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What you want always wanted to know about autism but were afraid to ask

16/5/2015

9 Comments

 
On the May bank holiday I had offered to run a one-hour introduction to “Ordinary autism” at Limmud, a conference “dedicated to Jewish learning in all its variety.”   I thought it would be interesting as I have often felt that some of my cultural traits as a Jew overlap with my autistic traits, to the point where it is difficult (and maybe unnecessary) to know which is which.

Like autistics, Jews tend to like debate and aren’t afraid to challenge the “teacher” so this session included robust discussion, and many points arose that I label SAQ’s (Sometimes Asked Questions) and UIQ’s (Unintentionally Insulting Questions).  For all those (perhaps non-Jewish, non-autistic people) who might also have such questions but are too shy to ask, I will answer them here.  If you disagree with my answers I would be happy to hear why and discuss further in the comments below.

How can you compare autism to Judaism; they are completely different?

Yes, they are completely different  though they are both integral parts of my identity.  If someone insults Jews generally, they are insulting me whether they intend to or not. If someone insults autistics generally they are insulting me whether or not that is their intention.  If someone says “You don’t look Jewish” they often seem to think this will be considered a personal compliment rather than a generic insult.  If someone expresses surprise that I am autistic, that is not a compliment either; rather it is a demonstration of ignorance about autism.

I tell people who query my choice to be open about my autism ("it's not necessary"), or just tell me how “awful” autism is (you might be surprised that even a long term friend has felt free to do this) that if they heard such remarks about Jews they would be outraged at the anti-Semitism.
When explaining how helpful I think it would be to autistic people and society generally if attitudes to autism changed,  I often quote the cultural change that has occurred in my lifetime about homosexuality which used to be illegal, whereas now it is illegal to discriminate against someone on the basis of their sexuality.

How could you compare autism to homosexuality, autism is a condition that can cause major problems in daily life and homosexuality is just a particular preference in regard to sexual and life partners?


I don’t say that homosexuality and autism are the same, but  I am saying that there are parallels  in regard to some ways the two groups are treated in our culture.  I make the comparison between autism and homosexuality not because I see any particular similarity between the two but because, while the incidence of homosexuality has remained stable over my lifetime, the attitudes to it have changed radically – this is what I would like to see in relation to autism.  
Autism, like homosexuality, is a naturally occurring neurological disposition.  There are advantages to the population as a whole to have some people who think differently; that is how we progress.  Medicalising the condition is not necessary and is only helpful to individuals if a medical certificate is required to access appropriate support or acceptance of their condition.

Surely diagnosis is a good idea because that is how you get the support you need.

Yes, in the current context it is helpful for some people to get a diagnosis because there are gatekeepers to the support system and to get past these gatekeepers you need a diagnosis.  However that does not mean that the system makes sense and that an official diagnosis has any more meaning or veracity than self-diagnosis. You can see that diagnosis is not based on objective criteria when experts like Simon Baron Cohen suggest that “If the term is used too loosely, it can lose its meaning as a medical diagnostic term. I think it should be reserved for people who are suffering, because that's when you get the diagnosis. When the features of autism are interfering with your life to such an extent that you're suffering, and you're seeking help and you take yourself off to a clinic and get a diagnosis, that's the only time when the term should be used”

Surely it is good that people who are mildly affected don’t get a diagnosis because then they are considered normal and are part of normal life.

The point here is not who should get a diagnosis but whether autism is actually part of “normal” human diversity or not.  I would argue strongly that it is – that autistic people are part of “normal” - we just are the outliers and are atypical in various ways. If we want a well-functioning society we need to be inclusive of various diverse groups - the Equalities Act enshrines this principle in law. There is a great video online of
Nick Walker, Autistic educator, martial artist and mindfulness meditation practitioner putting the case for autism as part of neurodiversity.
I would also repeat something I read on twitter “Mild autism does not mean that I experience autism mildly. Mild autism means you experience my autism mildly”. It can be very disabling to have to behave like everyone else just to be accepted as “part of normal life”, especially when the special talents of extraordinary autistic people have so much to offer society generally.


9 Comments

What do we do with effective support?

21/5/2014

7 Comments

 
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.

7 Comments

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