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Autism -  ordinary or extraordinary?

27/7/2014

15 Comments

 
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.

15 Comments
Eileen
27/7/2014 01:31:54 pm

I KNOW from experience that the diagnosis of AS - whether formal or informal - can shine a light of understanding on to what is often a difficult and stressful family life. Following the diagnosis of my grandchildren with AS we, as a family, came to the view that other family members were on the spectrum. This understanding, collectively agreed, led us to devise strategies for handling what had previously been considered pretty 'odd' behaviour as well as helping us to be more tolerant of each other.
I agree that autism is best viewed as a difference that is also a potential disability. The greatest sadness to me is that the disabling aspects of the condition can often get in the way of the flourishing of the wonderful talents people with AS so often have.
My son told me that if he could press a button and not be on the spectrum he would not do so - proof, if I needed it, that Aspies would not always like to be without their AS!
As for labelling, I've been discussing this recently with a friend who, like me, studied sociology, where 'labelling' was often seen negatively. The labelling of political dissidents as 'mentally ill' comes to mind. So, I guess that, in the wrong hands, 'labelling' can be misused, but that this will be less likely when the nature of AS is better understood among professionals as well as the general population.

Reply
Caroline Hearst
27/7/2014 02:01:50 pm

Thanks for your comment Eileen, I know that labelling is often regarded negatively - my favourite statement about this, which I admit I quote ad nauseum, is from a presentation by my friend and colleague Dr Ruth Baker - she said "Diagnoses are often thought of as labels but they could also be considered as signposts. Signposts do something more than labels they help people find their way on a journey" . I also think that once the reasons for behaviour are better understood it is far easier to change that behaviour. I also agree with you that identification of autism is what makes a difference in family life, rather than formal diagnosis.

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Liane Collins link
21/8/2014 03:49:53 am

The Dr Ruth Baker quote is my favourite too. It feels very positive and also true. It is different, but different is ok, and understanding where we are going and what is around us is so much easier to manage than the confusion pre diagnosis. To use the common jigsaw analogy, I felt attached to my husband and son (who also has AS, but to a greater degree than I) but that my other sides didn't know where they fitted. My identification and diagnosis was like finding the other side of me fitted the more stable edge of the jigsaw picture after all.

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Jo Pike
29/7/2014 11:11:18 am

I love this article! A very meaningful exploration of when being "different" does not automatically assume a disability while still allowing for recognising that sometimes an understanding of a real "disability" is important too. I have explained as best I can to my 7 year old about his autism and while trying to focus on the great things that being autistic can provide (he is a Cray supercomputer!), he can also gain awareness of why there are some things that his peers can do that are simply beyond his ability.

Reply
Eileen
29/7/2014 12:25:27 pm

Yes, its great to have this discussion but I really feel as if I want to restate what I think is the most important aspect of AS -
The greatest sadness to me is that the disabling aspects of the condition can often get in the way of the flourishing of the wonderful talents people with AS so often have.
Please make sure that you identify the DISABLING aspects of your son's AS and help him to deal with those so that he can flourish

Reply
Jo Pike
29/7/2014 02:03:19 pm

As with all individuals with autism Eileen, the areas of ability and disability are unique to each person. I work to support teenagers with autism in a mainstream school as well as parenting my own child and the one pitfall I always fall into is the assumption of what the child may not be able to do rather than what he or she can do so I am not sure that a focus geared around disability reflects my own personal experience. My opinion based on my own experiences is that each child will signpost their own areas of strength and need - again Caroline has illuminated my understanding with her explanation of a signpost as opposed to a "label"

Eileen
30/7/2014 12:54:46 am

I really do take your point Jo. I guess a difference between your experience and mine is that I came to AS very late in life - when I was 70 - when my grandchildren were diagnosed and we recognised that other adult members of our family - ages ranging from 70+ down to 46 - show characteristics which are Aspergic. So, I can look back and see that the unrecognised disabling aspects of AS in my own children really impacted on their development. One is alcoholic and socially isolated because we didn't really help with the problems he had with social relationships and the other often struggles with organising his home and finances and suffers depression when he is faced with life changes because we didn't really see that Aspies often find change difficult.
I can see that focussing on AS as a 'signpost' can be good but in some cases if the car breaks down because we don't recognise faults in the engine then we will not reach our destination however well it is signposted. It feels to me that we need two focuses - keep our eyes on the route ahead but also attend to anything which is wrong with the engine!

