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AmyNelson

Would you use a cure for autism?

Would you use a cure for autism?  

194 members have voted

  1. 1. Would you use a cure for autism?

    • Yes, for my child
      84
    • No, for my child
      56
    • Yes, for myself
      17
    • No, for myself
      37


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hi again,

Am troubled by my last posting, as usual I missed the crux of this posting and didn't vote. Now I have read initial poll question I want to answer for adult AND child. I wouldn't be able to say either way unless I knew what the cure was !!

We seem to have moved onto the subject of prenatal testing for asd. If this was available it would probably negate my entire immediate family's existence !

Will be pondering this all night, won't have time for the purple splodges ! (see post on night terrors )

Thought for today(yesterday, according to Kris !) Edith Piaf : "je ne regrette rien" !!

 

Night all,

wac.

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answering both questions for the screening and the cure would be a definate no! how could I change or lose a child that although gives me heartache on a daily basis brings me such joy? to take away his aspie would be to take away his whole personality and all the little things that can make me cty both in frustration and happiness.

 

and why should he change? the onus should be on the general public to realise that people on the Autistic spectrum have so much to give to society.

 

I for one am proud of my son and who he is and wouldn't change anything about him.

 

(I must go to work before I'm sacked, but will be back later!)

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I'm with Carol on this too, they're our children, and we want the best we can for them. I get embroiled in many issues myself being deaf, and get tired of the politics of it all, we just want the best for our kids not ourselves, I'm pro any 'cure' as well, but this question is ALWAYS put on disability sites, there aren't any as we know, and it always degenerates into dogma, and medical/social arguments.. Mum and Dad will do what they can while they can, but then........... It's a constant worry that's always there, I don't mind nor care in the least doing whatever I am able to help and support my son, washing, changing, feeding, yes I do all that too, but I know, outside of Mum and Dad there's a harsh uncaring and cruel world out there. To be able to help themselves is not an opt out for me as a parent, but like any other parent we fear what happens when we aren't there. Then, they aren't our children, they're just statistics and in a que that gets longer and longer. It's the light at the end of the tunnel, it's very hard to see for some..... This question is pointless, until a real choice exists, when it does, ask us again....

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The problem is the bleak view of Autistics; few can imagine an Autistic doing better BECAUSE of their Autism. Parents of high-functioners find it easier to see how, but that vision isn't a luxary for parents of low-functioners.

 

I always have a question for them: "Would you rather make your child Neurotypical than make them high-functioning?"

 

It is a hard question for them, but I always have to know; Autism societies are dominated by parents when most Autistics are able-adults and they decide what will happen to us in the end.

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Hi Amy/Lucas -

 

I keep posting on this thread, and really, I don't think there is any sort of 'comfortable' answer on this one.

 

I think that you both make excellent points about the abilities and involvement of autistic people. Agree 100% with both of you here.

The real problem, however, is that autism is such a wide spectrum, and that at other points along the spectrum people's lives can be profoundly compromised, either as a result of their ASD, as a result of social responses to their ASD, from a combination of both or from their persional responses to their ASD. No 'easy' answers there then...

 

At the risk of offending, I'd say that neither High Functioning autistic people NOR NT parents can really understand the perspectives of a severely autistic person, (can someone who's had a broken leg automatically understand what it would be like to be wheelchair bound?) and that while both would be able to make 'educated' guesses these would, ultimately, be based on their own 'reality' rather than the reality of the person they were trying to 'help'...

 

Now, from a parents point of view we look at the 'problems' our children face - internal, external and in combination - and see that their lives could be simpler without those complications, and there's nothing more 'natural' for a parent than to want to help your child through that... The ###### of it is that, to use an old cliche, the road to hell is paved with good intentions...

 

I won't talk about 'cures', but what I would say is that if I could help my son move away from the more disabling aspects of his condition I would do so. If it meant him losing his 'self', I wouldn't choose to do so, but as he's yet to fully develop his 'self' It's a moot point anyway...

 

Hope I made some sort of sense with all that... to be honest, I sort of lost the thread myself... I think what I'm trying to say is that I love my son totally, and that his diagnosis doesn't make a blind bit of difference to that. I want him to live a full and happy life, and his diagnosis doesn't make a blind bit of difference to that either (happiness is a personal construct, as I've frequenly said elsewhere on this forum)...

Until he's old enough to tell me I've cocked it all up, I'll just have to carry on doing what I thinks right, same as every parent that's ever lived, and from my perspective HERE AND NOW that means doing all I can to minimise the negative effects that ASD has on his life. Sometimes that'll mean asking him to compromise, sometimes it'll mean asking the world to compromise. Hopefully, if we all compromise his world won't be so compromised!! :D

Now, I'm off for a lie down ;)

 

L&P :D

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The problem is the bleak view of Autistics; few can imagine an Autistic doing better BECAUSE of their Autism. Parents of high-functioners find it easier to see how, but that vision isn't a luxary for parents of low-functioners.

 

I always have a question for them: "Would you rather make your child Neurotypical than make them high-functioning?"

 

It is a hard question for them, but I always have to know; Autism societies are dominated by parents when most Autistics are able-adults and they decide what will happen to us in the end.

Hi guys

 

I totally see your point on this.

 

Firstly Lucas, the answer to the question is if my son was able to communicate like you as a high functioner then I would be over the moon. As long as he was happy being him I would be happy and comfortable being him and love him for who and what he is. However, I see the frustration my son has because he is unable to communicate, the constant dirroeah he has, he hits his head and I often wonder (has he got a headache), he gets many unexplained high temperatures and non specific illnesses and he is never able to tell me he is in pain. I care for him more through instinct. His pain is my pain, I know he is suffering but he is unable to tell me, that is hard to see. Having my son as a neurotypical is not an option is it? Yet my son is affectionate - I sense things about my son on a level which is hard to explain. I know things about him when I am not even with him. Perhaps its a level of attachment that has developed because of his autism or maybe I just need locking up (cue men in white coats!).

