Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

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49 Responses to “Polly Tommey poses as advocate for autistic adults”

  1. lilandtedsmum April 7, 2010 at 12:14 #

    Extremely well said Mike.

  2. Barbara Jacobs April 7, 2010 at 14:27 #

    I’ve supported you, Mike,on the Guardian website, and agree with everything you say about this loathsome self-publicist.

  3. Mike Stanton April 7, 2010 at 15:47 #

    Thanks Barbara
    it looks like the comments are going our way at the Guardian. apart from the usual suspects there is an actual discussion going on.

  4. Barbara Jacobs April 7, 2010 at 16:38 #

    Yes, there is, and it’s good. On some issues I don’t agree with the NAS and its way of doing things, specifically at local level(I went to the launch of our local NAS last year, and was treated to a video that members had made which ended with, ‘Some day there will be a cure for this and our beautiful children will be given back to us’!!!)
    HOWEVER, the I exist campaign was brilliant, the work on the Autism Act has been tireless, the cooperation shown by all charities has been exemplary, and then along comes this DAN self-publicist who says she done it all! You couldn’t make it up, could you? It’s insulting to people like you and my mate Carole who really HAVE worked. Anyone for a spot of graffiti?

  5. Barbara Jacobs April 7, 2010 at 23:33 #

    I’m doing what I can on the Guardian. Can’t understand what they’re doing by running this crap. But Dep Editor was at Oxford with my son and was/is his friend. Let’s see if it works. Hey ho. Got to pull out all the stops on the old boy/girl St John’s network, sometimes!:)
    My lad got into the top Oxford college, St John’s from a state comprehensive at the age of 17. Dep Ed knows him well.

  6. Kowalski April 8, 2010 at 02:56 #

    Thanks for the great comment, Mike.

    Reading discussions about what to do with us, always makes me feel like a piece of furniture, or a pet. If Polly Tommey is so concerned about our rights she should treat us like human beings.

  7. R J Seldon April 8, 2010 at 11:22 #

    I have so many issues with regard to lack of help from the medical profession. I have a son who is deeply depressed by his Aspergers which was diagnosed very late (24yrs) and all my GP says is that he is out of his depth and the psychiatrist says he is not an expert in Aspergers. Now my son is 29 and I am having to pay for weekly psychotherapy, but he needs so much help. Anything that anybody does to highlight how very sad it is for the suffering person and for the helpless family around him is welcome. If Polly Tommey is getting publicity for autism, I am in favour. We need so much more help. Where do we go? When we are at our wits end, who can we turn to?

  8. symball April 8, 2010 at 13:01 #

    R J Seldon.

    I think that the problem with Polly Tommey is that she and her husband are preying on people like yourself with expensive quack treatments that will only empty your wallet rather than help you with your problems.

  9. John Cox April 8, 2010 at 17:28 #

    Having just listened to Mrs Tommey talking to Jenni Murray on Radio 4’s Womans Hour I can only say all praise to the lady and I’m glad someone”s doing something to wrench this cruelly obscure and woefully neglected topic out from under the unnecessarily blinkered noses of our self-obsessed MPs. And, even if it took something as tacky as her posing for what looks to me like the softest and least offensive of soft-porn pics to do it, then adult Autism sufferers and their families (like mine) should give her a great big thank you for her initiative and support her all the way – rather than waste their own and everybody else’s time by trying to score off her with comments of predictably cheap disdain.

  10. Barbara Jacobs April 9, 2010 at 01:21 #

    Couldn’t agree more.

    They want to set up kind of ‘settlements’ in the country, where those with ASCs can be rehabilitated, beyond community, but within a kind of work camp, where the commercial Tommey nutritional facility will be available to all those paying the price. Mein Kampf?

    Let’s hope not. It’s a boob or two too far.

    Polly, we don’t want to know.

    Get it?

    The autistic community can do better than this – and does. Respect it.

  11. Mike Stanton April 9, 2010 at 17:05 #

    John
    the problem with Polly Tommey’s campaigns is that she launches them without reference to anybody else in the autism community beyond her own immediate circle of supporters. She presents herself as “just a mum” who is out there getting results while the established autism organisations are doing nothing. This is bound to cause resentment amongst people who put in a lot of work and are getting things done, albeit without her knack of getting publicity.

    When I read your comment about unnecessarily blinkered noses of our self-obsessed MPs I wonder are these the same MPs who got behind a private members bill on autism in such great numbers that it was taken up by the government and passed into law as the Autism Act. The MPs and the government acted because 15 different autism organizations supported by the Children’s Society campaigned for the bill to become law. Many of these organizations had members on the External Reference Group that was advising the government on its adult autism strategy. The ERG was chaired by Mark Lever, the CEO of the National Autistic Society. The vice chair was Anya Ustaszewski, a member of the Autism Rights Movement and an adult with Asperger syndrome. There were 37 other members drawn from the entire autism community; parents, autistic adults, professionals. Polly Tommey was not involved. Instead, with the help of a wealthy backer she launched a billboard campaign costing a reported £500,000 that got her a meeting with Gordon Brown at 10 Downing Street. Once the Adult Autism Strategy was published she appeared on GMTV suggesting that it was her campaign that had persuaded the government to act!

    Her current campaign is a similar operation. It is getting plenty of media exposure but what does it hope to achieve? There is another autism campaign related to the general election. It is being run by the National Autistic Society. The campaign page contains advice and downloadable material. There is an online letter with room for individual comments that is automatically sent to all the candidates in your constituency and plans for a post election follow-up with panels of voters keeping their elected member fully informed on autism matters. This is serious well thought out campaigning. When it bears fruit I fully expect Polly to appear and tell us it was her “Hello boys” campaign that did it.

  12. Janice William April 10, 2010 at 11:22 #

    I am disgusted, relieved however that Mike has brought this to our attention. Thank you Mike.

