I received an invite to the National Autistic Society’s upcoming Women and Girls conference. And here’s the lines that made me happy:
“We are happy to announce that this year, all of our speakers and chairs are autistic women. Our speakers will be giving their personal insight as well as practical strategies and examples of best practice to take away. We are delighted to have Carly Jones MBE and BBC Radio regular and stand-up poet Dr Kate Fox delivering key talks.”
It’s about time, NAS–there are so many women on the autism spectrum who are now authorities in their various fields. Keep this trend up, please!
Conference link: https://nas-email.org.uk/YA3-6E8O0-0DELQ1MPC4/cr.aspx
I would like to share this lecture on an important topic, which I delievered to the National Autistic Society’s conference on safeguarding and autism: https://www.youtube.com/watch?v=CxgshGfFLK8
One of the nicest things about my current post is that I’m working in a transdisciplinary department, and that means having the opportunity to look at issues that are interconnected. One that urgently needs addressing is autism and health disparities, as outlined in the 2016 Westminister Autism Commission report: https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf
Drawing on research from Sweden and elsewhere, the Commission outlined ways in which poor access to everyday and specialist healthcare shaves decades off the life expectancy of people with autism. While those in institutional care are most severely affected–which will be quite shocking to those parents and referring practitioners who wrongly assume that being in institutional care means receiving more attention to health needs, not less (those of us familiar with institutional practices know better…)–but the findings hold true for adults living in family care or independently as well. And they are not related to autism itself, but to abuse, neglect, lack of appropriate care provision, poor communication efforts by care providers when working with autistic people, and mental ill health. And rather than seeing the latter as some intrinsic part of autism–it isn’t–it is imperative that healthcare providers, care providers and wider society take an honest look at their role in producing mental ill health, through devaluing people with autism (and especially those who also have intellectual disabilities and/or severe communication barriers), providing unequal opportunities in education, work, and the community, dismissing health concerns presented by people with autism or their parents/carers, and failing to take necessary steps to improve communication.
This is an issue I’m familiar with from the experience of family members, including one who has needed to use an advocacy service to gain access to quite basic healthcare via the NHS, and from the results of research in the UK and the US. Unfortunately, so far the responses to the issue have not been robust enough, and researchers need to look at factors not only within healthcare systems or institutional care, but in social attitudes towards autistic people.
In 2017 and 2018 I have had the privilege to work with the Athena Institute at Vrije Universiteit Amsterdam, teaching two courses on disability issues, taking charge of some important departmental reports, supervising student research. So far it has been one of the most enjoyable period of my working life. It has meant learning from students as they pursue research interests in areas that are new to me, and helping them fine-tune their focus on important topics like disability-related stigma and health (in)equalities.
I have also completed a major project for Disability Studies in Nederland: Included in Training and Work. Working with a group of international researchers, policymakers and disability activists, I supervised the research process, won funding for and ran a Lorentz Centre residential research and policymaking workshop at the University of Leiden, and edited the final result–a simple, clear, evidence-based document on including people with disabilities in vocational education and work. The document was presented to the UWV (Dutch benefits and work agency) in November 2017, and sent to many agencies, Disabled Peoples Organisations, and international organisations. Plans are afoot to create an expanded version in book form in 2018–watch this space!
And I’ve even been teaching Media Studies and Communication again, via Webster University in Leiden. It’s great to be working with undergraduates on media projects again, and helping them to improve their interpersonal communication skills.
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/
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
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.
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.
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.