 

If my son were to grow up and was able to adapt to life, hold down a job, have a say in his own future have his dignity - then I would be a proud mum. Lucas, its not about taking away his autism, because if he were destined to be autistic then so be it, but surely noone would want an individual to go through life with no say in their own future. That is not what I want for my son and I dont think it is what he would want either.

 

My little girl is lovely and guess what I would not change her because she is what she is, who cares if she is neurotypical or autistic she is what she is. However, if she is in pain (gets lots of constpitation) and I can make things better for her then I will try my utmost.

 

Autism alone does not cause learning difficulties does it? If I removed my kids autism, would they be neurotypicals with learning difficulties? I would take away their learning difficulties tomorrow and love em for who and what they are.

 

I thought I had given birth to neurotypical kids, just like me - the pronouncement of the word autism means different things to different people - I was devasted when I realised what had happened to my son. Its only by coming onto sites like this and speaking to higher functioning autists I have realised that autists are just like everyone else, except that they are autistic - I have started to understand what it is to be autistic (in my Neurotypical way).

 

Secondly look at the input of autists throughout history - Albert Einstein, etc. etc. etc. - how on earth can anyone have a bleak view of these individuals who have shaped mankind's history. I have read Michelle Dawsons correspondence with the Candian Autism Society and I felt the frustration and really and truly cannot understand why autistic adults are not part of these organisations? I always (in my ignorance) assumed that autists were a part of these organisations. If not why not? Noone is trying to change autism (that is impossible) surely we are all together in this parents and high functioning autists?

 

We all want the best for our kids who will one day be the autistic adults of tomorrow.

 

One day I hope my Emma and scottie will be posting just like Lucas and Amy do.

 

Okay, rant over now, sorry its late - brain has given up on me.

 

I think some lines of communication need to be opened up so everyone has a say. I am sure that both you Lucas and Amy want the best for all autists everywhere!

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Hi baddad/Carolj, I do understand what its like from the parents perspective too, I have 2 kids, my son is HFA, originally dx as LFA at 3.

I am not against treating comorbid conditions such as bowel diseases, epilepsy, headaches, depression, and so on.

My main worry is that pre natal testing will be brought out and there will be many babies aborted in the hope of preventing autism, also that help for those autistics still around and funding for centres for diagnosis, education etc will be rapidly cut back by governments.

Why would they bother building schools specially designed to help those with autism in the future when they would project there would be so many less. Services for adults are extremely hard to find already. I think it would be a tragedy all round.

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Hiya Amy, I dont think they will ever pick up a single gene for autism because I believe autism is a combination of genetics and environmental influences. Since autism crosses all races, creeds cultures and nationalities it is like looking for a needle in a haystack. Personally I feel it will be eons before they locate what they suspect are the genes. Chromosone abnormalties are easier to locate.

 

Is autism more prevalent in certain races? Its global (although numbers probably arent available) but I have seen postings from countries like India who are saying they are seeing the rise in autistic numbers.

 

Perhaps we should look at the spread of global influences ie MacDonalds!!!! Maybe a big mac is a trigger? Okay shutting up here. It cant be water supply if it is happening in third world countries - of course my children regressed deteriorated after having MMR and I believe vaccines played a part in the problems they both have. That is my observations and I have hard evidence (anecdotal) to support this.

 

Again this is only part of a very large puzzle. Emma's best friend's parents come from Vietnam. They recently returned and the mum was telling me that there are a few children in Vietnam now who cannot talk! She had not been back for a few years. Okay whether or not these kids were autistic I dont know, but she said the kids were around, because she was asking about my scottie. She also said they have no schools or facilities for these kids. I worry about my kids but I often think what if they had been born in a third world country with no support facilities what on earth would I have done. Would they have survived? This is something that makes my blood run cold, I could not imagine either of my kids fending for themselves. How many of these children would be abandoned by their parents who would not be able to cope, in some cultures disablility is frowned upon.

 

Okay perhaps I do tend to think too much but I cant help but think, this is a global problem and yes we need to find out what is triggering these problems in kids otherwise alot of these kids will really suffer. I know how hard it is for me to cope with my kids with the special schools etc. that we get, it could be 1000 times worse though. My kids are lucky they are in the UK.

 

Aspies have always been around in all cultures and have perhaps become monks or something - there are loads of kids like my scottie who have major problems functioning and doing basic things, those are the kids that I really do worry about.

 

I remember reading an article about Simon Baron Cohen's research and levels of testostorne in pregnancy and AS - I found that very very worrying indeed.

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"Personally I feel it will be eons before they locate what they suspect are the genes."

 

http://web.sfn.org/content/AboutSFN1/NewsR...004_autism.html

 

An extract from this piece-

"In new research, scientists have found that a specific gene contributes to autism and that autistic people have fewer receptors for the brain messenger acetylcholine, as well as more tightly packed columns of neurons in the cerebral cortex. Another study found that autistic children were less able to discriminate similar sounds than were other children.

 

The research is providing new clues to the genetic, neurological, and molecular basis of this still mysterious disease.

 

Autism is a devastating disorder that affects two to six of every 1000 children?mostly boys. Autism actually encompasses a wide array of symptoms?called autism spectrum disorder (ASD)?including various degrees of behavioral, developmental, and sensory deficits. Many people first became aware of autism with the 1988 movie Rain Man, starring Dustin Hoffman as a middle-aged autistic man. Hoffman portrayed an autistic savant with tremendous mental capabilities. In reality, only about 10 percent of autistic people display signs of genius?typically in mathematics, music, and art.

 

Although autism has long been identified as a genetic disease, the genes that contribute to autism have been difficult to track down. Unlike Huntington's disease or Down syndrome, in which a single gene or an entire chromosome is inherited, many gene mutations are probably involved in autism. Now the laboratories of James Millonig, PhD, and Linda Brzustowicz, MD, at the University of Medicine and Dentistry of New Jersey and Rutgers University have isolated a specific gene that contributes to ASD.

