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Comment on: “Why do autism ‘experts’ say such awful things?”

Shannon des Roches Rosa published a well-referenced and desperately sad blog this week about the scaremongering and self-aggrandising speech of all too many US “autism experts” (which then extends to the US media, as it seeks them out when planning a storyline related to autism.)
She asks why the harmful rhetoric continues. I have argued before that these false images have a damaging effect on the quality of life, and sometimes the life chances, of autistic people. The reasons for harmful rhetoric appear to quite often be about promotion of organisational profiles and fund-raising. Sadly, in the US this applies not just to those who may be selling interventions, but also to mainstream charities and university departments. And I suspect that a fair amount of the blame can be laid at the feet of marketing and PR consultants, who believe that there are so many messages out there competing for our attention that we must make ours extreme and memorable–even if that results in harm to precisely those whom the donations or research is supposed to help.
In the UK, greater involvement of adults with autism at the core of the National Autistic Society has resulted in organisational change, including visible and lasting change in both their messages and their mission. I would suggest that, while imperfect, the NAS holds up a model of how to talk about autism without creating a damaging discourse that demonises people with autism and encourages their parents to take desperate (and ultimately useless) measures.
And the way to change the message is clear: stop talking about autistic people, start talking with them. Start listening. And then start acting together.

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Comment on: Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture

Commenting on Matt Carey’s post (see reblog link) has reminded me that autism researchers and practitioners need to think about the worldwide impact of the discourses and approaches we promote. Devaluing people with autism is one product of the “autism industry” that I would like to see banned from export.

Left Brain Right Brain

I have an email alert from PubMed for autism. I’ve seen a few very problematic papers go by over the years, but this one really bothers me. The study is from Nigeria, home of much of the Yoruba people. I have not seen the full paper, but from the brief abstract it appears that the Yoruba people have developed moral principles that create an accepting environment for autistic children. They believe in “equality of humans at birth” and “solidarity”. The author of the study appears to take the position that “despite these justifications” there is a need for a “contextual rethinking” which would allow for aborting fetuses deemed to be at high risk for autism.

Note that there is not existing test to determine that a fetus is at high risk for developing autism. And even if there were, really? We need contextual rethinking to allow for abortion of…

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Brian Deer: Wakefield ‘MMR mother’ fabricated injury story

Brian Deer: Wakefield 'MMR mother' fabricated injury story.

What a desperately sad story for everyone concerned: the child, now a young adult who has been subject to unecessary interventions that wasted his time and made him more susceptible to harm, and who now faces loss of contact with loved family members, the family who have been ripped off and deceived to the point of self-delusion, and the staff members who have been manipulated and made subject to demands they cannot and should not meet.

It should be a serious wake-up call to parents, care staff, school staff, advice workers, health and social care practitioners and local commissioners, and raises thorny issues about both child and adult safeguarding.

I do have an additional concern, however – and that’s the issue of potential jigsaw identification. The way this case has been written about by Brian Deer and others, and the content of the court judgement (which in my opinion could have used nore redaction even though releasing it is clearly in the public interest), has provided enough details to fairly easily identify the family involved. Since it includes details of medical diagnosis and treatment–the person with autism’s and now his mother’s–this makes me uncomfortable.

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Lecture and Workshop topics

Lectures and Training That Inform and Motivate
Whether the target audience is parents, adults with autism, volunteers, or professionals, I can contribute to your conference, training programme, or lecture series. English is my native language, but I can also speak Dutch if needed.
I can cover many essential topics, including:
1. Autism awareness: an introduction to the autism spectrum
2. Evaluating interventions: Claims, cons, and common sense
3. Autism interventions and ethical issues
4. Education advocacy and planning
5. Tackling transitions and adult issues
6. Autism across the lifespan
7. Building a better world for people with autism and their families
8. Safeguarding and autism
9. Autism in the criminal justice system

Help, Hope, and a Sense of Humour
I can provide up-to-date information in many formats: lectures, question and answer sessions, panel discussions, workshops, and more. Carefully researched, accurate, and delivered in a down to earth, lively style, my presentations have covered a wide variety of issues related to autistic spectrum disorders

Some Recent Presentations
Autisme Europe/National Autistic Society EU safeguarding protocols workshop, London, UK, 2014. Presentation: “Safeguarding and Autism Spectrum Conditions: Protecting children, families and society.”

UK Health, Justice, Learning Disability and Autism Network (National Autistic Society/NHS/Cambian), London, UK, 2014. Presentation: “What health and social care workers need to know about autism and the criminal justice system.”

Vrije Universitieit Amsterdam Disability Studies series, Amsterdam, Netherlands, 2014. Presentation: “Insights from Autism: A Social and Medical History.”

