I don’t want to feel upset by Len[1] but I do.  I am not sure if it can be helped.  Len is a nice man and is also an ally working towards autism acceptance.  He is employed as an autism support worker and facilitated a self-advocacy group for autistic adults. He told me he loved working with this group and felt he really understood them.  “They told me that they were really scared about meeting other people, they felt they were being judged and didn’t know what to say.   I feel like that too about meeting people – I suppose we are all somewhere on the spectrum”   I think in saying this Len felt he was expressing empathy and showing that he understood and identified with an autistic sensibility.  I was aware of this but the remark still upset me, in fact I was so upset that I was unable to discuss the issue  and instead just muttered something  nondescript that probably sounded appreciative to him. 

I know I am not the only autistic who feels frustrated when I hear this things like “I feel like that too”…….”that is normal, we all feel that way”………” everyone has a bit of autism”. I also know they are often said by well-meaning people who want to support us so it might be worth explaining my reaction.

First off I should say that I believe we are all part of the human constellation and autistic traits are human traits, I suspect Len was trying to communicate to me that he shared this belief.  But the bit that he didn’t seem to understand is that his social anxiety is different from autistic social anxiety, for the simple reason that autistics’ social anxiety or even social terror is entirely rational.

Typically the largest part of social communication is non-verbal - autistic people do not understand this communication.  We just do not have the neurological equipment to decode and deal with social situations in a typical way; we fear entering territory that often proves treacherous for us. Comparing ordinary anxiety about social situations to autistic social anxiety is like comparing my concern about swimming across a river (I am a good swimmer)  to that of a poor swimmer or non-swimmer needing to cross the same river.  We  are facing the same situation but our ability to deal with it is vastly different. 

I might be anxious because of the currents and the fact I don’t know this particular river, I might not make it because of conditions beyond my control; but I do have the skills to cross given reasonable conditions and a history of successful river crossings. However, a non-swimmer without outside help is likely to drown regardless of the conditions – they don’t have the equipment for the task.  Their anxiety is of a different order of magnitude to my anxiety, their anxiety is grounded in the likelihood of a bad outcome, whereas my anxiety is priming me to be careful and achieve the best possible outcome. 

So while I appreciate efforts to empathise with the autistic reality they need to be grounded in knowledge of just how differently we might be experiencing the world. Maybe if I had expressed to Len how upset I was with his remark he would have had an experience all too familiar to many autistics – that of trying to interact positively with someone only to find that you have said something that has the opposite effect to what you intended.  Paradoxically in this case Len in trying to get close to one autistic sensibility mirrored Autistic experience demonstrating what my friend and colleague Damian Milton calls the Double Empathy Problem[2].


[1] As ever in this blog anyone referred to by first name only has had name and some details changed

[2] There is an article about this construct (unfortunately behind a paywall) here  http://www.tandfonline.com/doi/abs/10.1080/09687599.2012.710008#.UzkjGbePLIU

I was doing my volunteer spot at the local food co op  the other day and mentioned to a fellow volunteer, a psychology student, that I am an autism trainer.  As this was overheard by surrounding shoppers a lively discussion ensued.  As often happens when autism is mentioned  many people in the vicinity knew someone autistic.  A woman began to tell me about her friends son  “with something like autism  …………….. it’s  called a syndrome,  it’s very mild, ….….something burgers” 

Well yes Asperger’s is a form of autism, I tend not to use the term because according to the official diagnostic criteria all it adds to the information that someone is on the autism spectrum is that they did not have a “significant speech delay”. However many people with an Asperger’s diagnosis are very attached to the term – one reason might be that it is generally believed that people with Asperger’s Syndrome are of average or above average intelligence.

Does this make Asperger’s Syndrome mild autism?   Not really.  Uta Frith wrote that Asperger’s Syndrome might best be regarded not as a  “a very mild form of deficit”  but as “compensatory learning in the presence of a severe deficit”[i].  

The woman in the food co-op was keen to tell more about her friends son, he had been bullied at school, and then at work, he lived alone in a flat because although he would have loved to have got married he had never found a partner.  His parents had to ensure that his flat was kept clean otherwise – well -  there were dirty dishes and clothes everywhere and the bills weren’t paid.  His parents were worried what would happen to him as they and he aged.  This does not sound like a mild condition to me- it sounds like a serious condition.  But perhaps it is a serious condition that could be responsive to understanding and acceptance.  For this to happen we need a cultural change that includes a massive increase in the knowledge about and understanding of autism.  I hope you will help spread this awareness.   One suggestion is printing out taking  the NAS posters from links below and taking them  to your GP’s surgery , another is persuading health and social care workers to participate in autism awareness training.


[i] Frith U. (1991). Asperger and his syndrome. In: Frith U Autism and Asperger Syndrome. Cambridge University Press.

I was at a conference recently when one of the other speakers ( psychologist )  referred to autism as a “Gucci diagnosis” he said that he had become quite protective of the diagnosis as he found inappropriate people wanting it. He felt it needed to be guarded so it kept its meaning for those who really warranted it.

