A tricky question ; is autism really on the rise?

[mysonben]

I've been pondering a bit on that for a while.
I can't make my mind up really.
On one side the numbers are increasing quickly over the last 15 years...
Could it simply be due to better dx? And to the fact that autism is now seen as a vast spectrum these days so more children are being encompassed, included within the spectrum, whether as before only moderate/severe cases were dx as autism ? if that makes any sense.
On the other hand, if the numbers don't add up simply because of better dx, then what is it then? It seems those involved in the research don't really know.

What are your views on that? Thanks.

i dont think its on the rise at all, i think people (and GP's - well some anyway!) are more informed.

Aspergic kids were "a bit sensitive", children with LD were " a bit backwards", and non-verbal: "well he'll talk when hes ready". ADHD were "just a handful" or "needs a good seeing to". So only the very severe cases were noted, and often put into institutions.

I feel that things definately have a huge way to go tho - when i took DS5 to GP (for something totally unrelated) and she noticed that he was spinning, flapping and licking the carpet and asked why, i told her that he is autistic, and she said "oh, whys that?"

I am a women with ASD. I think too little has been said about the rise in ASD and the changes in education.

I coped well through school although I was definitely "a bit odd". Schools were generally traditional. You sat in your place and said nothing unless spoken to. This provided a very secure quiet non threatening environment so I was OK. The only schools I had trouble with were a progressive (for the time) school. I had to sit at a table with other children and children were constantly moving around the class and talking. I also went to a comprehensive for a bit where we were encouraged to work together which I obviously disliked.

I think that many ASD children like me coped in formal environments but struggle in modern schools. (Not a criticism of education today). My own son (Aspergers) was OK in "structured lessons".

Obviously this is not true for all people with ASD.

Lastly for many people there seems to be a rise in autism because people are more open about a diagnosis for themselves or their child. Even comparatively recently these things were not discussed

Uta Frith's last book 'Short Guide to Autism' (or something like that) discusses this issue (although some might think she started it by translating Asperger into English. She seems to feel that some at the severe end of the spectrum are now dxd autistic who would have been dxd 'mentally retarded' in the past - and also that numbers have been added at the higher end of the spectrum as discussed in this thread.

Well, insofar as there is a genetic component, that part can't have changed much.

I'm sure there is more/better diagnosis. But given the whole debate about how it is triggered in some cases and how that affects severity ... I think it's quite possible that there are the same number of cases but the average severity has gone up iyswim.

I read in one of the papers this morning that there are about 1 in 100 adults with autism and about 1 in 100 children with autism, which suggests that its' incidence is pretty static (and, interestingly, that the MMR has nothing to do with it; convenient figures need to be looked at hard though).

Can only relly comment on HFA and Aspies but...
I also was very "odd" at school - same as dd (who is being assessed for ASD) but it didn't matter so much as I was at an all girls grammar so far less of the socialising, no boys to deal with, several other "wierd kids", and we all sat and listened in lessons and then did questions etc. Also being "odd" was accepted. Now all kids go to comprhensives, in mixed classes, and the social aspect is far more important. My daughter is expected to do "group work" in school, I never had to so the fact that I couldn't didn't matter. Also I look at the stuff dd brings home - it is all dressed up to make it "interesting" to the NT kids but all the pictures, silly titles etc actually distract dd who can't do the maths questions on tables because she can't work out how the elephant fits in - well neither can I but I didn't have an elephant with a sum on its head when I went to school, just a list of nice clear questions.

So in all I think that there is far more emphasis placed on "group work" and "fitting in" in school and that an old fashioned cirriculum and lesson style suited Aspies and HFA but the modern "fluffy dressed up questions" and "group work situations" really does not work for many on the ASD.

Finally I think that society is now far less tolerent of difference and far more into everyone being social. In the old days people could try to fit in when they choose to socialise and then have "time off" at home. Now with moibiles, facebook etc there is constant pressure to socialise all the time so life is far harder as even people with ASD still want some friends but now keeping them seems to require an ability to constantly reply to texts, send them etc which it didn't before.

