Autism - some genuine questions

[FellatioNelson]

I will state from the outset that I do not have any direct experience of serious autism and none of my immediate family are on the spectrum but I have relatives and friends whose DCs are somewhere on the spectrum, ranging from suspected/borderline Apsergers to full-on diagnosed Autism of the most serious, catastrophic kind. And of course MN makes you very aware of just how many families are dealing with this in their lives to one extent or another. I realize it is a bit of a catch all term and can affect people extremely subtly, or very obviously and appallingly.

My genuine question is this: (and I promise faithfully that this is not meant as mischievous shit-stirring)

Are we doing something either environmentally, medically, nutritionally, or otherwise, to somehow create the sheer number of young people being diagnosed with ASD? I know classic Autism has always existed - perhaps we were less aware of it in the past because sufferers would often be institutionalized or hidden away in a way that is quite outdated now. And people with Asperger's would just have been considered eccentric, difficult, geeky, awkward or whatever, in the same way as people with ADHD were just plain naughty or scatterbrained and people with Dyslexia were stupid.

But even so, even allowing for all of that, the sheer number of children being diagnosed with some form of ASD seems to be off the scale in the last ten years or so. Were there always this many sufferers and we are just better at recognising the signs, or are we unwittingly doing something (globally, collectively, not individually) to make it happen?

Did no one else think 'Oh hi, Fellatio, fancy seeing you here?'

nope, i didn't think that Woffling - i might have been more inclined if the OP had come on thread and asked where the best place was to start to learn more about Autism and any research into it the 'causes'

if she had read/lurked she might have learnt that we are experts in our own DCs, not autism

Yes, I have seen FN around the boards for a number of years, and certainly she doesn't have any form for being a stirrer/SN basher etc. I think this is a valid question, but I wonder if it being half-term week a lot of the people with most to say are somewhat busy with their kids!

agree poltergoose - anyone can lurk or post on here
Fellatio is extremely polite in her OP
this is the best place to post to find out about ASD and it is a valid question as lightpassenger has said

'if she had read/lurked she might have learnt that we are experts in our own DCs, not autism'

That's a bit harsh though dame, some of us have both contact and responsibility for the learning of other children on the spectrum, not just our own, and some people who post here have postgrad and doctoral qualifications in autism and related fields.
It is a forum for discussion I thought, not just a closed group.

it was, i apologise, for the harshness of sentiment, but for me it's true

also what i said about feeling a bit like a side-show at times

sorry FN

Polter would be very grateful if you could point me in the direction of studies with undiagnosed adults - looking at myself and DH I have had the same thoughts.

Dame yes, by 'sheer number of children being DXed is off the scale' I'm afraid I did completely mean anecdotally and just my observation alone. I have no 'evidence'.

I suppose as a long-time MNer I hear/read snippets about autism virtually daily, and probably more than the average person does. So many of you posting on here mention your DCs with ASD in passing, even if the thread is not specifically about that. I can completely see why somewhere like MN would attract a disproportionately high number of parents who are dealing with ASD/HFA, so perhaps that has skewed my perceptions of its prevalence somewhat. However, as a teacher said upthread she has seen an increase in DXs. But what would be interesting would be to ask the question 'have teachers or HCPs, Ed Psychs etc with ten, twenty years experience or more seen an increase in recent years in the behaviours or traits that we now know as typical of Apserger's and HFA etc, rather than just in DXs? That would be the litmus test I suppose.

I think the reason I am asking is that I increasingly seem to know people who have children serious autism, or who have several children who are on the spectrum. Up until maybe 5 or ten years ago I did not know any. Again, maybe it might just be that many of those children are more likely to be in mainstream education now, or just that people are more open about discussing it. I don't know.

TET If I used language that offended you I apologise.

Us too, Polter.

No worries Dame I understand.

While I think that your question could have been FAR more tactfully phrased (parents of children with ASD are more than mildly done with others suggesting they were somehow responsible for their children's challenges - we do a fine job of blaming ourselves, thank you very much) you do raise a point.

