I was talking to an occupational therapist about our respective work.  She asked me how I got into autism training and I explained that I became interested in autism and indeed passionate about spreading information about autism  due to discovering I was autistic five years ago. Her head jerked up, she looked straight at me and asked, well almost snapped, “How do you know you are autistic?  Who diagnosed you?”   I got the impression that if I was not able to answer these questions to her satisfaction, my autism would be considered invalid.  In that moment I was glad that I had an official diagnosis, so I could be believed and also bothered that it was needed for me to be believed.

The question that I asked myself is who should be believed about autism – people identifying as autistic or the disparate professionals empowered by the establishment to deliver diagnosis (which even their own peers or other groups of professionals often dispute)?

While it seems that there are people who are clearly autistic and others who are clearly not, there will always be some whose neurology is more difficult to call.  This does not negate the concept of autism, or the fact that autism can be an important part of a person’s identity. I would however argue that the definition of autism is cultural rather than scientific.
 
The fact that there is bi-sexuality and that some people are initially attracted to the members of one sex but then spend the lives with someone of the other sex does not invalidate the gay movement or the fact that homosexuality is a condition.  Homosexuality was removed from the DSM (the US psychiatric bible) as a result of pressure from the gay movement, society not the condition itself changed.   

In the brilliantly engaging book about maths for non-mathematicians “How not to be wrong - the Hidden Maths of Everyday Life” Jordan Ellenberg mentions how useful it was to think about how things should be defined rather than what they were.   If we look at autism from this point of view the issue is not what specific neurological differences underpin autism (nobody claims to have discovered this yet anyway) but who should define autism.  Should it be people who have studied psychology or medicine and looked at autism through that lens  or should it be people whose life experience resonates with the  current  view of autism and the autistic people they connect with? 

I find the insistence on the need for an “objective scientific” diagnosis when we have yet to identify biological markers somewhat bizarre (maybe it is my autistic literalism that says if you are saying it is more reliable and scientific, you need to evidence to support this).  It looks to me like a power grab by a group of people who have made careers in a field they see shifting away from their control.

Uta Frith, for example, previously suggested that Asperger’s Syndrome might better be regarded, not as “a very mild form of deficit” but as “compensatory learning in the presence of a severe deficit”.  This statement appears to acknowledge that it is not possible to calibrate the level of difference or difficulty experienced by an individual from the outside.  However last year she claimed in a radio debate  “Rethinking what is normal”  that many people are inappropriately claiming they “have autism” when actually they ‘just’ have social difficulties.  I fail to see how Uta Frith can legitiately claim for herself and other similar professionals the ability to know what is inside another person.  In the October 2014 issue of the Psychologist she says  “If the voices of people with autism are also heard they will give an important counterbalance to researchers’ and professionals’ pronouncements”   but apparently only if the professionals get to validate which voices count as truly autistic.

My belief is that if we start to think of autism as a way of describing a natural part of the human neuro-diverse constellation rather than a definition of a medical  disorder that needs to be diagnosed by a professional, we’ll be moving forwards.

There is an ongoing controversy about whether autism is a difference or disability, an ordinary condition or an extraordinary one.  This debate sometimes seems to cause downright hostility between different camps.  Why, you might wonder, does this question matter?  It matters because our assumptions and thoughts about autism affect how we treat autistic people and how we might respond to the suggestion that we, or a family member or friend, is autistic (and yes, this can happen to anyone!)

Unsurprisingly, this issue is especially hotly contested amongst autistic people, their families and autism professionals and researchers.  Assuming that difference and disability are irreconcilable ways of regarding autism strikes me as a false dichotomy, rather like the nature/nurture debate, in the last century.  That seems to have been resolved by the realisation that nature and nurture interact in complex ways to form an individual character.  I would contend that the same is true for difference and disability in relation to autism.

One reason why autism is so contested is that it is so difficult to define.  We know that most autistic adults are undiagnosed and diagnosis is made subjectively by behaviour rather than by indisputable biological features.  The invisibility and variability of autism allow extreme stereotypes and dubious statistics to flourish.  Indeed it can be difficult to be sure what we are talking about when we discuss autism. However the existence of autism as a unique condition, despite its varied expressions, has been recognised at an official level with the passing of the 2009 Autism Act which also recognises that appropriate support and accommodation can help autistic people succeed. 

To enable the accommodations to be made for it,  autism has to be recognised, and there’s the rub – autism is a highly stigmatised condition that presents challenges, so people would rather not have it.  Also many people working in health, social services or education have had minimal or no autism training and so are unable to identify autism. Even if they can, they are often reluctant to label their patients or students with a condition frequently seen as entirely negative.  Parents can resist the idea that their children are autistic and adults seeking help can be shocked to hear the suggestion that they have a lifelong neurological difference rather than a temporary difficulty.

It is frequently stated that only 15% of adult autistics are in full time employment; I think this figure is misleading  because many working autistics, often found in high-level and well paid jobs, are undiagnosed. Or they might have been refused a diagnosis by a professional who, like Baron Cohen, would “withhold the diagnosis” If someone with the traits of autism appeared to be managing their life.  An article in the Guardian last year began with a photo with the caption “In the UK, 77% of those with autism are still, as adults, relying on their parents for support.”  Clearly this sort of (mis) information would be frightening to any parent whose child just received an autism diagnosis.  

