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What do we do with effective support?

21/5/2014

9 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.

9 Comments

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