Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website

23 Responses to “Don’t Write Me Off”

  1. Laurentius Rex October 13, 2009 at 21:34 #

    Fine for “them” the great and the good to speak for us, but had I been there I would not have been able to contain myself with contempt for our corrupt politicians who pander to the media in “criminalising” “th poor” and competing with each other to produce penal regimes for “job seekers” and “cripples” whilst perverting there expense claims.

  2. betsbetsbets October 14, 2009 at 14:16 #

    I really liked this video. Especially when contrasted with Autism Speaks’ dreadful “I Am Autism” , this clip was positive and constructive. I wish there were more organizations here in the US like NAS to counteract the general destructiveness of the juggernaut that is Autism Speaks.

  3. Laurentius Rex October 14, 2009 at 22:02 #

    The NAS is a mature organisation (even if they are a bit slow)

    In comparison Autism Squeaks USA is a spoilt brat.

    There are cultural differences, notwithstanding never mind the USA did eventually enter the war, they were never bombed (Pearl Harbour excepted) or suffered the privations and the subsequent wreck of the economy, the relative invulnerability of the US has led to a belief that nothing cannot be fixed.

    On the other hand the NAS started out with a pragmatic rights agenda, autistic kids were considered ineducable, and the parents wanted to sort that.

    The founders children are now as old as I am, and hard as it is to believe I am now a veteran and old stager of the NAS and my time has passed.

    The NAS did not give up without a fight, but I think my time is done with them perhaps, however I am fairly sure I leave a legacy, I just cannot believe they would be doing this had I not been a genuine gadfly (never mind Jonathan Mitchells pretence)

    I hope that this will be the legacy of my life if I were to die tommorrow, that I made a difference.

  4. Ari Ne'eman October 14, 2009 at 22:36 #

    Very interesting. I think we’ll turn our attention to things like this in the coming months to try and bring this message to the US.


  5. Laurentius Rex October 14, 2009 at 22:46 #

    Ari me old pal me old beauty, you are going to have to do for Obama first, whether he is one of the funny handshake people or not, Guantanemo is still open and even worse it does not belong to Cuba!!!

  6. Magnus October 15, 2009 at 14:29 #

    Talking politicians this map makes it real easy to find your UK MP and check if they are supporting the aims of the campaign..

    A petition tool is just a click away if they dont. The timing is important because if budgets are squeezed because of the fat cats and banking meltdown, it should not be taken from benefits and support for people who dont assess well or fit in disability tick boxes!

  7. betsbetsbets October 16, 2009 at 21:49 #

    Ari, I too would really love to see ASAN do more things like this– when my son was first diagnosed autistic, the only vids out there were Autism Speaks productions. They were depressing and not at all helpful: “Look how awful autism is– now give us money.” The clip ASAN did for the Marino Foundation was great, as is this one. And taking a cue from Laurentius, we need more pragmatism, more representation, more advocacy, and less talk of “cures”. I’m frankly a little excited to watch this sea-change happening in the autistic community.

  8. Robert October 18, 2009 at 17:24 #

    Good to see that the total lack of support for adult autistics is finally being spotlighted by NAS… This is what Polly Tommey and the Autism Trust have been campaigning for over the last year – I remember this very website slagging her off for it.

    Why won’t these different charities work together?

  9. Dwight F October 18, 2009 at 18:37 #

    A quick check back will show, Robert, that it wasn’t the end goal of support for adults that brought on the slagging. “This is all very admirable.” It was the fraudulent quackery that it appeared she would promote as the means.

  10. Dedj October 18, 2009 at 19:44 #

    “Why won’t these different charities work together?”

    Why should the NAS work with someone who has very different ideas about where autism comes from, how it can be treated, what services adult autistics need, where and how those services should be delivered, how this should be funded and how many adult autistics even exist?

  11. Mike Stanton October 18, 2009 at 19:53 #

    Good to see that the total lack of support for adult autistics is finally being spotlighted by NAS

    “Finally” Robert?

    I guess you missed Ignored or ineligible? The reality for adults with autism spectrum disorders. That was published in 2001. that was around the time that Autism File editorial advisor Mark Blaxill was writing to the BMJ deriding the notion that autistic adults existed and naming them “The Hidden Horde.” They are certainly hidden from the Autism File, which has yet to publish a photograph of an autistic adult on its cover.

    There has been an autistic adult elected to the Board of Trustees of the NAS for the last six years during which time autistic adults have been placed on an equal footing with parents and other family members in the running of the NAS. Dont Write Me Off has grown out of our previous adult campaign: I Exist. That helped to bring together 15 other charities who were happy to work with the NAS around the Autism Bill which for the first time will make it a legal requirement for local authorities to take account of the needs of autistic adults when planning services. By diligent work, mobilizing public support, lobbying MPS and an extensive programme of meetings with ministers and senior civil servants we and our allies have persuaded the government to adopt the bill, ensuring its passage into law.

    You ask “Why wont these different charities work together?” We have 16 charities working together. And one charity going it alone. Did Polly Tommey approach any of them before spending £500,000 on a billboard campaign promoting Polly Tommey?

  12. David N. Andrews M. Ed., C. P. S. E. October 18, 2009 at 20:34 #

    Thank you, Mike …

    and Dedj, too.

