the questions are very relevant, the results tend to agree with results of other tests, the questions are asked better than in most of the other tests (they are less ambiguous), it is thorough (200 questions), and it is the funniest of all the tests… because one gets a fun graph out of it.
Facts sheets about Aspergers and similar by an organisation called Synaps:
and then there is:
Here is good YouTube video where Attwood explains ASC’s (Autism Spectrum Condition) personality types and needs:
Finally, I’ll give the word to Laura Nagel, in this trailer for the documentary Vectors of Autism*********:
The video is produced by Wild Asperagus Productions, and can be purchased via Laura Nagel’s website. Based on the trailer and previews, it gives a good impression of the subtle yet (in Laura’s case) highly visible autistic differences, and the problem with social incompatibility associated with Aspergers.
For further learning, I recommend to dive into the virtual gold mine of subjective self-insights authored by autistic writers, speakers and artists. Here are some links to start with.***********
What this post is not purporting to be:
It is not a complete summary of everything I have read about Aspergers and autism, but a selection and somewhat simplification of some of the key points, summarised to help my family understand what Aspergers is in an easy accessible way.
It is not a one-size-fit-all template that describes everybody with Asperger’s Syndrome. It is likely to lean towards the subset I fall into more than some other profiles, because I wrote it and have an interest in explaining myself. However, it also includes many general and stereotypical traits which don’t all describe me.
It is also not designed to provide an overview of all major theories out there. And there is no reference list. Most of it is “from the top of my head” understanding – just as if I had explained the same things face to face, just with the extra time and serenity to think and edit that writing gives. I got positive feedback from that use – that it was a neat and helpful overview that gave a very accessible idea of what Aspergers/autism is about. So I decided to share it here on the Internet where perhaps it can be helpful to more people.
I am open for constructive feedback.
* Also called Austism Spectrum Disorder (ASD) Level 1, or Autism Spectrum Condition (ASC), in Australia and the US.
** A reference to my guinea pig era, which my family surely remembers
*** I offer no guarantees for factual accuracy. It may in fact be just “inspired” by the 4 strategies described by Tony Attwood. In any case I won’t bother to change it, because this is what I sent to my family
**** I am not sure if Tony Attwood really said that (the last sentence). I wrote it primarily because that’s my strategy, and I knew it would be obvious to my family – and it may just be an imagined implication of the description of that strategy.
***** Original link to a Danish translation, but I found this one on the Internet. The website has a Yellow WOT rating, but I can’t see anything wrong with it, and it doesn’t have any comments to explain why on WOT – so I can’t see anything else than it is OK.
****** Not included in original summary
******* It was a link to an article presenting one of their workshops with a neat summary of issues often faced by young girls with autism (or something). The article is gone now, but it is still a good website.
******** Was not in the original summary, but I thought I would link to them because it is a nice, neat website, it is in Sydney, and he is good.
********* The video with Laura Nagel was not originally included in the original summary. Also, I haven’t seen the actual movie, only the trailer and the previews.
********** Not included in the original summary