So I think that actually being on the AS, certainly at the HF end, really means that there is a mis match between how you are and how society expects you to be and "how society expects you to be" has contracted hugely so lots of peopel (and children) who would have been called "odd" are now not accepted for what they are but labeled as autistic.

I'm not saying that these children do not need help - far from it - most people want friends but the problem now is that people, other children, society, will not accpet difference so all the associated problems with ASD - like depression, inability to hold down a job etc are gettign worse - not because autism is, but because society is.
Catkinq

The thing is Jux from what I ahve seen that doesn't really relate to MMR as the figures that interested parties thought were MMR related were so miscule anyway that a national pecentage wouldn't necessarily pick it up IYSWIM

However, am of the opinion tjhat asd is high in both adults and children, but that we are better at seeing it nowadays; there is no adult ascreening ehre but most people who know me realise that me, my Mum and grandad are all at the higher functioning end of the spectrum.... ds1 has been dx'd with HFA level asd, and ds3 has asd at a more severe level.

It may be that we see it more in our flexible-ish society where sttructure and rules are not so trendy, but equally given that Asperger'swork is really fairly recent, and didn't reach the UK until quite late on in recent history- well there's no way people would have been picked up if there wasn't a name or a general 'idea'for people to pick up in their own children. Non functioning kids is one thing- ds3 would always have been picked up as SHN- but ds1 would probably have been labelled a delinquent or somesuch.

I do think somewhere there is a factor that is exaceerbatng development of asd: I remember reaidng that at the time of Kanner's work they trawled the institutions looking for people who fitted the type and found none for ages, so much so that the work was doubted; it was only after a few started to trickle in that acceptance started to grow.

Start my module on diagnosis Monday, hope we will cover this a bit more. It is very interesting. Personally I do beleive there are environmental factors- as in proper environmentalpollution, not kjust outside IYSWIM- I am heavily aware that we lived by A roads when ds1 and ds3 were tiny (not for ds2) and there is a link between lead and LD; also will be ahrd to convince me that the fact everybody in our familoy so far with a casein intoldetected at infancy ahs gone on to show asd signs. DS4 is still small so don't know where he will go, but he has a very strict cf diet as he has that also.

I know very little about autism, but some of the things said on this thread strike a chord with me.

I am pretty sure that my Mum has the same condition as dd, though less seriously, and that my Gran had it too. But it was not known so it was not diagnosed. Also- there was less need for a diagnosis, because there was less pressure: when my Gran was ill, she just had a year off school and stayed with her grandparents on their farm and everyone was fine with that; when dd's attendance dropped to below 84%, they sent the Education Welfare officer round.

Not saying it's the whole explanation, but it's harder to slip through any net these days.

Grandad grew up on a farm; one of the elder of eleven children, nobody cared much about behavioura beyond getting up and cutting the crops (or whatever task was allocated).

When he went into the aitrforce his peculiar self isolation and detahcment was utilised with a career retriving bodies from crashes.

That's not soe asy these days: companies talk in stupid languages (blue sky thinking- lietraly language isues would have ds1 reply 'clouds'?), comform to dress codes that upset Aspies and be judged more on their socialskills than actual work output.

I think the flip side of that is far less people leading lives in tiny rooms alone and semi suicidal wondering why theya re so different, and less severe people being treated as delinquents or inferior becuase of sensory issues, which is only a plus- but absolutely the world ahs changed somewhat. In his pre school years ds1 insisted on a uniform on ironed grey shorts, grey pullover and shirt- we used to call him 'fifties kid'- and in many ways several Aspergers dxpeople I know would indeed fit that rigidly structured world.

DoNotPress, I regard all government figures and research in this subject as utterly suspicious. They have too much to protect to be considered objective or trustworthy (and I know people who have refused to put their name to gov research because the research has been so artificially skewed in order to stay on message).