Reply
Caroline Hearst
30/7/2014 10:31:21 am

Hi Eileen,

I appreciate your point, and think it makes life much easier if people have autism identified or diagnosed earlier rather than later in life. I like your analogy about the engine too although I would say the thing is to understand how the engine works and ensure that it is appropriately tuned up.

Reply
Jackie Pilgrim
31/7/2014 08:09:07 am

I love your post. It's so good to read information about Autism that addresses both the severe and less severe. I also appreciate the discussion of how hostile debates can be about the subject. I for one am one who see's autism as a neurological difference.

As far as autism being a disability, all that I have seen and experienced shows me that we are not disabled, but uniquely abled beings. To say we are disabled is just like telling a fish he is disabled because he cannot climb a tree. How is it that there is no disregard for the fact that the fish in a excellent swimmer. To factor in the notion of disability is only saying that a being is not able to do something that the so called average being can do, however the injection of such negatives negates any possibility of the average being seeing the unique and dare I say, even the unconventional abilities of those deemed disabled. It's really quite unfair and judgmental.

Reply
Eileen
31/7/2014 09:58:16 am

I'm really enjoying this discussion. It's making me think - which has got to be good! I'm beginning to think that perhaps something can be a 'difference' and a 'disability' at the same time. I can very easily use a word like 'disability' without really considering exactly what is means. So I Googled it (like you do!) and found that under the Equality Act 2010 you are disabled if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. Then I started to think what an 'Impairment' is so I looked it up in the dictionary and found it certainly has a negative connotation in that it is to do with 'impairing' which means to lessen the value of or weaken. I feel as if I'm getting bogged down here but to get away from definitions and back to real life I do believe that many of the characteristics of AS make it difficult to function in the modern world. My experience has been that my family members (diagnosed or recognised as on the spectrum later in life) have often struggled with face to face social interaction and with organising their lives. Interestingly, a we become less into face-to-face communication and more into virtual communication the Aspies are winning out! I think, though, that I have to come back to my belief that Aspies often have wonderful qualities and talents but that, given the demands of the modern world, their neurological 'difference' often makes their flourishing an uphill struggle!

Reply
Peter Munday
13/8/2014 02:24:51 am

I find the idea of AS being a signpost rather than a label very helpful. Over the past couple of years, I have come to a self diagnosis of myself as "high functioning AS". The most helpful thing to me about this is that I can understand myself a lot better. On a number of occasions in the past, people were upset by things I said or did when I had no intention or desire to upset them. This used to make me very embarrassed and feel I was "odd". I now realise that I spoke or acted in accordance with my AS way of seeing the world. Now that I know more about AS, I feel more reassured about myself, and with my greater understanding I do try not to upset people so much. Also I can see that my AS traits, e.g. very high concentration and focus, can be a strength but also a weakness. My long suffering NT wife has been a great help to me in these areas.

Reply
Caroline Hearst
14/8/2014 03:16:06 am

Thanks for sharing. I am with you on this, discovering I am autistic has greatly helped me to understand myself and change my behaviour that had a bad effect on others or undermined the possability of me achieving my aims. It is also great to hear about supportive NT's in the lives of autistics

Reply
Louisa Radice link
13/12/2014 03:08:51 am

Unfortunately, hyping up autistics' supposed special talents is a double-edged sword. I've had people demanding to know why I'm not the next Bill Gates - in other words, my different ability gives me less of an excuse for my poor employment record.

And Eileen, I think it's a bit premature to declare that Aspies are winning out thanks to the prevalence of virtual communication. The experience from the dotcom world is that virtual communication increases the need for face-to-face communication rather than replacing it altogether. That is why the tech boom is so overwhelmingly focussed on London rather than evenly spread across the country - people still need to meet in person.

Reply
Caroline Hearst
15/12/2014 04:51:19 am

Hi Louisa,

I agree that the idea of special talents is a double edge sword, and not all of us have them - I unfortunately don't. However that does not mean we should not recognise the fact that there is a high proportion of special talents amongst the autistic population.

I also agree that employment including in the tech sector tends to assume intuitive social radar that we autistics don’t possess. However I do think it is possible to make accommodation for our differences to enable us to succeed in employment. As this sort of accommodation is rare many if not most of us have patchy employment records, and I suspect we are rarely able to achieve up to our abilities, because we so often get thwarted by challenges that could be overcome with understanding on all sides.

I do think though that the internet has been a brilliant for autistics as it has enabled some people who find face to face interaction incredibly touch to connect with others via other means. Important communities have been built in this way.

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Jerry link
30/12/2020 04:02:33 pm

Hi niice reading your post

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