    Yes Polly (I wonder if she ever reads this?) ANYONE that supports Wakefield should be banned from speaking on behalf of autistics. And actually who the hell is she to speak on behalf of us anyway. I AM autistic diagnosed and verified :) I fought long and hard for my diagnosis so WHY isn’t Gordon Brown listening to DIAGNOSED AUTISTICS??

    Do the NAS support Polly? Can someone please clarify? Seems like the NAS did the ground work and she got the praise? She will be in the New Years Honours ‘for achievements with autistics’ next. Get me a bucket someone I want to be sick.

    GET LOST POLLY, there are enough of us around to be able to speak up for ourselves.

    I suggest John, you read a bit more, I don’t think you will be singing her praises when you find out actually what she is doing! Check it out and don’t be fooled by the nicey nicey attitude you hear,

    If we had excommunication in the Autistic World she SHOULD be booted out with ceremonial honours together with Wakefield and his disgraceful VILE gang.

    As A DIAGNOSED AUTISTIC I wish it to be known that Polly Tommey is NOT SPEAKING FOR ME OR MY CHILDREN. GOT IT POLLY? You are NOT wanted.

    Keep up the good work Mike, you have my full support and I will be spreading the word so expect some more support. Give an autistic a bone and they will chew it until there is nothing left…Polly is my latest bone :)

  13. Mike Stanton April 10, 2010 at 20:10 #

    Janice,
    while I appreciate your frustration with Ms Tommey and her continued support for Andrew Wakefield, wanting to ban her from speaking out on autism is neither possible nor desirable.

    As far as I know the NAS is not supporting Ms Tommey’s campaign. I notice that in the video for her “Hello Boys” campaign Ms Tommey states,

    “Why are so many people with autism living in pain? It is time to look at the safety of our vaccinations. This issue is not going to go away.”

    While there are members of the NAS who agree with this, as an organization the NAS is guided by the scientific consensus and I think it would be well nigh impossible to campaign jointly with Ms Tommey on the issue of vaccinations. Because she insists on including support for Andrew Wakefield and for biomedical quackery in all her campaigns, Ms Tommey is effectively going it alone and making it impossible for mainstream autism organizations to work with her. As this part of her agenda becomes more widely known it will only serve to diminish her influence with the media and the politicians.

  14. Kevin Healey April 10, 2010 at 20:37 #

    The recent campaign by polly tommey on face book

    There is allot of people who are saying that AUTISM can be cured on this campaign facebook page, i disagree Autism is a developmental condition, Autism cannot be cured by supplements, or any form of treatment, its really upsets me as a person with the condition that some parents are giving the wrong message out to other people.

    The FACT remains is Autism is not curable there are over 500,000 people in the UK affected with Autism, if there was a miracle cure don’t you think by now all these children and Adults with asperger syndrome and Autism would have been cured by now.
    My twin is 35 years old he has never communicated he can’t, he is simply locked in his own world, do you think if there was a cure i would have give him the magic pill or supplement by now to cure his Autism from Autistic to none Autistic!

    The leading expert’s on Autism say that there is no cure, so why are these parents telling others there is this magic cure with supplements, and biomedical intervention will cure there autistic child

    Kevin Healey
    Autism Campaigner

  15. Janice William April 11, 2010 at 18:50 #

    Hello Mike and thank you for replying to me. However I don’t understand. I am not being rude I promise, just autistic so clarification on a number of points would be appreciated. In advance thanks :)

    Why would it not be desirable for those of us with autism to ask her to shut up? Aren’t the autistics allowed to speak?

    Are you saying that there are STILL members of the NAS who support the vaccination debate? I am shocked.

    So if she is going it alone, why is that not being made clear? And she is claiming to be on a commitee isn’t she?

    I am either having a senior moment or am about to be shocked? Go on Mike, give it to me gently :)

  16. Mike Stanton April 11, 2010 at 19:44 #

    Hi Janice,

    I think it is OK for anyone to ask her to shut up. But that is not the same as saying she should be banned from speaking. We do not have the power to ban her anyway. What we can do is challenge her when she spreads misinformation and point out that she only speaks for a tiny unrepresentative minority of parents who still believe that vaccines cause autism and that Wakefield is a hero. In that way we can minimize her influence.

    There are still parents in the NAS who believe that vaccines damaged their child. Some of them have invested so much of themselves in this belief that they are immune to scientific argument. I know some of them. I also know that on other issues like education, respite care and support for adults they are very good and will campaign alongside us on issues like that without trying to bring vaccines into it all the time.

    Ms Tommey seems to be getting an easy ride because the NAS have decided not to indulge in negative campaigning. They would rather emphasize the positive things that they and others are doing. She may or may not be a member of the External Reference Group. If she is, she is just one voice among many and most of the other members have the experience not to be taken in by her.

  17. Barbara Jacobs April 11, 2010 at 20:36 #

    Mike, this isn’t good enough. There are parents in the NAS who believe that vaccines damaged their child?? What’s that all about? You mean that you, as an organisation, accept the view that autism is ’caused’ by vaccines? Is that not a problem? It could be a fundamental problem, regarding research, membership, and the position of autistic adults who are now classed as toxic?

    I’m now not too sure about the NAS. This isn’t a difference of opinion. It’s a sad message to every person with an autism spectrum condition. And PS, why does the NAS continue to call it a ‘disorder’?

  18. Janice William April 11, 2010 at 21:22 #

    Mike? Do you actually honestly accept that some of your membership can believe this rubbish? How do you think that makes us adults autistics feel? Shall we ask Lorna Wing?