I have pondered this a bit too, I usually (I say usually as sometimes I have paranoid, looking-for-blame suspiscions) believe that it has nothing to do with the MMR vaccine, DS was showing symptoms already before he had the jab.

I agree that DX tools and awareness, and broadening the spectrum is the reason behind the rise.

I think that when our kids have grown up, there will be a lot more information for those who are in our situations right now. As we have got the right tools for a diagnosis and fairly ok(ish) therapy. So the statistics when this generation have grown up are going to be a lot more valuable that the things they print right now - which change per page you look at... Therefore, they know what to improve on, what to expect in x situation, what therapies work best.

Note, I am not saying so they can "cure" it. I am not for the idea of "curing autism" - but for some families, treatments for particular aspects of an autistic individual would be graciously accepted.

Longer term I think we will be referring to autisms- there are so many variations and I think as many causes once you have the genetics in pace. DS1 was clearly born as he is, wasobvious and even his maternity noptes say he was independent on day 1 (!- not wanting cudles etc I think they eman, didn't notice him doing the washing up )

DS3 though is an entirely different individual to almost all ASD people I know; some aprents actually get funny with us about it- as if we don't qualify. yet his langauge is delayed, he needds and SNU- it's just a different presnetation, a new throw of the dice.

Thanks for your replies.
I can agree why much of what is said.
I myself think part of it is better dx, and bekieve there are probably external causes too like pollution, food intolerances, definate genetic link,... maybe more. But it's hard to be certain on anything really.

The food intolerance bit interest me a lot . As i have recently found out my mum has "coliac's disease" , she wants through years of pains before it was finally picked up.
The thing is since i hit my early twenties, i have had pains and 'tummy' isssues , was seen years ago by consultant who said it was IBS, i thought it was due to childbirth ...how foolish!
Now it turns out , i have 'coliac's too.
And DS is constipated on and off, and has horrid craddle cap ever since he was born, which i believe is a sign of wheat intolerance.

two answers really

I think the number of people with aspergers and HFA is quite possibly the same or similar. And I think the number of more severe children with Kanners type from birth ASD is probablythe same.

But I think my type of ASD ( by which I mean my sons) which is oftne regressive, severe, combined with other conditions and a real mixed bag of abilities - is massively on the rise.

I grew up in a close knit community of inter linked viallges with several thousand people.
The kind of children that are my sons peers were just not there. The hand flapping, tanruming, poorly verbal, stimming OCD kids.
Andthe perception that they were shut away is not an explanation for that because in our community children were just around. I had a friend whose brother had CP, babysat for a girl who had downs syndrome etc etc etc.

THis is the issue that always causes problems - we are not, and should not pretend to be, talking about one kind of autism.

TBH i think life would be way simpler if people would give DS2S type a different name because a) we could stop pretending that it is NOT on the increase when I am positive it absoloutely is.
And b) we could treat it without being accused of wishing to change an autistic person. My son needs treatemnt for his stomach issues and his poor immune system. That has an impact upon the appearance of his ASD behaviours. I should be able to make him feel better without being accused of wanting him different.

[sigh]

elmo

I do not think that DS2 was affected by his vaccinations because I have "paranoid looking for blame suspicions".

I have strong concerns about the MMR because he WAS NT . He was 18 months old so I could see his development. Because his leg swelled up like a fucking balloon and because he was ill for weeks and never spoke again, stopped using his potty, stopped sleeping at night and started biting himself and screaming ALL the time. All within a few weeks.

Here. On this SN board. Could we please not throw the 'looking for blame' thing around.

Pagwatch's story is one echoed by many more intelligent, sensible mothers who I, for one, believe, which is why I got J single jabs. Ironically, he then turned out to have autism anyway, but the signs were always there from birth, now I know what they are. But the stories from those whose children went through regression breaks my heart on their behalf. A mother knows her child and knows if they have regressed, and if this can be traced to an injection, of course they will tell others, as they should.

