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When deadly care failings are not ‘shocking,’ but predictable…

The Mazars review reveals shocking failings (well, they should be shocking) at Southern Health, an NHS Trust in which thousands of people with intellectual disabilities and mental ill health have died in recent years (including the son of one of my Disability Studies colleagues).
It’s not the first report to highlight the issue. These failings are shocking, but so is their utter predictability.
What can be done to turn the tide in an age of pretend-austerity, where the UK government takes away the relatively low-cost supports people need to live safely in the community, but is more than happy to throw millions at companies with high-paid executives, like Southern Health, to warehouse people away from their communities, in appalling and often deadly conditions?
More reading, from another parent: http://justicefornico.org/2015/12/10/the-1/

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Autism: A basic guide for prison officers

The National Autistic Society has recently published my guide to supporting prisoners with autism spectrum disorders. Currently it’s available to members of the (free) Network Autism site here

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Stem cell “treatment” cons and autism

The UK magazine Autism Eye has recently published my feature article about stem cell con operations targeting families of children with autism: https://www.scribd.com/fullscreen/231390619?access_key=key-qJ2qURxSdBCVYlveOtC3&allow_share=true&escape=false&show_recommendations=false&view_mode=scroll It’s hard to believe anyone would take such horrifying and costly risks–but having investigated this world, I think it’s marketing that is the key to this and other autism “treatment” frauds. As in the case of MMS and chelation, fraudulent stem cell clinics use the stories of “happy customers” as a front. What many people forget is that in the age of the Internet, it’s even easier to create sham “happy customers” than ever. This tactic is nothing new, of course–the same technique was used by pharmaceutical drug companies in the 1950s, which retailed stories of happy young mothers brought back to sanity via Thorazine, using photos posed by models and copy written by Madison Avenue. But while we’ve come to mistrust magazine and TV adverts a bit, many people don’t stop to think that a series of mailing-list or chat-room posts or a Facebook site purporting to be from a parent of a child of autism could also be an elaborate fraud. There’s also the issue of desperate parents (made even more desperate by the catastrophic rhetoric that surrounds autism) who willingly shill for con artists in return for receiving free or discounted “treatment” for their child.

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Assessment, assessment costs, and the public

In my work as an expert witness I am often asked to assess children or adults who are or may be on the autism spectrum, and who may also have a complex individual picture that includes specific learning difficulties, intellectual disabilities, problems with adaptive function, or additional disabilities. That’s time-consuming, but important so that the person’s needs are taken into account in court cases.

One thing I do find annoying is the high cost of assessment instruments. Like academic publishing, which makes millions for a few very large academic publishers out of work that was largely performed by public employees at public expense, most assessment instruments have been developed, tested, and validated by public employees at public cost, but then become earning opportunities for private firms. As a lecturer I know universities play a role in this, with their constant demands to monetise one’s work via “knowledge transfer” activities. And poor university salaries can also play a role, as a popular assessment instrument can become a perennial earner for those who created it.

It’s fair enough for those who created an instrument to benefit, but I suspect the taxpayer doesn’t get such a great deal in these arrangements. Reports in my own field often include information about why screening or assessment is so often ignored, and the cost to the already stretched budgets of public bodies is one of the most frequently cited reasons. A surprising amount of this cost is from the price of assessment tools themselves.

Perhaps this is an area where where a form of open publishing could be introduced, or where new media technologies could be used to ensure creators and their universities are reimbursed at a reasonable rate, without adding a high fee paid to outside firms. And in some cases, it would be fantastic if creators would make instruments publicly available at no cost–but could perhaps earn income from added-value activities like certified training.

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The art of writing an expert witness report

There’s some good advice in this article (including some from me): http://www.theexpertinstitute.com/20-tips-writing-better-expert-report/

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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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