  19. John Muggleton April 11, 2010 at 21:40 #

    Membership of the NAS is open to anyone. You do not have to subscribe to any beliefs in order to join. “By adding your voice you strengthen our campaigns for the rights and entitlements of people with autism and their families.” (from the NAS membership webpage page). Councillors and the board who are elected from the membership are therefore likely to hold a range of opinions on various topics.

  20. Mike Stanton April 11, 2010 at 21:53 #

    Barbara,

    I do not speak for the NAS but I do know that membership is open to anyone who has any sort of involvement with autism, either personally or professionally. The majority of members at present are parents. They join because their child is autistic. They fund raise, they campaign, they get help and support. The fact that some of them think that vaccines contribute to autism is no barrier to joining or receiving the benefits of membership.

    It is my opinion that this is the right thing to do. The NAS should give clear leadership based on the scientific consensus that there is no link between vaccines and autism. And many parents do not join the NAS or have left the NAS because they disagree with this. But the NAS cannot enforce its position on parents or make it a condition of membership.

    It is also my experience that a parent’s beliefs about vaccines are not necessarily a guide to their attitude to autistic adults. It is not that simple. I know some “true believers” within the NAS who are very supportive of autistic adults taking a leadership role within the organization.

    If we were to move to an ideologically sound NAS, who would be the arbiters? If we ban Wakefield supporters what about people who reject the vaccine argument but support the GF/CF diet? Do we ban people who are looking for a cure? Do we draw up a proscribed list of therapies – ABA, Options, RDI?

    There is a place for this type of organization. But the NAS should continue to be a broad church where diverse opinions about autism can be debated and discussed.

  21. Mike Stanton April 11, 2010 at 22:08 #

    Janice,

    They are not my members. They are members like me. I do not know how many there are. I expect they are a minority. I will continue to support the NAS in its efforts to make to make itself more welcoming and relevant to autistic adults. I think changing the organization as a whole is more likely to produce results than concentrating on weeding out a minority of reactionary parents. But as I noted in my reply to Barbara, just because parents are confused over the vaccine question, that does not mean they automatically become reactionary autism haters.

  22. Janice William April 11, 2010 at 22:53 #

    Do you have a diagnosis Mike? Sorry if that sounds inappropriate, but I am diagnosed inappropriate! And how many on the board are diagnosed? Just interested, I would gladly wave my Dx around, seems quite rare.

    Parents if they listen to the BMC (after all they are the experts) and hear that Andrew Wakefield has been discredited, then that is good enough for me thanks!

    So why is it not good enough for the NAS. Why can’t you just say, actually it’s all RUBBISH!

    Why? Thanks in advance.

  23. Barbara Jacobs April 11, 2010 at 23:30 #

    I’m glad you’re a broad church. Excuse me if my ethical position does not allow me to enter it. Never was one for churches of any kind. Not my scene. I have a strong belief in neuro-diversity, and faith in that position, as I am neuro-diverse, although not on the spectrum.

    ‘Confused over the vaccine issue’ is, quite frankly, fudge.There is no confusion. The issue has been proven. There is no link between vaccines and autism. Can’t the NAS be frank? Or does it have to take a ‘broad church’ position because it needs subscriptions, from whomever?

    I have now completed my PhD. It has taken me over three years of blood, sweat and tears, and I have had to sell almost everything I own to do this. I am 65. The autism community shouldn’t have to rely on passionate people like me to support what they think and feel and believe.

    But I did it. And today I finished it. (YEAH!!!!) And what I have to say, in it, is that there is, as Hans Asperger said, an autistic intelligence. And that this is perceived to be let down by every ‘supportive’ service in the UK .

    But then, what do I know? It’s just a silly research project that took me three over three years of penury to conplete. It’s probably pants.

    I bow to your superior wisdom. And a Wonderbra.

    Polly must have it right because she managed to buy advertising. Her fans must be right because they agree with her version of autism as toxins. And I must be wrong because I think that what she says is just celeb carp and vile beyond description.

    Woman of 62 gives up her entire career to do a PhD, because she feels so passionately about autism. Woman of 42??? buys billboards and advertising because she needs to sell ‘products’. Who’s going to win? Clearly the salesperson.

    And that’s what I can’t stand about the NAS. It never takes a moral position. That destroys those of us who care, and fight intellectually, and work,relentlessly, and are opposed to the girls who get their boobs, and crazy vaccine messages, out, for the lads.

    Does the NAS have an intellectual and ethical position? I’d like to know. Please give me a pdf about your ethical stance. And I can then send it on to Tony Attwood, Christopher Gillberg and every other world expert who has supported me.

    I have serious doubts as to the position of the NAS, which I shall air, when the time is right.

    Sheesh.

  24. Mike Stanton April 12, 2010 at 00:02 #

    Janice,

    I am not autistic. My son is. I joined the NAS about 14 years ago around the time of my son’s diagnosis. Eight years ago I was elected to the NAS Council. I have been re-elected twice since. There are around 45 members on the council. When I joined there was one person on council with an autism diagnosis. Now there at at least six.

    The Council has a largely advisory role in the NAS apart from its constitutional duty to elect the board. The board of trustees has 12 members and is responsible for governing the charity and has direct oversight of the work of the senior management team, who are professionals employed by the charity. For most of my time on council there has been at least one diagnosed autistic person elected to the board.

    I think you will find that the decision of the GMC is good enough for the NAS. But individual members are not obliged to follow the party line in this respect. And there is nothing in the rules that requires this or gives the NAS the power to impose this as a condition of membership.

  25. Mike Stanton April 12, 2010 at 08:15 #

    Barbara
    Congratulations on getting your PhD. There is hope for me yet.