I have 2 children with strong autistic traits. This is secondary to a disease called mitochondrial depletion syndrome - which is degenerative, and will likely kill my beautiful little girl before her 10th birthday. Her brother has the same disease, but in a milder expression, and may live until he is middle aged... autistic traits can be seen in cerebral palsy, down syndrome, rett syndrome and hundreds and hundreds of other conditions that have a genetic basis - and there is strong evidence to suggest that autism spectrum disorders (as a standalone condition) are genetic and VERY MUCH organic as well. This would explain why children with autism spectrum disorders frequently have other physical symptoms - most commonly digestive and respiratory disorders.

The other side of this is the "spectrum". When I was a child, "autism" was something that manifested as the non-verbal or minimally verbal, rocking, obsessive, violent and locked away that was portrayed as the crazy folk in bad movies. As the diagnostic criteria have broadened and medicine has advanced (this is not unique to autism, but common across many conditions) those who fit the criteria have increased. Again - many parents whose children have autism spectrum disorders can look back and see many of the challenges they had as kids fall into the diagnostic criteria. I was a bright, socially inept, mildly obsessive child and still have to remind myself that eye contact is a social expectation - would I have been on the mild end of the spectrum as a child? Yeah, likely. The difference is that children now are identified and taught through ABA or other interventions how to manage the pressures of their different "operating systems". When I was a child, we learned it by being punished in school and at home, and and the business end of a schoolmate's fist.

This will hopefully allow these children to learn how to navigate in a world of those who want to place blame for differences instead of embracing them for the amazing contributions they can offer, don't you think?

''have teachers or HCPs, Ed Psychs etc with ten, twenty years experience or more seen an increase in recent years in the behaviours or traits that we now know as typical of Asperger's and HFA etc, rather than just in DXs?

That's an interesting question, I can only give a subjective answer. I started teaching before the NC came in, I taught in a lovely school, there was a lot of scope for individuality and flexibility. I saw spectrum-style behaviour in all my classes, but it was easy to take my hippy philosophy about holistic education and apply it to the teaching of an individual child and adapt accordingly. It was OK for a child to be quirky and there seemed to be space to accommodate that within the learning.
There is a lot more pressure in the classroom now, pace and measurable learning have to be present in every lesson. Much noisier and busier classrooms, I'm not just talking about volume but about the interactivity, the endless things dangling and twitching from the ceilings, the constant pressure to be done within a narrow timespan...the level of social interaction.
I think that the changing atmosphere within education at a primary level has highlighted the way that some children struggle with the enormous expectations of them now, that under stress the traits, stims and behavioural responses increase. They were always there.

I think FNs question is perfectly valid and sensitively, respectfully phrased. It's a very important question too, IMO, and one I have often wondered about since DS was suspected as being on the spectrum. It is in everyone's interest to have more research done into why there does indeed seem to be an apparent increase in the incidence of ASD. Tony Attwood, who for many is the highly respected guru of all things AS, says in his book 'AS: A Guide for Parents and Professionals',

'We recognise three potential causes of autism, namely genetic factors, unfavourable obstetric events and infections during pregnancy or early infancy that affect the brain. Another cause of AS that has yet to be investigated is whether it can be the result of specific viral or bacterial infections before or soon after birth'. (p. 143 in my copy).

Environmental issues could also well be implicated IMO, given how much we have changed our world via chemical pollution, etc, in recent decades. I'd love to have more answers.

Polter what you said about the two very clever village doctors is very interesting, and in my limited personal experience it seems to be a very accurate depiction of the whos/hows/whys of autism - it seems almost as though genetically some people get overloaded with too much inherited cleverness and their brains can't cope!

Sorry, I'm sure that sounds a bit crass and simplistic. I feel like I'm trying to tiptoe through someone's flowerbed in a pair of giant concrete boots here

A friend of mine is a 1-1 classroom assistant for a little boy whose parents are both doctors (I do not live in the UK and the and DXs of any SNs or SENs are very hard to come by here) and the parents are from a culture where they do not seem to want to acknowledge or deal with the fact that their son would appear to have quite pronounced autism, in spite of the fact that they are doctors, or to face up to the fact that they have a child who will be anything other than your regular NT over-achiever. So as yet he has no actual DX, which is a shame because he finds school unbearably stressful, is almost completely non-verbal and unable to cope the sensory overload of it all and he is only about 7.