Edited by AmyNelson

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Now the laboratories of James Millonig, PhD, and Linda Brzustowicz, MD, at the University of Medicine and Dentistry of New Jersey and Rutgers University have isolated a specific gene that contributes to ASD.

Ah hah - thanks for that Amy, perhaps things are happening quicker than expected.

 

will take a look at link when I have a bit more time later.

 

In middle of scottie in mega hyper mode at the mo! He is having fits of giggles and throwing heavy objects down the stairs!!

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At the risk of offending, I'd say that neither High Functioning autistic people NOR NT parents can really understand the perspectives of a severely autistic person, (can someone who's had a broken leg automatically understand what it would be like to be wheelchair bound?) and that while both would be able to make 'educated' guesses these would, ultimately, be based on their own 'reality' rather than the reality of the person they were trying to 'help'...

 

A few years ago I would have been offended by this, because I know it's based on an assumption with no basis. Now I think it is best to always explain before going off on a rant.

 

The assumption that there are different types of Autism is not true, I explained why on another messageboard. It was my explaination for why I don't believe vaccines cause Autism, I'll copy and paste here:

 

Remember that saying about enough monkeys, with enough typewritors, enough paper and enough time?

 

The reason why this is true is because of the involvement of abudance in terms of percieved infinity. Plus, this has already happened: we evolved from primates and invented typewritors.

 

But the theory cannot be applied to Autism in terms of justifying that Autism is caused by damage to something. This is hard to explain; it requires a listener to work out by way of math the one ultimate logical outcome, like in the monkeys and typewritors. 'I, Robot' and the three laws described in that could also apply. Autistics are very good at working things to the absolute logical conclusion; I knew from the beggining of the film, after looking at the three laws that they were flawed, even though they are so robust. Ignore what I just said if you haven't seen 'I, Robot' at the cinema or read the book.

 

Now I need to actually get round to the explaination. One problem every Autistic has is that their intuition so often tells them many thingsd which they lack the vocabulary to describe or there plain and simply isn't enough flexability in langauge to fit the insight. So I have a hard job.

 

ALL Autistics posses the same implicit self-posession that drives their identity, their development and perception. That is what Autism is and it is without variation. Autistics are self-centred but not selfish, we think strongly in terms of relativism, measurement and comparison. We only learn when we can measure our enviroment and measure ourselves against other people(which led to Baron-Cohen developing the extreme maleness theory).

 

I have to come completely off subject for a moment; do you know how games designers create levels in 3D games?

 

It's different to making 2D games, where a space is filled in with lines and colours to create the image. With 3D design it works the opposite way; the designers have to imagine they are working with something like a clay block on screen and then carve away to shape what they are making. Well, that's how person-development works as well; a person is not born a blank-slate, they are born as a block that is carved into shape. This is important to know because a black-slate doesn't do anything, it's an empty-shell that only means anything when something is put into it. Just like a computer can only do things if it is programmed to. But people do things that they are not programmed to do.

 

So imagine people are clay blocks that need carving into shape, only these blocks like to jump around a bit while your trying to shape the right bits the right way.

 

So, if all Autistics actually have the same Autism and it's doing the same thing inside, how come we are all so different?

 

Once again I have to go back to the point where Autistics comprehend the world through relativism, measurement, comparison. To plot the course of any event in space you need seven measurements: Height, Width, Depth, three rotation axis and a point of origin. Autistics use themselves as the point of origin; we compare the world to ourselves and measure the world in that way.

 

Because this is a world of many extremes and possibilities, Autistics reflect those extremes and possibilities. That is why Autistics are like snowflakes and why snowflakes are all unique. Snowflake patterns are determined by chaos theory: the apparently random, actually limited, but fortunately abundant possibilities that are present in the world which they reflect.

 

Here's the twist; this configuration emulates design. That doesn't mean that Autistics have been artificially engineered, but the development is refined in the way that only a natural course can allow. Have you seen K-Pax with Kevin Spacey? He asks "Why is the soap round?" everyone scratches their heads, this is because the psychiatrists asked him if he was an alien, why does he look human and he replied with this question. "Because it is the most energy-efficient shape", soap follows the natural course of it's grubby life assuming the shape that most suits it. It's genius and the soap-makers didn't think of it until a few years ago, before that they were making horrid square soap that didn't feel right in your hands and slipped more easily. Soap is much better after it has been worn down a little.

 

Some people would say that nature seems to think of these things long before we do, but nature isn't a force or a personification; it doesn't think of these things or design them. But we are so often suprised by what springs up that we can't believe something is not genius; could a pumber ever recreate the complex system inside of plants that allows them to grow? Even with the right technological advances, a human would lack the intellect to comprehend the maze of pipework inside a plant. The only way a human could create it is by copying nature and nature uses the same principle as the 'enough monkeys, enough typewritors' theory.� just try and try again with infinite resources thrown at the project and the law of averages dictates that

 

"Enough plumbers, with enough microscopes and in enough time, will make a garden without growing it"

 

Autism was created in the same way; it is a human element which has been refined. So, how could it be replicated artificially through damage?

 

"Enough doctors, with enough vaccine and in enough time can create Autism"

 

No.

 

The problem with damage, is that it is damaging. Damage by itself isn't damaging; it needs something else to claim the status of 'damaged'. It's like that Buddhist theory about what happens to the holes in the cheese when the cheese is eaten; the holes can't exist without the cheese.

 

Damage is not random either. Even though if you blow something up with dynamite, the same object may behave completely differently each time it's blown up. You blow up some cars and they will fly apart in completely different ways, even if the cars are the same batch, it's not random. It's because the damage being done is influenced by factors other than the explosion, the microscopic variations between the cars are actually a BIG factor. But the results are invariably different, no matter how identical they manage to make the cars.

 

Because of probability, averages and and abundant possibility, damage can not cause something so specific as Autism and still leave experts in their fields not knowing the chain of causation.

 

Which is why there is only one logical outcome: Autistics are regressing because of vaccines and the phenomenom is being mistaken for vaccines making children Autistic.