    Regarding the NAS, it does have a science based position that there is no evidence that MMR causes autism. Remember the NAS is a charity that exists to try and meet the needs of all autistic people and their families. I imagine the charity commission would come down on the NAS like a ton of bricks if it was shown to be discriminating against parents or their children because they held unorthodox views about autism.beliefs

  26. Julian Frost April 12, 2010 at 11:49 #

    Mike, while I agree completely with you that banning people who subscribe to the discredited MMR Vaccine causes Autism hypothesis is neither wise nor feasible, I can perfectly understand why both Barbara and Janice want Polly Tommey to take a flying leap.

    I live in South Africa. Recently my parents came back from a trip to Cape Town with Issue no. 34 of The Autism File.
    The editor is Polly Tommey and one of the contributors was Andrew Wakefield (heavy sigh).
    On the front page was a header about using homeopathy to treat autism (WTF??) and the content was article after article on “Vaccines cause Autism.” There was also a claim that Wakefield had declared his funding from lawyers to the Lancet and an attack on Brian Deer (even heavier sigh).
    Worse, my mother appears to have fallen for Tommey’s BS (heaviest sigh ever).
    Even though Tommey has an autistic son, she strikes me as a fame whore.

  27. Journal Checker April 12, 2010 at 12:14 #

    Does anyone know why the Autism Trust Chairman, Oliver Jones, had his appointments terminated as director and secretary on 11th and 23rd January 2010, according to Companies House. His name has just disappeared from mention on the Autism Trust website. Oliver Jones is reportedly god-father to Polly Tommey’s son, and historically was a major presence, speaker and fund raiser.

  28. Janice William April 12, 2010 at 17:53 #

    Well well, this is turning out to be a very interesting debate. I am currently trawling through the BMC decision, my my it goes on and on. But already I am HORRIFIED at what has been PROVEN and yet is still up for discussion? Why? It is quite clear that Andrew Wakefield shouldn’t even have been WITH PATIENTS! In his role originally it was agreed there should BE NO CLINICAL involvement. I am only part way through but already just looking at the FINANCIES is making me shake with rage.

    I suggest EVERYONE reads this document. It can be found HERE.

    http://www.gmc-uk.org/static/documents/content/Wakefield__Smith_Murch.pdf

    There are 6 documents in all, so happy reading.

    And Mike may I be so bold to say. I have contact with someone who knows an awful lot about autism and associated conditions, this person tells me that as yet she has NEVER met a child on the spectrum without a parent on the spectrum, I should know it was only through my children that I identified who I was! I myself have 2 children both diagnosed. Up until a month or so ago I kept the fact that I had children diagnosed too a bit quiet. You don’t like to throw your kids into the limelight any more than they are already.

    But what I am learning is horrific to say the least. It is quite clear that the MMR has nothing whatsover to do with Autism. Fact. So WHY doesn’t the NAS come out and say that? Simple as? It aint rocket science. And the NAS is meant to be ‘informing’ ‘educating’ and supporting these families aren’t they? So let’s see the NAS informing us of the FACTS as heard by the British Medical Council (otherwise what the hell was the point?), and let’s see the NAS educating everyone that vaccines and mercury are nothing to do with autism. It is GENETIC! Which means some of us parents have to look at ourselves long and hard. Noone said it was easy. There is still chaos out there, parents not knowing what to think and what to do. You maybe think that many have got the message? But according to some statistics many single mothers with children on the spectrum have neither the time or the money to access themselves a computer and research all this. We need the NAS to come out and say exactly where it stands.

    And broad church? Ha love it. So how then does the NAS NOT accept anyone with a diagnosis of ADHD? My niece is ADHD and gets the door slammed in her face when my sister approached them. Go to ADDISS was the response! Why oh why can’t any of you join up and provide a service that actually helps! As from where I am sitting its all a mess. Noone knows what the hell is going on? Or am I missing the point entirely?

    Sorry Mike, rant over and none of it is meant as insulting or rude, I am just very angry right now. I don’t believe autistics are being represented correctly and I feel that the NAS is clouding many issues. We need TRANSPARENCY IN EVERYTHING, you are brave for bringing all these points to a discussion. Every child matters eh? Not where I live.

    And you are telling me that ONLY 6 people diagnosed on the spectrum? On a council of 45? That in itself is DISGRACEFUL, are we not worthy to sit with the the 39 ‘neurotypicals’? But thanks for the information.

  29. Mike Stanton April 12, 2010 at 21:58 #

    Janice

    I just checked the list again and as far as I can recall there are at least 10 councillors who have chosen to share their diagnosis not 6. We need more but for that we need more autistic adults to join the NAS. You are very much in the minority and our existing autistic councillors have all been elected with the votes of parents.

    Of course that begs the question of how the NAS can make itself more amenable to adults on the spectrum so that you want to join in large numbers. The NAS has made significant changes while I have been a member. But there is still more to be done.

    Regarding ADHD, unless it is formally added to the autistic spectrum there is little we can do. The NAS is formally constrained by the charity rules in this country. It can only raise money and spend it on helping people with autism.

    We do have a position statement that MMR does not cause autism. It is not strong enough as I said on my blog. Maybe that will change when the GMC finally reaches a conclusion. I hope so. Meanwhile, you are right. This is turning into a very interesting discussion about the role of the NAS and how it is seen by autistic people.

  30. Janice William April 12, 2010 at 22:23 #

    Thank you for your response Mike, yes very very interesting. And I have to agree to disagree with you in that I am in the minority! I think you will find that there are a lot of people out there who saying similar.

    Interestingly I see on the NAS website this statement? And I quote
    Conclusion
    Autism has been shown to be strongly genetically determined and research in this area is providing important new leads. Further genetic investigations should be highly rewarding not only in indentifying susceptibility genes, but also help in clarifying the role of enviromental factors

    So in MY opinion the MMR statement on the website is ambiguous. It is neither helpful or clear. Transparency as I said before.

