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How does degree of autism affect education?

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This seems an excellent forum for gauging the experiences of young people on the spectrum, and their parents, where the impact of the autism is much more manageable.

Some people don't get diagnosed until late teens or early 20s. They get through a lot of bullying, segregation on academic or behavioural grounds but still emerge to be diagnosed with autism or aspergers. Some children are diagnosed as very mild early on but their school experience isn't necessarily a doddle.

The autistic spectrum is often portrayed as a continuum, but this isn't strictly accurate. The presence of different symtoms and manifestations varies widely in its effects on individuals. Someone can be deemed mild, when some aspects of their autism are still severe, but the majority are sufficiently mild to enable them to cope better.

In strategies to help children in education, is it always certain that the measures we adopt to help do not prevent environmental factors which, even if uncomfortable, go some way to modifying the overall experience.

Can we learn something from people on the spectrum deemed milder or manageable in terms of their experience of education?

It would be useful perhaps to hear from parents with children designated mildly affected whether the educational experience was comparably mild, or whether there were real hardships that "mild" didn't prepare them for?

My 11 year old I am sure would be deemed 'mild' (although the consultant who diagnosed him would not use that term) as he is very intelligent, able to communicate and survived in mainstream without support until high school. He wasn't diagnosed until last August, despite our eldest having Aspergers because it looked so different and we missed all the signs. He eventually suffered very poor mental health in Y5 and we came to diagnosis through CAMHS. He has become increasingly less able to cope and socially reclusive to the point that his school are applying for a statement and we have had to employ an after school 'buddy' to allow us to continue with our jobs. He struggles with so many things and is depressed a lot of the time. Fortunately, his school have been extremely understanding and supportive, but I do fear fore the future because of his mental health, whereas the older one with an early diagnosis of Asperger's (in theory less mild than his brother) is doing really well because he is so much less emotional.

mild versus social integration

Hi Fish,

I've seen this written in the literature somewhere, but it is also my own experience. I integrate to some degree socially, I just get into lots of difficulties and misunderstandings, especially over time, or if stressed or if it is noisy. What I understand of this as an adult is that if you appear to integrate but don't conform all the way, your non-conformity is read as being deceitful or conniving. It also makes you a target to those who see a way iof getting a laugh out of your social clumsiness.

Thinking back to when I was 11 I think much the same thing was happening. Children pick up on differences that are much subtler than would arise for someone with more marked social integration problems. That gives them permission to tease, manipulate and entertain themselves with the difficulties a mild AS encounters, whereas there would more likely be teacher disapproval of them taking advantage of someone with more obvious difficulties.

There is also the guilt factor. I experienced a lot of self doubt, embarassment at my apparent social failings. There was no obvious explanation. My difficulties were too subtle for my parents or teachers to pick up, they could only see the outward expression of my difficulties, which seemed to be for no good reason.

Bullying of mild AS is subtler. It isn't easy for teachers to see the cause. I likened my experiences to "the last straw". Basically I became acutely distressed after very minor incidents of teasing, but what teachers couldn't see was the cumulative effect (because they weren't around when that was happening). The bullying went on in the classrom when the teacher was out the room, in queues and walking in lines (which was what happened a lot in my day), at lunch, in the playground, in the changing rooms, in the toilets, in the bus queue - all places I couldn't withdraw from.

So when you say the school knows about it I do wonder if they do. Bullying of people with mild autism is not the same as conventional bullying. Kids quickly realise that the complexity and frequency of small hurts and threats can generate meltdown for very little effort and little fear of discovery. Meltdown is entertaining.

The reason I raised this is I think there is insufficient understanding of what mild means in terms of bullying

You clearly had a tough time. It is all those subtleties that cause the issues I think because they are unseen. My son's school have been helpful in that he moves 5 minutes before ends of lessons and has somewhere safe for lunch and break time, but of course, he still has to be in lessons, and he certainly percieves himself as being picked on when he is feeling stressed. I think the major thing for him is the self doubt, and like you indicated, he becomes very distressed at seemingly small things. Meltdown is indeed entertaining for those who get their enjoyment from that kind of thing, but he is unable to control it and so it's a bit of a vicious circle. Did you get to a place where you managed to control this or deal with it differently, and if so, how?

Refuge

Hi Fish,

My refuge was in between school and home, as my parents were spending a lot of time talking it out of me. I was persuaded to feel it was all my fault. After all no one else was apparently doing anything wrong. So evidently it must have been something I was doing, and it was down to me to put it right.

So I filled the time between home and school with 'shortcuts' that were really massive perambulations that led to getting home late. I spent a lot of time making dens for one, or walking on my own. That provided my release. It also actually benefitted me long term, but that's another story.

There were no safe refuges when I was at school, and in my higher education role of a disability coordinator, I have had a frustrating time trying to get genuine quiet rooms created. Often these are multi-purpose rooms that aren't quiet at all. Whether schools do this effectively is probably very variable. And of course other children know you have to go to the special room, which adds to the buzz.

The other thing is, and this is partly why I started this thread, is that my strategies for coping with this probably contributed significantly to my coping strategies as an adult. I don't want to use the phrase toughening up, not least because that was what I was always being told to do as a kid - the rough existence supposedly toughened me up. It did a lot of damage, including baggage I carried for decades.

However what I'm trying to suggest is that some of the adverse side better managed may be better in the long term that total avoidance. I'm sure I'll get strong reactions against this, but I also feel this is a subject area that needs to be confronted.

adding positives

There's a further element to this I learned about much later in life. The more positives you can add to the equation to balance out the negatives, the better the outcome both day-to-day and long term.

The concessions Fish refers to, such as leaving class 5 minutes for break and having a safe place to eat are positives, and the more of these that can be created the better, especially so they are spread out across the time frame when stresses are built up.

Besides my own experiences I regularly see this helping students on the spectrum. Meltdowns do seem to follow a build up of stresses rather than being specifically related to the events immediately preceding meltdown.

What I observe and feel could ease matters is to resolve some of the contributory factors, such as any recurring causes of sensory overload or anxiety that congest the bottleneck (Digby Tantam's narrow bandwidth - in Can the World Afford Autistic Spectrum Disorder?).

If some of the pressures could be eased the impact of the small frequent hurts asssociated with school bullying might be alleviated.

It may be others can give feedback about this.