I believe this fear around identifying or diagnosing autism does real damage by preventing the personal growth and understanding that could be enabled by appropriate diagnosis.  As a parent says of her son’s diagnosis in Andrew Solomon’s book “Far from the Tree”  “We could make sense of things that had previously been inexplicable to us; we felt validated…..A Cray supercomputer is used for really complex intense computing…It runs so hot it has to be kept in a liquid cooling bath.  It requires a very specific kind of TLC.  And is the Cray defective because it requires this kind of nurturing environment for its functioning? No! It kicks ass! That’s what my kid is like.  He needs support, needs attention, and is amazing”

Some people seem to fear that if we accept that autism is a common condition and that most autistics are fairly ordinary, this would detract from acknowledging that autism is also a serious condition  – a  major neurological difference that can cause severe difficulties that are not always obvious to observers.  I think autism is best viewed as a difference that is also a potential disability.  I think we need to recognise and celebrate the diversity within the human race and within autism.

The existence of successful high profile people like Stephen Fry admitting they have bipolar disorder   has not subtracted from the recognition the bipolar disorder is a serious condition needing treatment, but it has offered hope and an alternative outlook to those affected by the condition. Importantly it also enables people to “come out” and find community with others in a similar situation. It would be great if more autistic people “came out” although Wikipedia already presents an interesting list of potential autistic roles models.

More awareness of positive role models would help normalise autism and make it easier for people to admit to having the condition. Accepting it as a difference that can be disabling would encourage people to be open to the understanding offered by the diagnosis and help them to get any support they might need to live fulfilling lives and be in a position to contribute fully to society. 

We need a culture change about autism similar to what has evolved in relation to homosexuality;  whereas before 1967 homosexuality was illegal, and even for decades after that there were no out gay MPs, now there are several and it is illegal to discriminate on the basis of sexuality.  This culture change is a virtuous circle we can all contribute to.

If you give someone glasses and they can see better, do you take away the glasses when the person can see better?*   Very few people would answer “Yes” to this, yet the equivalent to this happens to autistic children and adults.  Children given support at school whose behaviour and achievement starts to improve can find that the support is removed because now they are doing well and not deemed to need it.

I recently got an email from Ian, a great support worker who had persuaded his client, Gilbert, to come and see me for autism consultations after hearing me speak.  He wrote: “I have gone a couple of times with Gilbert to the weekly folk club in the town.  Gilbert sings and plays guitar and he has said he really enjoyed it and liked the atmosphere and was able to sing at the open mike.  He said she would go on his own but he hasn’t been since; something is holding him back - Gilbert says it himself.  Are you able to explore with him if there is anything that he could do to help him get out of his door and go. ”

I find this an interesting question because actually the answer is right there in the question; what helped Gilbert get out the door and go was having someone go with him.  
My take on this is that Gilbert avoids social situations because he has a disability (autism) that incapacitates him in such situations.  Given that Gilbert is autistic, and autism has at its core an information processing difference that results in social situations being particularly treacherous, it’s perfectly understandable that he would avoid them.  It seems to me encouraging that having Ian accompany him provides enough support to enable Gilbert to enjoy an event that was previously inaccessible.  This looks to me to be a good solution to the problem of Gilbert being prevented by his disability from engaging in community activities.

If there are not enough support hours for this to be viable, it might be worth seeing if there is a befriending service that could help.   While I think it might be possible given time for Gilbert to feel comfortable going alone to the folk club, expecting this to happen after just two accompanied visits is creating a situation that could well re-enforce rather than counteract feelings of failure.  In this case  there is a caring support worker who, despite having an understanding of autism, didn’t quite get the depth of the social difference and resulting difficulties.  

In Saturdays Guardian there was advice which I felt made a similar inappropriate “you can do it” assumption: http://www.theguardian.com/money/2014/may/17/dear-jeremy-work-advice .  There was an enquiry from someone who wanted help to decide what to do after a change in the nature of their job. They were doing fine providing customer support by email, phone and letter, but were struggling badly since the job morphed into a face-to-face situation “I felt I was forced into taking a role a long way outside my skill set.  I now wake up dreading the day ahead…….”.  The advice seemed to be essentially to get over yourself.  The ‘agony uncle’ responds “It’s only when you’re in the same room as a client that you throw a wobbly and I believe it’s within you to learn to screen this out…be grateful for being forced by this accidental restructuring into doing a job you’d never have applied for.”

To me this reply shows a lamentable ignorance about potential neurological and mental health issues  If someone said they had a job delivering papers on a flat round, but the route changed to a steep hilly one and now they were in constant pain, I doubt anyone would say “be glad you have this challenge”.  Mental distress is as real and disabling as physical distress and needs to be taken as seriously. It seems a shame that there could be such a lack of awareness amongst professional advisors of the possibility of disability that the advice they give could be toxic to an autistic individual.

*I love analogies, and irritate my children by constantly using them – however this one I have borrowed from a a speaker at a conference on autism diagnosis organised by Dr Laura Crane.

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