    What happens when a child is diagnosed ADHD with underlying Autism? Are they allowed in because of their latter diagnosis? Or are they excluded because they have a co existing diagnosis? And how many pure autistics/aspergers/adhd’s have you seen? Certainly from what the organisation I am speaking to are saying, the mix is huge and noone is pure anything! So how can the NAS discriminate?

    And why would the NAS want even to tread the path as someone like Polly Tommey? Why would the NAS ‘support’and be seen to be listening to someone who is clearly supporting a discredited doctor? And do the public know this?

    And as for cures? When will everyone settle down and realise THERE ISN’T A CURE! Just like you can’t change your fingerprint or your DNA, you can’t change the wiring in your brain!

    It was hard for me to watch my 7yr old not talk, it was hard to look at myself and see similarities, but I couldn’t blame my kids for something I just knew was about genetics. Not when I looked at the rest of my eccentric family.

    A friend of mine says she knows of 3 family’s with 5 diagnosed children and another with EIGHT awaiting diagnosis. This is the pattern. And until parents step up to the plate and admit that actually it isn’t JUST their children who are presenting problems, their lives have been pretty chaotic in one way or another too. I had to take a long hard look at myself in the mirror with the help of an organisation near to where I live. Thanks to them at last I feel as though I know who I am. I wish all parents would do the same.

    Anyway Mike, I am still very concerned that MY perception of the NAS is that they are purely a political activist group? Fine by me but we need someone who can help on a day to day level. Someone who can help us searching endlessly from dept to dept for a hint of what to do to help? That’s all.

    The NAS would appear to have a monopoly on autism? Where is the choice? What organisation can offer diversity, non discrimination, just help and advice for ANY challenging behaviour. Why are some shut out? Anyway Mike I have made my diagnosis clear and if I appear harsh or inappropriate, blame my diagnosis.

    This is what Andrew Wakefield is reported to have said and I quote from the verbal transcripts of an interview held recently.

    And I said, I am terribly sorry, I know nothing about autism, how can I possibly help

    So how can you research something when you don’t know the subject you are researching into? Maybe his son educated him?

    My son Sam has just come back from teaching in an autism camp in Aspen Colorado.

    Sorry maybe I am just getting cynical in my old age? Just an opinion.

  31. Mike Stanton April 12, 2010 at 23:27 #

    Janice,

    when I said minority I meant that autistic people are a minority of the membership of the NAS, not that you represent a minority view. Sorry for the misunderstanding.

    Regarding ADHD and other diagnoses, it does not matter what else a person has, if they are autistic they can join the NAS or their parents can join if they are children. If you have a specific example of someone who was turned away and you think it was unfair discrimination let me know.

    The NAS is not just a political organization. It has stepped up its public campaigning in recent years but it does a lot more.

    1. It is a service provider that runs schools and care facilities that directly serve around 1000 autistic people.

    2. It provides a telephone helpline, education advocacy services, benefits advice and training for parents and professionals.

    3. It runs day services and social groups

    4. It runs Prospects, an employment service for autistic people.

    And a lot more besides.

    There are other autism organizations. Many of them have worked with the NAS on specific projects and campaigns. But the NAS is the only autism organization that tries to cover the whole country. It does not support Polly Tommey. Maybe it should speak out more against her ideas. That is a discussion we need to have inside the NAS.

  32. Janice William April 13, 2010 at 00:06 #

    Thank you Mike for your continued replies. Nothing is reassuring me however. Schools are failing children on the Autism Spectrum. 28% of children on the AS are being excluded FACT. Why? If the NAS is doing its job?

    Prospects? Aptly titled, so why is my friends Asperger son sitting at home holed up in his room after having flunked uni as he couldn’t cope? Where is the help for him and others? I can’t see it. All that is on offer is attending courses and appointments – BUT half of us are too autistic to attend? What’s the answer?

    Telephone help line? Tried that, not helpful. Who can we speak to at 8pm the night before school when our child is having a huge meltdown and refusing to go?

    Thanks for helping 1000 autistic people but what about the rest of us? Do we have to be a member to access help? Do we have to pay you? And how can I get to the lectures and conferences when I can’t trust anyone to look after the kids?

    Social groups? I can’t go to those, I get panic attacks. What help is there for me? THANKFULLY we have an amazing organisation who does precisely what PARENTS want and are able to manage.

    The NAS does NOT cover the whole country. Certainly not my part. And yes I can give you names of people who have been refused help. I can give you plenty with their permission of course. And yes I have experience with my local NAS group. I felt humiliated, bullied and got at. It was not a good experience and one that is shared by others.

    I am not getting it, not getting it at all. I want to know what the NAS will do to help me and my children NOW. Today? How to speak to school? Will someone come with me? How to tell the doctor how my child presents when actually I am autistic myself and I have difficulty. Who is going to help me Mike? Is there someone from the NAS who wants to book their diary out with hundreds of appointments or are they all in meetings discussing whether autism is genetic or vaccine induced?

    And please don’t apologise for the misunderstanding. That is why I am autistic, I should have a degree in it. But I am lucid and sane – I think! :)

  33. Barbara Jacobs April 13, 2010 at 00:49 #

    Hi Mike.

    I totally take on board what you’re saying. As you are a charity, you have to accommodate the views of your members,and you, as a member of the Board can’t deviate from those, as you are representative of your members. Accepted completely. Sadly your media position appears to place the NAS as representative of the views of all autism spectrum people. Is that right?

    So, what percentage of your NAS members are on the autism spectrum?

    Could you be so kind as to let me know who is speaking for themselves, and who is speaking “for” them?

    This issue of MMR has brought this entire matter into relief. It is clear that all research, and all investigations, have exonerated MMR as being in any way implicated in autism. Yet the NAS has refused to say as much. Why? Why has it not refuted Wakefield?