 

It's like a panther falling into a pool of black matt(becoming even blacker) and people thinking the matt made a leopard into a panther.

 

It was Lorna Wing that coined the term 'Autistic Spectrum' when she had Hans Asperger's work translated and called his Autism, Asperger's Syndrome. This was supposed to explain easily that Autistics vary greatly as people, but not to suggest that there were different types of Autism.

 

Because no study has been done on the nature of Autistic intelligence, the high and low functioning definitions of Autism are baseless except for assumptions made about the ability of each Autistic based on the Neurotypical model for what intelligence is.

 

If my son were to grow up and was able to adapt to life, hold down a job, have a say in his own future have his dignity - then I would be a proud mum.

 

I am a VERY high-functioner(even if I do say so myself) and I can't even do that.

 

Quite often I am told that I shouldn't be so critical of parents trying to cure Autism because I am so 'high-functioning'. Those people really don't know how meaningless being 'high-functioning' is when you live in a society like this.

 

Secondly look at the input of autists throughout history - Albert Einstein, etc. etc. etc. - how on earth can anyone have a bleak view of these individuals who have shaped mankind's history.

 

The cure-Autism lobby have an easy way of getting round that; deny it and ridicule those who might suggest it to be true.

 

I speak out against so much that is being tried by people who I believe are misguided and myopic. They use the False Dilemma fallacy to try and silence this:http://www.nizkor.org/features/fallacies/false-dilemma.html

 

They say that if they don't do 'this', their child will be doomed to 'that'. It's simply not true. Autism Society Canada and their likes can't understand how Autistic adults can help Autistic children; they're blind to the fact that the foremost world-experts on Autism are either Autistic themselves or consult heavily with Autistics: Tony Attwood, Simon Baron-Cohen, Carol Gray, Donna Williams and Lorna Wing.

 

I'm going to be singing from this hymn-sheet for a long time.

Edited by Lucas

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Lucas, that explanation was certainly something. I have had to re-read it a couple of times to really understand and to be honest, I think I will have to ponder some more.

 

I can honestly say I am not sure if my kids were born autisic - I am certain of the regression and the chain of events that lead to diagnosis, especailly for my son.

 

You asked the question earlier as to whether or not I would prefer my kids to be neurotypicals or high functioning autists, I tried to answer it, perhaps it did not come across too well. My kids are my kids no matter what they are and I love them. Yes, I would want them to be like everyone else, not for my sake but for their sake. This world is a tough enough place for anyone even if you are neurotypical.

 

As an autist would would it make any difference to you if you were to have a child whether that child were NT or autistic?

 

I did put down that I would want my son to make his own way in this world - isnt that what any parent wants for their child? I know a couple of aspergers adults who have successful businesses of their own, one in computers the other has an osterpathy practice (backs) (is that the right spelling?)

 

The facts are that I have two autistic kids and I just want whats best for them. At the moment I am really struggling to understand them, but at least I am trying - I am not trying to change them I am trying to understand what makes them tick and that is why I want to hear the opinions of adult autists like yourself.

 

I have found that especailly my son's autism has left us as a family isolated because of the attitudes of others (like family and friends). Its really hard because society expects and our kids just dont do that society thing - attitudes I find are that why should everyone else bother to change - they dont have the problem - its me and my kids that have a problem - my dad thinks Emma is spoilt so do my brothers becuse she screams and cries they just assume scott is retarded and suggest I should put him into care to give Emma a chance! But they genuinely believe that that is a viable solution. The amount of arguments I have gotten into with people who have criticsed my son especailly dont bear thinking about.

 

What do I do - they dont really want to listen about autism, they dont want to understand - they just ask will he get better? - this is what hurts me the most - we dont get the party invites and the social events that everyone else does. I find out after the event and get told, we did not invite you cos the kids would not have enjoyed it.

 

I am angry too Lucas, because as a parent I can see what is happening I love my kids and I would fight to the death for them but there is a long long way to go.

 

The key to society accepting autists is to get high profile autists recognised as such and perhaps the image of autism will be adjusted accordingly in society's eyes. At the moment autism for an NT parent is hard, because I did not know what autism meant when I first realised what was wrong with my kids. Because I had the view that society has. This is what needs to change.

 

Take care Lucas - I will re-read your post a couple of times to try and get it to sink into my poor old brain (which is mush at the moment)!

 

Its difficult cos I am so different from my kids yet they are still my kids.

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Thanks, Lucas...I find what you write extremely interesting and thought-provoking.

 

Do you think then that the severe problems people with 'low-functioning' autism struggle with (no language, bowel-problems, etc) are not part of their autism, as it were, but are the result of comorbid conditions?

 

In other words, that without any of the many comorbid conditions so many of our children have, they would still be autistic, because that is their true and fundamental essence of being?

 

Do you have any thoughts as to why so many autists present with comorbid conditions(ADHD, Dyspraxia, Tourettes, etc)? Do you think these are separate and distinct from their fundamental autism?

 

Do you mind if I ask whether you have any comorbid conditions?

 

Many thanks again, and I totally agree with you about the fundamental role of adult autists in research, etc.

 

Bid

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As an autist would would it make any difference to you if you were to have a child whether that child were NT or autistic?

 

A Deaf couple recently had a Deaf son, he was a 'designer baby'; they chose his genes specifically because it would give him a high chance of being born Deaf.

 

I have mixed feelings towards that; there is one big pro and one big con:

 

Pro: The Deaf Community have fought for a very long time for the rights they enjoy now, Autistics are nearly a century behind even. They have gathered to themselves a very powerful lobby to which they can protect their individuality and the characteristic which they believe is a part of their identity. The fact that they were allowed to do this shows they have escaped the downward social comparison(I say that a lot now) that plagues other disabled people.

 

Con: They are practicing Eugenics. Could they posses a downward social comparison towards Hearing people? Have they fought for their rights only to turn the tables on the Hearing? Perhaps I should stop being proud of being Autistic and start being proud of being Hearing to counter-balance their powerful lobby? Yep, I'll do that.