UWV-SMZ/DSiN InCompany lecture series, Amsterdam, Netherlands, 2014. Presentation: “Self-employment and social enterprises for people with disabilities: Possibilities and cautions.”

Disability Studies in Nederland conference, Amsterdam, Netherlands, 2013. Presentation: “When ‘awareness’ becomes stigma: Representations of autism in charity campaigns and the media, and their impact on people with autism.”

Disability Studies Association conference, Lancaster, UK, 2012. Presentation: “Violence, abuse and the catastrophic model of autism.”

Edge Hill Autism Conference, Lancashire, UK, 2012. Poster presentation: “In-service training for staff at a special school for children on the autism spectrum: Factors in improving education, communication and practice.”

“Managing transitions within education.” The Autism Show, London, UK, 2011

BILD-accredited Level 3 ASD certification training, Oscott Manor School, Birmingham, UK, 2010-2011

“Autism and the Family,” Hillingdon Autistic Care and Support, London, UK, 2009

“Successful Inclusion Strategies for Students with ASD,” Inclusion: Effective Practice conference, Birmingham, UK, 2009

“Improving the Heath and Well-Being of People with Autism,” Glasgow University Medical School conference, Glasgow, UK, 2009

“Working with Children and Young People with ASD in the School Years,” Autism Today conference, Manchester, UK, 2008.

Customised Sessions
Custom-tailored sessions are my speciality. Is there an autism or disability-related topic your staff, members or clients want to know more about? Just ask—I would be happy to help.

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Free schools for autism: A step backwards in time

Today the BBC published an article linking Paul Shattock’s parent-funded school for autism, the first residential provision in the UK, to the new “free schools” being set up by parents under current government policy. Sorry, but this is hardly a positive link to make–and knowing Paul well (I used to work with him at the Autism Research Centre at Sunderland, he was co-supervisor of my PhD dissertation) being tied to this retrogressive Tory policy is hardly something he’s likely to be happy about.
Here’s the real link: 40 years ago, parents of autistic children (who were judged “ineducable” and therefore unworthy of state education) had no choice but to set up their own provision, begging for charity and even mortgaging their own homes to do so. Their children were denied equal rights to education and life in the community, and forced to attend segregated provision run by charities, provision that was (as the article highlights) dependent on parents running it as a second job and always one grant application or private donation away from closure. Paul’s effort was fantastic, and ESPA runs some very good provision, but recreating it in 2014 is very literally a step backwards in time for autistic children.
Parents today, in a post-Warnock Report, post-Education Act, post-Salamanca Statement world, should not be having to do this, and very few children on the spectrum, if any, should be attending segregated schools (and especially not residential provision far from their families and communities). Returning to the past is hardly something to be proud of.

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Announcing my new book – Autism: A Social and Medical History

There will be a launch at Sheffield Hallam University on 16 April – contact me if you’d like to come (it’s free). More information about the book, which is available in hardback and Kindle versions, from Amazon:

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My services as an expert witness

My services as an expert witness.

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My services as an expert witness

Sometimes autism impacts on a civil or criminal case. When it does, I am happy to help.


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The Autism Centre, Sheffield Hallam wishes you a joyful Christmas and a very happy 2013

The Autism Centre

Happy Christmas to our Autism Centre community. Here are some tips compiled by Emma Sterland (Guardian Professional 18/12/12) on how to make Christmas a time of fun and celebration for those who prefer their usual routine. http://www.guardian.co.uk/social-care-network/2012/dec/18/learning-disabilities-tips-family-christmas?CMP=twt_gu

Have a good one!  untitled


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Why I worry about the “American approach” to autism

It’s been 12 years since I last lived and worked in the US, and there are times when I realise how far my views have come from the days I, too, saw autism entirely through the lens of the medical model. Reading about how parents are dosing their autistic children with bleach compounds in a misguided and dangerous attempt to “recover” them is one of those moments. Reading through the comments below the article only deepens my sense of despair and makes me worry, as this approach is now spreading beyond the boundaries of the US. Such a lack of understanding of basic scientific principles, and a well-intentioned rejection of what passes for mainstream approaches in the US (i.e. the use of pharmaceutical drugs, also not the way to go but just a different route proposed for the same aim) that leads to abuse. Is it the lack of a coherent healthcare system? Is it the knowledge that having a disability in a country without a decent social care system for adults or social acceptance for being different really does look like a disaster to families? Is the fault of poor science education? Is it the “cure at any cost” rhetoric pumped out by Autism Speaks and other organisations with a similarly high profile?

And why is it that if suddenly parents of children with Down Syndrome were giving their children bleach internally and bathing them in it, there would be an uproar, but when parents of children with autism do so, there seem to be no consequences other than comments on a Web site?