    This has wider implications. It means that some parents actually believe that their child has been destroyed as a human being by toxins. This belief does not belong in a broad church. It belongs in a rejecting and exclusionary paradigm. It means that parents refute the humanity of their children. They claim that there is an external attribution to their child’s difference.

    There are no two ways about this, Mike. Sorry.

    The NAS should be bolder in rejecting Wakefield’s ineptitude, failure in every aspect of ethical procedures, and the resultant dismissal of his ‘findings’. The rest of the world has done this. What’s holding the NAS back? Its mission statement is a finger of fudge too far.

    If this is a ‘belief’ that is held by some of your members, isn’t it your duty to tell them that they may be wrong? As its position now stands, the NAS tells the children on the autism spectrum, of these parents, that they may be toxic, and that their parents are entitled to reject them, as damaged goods.

    Is that an honest message?

  34. Janice William April 13, 2010 at 13:12 #

    So what pray tell is the NAS postition on MMR? Polly Tommey?

    As long as the NAS support her and her cronies, and it looks as though you are? I mean if you aren’t where is the statement to confirm? I am sorry but that leaves me with no trust in the NAS. It is simply misrepresentation and a complete avoidance of the BMC findings. For goodness sake Wakefield COULD be struck off in June? So where does that leave Polly? Hopefully she will drop off the autism bandwagon just as fast as she jumped on it. SHE DOESN’T SPEAK FOR US.

    And just because I am NOT a member doesn’t mean I don’t count! Or do you have to be a fully paid up member to be included?

    Getting mighty confused, frustrated and angry – is that what the NAS is all about? :(

  35. Mike Stanton April 13, 2010 at 23:41 #

    Barbara
    I am not a member of the Board. I am a member of the Council. As I wrote earlier my role is largely advisory. The Board have the statutory obligations to ensure the good governance of the NAS in accordance with charity law in the UK.

    I am attempting to answer people’s questions here as a reasonably well informed member of the NAS. I am not a spokesperson and my views should not be taken as authoritative. I am giving my opinion.

    I am not aware of the NAS claiming to represent the views of all autistic people. It is trying to represent their interests via its campaigning activity and to involve autistic people directly in planning and delivering those campaigns. But because the NAS has traditionally been a parent led organization it is still overwhelmingly made up of parents. I do not have access to precise figures but if there approximately 20000 members no more than 1000 are on the spectrum.

    This is not a satisfactory state of affairs when you consider the number of autistic people and their families in the country. We need far more members and we need to increase the proportion of autistic members.

    I agree that the NAS should take a stronger line on MMR. But for all its faults the NAS position statement does reject the notion that MMR causes autism. I totally reject your statement that

    the NAS tells the children on the autism spectrum, of these parents, that they may be toxic, and that their parents are entitled to reject them, as damaged goods.

    What twisted logic leads you to that conclusion? The parents I have met within the NAS who still blame the MMR do not reject their children. They do not regard them as toxic creatures whose humanity has been destroyed. There are people like that but I believe that they are probably a minority even within the anti-vaccine movement. And the NAS certainly does not endorse that view in any shape or form.

  36. Mike Stanton April 14, 2010 at 00:08 #

    Janice,

    The NAS does say that MMR does not case autism. It does not support Polly Tommey. It has decided for the present that it would do more harm than good to campaign against her and would detract from the positive message that the NAS is trying to get across.

    And I never said that only NAS members views count. Everybody’s views count.

    I get the impression that you are blaming the NAS for the problems that autistic people face in this country. I think this is unfair. That is a bit like blaming the RSPCA for animal suffering because it is not good enough at stopping it. The NAS is 20000 people trying to make a difference.

    It only helps 1000 people directly through its schools and care homes because that is all it can do with its resources. It cannot afford to build any more schools. All the places at these schools and homes are paid for by local authorities. You do not have to be a member to get a place. I could not get a place for my son because my council refused to pay.

    Prospects is an employment service that used to be subsidized by the government. They stopped funding and now the NAS pays the full cost. They only help a few people because they have not got the money to do any more.

    I know the NAS does not cover the whole country.It is trying to and needs more people to join and form branches. I am sorry if your experience has not been good. Often the people who join are parents of young children who do not understand the needs of autistic adults.

    Believe me the people i talk to inside the NAS know that they need to do better – to raise more money to pay for more services, to educate doctors and teachers about autism, to persuade council to provide more services, to get the government to pass laws that help autistic people. They want criticism that helps them do better. But just blaming them for all the problems is not fair.

    I am glad you do have a parents organization that is helping. I would like to hear more about that.

  37. Barbara Jacobs April 14, 2010 at 00:42 #

    Thank you Mike. You know that I trust you and believe what you say.

    However, if the NAS does not effectively, assertively, and honestly say that there is no proven link between MMR and autism, and never would have been were it not for Wakefield’s ethical mess of a study, some parents may continue to feel that their children have been ‘damaged’ and there is a possibility that they will be able to be, as Lovaas said, ‘recovered’ by efforts at ‘cure’ via methods like dietary intervention or whatever, that have nothing at all to do with the core characteristics of ‘autism’. Gut problems are a co-characteristic of some on the autism spectrum, as is intellectual impairment. These issues are NOT autism.

    Those issues must be dealt with separately, But these are messages that have been overwhelmingly co-constructed in the USA. Can we please stay out of their remit? Their belief in EIBI is totally flawed. Kanner’s original cohort shows an ‘emerger’ rate as high as Tristram Smith and others. Kanner himself says:

    “It must be kept in mind that our ‘emergers’ grew up in the days before the introduction of therapeutic techniques especially intended to remedy the autistic illness, be they based on circumscribed psychotherapeutic, psycho-pharmacological, or behaviorist orientation. Would any of these have in any way altered the outlook for our 96 children? Will any of those increase the ratio of ‘emergers’ in the future? What can we make of the fact, documented in this study, that almost 11 to 12 percent ‘got there’ without any of those techniques? (Kanner, 1973:212)”

    It’s important.