 

Their reason for having a Deaf baby is the same reason other parents would desperately try not to have a disabled baby: "He won't be able to have as full a life if he could hear; he will grow-up and live among Deaf people".

 

Oh dear.

 

It would seem that as much as the Deaf Community tried to gain acceptance by educating the mainstream about being Deaf, the Hearing will now have to educate the Deaf to stop them from discriminating against Hearers.

 

I openly disaprove of what they have done; when I balance the comfort of some against the acceptance of Eugenics, I am willing to sacrifice comfort and the comfort of others to prevent Eugenics becoming acceptable.

 

I have always been fearful of one day having children who are NT. I used to be fearful of having a Down's baby but after having an ample amount of contact with Down's people, I have found out that they have much better manners.

 

But I think I will try to take what comes; I might learn something.

 

I am not trying to change them I am trying to understand what makes them tick and that is why I want to hear the opinions of adult autists like yourself.

 

I'm very glad for that; a common excuse used by other parents is "You can't possibly understand what it's like for my child". They accept this as gospel truth up until the point I actually do help them, which I try to do often.

 

Bid,

 

Do you think then that the severe problems people with 'low-functioning' autism struggle with (no language, bowel-problems, etc) are not part of their autism, as it were, but are the result of comorbid conditions?

 

In other words, that without any of the many comorbid conditions so many of our children have, they would still be autistic, because that is their true and fundamental essence of being?

 

Do you have any thoughts as to why so many autists present with comorbid conditions(ADHD, Dyspraxia, Tourettes, etc)? Do you think these are separate and distinct from their fundamental autism?

 

Do you mind if I ask whether you have any comorbid conditions?

 

Many thanks again, and I totally agree with you about the fundamental role of adult autists in research, etc.

 

This is very complicated; a low-functioner will not always have what is typically described as 'Co-Morbids'. I call anything which is irritant to an Autistic Co-Morbid, but 'stressor' seems more apt.

 

The first set of problems for low-functioners are Co-Morids like bowel problems and intolerences. The second is social-enviromental stressors.

 

The first catagory is what the parents are best at; I stay well clear but listen carefully when someone informed speaks about them. My knowledge is in social-enviroment stressors because I have experienced so many of them. They include the way a room is set out, sensory input and people.

 

Few people realise that most poo-smearing by Autistics is because the Autistic is trying to wipe it off their hands rather than play with it. These are little things that NTs miss out because they can't read minds(it's a well-known fact that Autistics can, I think). They make a big impact on the Autistic. Because they are hardly taken account of, parents and professional focus on things like diet and biological stressors and Co-Morbids, but they only go so far.

 

I'm still learning about how the enviroment affects an Autistic, most of my experimenting is done on myself; testing what lighting in the room will make the carpet feel softer and all that. I may write a book one day.

 

As for my own Co-Morbids, I may have a wheat intolerance because I feel tired and my stomach sets on fire when I seem to have it, I'll get it checked soon. I am Dyspraxic (despite being a dance teacher), but that's not a Co-Morbid; it's caused by heightened touch sense, I know this because my handwriting is better when I have been drinking.

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I'm very glad for that; a common excuse used by other parents is "You can't possibly understand what it's like for my child". They accept this as gospel truth up until the point I actually do help them, which I try to do often.

 

Lucas, one thing I realised a long time ago I could not fight my children's autism. The values and behaviours that soceity imposes on children does not really fit an autistic child. My Emma for instance, when she was younger I tried to force her to do things like go to fireworks parties - and she freaked out and was hysterical, I was angry at her because I thought she was being awkward or naughty and I was determined to not let her get her own way. I remember when she lost her toilet training and I kept smacking her thinking she was being lazy and naughty. Now I realise why she did what she did. I just did not understand at the time and imposed the values I had had as a child on her. Big mistake! Although now I can negotiate with Emma I work with her rather than against her. Bribery works really well!

 

With my scottie, well - If I smacked him til I was blue in the face - he would still do his own thing. He really is a law unto himself. I really have stepped back from the "norm" with him so to speak. I have tried totally to change my ideas about right and wrong behaviours.

 

Its interesting that you said about the smearing. Scott has a couple of times approached me and started - what I thought stroking my back - still I smelt that pong and realised that he was in fact Wiping his hands!

 

Another thing I have been really dying to ask but thought it was stupid - its along the lines of the mind reading - scottie and I seem to have a connection on a level other than an every day one. A year ago my brother in law died suddently heart attack (in his sleep) in our house he was 43, scott would not leave him alone he had been staying for us for a week and scott had not bothered with him - that night scott insisted on going in the room and kept hitting him (as if to say dont go to sleep!) it was so weired. In the end I had to drag scott downstairs and secure the door downstairs to stop him from annoying my brother in law - he was screaming to get back up the stairs. The next day and since then scott goes in the room and babbles - almost like a conversation he appears to be looking at something or someone in the room. It freaks me out and I get him out of the room. Emma once slept in the room and she usually sleeps very soundly that night she was talking and having a conversation in her sleep. I had to go in and get her up and put her in with me.

 

Okay, perhaps I really am a bit crazy and do have an over active imagination but there is something extra I have specailly with scottie on another level, perhaps its because of the lack of spoken lanugage we have developed another way of communicating.

 

Do autists have other awarenesses - a sixth sense so to speak?

 

I have been wanting to ask this for ages, yes its okay, send round the men in white coats! :wacko:

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Carol,

 

I mentioned on baddad's post about hallucinations about a sixth sense. Since posting it I have rather regretted posting it because I thought that people might think I was mad even considering the possibility, but my son has had premonition dreams that can be verified and out of body experiences, he also seems to see things that others cannot see.

 

I mentioned in that thread that I had discussed this with his psychiatrist who said that it could be an ability that he possesses. I subsequently did some research on the internet and discovered that there is a body of thought that some autistics do indeed possess a highly developed sixth sense. I have recently, read a book by an autistic person, sorry can't remember the name, where she describes how she has experienced the trembling of the ground as earth quakes happen thousands of miles away. She has discussed these sensations with people long before the media have reported the disasters.