    Seems someone needed to get their facts straight, no?

  13. Dedj October 18, 2009 at 20:51 #

    And if she did approach those charities, would anyone have had a clue who she was?

  14. Mike Stanton October 18, 2009 at 22:07 #

    people know who she is. She is adept at promoting herself. She is also well known for her support for Andrew Wakefield who has top billing at a conference she is holding next weekend. I discuss it over at Action for Autism

  15. Dedj October 18, 2009 at 23:27 #

    I would have to question how well known she is outside of the biomed community and autism blogosphere.

    I’ve never heard Polly Tommey, the Autism File, the Autism Trust, DAN (US), GR, AoA, or the like referenced in any vocational, academic or professional setting, training, discussion or publication, except that which was produced by themselves or which is highly critical of them.

    It may be that you’re much higher up the chain than I am, but I’ve certainly not come across any evidence that Polly Tommey is as significant a mainstream player as her supporters like to claim she is. Most references I can turn up for her are either self-generated, or relate to her publicity campaign(s).

  16. Robert October 19, 2009 at 19:53 #

    Let me see if I’ve got this right, Mike. You are telling us that the paper ‘Ignored or ineligible? The reality for adults with autism spectrum disorders’ was published 8 years ago?! So what has been done to help autistic adults in that time? Not a lot. There is now an autistic adult on the NAS Board of Trustees – excellent. What practical use to other autistic adults was this? You have talked and lobbied and one day something might – or might not – become law.

    There are those who talk, and those who DO. Polly Tommey is a doer. That’s the difference. She’s going to get centres built where autistic adults can make use of their talents. She’s driven to raise the money – £10m+ – because she’s the mother of an autistic boy and she knows how important it is for him and for others. Incidently, she didn’t spend anything on the poster campaign – it was all donated by supporters – a billboard company and an advertising agency. And she has tried to involve the NAS…

    She promised Gordon Brown that she’d arrange a conference so that all shades of opinion could be heard and perhaps learn something from each other and try to come together. Polly Tommey was nominated for Woman of the Year and the Autism File is up for a Magazine Editors award.

    Let’s all try and DO something inbstead of all this negative talk, backbiting and jealousy. Beome a doer, Mike. Get something practical done that is of use to autistic people.

  17. Laurentius Rex October 19, 2009 at 21:05 #

    Polly Tomney is neither a doer, nor a realist, but a self publicist in the worst traditions of a latter day lady bountifull, all talk, newspaper articles but no substance.

    So she wants to build “institutions” for autistic adults to prosper in a kind of “seperate development” That sort of apartheid was opposed by the disability movement a long time ago, and when I say apartheid I mean it, one of the prime movers in the disability movement and the social model was Vic Finkelstein, a South African disabled person whose social awarness was gained fighting apartheid.

    Institutionalisation leads to abuse almost inevitably, Polly Tomneys solutions are victorian and have no place in modern society.

    It takes a long time to move the government, the NAS has done more than any autistic society in the world. If it were not for the NAS severely autistic children would not have been given a right to education, where was Polly Tomney then fighting those battles?

    There are no one man bands, progress comes through co-operation. I have spent nearly thirty years in one disability campaign or another, it doesn’t happen overnight, but with persistance it does happen.

    What has Polly Tomney done for me? Stigmatised me, continued the notion that we are sick and fixable by perpetual perversion of science.

    Those who work hard always live in the shadow of the narcissitic self publicists who can buy a reputation from people who have no shame.

  18. Mike Stanton October 19, 2009 at 23:28 #

    you do not seem to understand the obstacles we have faced in the past. The report, Ignored or Ineligible is a case in point. It highlighted the problem but was a campaigning document produced by the NAS and not a policy document for government. The following year we published another report, Taking Responsibility: Good practice guidelines for services for adults with Asperger syndrome. This was the result of a three year project funded by the Department of Health. But it was the NAS and not the government who published it and financed its distribution because the government was unwilling to take on the cost implications of implementing the guidelines.

    That is why the Autism Bill is so important. It was originally a private members bill. But it received so much cross party support that it is now sponsored by the government. Barring a snap general election it is guaranteed to go onto the statute books, alongside statutory guidance from the government that will make a difference at local authority level.

    I am sorry this has taken such a long time. I believe the crucial difference has been the alliance of parents and adults with autism. One autistic member on the board of trustees may not seem much but it symbolized the intent of the NAS to include autistic adults at every level of our activity. More than that, the qualities that Larry Arnold brought to that post were such that he was able to bring about significant shifts in the strategic thinking of the NAS because he sought to represent the interests of all autistic people. As a result our recent council meeting began an exciting new mission to explore ways and means for all autistic people to have a voice in the NAS, not just high functioning verbal adults.

    There is plenty of doing at the NAS. Your implied slur that we are a talking shop while Polly Tommey gets things done does not stand up to scrutiny. Read the Trustees Annual Report if you want to know more.

  19. Mike Stanton October 20, 2009 at 14:56 #

    Robert dismissed the work of the NAS thus:

    one day something might – or might not – become law.

    That day is Thursday this week when the Autism Bill receives its third reading in the House of Lords. On receipt of Royal Assent it will then become The Autism Act 2009. Then Robert might – or might not – stop carping.


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