    More important is that the MMR was not given in 1943.

    Now, we need some mission statements by the NAS that are clear and honest. And we need some research statements by Research Autism that are clear and honest

    I don’t see any clarity from the NAS as to the international position on MMR, and the recent BMC position on Andrew Wakefield. I actually don’t see that at all. Why not? The guy’s research was rubbish, mostly on ethical grounds, and you and I know, Mike, that the first concern of Methodology is ethics. So why doesn’t the NAS just say it’s rubbish? Why hedge?

    And then there are the psychological issues which are rather more deeply problematic. If a parent chooses an external attribution – ‘ it was the vaccine what done it’ – the parent is more likely to reject the personhood of the child, and won’t accept connection. That can be a big issue.Can’t you see that? Parents blame external sources, child feels blamed and damaged by these external sources. Surely that’s not rocket science?

    The NAS isn’t being clean,clear,honest, and direct on Wakefield, and this is damaging, in so many ways, every person on the autism spectrum.

    Soz. It’s what I believe. But I don’t want to upset you.

    B
    x

  38. Janice William April 14, 2010 at 09:17 #

    No me neither I don’t want to upset you either Mike as I understand that this is YOUR opinion and that you are not representative of the NAS.

    I think on reading this thread though that the NAS DOES need to do a lot better before it can expect my money? WHAT FOR?

    Let autistics speak, let us tell the rest of society who we are and what kind of understanding we need. There are plenty of us who know.

    We have ONE qualified person here in the whole county. They are not employed by the LA and do if from the goodness of their hearts. Don’t you want to know about people like this. People who are on the phone 24/7 and that do visits at midnight to help in a crisis. That’s what we want, not all this written hardcopy that half of us can’t understand. Sorry but the NAS is failing the majority of the people I know and thats a fact. None of them have a positive word to say? So they can’t be bothered to join.

    MMR well I disagree, I don’t think the NAS is clear on its position. MMR should not be ON THE WEBSITE at all, only a statement to say that Andrew Wakefield and his supporters are all WRONG and lets see the facts. Why haven’t the NAS got the BMC findings on its website? Why?

    But Mike I don’t mean for you to get the flack and I thank you for your answers which you have given most politely and succinctly. Thank you.

    I do hope there is going to be some urgent meetings at the NAS, there needs to be. I am DEEPLY OFFENDED. The MMR wasn’t out in my birth year it’s all RUBBISH. We aren’t all toxic train wrecks and for the record I will come out and say it if nooone else wants to –
    ANDREW WAKEFIELD IS A LIAR, he is also a PROVEN LIAR. He mislead the whole world. His was the ONLY PAPER suggesting a link despite very many more saying he was wrong.

    ANDREW WAKEFIELD IS BEING SUPPORTED BY POLLY TOMMEY

    So anyone supporting these two charlatans doesn’t get my support SIMPLE AS. That includes the NAS.
    :) Sorry Mike, I hope you don’t feel this is personal, it really isn’t and I wish someone from the NAS would make a statement? Maybe you can make that happen Mike?

    ooh and one more thing to parents out there? STOP BLAMING OUTSIDE SOURCES AND LOOK AT YOURSELVES! I had to and so have many others. The problem is GENETIC.

    Thanks

  39. Kevin Healey April 14, 2010 at 21:04 #

    hi janice and mike
    Janice i hope my comment helps i have autism and like mike on the council of the NAS, the council is a sounding board only
    i too believe autism is not caused by the MMR, I THINK ITS GENETIC
    my charity SAAS http://www.saas.uk.com covers the whole of staffordshire, believe me i have been campaigning for the last 10 years for better services that’s why i set up two autistic charity’s in staffordshire, NAS do cover the whole of the UK, but like all charitys have limited resource in what they can do or cant do like SAAS dont get any funding from the local authority etc we have to rely on public donations and fund-raising ourselves we are one of the largest adult charity’s in The UK now for adults with over 170 service users, and believe me its not been easy

    im not sure where you are but maybe you and some others could set a branch of the NAS in your area i dont no what services you have etc

    reading some of the posts above, i personally don’t believe in biomedical intervention and i know some people, parents on the FACEBOOK site say autism can be cured through various therapies, read about it on my blog
    http://www.kevinhealey.net

    however i do think autism services have comeforward in the last 10 years and now with the first Autism Act in place the future is looking much brighter

    p.s there are quite a few autistics who sit on council meetings and there is one trustee who as asperger on the board of the NAS

    BEST WISHES
    KEVIN HEALEY

  40. Kevin Healey April 14, 2010 at 21:23 #

    im not representing the NAS hear as a spokesperson, but the NAS are fantastic in what they do such as campaigning, for people with Autism, and there prospectus service that mike mentioned, as well as there telephone helpline,An autism-specific quality assurance programme for over 260 organisations throughout the UK and across the globe including local authorities, NHS trusts, education authorities, local autism societies and private companies.
    Autism Helpline: general information service for all those affected by autism spectrum disorders in the UK. Parent to Parent Line: volunteer-run telephone support for parents by parents. Advocacy for Education is volunteer-run: Education Advice Line offers advice and information on special educational needs; the Tribunal Support Scheme is for parents wishing to challenge decisions.
    social groups are membership groups offered across the UK for people at the high-functioning end of the autism spectrum
    provide a range of services in England, Scotland and Wales for adults including residential services, day centres and assistance to live independently.
    this is just a few things that the NAS do like SAAS they are a charity not government run, or funded by LA’S etc
    best wishes
    Kevin Healey

  41. Barbara Jacobs April 17, 2010 at 00:02 #

    Good to hear from you, Kevin. I have a lot of time for you. However, you need to take this on board.