 

I think it is best just to keep an open mind and not dismiss any possibilities and if you need the men in white coats, then so do I.

Edited by Tez

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...... I thought that people might think I was mad even considering the possibility, but my son has had premonition dreams that can be verified and out of body experiences, he also seems to see things that others cannot see.

Tez, I am really glad its not just me.

 

I do have an open mind but as a child I had "experiences". I think kids are sensitive to things that logical closed minded adults would dismiss. An autistic child with sensitivities above and beyond the norm would indeed be more sensitive.

 

It is something I have observed myself especailly in scottie and never really paid much attention to it but there is an awareness there, he almost has another world kinda look about him sometimes.

 

i have often heard that asd kids have an etheral quailty about them - a special kind of beauty that attracts others to them

 

sorry must go, scottie sending vibes here, get off computer mum!!!!

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I don't actually believe in psychic power, but I know that there is a heavy association between Autistics and paranormal phenomena. This has a variety of roots in tales of supernatural origin, a good read is Elves, Autistics and Nazis, Oh My!

 

http://www.autistics.org/library/elves.html

 

Pay particular attention to the footnotes, especially changlings(historical resemblance to much of the modern day langauge about Autism).

 

I believe that psychic phenomena is the intuition of people working 'behind the scenes'; we dream because our sub-conscious is trying to make sense of the things that we can't, who's to say that there isn't a mechanism that does this while we are awake?

 

It's percieved as mystical because we don't recognise it or understand it. It's possible that much of the the phenomena with Autistics is because so many people cannot understand how an Autistic can be percieving something that they can't.

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lucas do you mind if I ask you if you are religious at all, do you believe in a god or all powerful being (in whatever form).

 

Sorry if I am being nosey - your previous post seems very logical so I just wondered if you have any beliefs.

 

I sometimes wonder about the universe and how vast things are and how everything exists in a balance - from the big bang theory and whether or not there are other dimensions (I believe in other dimensions) we arent meant to know everything for a reason.

 

I am not regligous but I do believe in something - cant tell you what.

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Reminds me of Terry Pratchett's The Fifth Elephant:

 

"Dwarfs are not religious, but the way they think about their bread comes pretty damn close."

 

I don't belong to any religion, but I don't dismiss them very readily either. Atheism doesn't actually stay true to the spirit of science; the most basic wisdom of science is to say 'I don't know'. I am Agnostic because I say I don't know and neither ego nor contempt for those who believe in something based on flimsy evidence will make me move to the opposite extreme and denounce the religious as fantasists. The fact is that Atheists are guilty of the same because they are denouncing the very principle of hypothisis; where a person must imagine something can happen and how before they can make it happen.

 

If Isaac Newton had not been able to hypothisise he never would have developed modern scientific principles and cavemen would only be able to make fire by waiting for the next lightening-strike.

 

I believe that refusing to reserve room for the most improbable possibility is not logical: Science and Religion are not incompatible. Stephan Hawking's Big Bang Theory actually made room for the existence of God to be scientifically valid; the alternative was that the universe never had a beginning, which would mean that God couldn't have created it.

 

The current scientific explaination for the universe being created randomly is Chaos Theory; the belief that all events relate to each other and the sum of the incomprehensible mathematical equation of all this is the universe we have now.

 

The problem is that the theory is unprovable(Like God) and self-sustaining; like 1+1=2, it is both self-evident but no more proof can be given other than the fact that it is self-evident(Like God).

 

When I started talking and learning math, a teacher first tried to teach me 1+1=2, I asked her "Why?".

 

She couldn't explain; it was self-evident, so she assumed that there was something seriously 'wrong'(she correctly assumed this was something to do with Autism, she incorrectly thought there was something wrong with it).

 

Chaos Theory is the scientific, unprovable *belief* that the universe is a well-balanced equation that looks like an endless blur of random events. It's also the only possible and objective alternative to religion, so many assume that it must be true because religion is the only alternative.

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ALL Autistics posses the same implicit self-posession that drives their identity, their development and perception. That is what Autism is and it is without variation.

Hi Lucas -

 

I initially started this response by quoting various sections of your earlier post, but in the end I was quoting so much of it that this, combined with my responses to the various sections, became unfeasible... Instead I'll try and keep it short...

I'm sorry, I cannot agree that every autistic person experiences the world from the same perspective, nor that high functioning autistic people necessarily have any greater insight than non-autistic people into the perceptioins of those who are more profoundly effected. The assertions you make are, as i said in my original post, based on your own 'reality', and every point you make after that is based on the assumption that your reality and that their reality share an inherent 'sameness' because they share an inherent root cause. To me, that logic is as flawed as any 'medical model' put forward by non-autistic professionals. While I agree that the 'world-view' may share a common starting point, I believe that outside influences (both 'outside' in the sense of the outside world and in the sense of personal attributes outside of the autistic condition) will have a huge impact on individual perceptions, and that these individual perceptions will continue to evolve as they, in turn, impact on the whole. That's not so far from what you were talking about when you mention 3D modelling and 'blocks of clay', except that I believe that the 'modelling' impacts on the 'whole' whereas you seem to be saying (and forgive me if I've got this wrong), that the modelling is purely aestetic, and that the 'core' remains unchanged.

Looking at the one quote i did use, Id say that the 'implicit self possession' you mention sounds remarkebly like Freuds 'Id' - and that's a starting point that autistic and non-autistic people share... The 'modelling' comes next, based on internal and external events that eventually lead to the individual development of ego and super-ego controllers, and this, I think, really is chaos theory at it's most potent, 'cos nobody can predict the final result!