Hi FN. I recognise you too and dont think you are muck raking.
I agree with Polter on her many fine ponts and with woffling when she says that ''geeks'' years ago were the guy who knew everything about growing carrots or lawnmowers or what have you.

I think the ''increase'' in labelling is due to a variety of factors.

1. better recognition that inappropriate behaviour in classroom or other environment is the 'clue' and that no child wilfully chooses to be naughty and break rules. If they cant keep rules, the reason must be social, emotional, medical or environmental.
2. more emphasis on collaboration and groups in workplaces. Those values have fed through to classrooms, where inability with social skills is now seen as a deficit whereas independent working would have been a greater asset years ago.
3. (My own take on this) I think that some children are genetically susceptible (there is some evidence for this). This genetic susceptibility manifests itself, perhaps, due to environmental stressors that we are not yet completely familiar with (see endocrine disrupters).
4. As Bee says there is research coming through as neuro-imaging improves which shows specific areas of the ASD brain which have differences to the ''NT'' brain. Also, there is a recognition that the gut is our ''second brain'' and what we eat has a far more immediate impact on who we are than we have previously thought.

Finally, I agree that many parents (including me) who have children with a confirmed diagnosis, look at ourselves and our difficulties as children with new eyes.

Ok I'm no expert, I have 2 dc's, one with asd, the other being assessed for asd. I am also doing a course about autism, and I read the other day that the DSM I & II ( this is the diagnostic and statistical manual DSM) in 1952 and 1968 respectively didn't have a definition of autism, children would have been diagnosed incorrectly as having 'childhood schizophrenia', so that will explain a rise somewhat, if it was incorrectly diagnosed back then.

As has been said up thread, it's all about awareness, better diagnostic tools, changes in social environment.
Think back to 200 years ago, autism would have been around, but life was quieter, calmer and more structured with religion and family upbringing, so was probably easier to live with, that's my thoughts at the mo.

Again I agree with Woffling - it is perhaps more that the way of educating primary-aged children has changed over the last 25yrs.
And 25yrs ago, as BeeMom says, 25yrs ago there were far more special schools, so many would not have been in a mainstream school.

I was dubious when I saw the title, but when I saw it was posted by Fellatio I was all 'aah right thats fine!'

Just wanted to say I totally agree with the following;

I do take issue with the idea that some forms of Autism are somehow less serious or disabling than others. It is a problem with a spectrum condition... But whilst my ds would be considered at the 'mild' end of the spectrum as he has Asoergers, there is no way the disabling effect of his condition can be considered mild. It is different. Whilst a child who has classic autism may be 'lost in their own world' my ds is very aware, every day, every time he interacts with other children, how different he is and how out of place he feels. At 6 he wanted to be dead

It was the first thing that jumped out at me from the OP, then I saw it had been addressed by the above poster!

I think part of the reason why you will see a lot of posters on MN who have children with autism, is because we dont get out much! when im awake til 1am waiting for my son to go to sleep, MN is where I am.

I think autism is genetic and that diagnosis is just better these days.

ah yes Amber I agreed with Polter on that point. My ''mild'' ASD HFA DS has said something similiar.
As I walked him into school one day after a particularly nasty incident, he did that awful voice wibble of enormous emotion barely contained while he said 'you have no idea how awful it is for me in there'.

Primary school for my DS was like being a tightrope walker. He could do it most days, but if there was a high wind, a can thrown, taunting shouts of 'Fall, fall' he'd plummet.
He was an explosive Aspie, back in my school days if you'd picked on his like, he's have thumped you and you wouldn't have taunted him again. Therefore he would have been able to concentrate on the tightrope. With a reputation for being antisocial and worth walking soft around.

YYY Woffling !! Part of the reason I got to thinking about this is because my son is DXed with ADHD. He has it fairly mildly all things considered, but we were discussing a video on youtube together the other day (sorry, struggling to do a link) called ADHD Animate - Changing Education Paradigms. It makes some excellent points about how the stimuli we subject children to in the modern world is overwhelming and relentless, and about how our very rigid system of education is not working for so many children who learn in a certain way and who get overloaded with information from all angles and struggle to untangle it. And I started to think more deeply about about children with autism as a result of watching this.

Sorry, I am waaay behind everyone else on this thread. Woffling I was responding to your post of 11.43