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Autism - some genuine questions

(111 Posts)
FellatioNelson Sun 04-Nov-12 09:29:33

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less aware of it in the past because sufferers would often be institutionalized or hidden away in a way that is quite outdated now.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?

Ineedalife Sun 04-Nov-12 09:34:46

I am going to answer your thread against my better judgement.

The SN board is a place where people come for support and advice and I am not sure what your motive is for posting over herehmm

What I will say though is based on the struggle that most of us have had to get the correct diagnosis and support for our children with ASD I dont think you will find anyone on here who thinks it is being over diagnosed.

ProcrastinatingPanda Sun 04-Nov-12 09:37:44

Perhaps you could research the subject a bit and you'd find your answers.

Lougle Sun 04-Nov-12 09:53:40

FellatioNelson, I understand why you have come here smileThere it's growing evidence that ASD is an organic condition, and brain scanning technology is starting to show physical markers, although it's a long way off from being used as a diagnostic tool on the nhs. I think also, there are thoughts and developments towards a blood test. So it definitely isn't a social construct.

Diagnostic methods are still very time intensive -long history taking, observations, referrals to speech and language, etc. The ADOS test is a structured, formal assessment by authorised diagnosticians, performed by one and observed by another, before diagnosis is made.

There is some evidence of gut issues influencing ASD, too. Some people find that by taking on a gluten and casein free diet, the severity of ASD symptoms is reduced.

Overall, it is likely that identification is on the increase, rather than incidence, and girls are still massively underdiagnosed compared with boys, because they often present differently to the typical image of ASD.

FellatioNelson Sun 04-Nov-12 09:55:02

Ineed My motive for posting here is that I am asking a serious question, and putting it in Chat seems too flippant and disrespectful to people dealing with it. Also in Chat it is more likely to attract the wrong kind of answers from the wrong kind of people, like when someone pipes up with 'Oh this ADHD lark is just an excuse for poor parenting' which of course would end on a bunfight, which I genuinely want to avoid. I would like to reiterate that I am absolutely NOT suggesting that is is some kind of fashionable accessory of an SN.

I realise this is a place (ostensibly) for parents to be mutually supportive of their children's SNs but it is still part of a public forum and not an 'invitation only' topic. - I want to understand this thing better and my questions are genuine, so I don't know where else to direct them. I don't know what else I can say.

I realise it is a very sensitive subject but do I somehow not have the right to ask the question, purely because I am not personally affected? (again, apologies if that reads as sounding snarky but I don't really know how else to phrase it - please don't take it the wrong way.)

I certainly never said it was 'over-diagnosed.' that would imply that it is being wrongly diagnosed. I am trying to ascertain whether there is a genuine increase in ASD (and if there are environmental reasons for that) or merely an increased awareness of it. Hope that makes sense.

Sorry to take so long to respond - I am thinking VERY carefully about what I say and how I say it as it absolutely not my intention to offend.

FellatioNelson Sun 04-Nov-12 09:55:56

PP I thought that was what I was doing! Who better to ask? grin

ProcrastinatingPanda Sun 04-Nov-12 09:59:59

No you're getting other people to do your research for you

FellatioNelson Sun 04-Nov-12 10:07:50

No, I am just asking a question and I wonder what you people think. But of course you are not obliged to tell me. I am not doing 'research' in the true sense, otherwise of course I'd just be asking for a suggested reading list. I just wondered whether there was a well established school of thought on the causes.

Ineedalife Sun 04-Nov-12 10:08:41

I agree that this is an open forum and think that you were wise not to post in chat.

It is just that see this as a safe place and in the light of the Sn bashing that is around on some of the other boards I think I am being reasonable to be suspicious of someone coming and asking such a sensitive question.

I am not going to post again because I have said what I wanted to say but I hope that you can get anwsers to your questions if they are as you say out of genuine interest.

WofflingOn Sun 04-Nov-12 10:09:08

The recognition and dx process is much more efficient than it was 20 years ago.
Our society has become much more communication/touchy-feely and social skills based than it was 30 years ago, and those out of step tend to stand out more. It is relentless and unforgiving and present in all aspects of the day.
Decades ago, there were many more skill-based and manual jobs around where you could be a fantastic geek about something and people would respect you as a source of knowledge, if a little strange. I think HFA and AS were very under-recognised.

Don't know enough about the pollutants and the effect that our stressed ecosystem might have to play in it.