So, ego and superego can't change the fundamental nature of 'Id' (for Autie's and NT's alike) but it can, and does, change the way that Id 'interacts' with the world, and can change (outside of Maslows 'basic heirachy' baseline) Id's motivators by implying imperatives that are totally individual and unique. Those unique imperatives, drives and desires (and the external behaviours they in turn provide) are something that we can only make 'educated guesses' at, and while your guesses include your valuable insights as an autistic 'insider', mine will include historical, genetic and personal insights that you cannot draw in to your equation... That doesn't mean that either of us are actually going to get it right, it only increases the probabilty that, in terms of our particular areas of 'expertise', we are less likely to get it totally wrong!!

 

I hope that made some sense... got to admit to being extremely tired tonight, so the old brain (never that reliable at the best of times!) is struggling uphill and against the tide...

 

Your other point, about MMR (or any other external factor) causing 'regression' rather than being an out and out "cause" I totally agree with - and I don't think many people would disagree, but I think it's somewhat academic... The difference between 'high-functioning' and 'profoundly disabled' is not, and that's the point I was trying to make with my 'broken leg' analogy.

 

L&P

 

BD.

 

PS: Thanks, Lucas (and Amy, Bid, CarolJ etc). Your posts as always are hugely interesting and thought provoking... Just wish I could keep up!

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I'm sorry, I cannot agree that every autistic person experiences the world from the same perspective, nor that high functioning autistic people necessarily have any greater insight than non-autistic people into the perceptioins of those who are more profoundly effected. The assertions you make are, as i said in my original post, based on your own 'reality', and every point you make after that is based on the assumption that your reality and that their reality share an inherent 'sameness' because they share an inherent root cause.

 

I think you have misunderstood; I didn't say that my perceptions, identity were the same for all Autistics, I said:

 

ALL Autistics posses the same implicit self-posession that drives their identity, their development and perception.

 

Autism is the implicit self-posession and it is that which is the same in all Autistics; the other aspects of the person are what makes them branch out so widely. I was low-functioning once, do people forget that? I have been many differnet 'types' of low-functioning and high-functioning too.

 

I have had a broad cognitive experience and I have large points of refference to work from that I'm often unable to find the words to describe. Autistics talk with other Autistics about this and so have I, our opinions differ from tiem to time but we realise that we actually have similiar ideas but different way of expressing them, which is where the confusion often begins.

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:wacko: Evening all!

Well i have to say i've read these posts and am scratching my head...

I will, if i may take you off the beaten track and bring you back several posts.

I just wanted to add that my son although high functioning is the hardest work i will ever have, i wouldn't change a thing about him. Of coarse there the fears and phobias etc etc i would rather he didn't have but all the same he is who he is, we are all who we are ( to quote BD) and as every day passes the more i learn and understand him and wherever i can i try and enlighten people on ASDs.

Carol and Baddad you've said all i want to say, and far more articulately than i ever could. You are wonderful parents, by god you should be so proud of yourselves and all you feel and do for your children. How can they go wrong? :groupwave::notworthy::notworthy::notworthy:

Ok guys you can carry on (it's all way too much like intelligent conversation for, i blame sleep deprivation. That's my excuse and i'm sticking to it!! If the truth be told i'm a few fries short of a happy meal at the best of times but SSSHHHH don't tell anyone.. :shame: )

G'night all,

Kirstie.

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wow ! my brain is now officially scrambled.

I already had a lot of these thoughts in my head , especially the ideas of autistic children already knowing something that hasn't yet happened or knowing what i' m thinking. I very much believe in the 'universal conciousness'.

But still this topic troubles me, the idea of a cure is not like finding a cure for cancer because we are not talking about a disease. I don't think there is a comparable in the disorder category.But I would still accept a 'cure' for the real-life problems that asd children face (I am a parent and therefore a different perpective, ask your parents, what would they do ?)

Am further troubled by the idea of screening, on reading my earlier post I realise my view is not at all clear ! I do state that screening would negate my entire immediate family. I did not point out that I didn't think this would be a good idea !!!

Life is not easy with a family who are all somewhere on the spectrum but at least we are all singing to the same tune ( soz about the cliche !) I tghink we have a wonderful family, I just wish that kid who keeps egging our front window thought the same !

 

 

wac.

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I think we have a wonderful family, I just wish that kid who keeps egging our front window thought the same !

Hi Waccoe-

 

Either consciously or subconciously I suspect he already does ... If he had something better to do than go round egging windows, don't you think he would be doing it? Probably targeting you because it's easier to make excuses about why, but fact is most people who get a buzz from making other peoples life's miserable are actually compensating for their own (well that's what Freud said, and she should know - she's a TV presenter!!) ;)

 

PS: Kirstie, thankyou. Just 'doin' the do' (god, that shows my age!), but really nice to know that someone think's I'm getting something right for a change. Bless you... :D

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baddad,

didn't realise you knew this particular child !

Am now trying the 'zero response' tactic and just go out and clear it up. Hope he'll get bored if he doesn't get me running out shouting, or worse, other half shouting at him. Worried he may move on to something worse.

This boy has adhd and is on ritalin mon-fri, at weekends his behaviour worsens and the other kids on the street egg (!) him on to do stuff.

Ironically we are probably the only family on the street with any empathy for him, everyone else already has his criminal future mapped out for him.

As usual have totally gone off topic, but did say my brain scrambled by this discussion. The depth of knowledge on this forum amazes me.

 

wac.

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There is a product you can but that coats the glass finely and makes anything run off, even water, so the egg would slide down and makes much less mess, I cant remember what its called, I think betterware sell it. Have a look for it, its not too expensive, its like a lotion that dries clear.

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Am i dim or what ?

Thanks Amy, i have been pondering your message all afternoon, it's just clicked !

I might well try to get some cos if egging happens when we're not in it can have dried and then is a b****r to get off. My other half took the 'zero response' thing to extremes and just left it on our wreck of a car, he only washed (!) it off when it had to go in for the mot !!

cheers,

 

wac.

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I think it there were two things on offer

 

Cure for Autism

 

Or for Society to accept everyone for their own merits

 

 

I would say the latter every time.

 

 

O and T are O and T first, autistic second.