    “Some parents experience a lack of sympathy and understanding in the healthcare system on medical issues related to their child’s autism, notably in relation to gastro-intestinal problems. The NAS is concerned that the media debate around MMR does not negatively impact on access to healthcare for children with autism. Specifically, gastro-intestinal symptoms in people with autism should be taken seriously and managed in the same way as people without autism. We believe that it is crucial that health professionals listen to parents’ concerns and respect their views as the experts on their individual children”

    Did you sign up to that? Are you aware that gastro-intestinal problems are not greater in the ASC community than they are in typically-developing children?

    Who does your research? The level of research expertise in the NAS is a matter of some concern to me.

  42. Kevin Healey April 17, 2010 at 00:28 #

    Barbara im not a gastro expert however i do have IBS and GERD and A HIATUS HERNIA there is a family history of bowel disease – chrohns, however i dont believe in pumping people with AUTISM with supplements, and biomedical stuff, WHY one i have not seen any proved evidence that gut problems can be CURED, also many people like myself suffer from GERD without having AUTISM and there is allot of people out there who have auto immune diseases like CHROHNS, but don’t have autism- do i think that gut problems and autism are linked may be they are i dont know im not an expert in this field.

    however i have and tests done from the sunderland research centre for gluten and casein i was borderline, i dont drink or smoke and if i did take gluten and dairy out of my diet i would lead i vary boring bland life, plus i hate gluten free stuff anyway.

    i personally think alot of GASTRO stomach problems are cuased by the carp diet we have today and all the added additives and crap they put into food.

    also i think and this is my own opinion- that there are alot of company out there who rip parents off and people with ASD saying that they can “cure” there gut problems, and this is giving false hope to all

    best wishes
    kevin healey

    p,s could you explain this- Who does your research? The level of research expertise in the NAS is a matter of some concern to me.
    what research are you referring too?

  43. Barbara Jacobs April 17, 2010 at 19:12 #

    Hi Kevin!

    If I can run a VERY short form of my concerns by you, they are these:

    1. Some people believe that those on the spectrum have a higher level of gut problems than most. This just isn’t validated by research.

    2. Some people believe that the MMR ’causes’ autism. This is totally discredited.

    3. Some people believe (even worse!) that these two things are kind of connected and that gut problems are a part of autism and are ’caused’ by the MMR. The mind boggles.

    If 1 is not true, and 2 is not true, how could 3 be true?

    And the NAS is encouraging this connection to be made by the statement they put out. That’s my problem, Kevin. From there flow many others, like parents rejecting their children, psychologically, by adhering to this jumbled and ‘blaming’ set of beliefs. Research can refute it all – so why don’t we shout about what research is actually showing? Just tell it like it is, be honest, don’t pander to those who want to blame something. Autism isn’t a disease or a disorder. As long as we think of it that way we can’t adapt our OWN practices to envision difference, and then accommodate difference. So, we stop working on what WE can do, and start to believe that WE (ho hum), as the human race, have a duty to exclude and vilify and dis-ease our own contributing diversity, even in our own children.

    Can I get off my soapbox now?

    B
    xx

  44. Kevin Healey April 17, 2010 at 22:07 #

    yes i agree autism is not a disease its a developmental condition

    take care

    best wishes
    kevin

  45. Barbara Jacobs April 17, 2010 at 22:47 #

    It’s a cognitive difference.

    I presented at a conference in the USA with Temple Grandin, shortly after the New Orleans floods in 2004. She said, ‘If it wasn’t for the bravery of the Aspies and Auties in New Orleans, who put the protection of their systems above their own lives, New Orleans would have been doomed.’

    I agree.

    That’s what it’s all about.

  46. abdul May 21, 2010 at 12:55 #

    The N.A.S seems to have a half hearted approach to adults with autism. Most people with an ASD are diagnosed as adults. What happens to people who do not have parents to support them. Why are parents so involved ? Often services for adults are based on a childhood diagnosis. Planning for adults with autism should begin in childhood.

    Mark Lever, the MD and his predecessor wanted to work in a charity (Mark Lever worked for Ernst and Young before working for the N.A.S.

    The N.A.S seems to be a London based organisation. The most services are based in London.

    N.A.S campaigns have improved but they seem to suggest everyone is the same. There is poor communication within the N.A.S.

    Neuro – diversity is only now starting to be understood.

    Prospects have improved but they only place people a few people in long term stable employment.
    Some people need pre -employment. Their service has a maximum effect in London. The greater distance a person travels from London, the service has a smaller effect. The travel costs to London are often huge, there are fewer vacancies. They should suppport people who live outside London more effectively. Prospects generally does not undertsand neuro – diversity especially dyspraxia. People are almost placed in low skilled, low paid jobs and not achieving careers. If a person lives outside London , in the Home Counties, Prospects will have trouble placing them. Graduates jobs are fiercely competitive even before the recession, they are over – qualified for many non – graduate jobs. Graduates are generally placed in low paid, low skilled admistration jobs in London with no prospect of improvement, which is unsuitable for dyspraxic people (a substantial number of people with AS have dyspraxia). If a graduate with AS lives outside London, they have little chance of being placed in any long term employment. A substantial number of organnisations Prospects use are in the public sector. The public sector may not start hiring for up to 5 – 6 years. The organisation should encourage university students to undertake work placements. Prospects should be more flexible and dynamic.

    The N.A.S appears to want to treat every adult with an ASD in the same despite having different abilities, experiences, skills and qualifications. Ideally the person should be able to work, no a graduate with a childhood diagnosis of an ASD.
    The government, the social services , the job centre do a terrible job to help adults with autism. The adult autism strategy is very weak, better than nothing. The N.A.S needs to be more dynamic.

    We should be working together and with other organisations with flexibility in order to achieve the best possible outcome for people with an ASD.

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