I remember the TV programme which started me off researching the MMR as J was nearly due to have it, would have been 2002 I reckon. It was a debate programme with pro and against the MMR and the scientists weren't agreeing but the mother whose story really got to me and I will always remember was one where her son had been verbal, progressing normally etc. and then gradually lost language so that 'juice please mummy' became 'juice' and the 'oose' and then nothing - no more speech. All after MMR. Maybe no link but I don't think coincidence will explain why there are so many similar stories.

I can reconcile with J's autism, because it was always in him. At the moment, I don't really feel I'm grieving for a lost child, which some do I guess. But if I had a child who regressed, I completely would feel that I had lost my child, who they were before anyway, and I would actually feel that my child had been stolen and be very angry at the person or the thing that did that to me and to them.

((pagwatch))

That is the thing, several of you said it:

"Longer term I think we will be referring to autisms- there are so many variations and I think as many causes once you have the genetics in pace."

Different children with different "kind of autism", and lots of different causes can be involved...including the MMR quite clearly for some children.

My DS had his 1st jab at nearly 19 m. We already had slight worries back then with no speech, obsessive repetitive play,...
Thankfully we didn't observe any sort of regression after that, but very slow progress.

However, since he's had his 2nd jab about 1 month ago, we have had more 'bad' days with more stimming, jargonning, 'oddness', and general unwellness like a cold... but no massive regerssion. We are lucky i suppose in a way.
And i absolutely agree that it isn't the case for everyone, some children will react much more strongly.

Should have put down 'we are lucky in a way', a bad choice of word, it has nothing to do with luck in the end.

Dear... sorry meant to write "should not "
my typing is rubbish

I am really sorry my earlier responses were too emotional.

I have to just say. I would actually be delighted to find that something else in DS triggered his regression.
I find the coincidences too overwhelming for it to be unrelated but if time and reserach proves it to have been something else I would be pleased.
Because it would be sad for the parents after all this furore who vaccinated. I had the jab innear perfect ignorance . I had heard rumour of a link but had paid it little mind.
Now it has been all overthe place and parents are made to feel stupd for worrying. Those that worry and press ahead must be so anxious if their child plateaus or regresses.

But I would take huge comfort from proof one day that DS2 was genetically pre-disposed and that God or luck or vaccine or natural virus was the thing that tipped him. That would feel more like destiny and less like a tragic event.

I saw the boy my son was becoming and fell in love with him. Andthen that boy was gone. That is hard to watch.

I still love him with all my heart but he is different from that other DS2. It is hard to reconcile to at times. And I hate people making me feel bad at wanting to rediscover parts of that other DS - as if that means I can't accept who he is now.

But finding it was just one of those things would be a strange relief. I would really be happy to be wrong about this link with his jab. I honestly would.
IYSWIM

Well autism isn't one thing.

I doubt the type of autism which runs in families, and is triggered by effects of multiple genes has changed much - and is simply better recognised.

The type of autism that comes with a whole host of immune conditions though, and doesn't seem to run in families (although other things like MS and type 1 diabetes might) - yes I'm sure that type of autism has increased.

Well maybe if a rise in 'older' mothers has been 'blamed' for increases in chromosonal disorders in children (and I hate the word 'blame' because I have been 'blamed' as an older mother), then - as scientific studies in Israel have shown - a rise in older fathers and second marriages might be the 'cause' (and please note I hate the emotism around that term) of a rise in autism. The only thing I take any 'comfort' from is that 'older mothers' aren't to blame for everything (as often seems to be the case).

pagwatch just wanted to say that my son regressed at 2.2 - a long time after MMR - so not all regression autisms are linked to jab. I know it doesn't tell you the cause in your case but means it is possible it was going to happen anyway at a certain point in the brains development. My son doesn't have the immune issues. He has moderate classic autism - and is making progress again now about 7 months after regression - but has few of the sensory issues and no immune issues. But yes I feel I "lost" my boy and as he progresses again I still find myself "looking" for that boy I had and hoping he comes back to me; however irrational that makes me.