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.