Coping strategies…not “growing out of Autism”

By | January 17, 2013

Sometimes an article is published that you read and think “did anyone actually research this properly?” and “oh dear, this really isn’t going to help”.

Yesterday was such a time. An article published by BBC Health Children may “outgrow” Autism.
(Click on the link to read) but below is a sample from the article:

“While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism.

But experts urge caution.

Much more work is needed to find out what might explain the findings.

Dr Deborah Fein and her team at the University of Connecticut studied 34 children who had been diagnosed with autism in early childhood but went on to function as well as 34 other children in their classes at school.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes”

Dr Thomas Insel
Director of the National Institute of Mental Health
On tests – cognitive and observational, as well as reports from the children’s parents and school – they were indistinguishable from their classroom peers. They now showed no sign of problems with language, face recognition, communication or social interaction.”

As the parent of one (possible two) child(ren) on the – extremely wide – spectrum, this article concerns me. Again, this is people trying to “cure” autism. I wonder if its motives are monetary.

My daughter is in a special needs school, with a statement, because she needs to be. She could not cope with elements of mainstream school – the sheer number of children in class with its associated sensory overload, the class itself (she did most of her work at a desk in the corridor) and the play times – children running past her, shrieking, playing, doing what NT children do in a playground. She could not access the curriculum at all at times – despite a full-time TA allocation – and this meant that emotionally, mentally and socially she was further and further back from her peers.

I used to childmind a girl in D’s class and the differences between their levels were extremely vast, and not just the obvious. Occasionally the girl would do homework at my house and hers set was many levels above D, it used to make me feel very sad for D. It was an immense relief when she was statemented and we had the choice of a special needs school for her.

That was the best decision ever. It was a hard decision to make, Hubbie and I had to look beyond her immediate needs and consider long-term. Did we want her to be in an environment where she would ultimately get GCSE qualifications, but would she be physically and emotionally able to access mainstream? Or did we want her to be happier in a more autism-friendly environment, not necessarily leading to qualifications but gaining life skills? It was a no-brainer really, we had to consider D’s happiness.

And she is happy, on the whole. There are days when she doesn’t want to go into school, there are days when I pick her up and she’s absolutely furious that, many hours before, someone had brushed past her lightly and it hurt her and she’ll store up that emotion she felt at the time (hurt, anger and frustration) and let me have it! Sometimes physically.

So, does this mean she has “outgrown autism” or will in the future?
No. She is coping. Smaller class sizes, a higher ratio of staff to children and a very (on the whole) low sensory environment have meant that she copes. Brilliantly enough at times to participate in a school play (whereas in mainstream she wouldn’t even manage to go into the hall, let alone perform).

Contrast that happy, confident girl at her school performance in December (click here to read) to when we’re in town shopping. The sheer volume of people bustling past, the music blaring out from the shops, the smells etc and she is an extremely anxious child, she is overloaded sensory-wise. Something I tried so hard to explain in my meeting this week, something that just wasn’t being taken in.

I am so proud of her every day, but I worry for the future. Worry that articles with their inflammatory headlines do not help recognise that autism is a life-long condition.

Thanks for reading Jx 😘

I found a thread on Mumsnet which was interesting regarding this topic, to view it click here.

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17 Comments

Missus Tribble on 17th January 2013 at 12:01 pm.

By way of a coincidence my sister and I were talking about this recently. I’d just recieved my official diagnosis (knowing but not being diagnosed isn’t helpful to anybody and so the “validation” makes me feel much better about myself and less anxious about being around others) and I suggested that – if I could finally be diagnosed – so could she and her daughter. We know that they are both on the spectrum (and it’s looking likely that “Limpet”, my adorable great-nephew, is on the spectrum too).

My sister informed me that neither she nor my niece were no longer “autistic enough” to be diagnosed as they had both “outgrown” their more obvious symptoms.

Reading this has made me wonder though; perhaps they learned social skills and coping mechanisms that I somehow lack?

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Freyja on 17th January 2013 at 12:38 pm.

You took the words right out of my mouth ! Again you manage to write things that sometimes I find hard to express. I have never been good with words. Thank the lord for these blogs.

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Tony on 17th January 2013 at 10:42 pm.

I see that Dr Insel is the Director of the National Institute of Mental Health. Unfortunately, there seems to be a growing trend in the thinking of some the American medical proffession, that Autism is a mental health problem and not a neurological condition. You only have to listen to some of the people that were interviewed after the Sandy massacre. Many were saying that the perpetrator was Autistic and that issue was a mental health problem, and not gun control, thereby linking Autism with mental health. That train of thought is now starting to leech over here. My sons psychiatrist is itching to get him onto a programme of anti-psychotic drugs ‘to manage the problem’. It is a worrying time.

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AutismMumma on 18th January 2013 at 7:16 pm.

It does make you wonder, doesn’t it. I look at my two, both at opposite ends of the spectrum but with very similar anxieties but T has learnt to cope better. I hope your family get the right answers.

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AutismMumma on 18th January 2013 at 7:16 pm.

Thanks F x

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AutismMumma on 18th January 2013 at 7:18 pm.

It is, Tony. Negative press is not helping. I do fear for D’s future.

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thebeesleybuzz on 18th January 2013 at 10:54 pm.

Reading your post I felt i could have been reading about my son except there were no special needs school local to us that could meet his needs so we had to homeschool to help him learn coping strategies. For my son, I really hope that he does learn to cope better so that he gets on well in his life but i would never consider it a ‘cure’. thanks so much for speaking out about this to help raise awareness. xxx

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AutismMumma on 24th January 2013 at 10:44 am.

You’re welcome, thanks you for reading and commenting 🙂

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thebeesleybuzz on 24th January 2013 at 10:19 pm.

🙂 I love reading blogs who really understand. somedays that’s what helps me cope and get through the day xxx

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thenotsomightyom on 26th January 2013 at 9:49 am.

You’ve changed how I think , so I’m sure other people have listened too.Keep the faith and the good work.LOLXX

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AutismMumma on 26th January 2013 at 10:43 am.

Me too, for sure x

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AutismMumma on 26th January 2013 at 10:52 am.

Thank you xx

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lista de emails on 1st February 2013 at 2:10 pm.

ever thought about writing a book someday? lista de emails lista de emails lista de emails lista de emails lista de emails

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AutismMumma on 5th February 2013 at 11:39 am.

A few people have suggested that, maybe one day ..

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lulabelldesigns on 13th February 2013 at 3:13 pm.

Great read.

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AutismMumma on 16th February 2013 at 11:32 am.

Thank you 🙂

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A bit of a mish-mash « Autism Mumma (Jeannette) on 21st February 2013 at 9:07 am.

[…] to me contagious, curable. Autism is neither. My children will learn how to cope and manage in time – see post here – but autism is a life-long disability, not […]

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