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I don't want to cure my sons because I don't believe that they are ill? I would however like to make their lives easier and take some of their anxieties and phobias from them. So there are parts of their autism that they have difficulty coping with, that I would like to make easier for them. Does that make sense?

 

Carole

I totally 110% agree with Carole.

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:)

I agree wholeheartedly, as I look at autism as a personality type, not an illness.

I have Asperger, but I am not ill, I am fine.

I am proud of having Asperger - proud of the marvellous unique qualities that this personality type represents.

I try to cultivate my interests fully, and I am very happy.

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I'm deaf myself and would take a pill cure tomorrow ! I voted yes to a pill for my child too. I don't hold with disability maintainence, which 'total acceptance' of your issue will contribute to, and it will delay alleviations and future cures too. respecting an individual for what he or she is, goes without saying, but I wouldn't support the non-attention to cure aspect at all. There's a danger all this 'live and let live' of today, is deterring research. No matter how much we insist on being treated equally and respected it doesn't ever happen as we know, we just end up in enclaves, peering at those outside of it.

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And I will always oppose a cure regardless; the impairment percieved in Autism is not known but assumed. The debilitating effects supposedly caused by Autism can be replicated with any non-Autistic person when placed in an enviroment where they experience the same prejudices; Bettlehiem developed the refridgerator mother theory because prisoners in the Nazi death camps simulated Autistic difficulties.

 

Supposedly 'able' and 'independant' people use expensive and energy-consuming services which improve their quality of life, unless they are a hermit with no contact with society. There is no reason for disabled people to be singled-out for the same thing except ######-minded intolerance which the able-majority think is acceptable because they aren't on the recieving end of it.

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Perspectives, like choices are different between those being born with an issue and those acquiring it. One who acquires such issues is more able I think to adjudge which is more 'preferable', someone born with an issue is in no position to know, so will 'fear the unknown' we will know it. when you are a parent then you know how society works for, and against whatever issue (Or non-issue from your point), actually works in reality, and have to deal with ignorances in society, which (I know I do), try to protect our children from.

 

Whether you perceive yourself with that issue or not, we know mainstream will anyway, they will see whatever support or 'specialisation' you may need as negative, the very mention od 'support, 'social services' or 'special schools' all go against you, it's the rhetoric of total negativity towards those who don't fit the norm, and everything stems from that, there's the PC rhetoric, and there's the actuality ! Day one, you're not part of it. I've spent years debating this problem via people going deaf who hold the most heated, (and to my mind), most intelligent debates on what is or isn't a disability.

 

Deaf took a stance that no hearing is natural, formed their own 'community' (Perhaps autistics will, who knows), but the view from outside shows it is just a sidways move, not a forward one, so equality is really a relative thing. A prison is still a prison and doesn't vanish because you can't see the bars. Those that lost hearing obviously took a different view ! so it is with Autism or any other aspect, because wide differences occur in levels of Autism and individual responses, as they do with any other 'impairment', to discuss the issues properly you have to abandon political Correctness and say it how it is. be prepared to meet intense opposition and angst :tearful:

 

 

You say you wouldn't take a pill to cure, OK, NOW ! here's another pill, an antidote,will you take that option ? Now you can 'try' the norm' then go back if you want..... harder aint it ?

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I do wish people wouldn't invoke the branding of 'political correctness' when they indicate clearly that they have no idea what it really is or it's origins.

 

The origins of frankfurt school marxism are founded in the belief that langauge defines thought, thereby through outlawing certain uses of langauge, the spread of ideas can be controlled. This does nothing to combat original conception however, just the spread. The purpose is social engineering, but if you are going to apply the term political correctness to anything you see as merely an attempt to not offend a special group, then you are applying it always erroneously when you do so in the area of disability. It has always been Newspeak which has vilified the disabled, not benefitted them.

 

Now when this boundary is pushed back, it is erroneously labelled as 'political correctness', the truth is that it's the downward social comparison of the disabled which finds itself rooted in utopian frankfurt marxism.

 

There actually is already an Autistic Culture, same as there is a Deaf Culture, if anyone bothers to look. Like with Deaf Culture, it is in error to make sweeping claims about it such 'the view from outside shows it is just a sidways move, not a forward one, so equality is really a relative thing' when it will be made up of individuals who's ideas about their common identity will still be in flux.

 

I'm also a bit taken aback by your assertion that the reason why those born disabled(you assume this too) have different views about it than those who aquire disability later on is because they fear what they have never known. Apparently we no longer have thoughts and opinions of our own, you affix what you think we should think on us.

 

It could be just as easily said that the reason why people who aquire disability tend towards a negative view of it is because they had one before)with considerably more evidence showing this).

 

You say you wouldn't take a pill to cure, OK, NOW ! here's another pill, an antidote,will you take that option ? Now you can 'try' the norm' then go back if you want..... harder aint it ?

 

No, because I don't understand one bit of it. It doesn't seem to sink in with anyone: the impairment in Autism is assumed, not known.

Edited by Lucas

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Yes, you would rather have a very mixed up sad little girl without Aspergers than one with Aspergers.

 

The error has always been attributing the difficulties directly to Autism. Even in the earliest cases followed up by Leo Kanner, the failures have been where Autism was to blame and the successes have been where difficulties are accurately identified as mutual barriers between the individuals and their enviroment, seperate from the Autistic factor.

 

Those who are premature in their 'would do it in a second' judgement don't even know what it is they would be removing.

 

More information on Leo Kanner's follow up here:

 

http://www.neurodiversity.com/library_kanner_1971.html

 

It was when Kanner also suspected(not sure how strong he believed) that Autism was the result of the parents actions and behaviour towards their children, which may have prompted his suggestion that they be placed with other carers. The evidence of their improvement was likely seized upon by refridgerator mother theorists as proof that it was caused by bad parenting, but too much other evidence had come to light by that time for anyone to accept that.

 

Improvements in Autistic children have common factors in the historical evidence available if you know where to look.

 

Edited by trekster

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