I guess this idea fits with another current orthodoxy which is that to qualify for an autism diagnosis you have to be significantly disabled by the condition.  In other words if you have worked hard and overcome the barriers that autism, or attitudes to autism, place in your path, you are not autistic – however if you experience the same barriers but don’t overcome them you are autistic.  Seems to me that is tantamount to making a diagnosis a prognosis.  Autism is a lifelong condition, so if you have it, it is not going to go away, although if you are lucky you may find ways of mitigating the negative effects on your life – but if you do that it seems some people will dispute the validity of your diagnosis.  As Landon Bryce says in his cartoon “one way to make sure autistic people never succeed is to make failure part of your definition of autism” (https://www.facebook.com/thautcast/posts/118261778354172 )

My own take is that there is significant stigma attached to Autism. I experience this on a daily level when people saying to me  “you don’t look Autistic”  think they are  complimenting me.  However the stigma and misinformation  that suggests anyone can “look autistic” and autistic is a dreadful way to be is being slowly dissolved at the edges.  There is more appearing in the media about the entire autistic spectrum and some celebrities are coming out as autistic and talking about their experiences of the condition Darryl Hannah http://www.huffingtonpost.com/2013/09/27/daryl-hannah-autism-terrified-fame_n_4002697.html and Paddy Consendine  http://www.telegraph.co.uk/culture/8440399/Paddy-Considine-Knowing-I-have-Aspergers-is-a-relief.html  spring to mind in this respect.  So yes things are improving vis-à-vis the cultural baggage associated with an autism diagnosis, but I’m not sure we’ve reached Primark, let alone Gucci.

Sometimes participants in an autism awareness session query the whole concept of autism because they or someone they know exhibits behaviour flagged up as an autistic trait during the training session.

I can find this hard to respond to, because as Lorna Wing said “nature never draws a line without smudging it” .   I tend to use analogies to explore my contention that although the category of autism cannot be set in stone it is still useful.  If someone has felt sad and despondent, or even fleetingly suicidal, it does not necessarily mean either that they have experienced depression or that depression does not exist. If someone has felt attracted to a person of the same sex, it does not necessarily mean that they are gay or that homosexuality does not exist, if someone has failed to hear something it does not mean that they are deaf or that deafness does not exist……………

You get my drift.  Human traits all exist in a complex and constantly changing context.  Just as behaviours that might be considered to denote homosexuality in one culture are usual amongst heterosexuals  in another culture  (when I went on a trip to Florence as an art student we were all surprised by the public affection men showed each other) so behaviours considered “autistic” in one time and place might not be considered “autistic” in another.

However I sometimes feel that individuals at trainings are seeking my assurance that they personally are not autistic.  This is not something that I feel able to offer as it is well known that most adult autistics are currently undiagnosed[1]and so it is not impossible that someone attending one of my sessions and recognising the autistic traits I describe in themselves could be autistic.  Of-course more exploration and research would be required before coming to that conclusion, but if I assured participants that because they are functioning well in life they could not be autistic I would be buying into the myth that autistics can’t be well functioning flourishing individuals.  I would helping to shore up the concept of autism as a negative prognosis rather than a helpful diagnosis.


[1] http://www2.le.ac.uk/offices/press/press-releases/2011/may/2018most-adults-with-autism-go-undiagnosed2019-new-findings

 It now seems to be generally accepted that autistic people have sensory issues.  However while people intuitively seem to grasp the implications and reality of hypo –sensitivities this is often not the case with hyper-sensitivities. 

If someone is deaf or blind (hypo sensitive to sound or visual input) there is not a tendency to accuse them of “not really trying” to hear or see or telling them to “get over themselves”.  However if autistic people are hyper sensitive to these sound or visual signals and ask for changes to be made so that the environment is not causing us so much distress we are all too often regarded as being “selfish”  “fussy” or “difficult”

I’m not quite sure why this is, as there is no difficulty simulating being over sensitive to noise, you would just need to turn the speakers up full blast to feel the pain – the negative impact of too much sound is recognised in regulations, however it seems difficult for most of us to grasp intuitively the degree of difference in baseline tolerance that autism can cause.

In the Summer 2013 edition of the National Autistic Society magazine “Communication” there is an article about Dr Peter Vermeulen and his belief that context blindness is a core attribute of autism.  He gives as an example a mother making pizza in the kitchen with her normal IQ autistic son.  The front door bell rings and the mother asks the son to open the door as her hands are full.  The son opens the back door.

I have a few issues with this example. First if the mother had said “answer the door” instead of “open the door” the request would have contained more information about what was required.  The issue might not be context blindness;  it could be mono-tropism – the ability to only attend to one stream of incoming information at a time, and the attendant difficulty in knowing which bits of sensory information to pay attention to.  Dr Vermeulens solution is the same as mine he just calls this “pushing the context  button” whereas I would say “be clear and concrete” .

However Dr Vermeulen recommends using Social Stories™, which are stories about specific situations which are popular and supposed to teach social skills (although research[i] suggests that this is ineffective). However it is not explained how these stories would address context blindness, in fact the criticism of them is that they do not address the context driven need for flexibility that is at the heart of meaningful social communication.

I am always puzzled why there seems to be this desire to attribute autism to a single cause (although I consider context blindness as a concept to be a symptom and not a cause) – it reminds me of the nature/nurture debate before it was realised that actually it is not nature or nurture but the way the two interact that impacts how an individuals' development unfolds.


[i] A meta-analysis of 62 studies was conducted to determine the efficacy of the intervention. Overall, Social Stories appear to have only a small clinical effect on behaviour.
Reynhout G., Carter M.(2011). Evaluation of the efficacy of Social Stories™ using three single subject metrics. Research in Autism Spectrum Disorders 5(2), pp. 885-900. Read Abstract http://dx.doi.org/10.1016/j.rasd.2010.10.003