WofflingOn Sun 04-Nov-12 10:12:00

Oh, and I feel very comfortable with you asking questions FN, you are a name I've recognised over the years!
I don't think you are a stirrer. There are a lot of different theories, from vaccines to genetics to dietery and environmental intolerances. Some agreement, but lots more divergence.

TheEnthusiasticTroll Sun 04-Nov-12 10:12:19

The language you use OP is very offensive.

WofflingOn Sun 04-Nov-12 10:14:14

What am I missing?

devientenigma Sun 04-Nov-12 10:15:48

open forum?? I thought we all had to ask to be on this board and state why we needed it hmm

DameMargotFountain Sun 04-Nov-12 10:22:11

"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"

and your evidence of this is........?

what scale?

WofflingOn Sun 04-Nov-12 10:22:23

No, you just have to choose to opt in, rather than it being the default setting.
Did you have to justify why you wanted to be here dev?

cansu Sun 04-Nov-12 10:22:56

I have no objections to giving my thoughts on your question. This is an open forum and I don't see why you shouldnt ask your question here! I have two dc with asd and I think the causes in our case are quite definitely genetic and I believe that medical research into genes will one day provide the answer for the cause of ASD. I think though that the switching on of this gene to cause autism probably involves other factors. I have read studies where t he age of the father is seen as a possible factor. I think the increase in numbers is down to more acceptance of asd and an improvement in recognising those who are not classically autistic. In the past I also think some of the children who are now diagnosed as autistic were probably diagnosed under the general label of learning disabled as there was much less interest in the area of special needs and on accurate meaningful diagnosis.

cansu Sun 04-Nov-12 10:24:20

I never asked if I could post here. It is in the list of talk topics you simply post if you want to. Why would anyone need to justify their need to ost here??

cornybeefhash Sun 04-Nov-12 10:24:34

dev I'm sure I just opted in when I first joined MN
isn't there a FB group though that people from here can ask to join?

WofflingOn Sun 04-Nov-12 10:24:48

Oh, thank you Dame. The thing is that I'm a primary teacher who started way back in the early 80s and there has been a year=on-year increase of children coming through the system with a dx of AS or HFA. Which I've seen as a positive, that their needs are being identified.

devientenigma Sun 04-Nov-12 10:25:39

yeah I'm sure I remember writing a small gist and asking to be on board lol

WofflingOn Sun 04-Nov-12 10:30:48

BMA seem to think that the rise in numbers is due to the changes in diagnostic criteria.
Pattern is similar in the USA.

bigTillyMint Sun 04-Nov-12 10:32:47

Woffling, as a primary teacher too (and now as a behaviour specialist teacher) I concurr with your observations.

This is a really interesting discussion. Infact, my French friend who is over ATM and I were talking about the exact same thing yesterday.

I hope that people with family on the autistic spectrum don't see it as ASD-bashing - I am sure that Fellatio is genuinely interested in discussing the subject.

DameMargotFountain Sun 04-Nov-12 10:37:34

i absolutely agree with your sentiment about diagnosis being nothing but positive, Woffling there have always been people with HFA and AS about, just, like others have said, they were labelled as disruptive/LD and often written off.

i can think of a lad who was in my class between the ages of 7-9 (this was mid '70s) who was regularly boxed in by desks made into a 'cage' by the teacher to stop him 'sneaking' off and hiding behind the curtains to read comics.

my heart weeps to think of how he must have been feeling really sad

but OP, my 1st post on this thread was aimed at you - what scale?
where is your evidence?

if you are basing your questions on 'hearsay' then perhaps you can understand how tetchy some parents in the section feel when we are asked to explain our DCs SN.

posting on specific section like this, through no fault of your doing, OP, it does feel like a bit of a side-show at times...and we've all had to develop the thickest of skins are there are some pretty harsh and ignorant folk out there who only ask questions so they can pick our lives apart.

notactuallyme Sun 04-Nov-12 10:40:05

I think a lot of what has been said is very true; particularly wrt as and hfa. As didn't exist as a diagnosis until I was about 19 according to my mother, and she says that had it done, she would have persued a dx as we did for ds. So I suspect a genetic element in some cases.
Not offended at all; it is interesting _ - maybe the rise in awareness has encouraged people to pursue dx for their dcs, and maybe the mainstream inclusion has allowed people to be less nervous of doing so?

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