There is a new paper out entitled, ‘‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality.’
Thanks for posting this, Graham.
3 things I've heard this week at work:
1 - a colleague referring to an autistic service user: 'She needs to learn that she can't always do the things she wants to do on the day she expects to do them.'
2 - another colleague referring to another service user who is hypersensitive to sound, when she covers her ears as an ambulance passes with sirens going: 'You'd think she'd have gotten used to that noise by now and not be so affected by it.'
3 - a member of the behaviour support team, writing to me about my recent problems with bullying at work: 'You are definitely not the first person to have some struggles like this at work, neurotypical or diverse it is a very normal thing.'
Bear in mind that I work for a charity specialising in care for autistic people!
No - we don't get support. Or proper understanding.
It’s good that the problem is getting some recognition, but I’m rather disappointed by the lack of detail. There may some supplementary information I missed - I downloaded the pdf.
Going by NAS statistics there are 700,000 autistic people in the UK. According to government statistics approximately 20% of the UK population (66 million) are under 18, meaning 560,000 of the autistic population are adults. Again, according to NAS statistics, approximately 50% of the autistic population have no intellectual disability. Which means, according to my maths, this research is addressing the problems encountered by 280,000 people.
I can’t find the criteria used to classify treatment or support. I assume anti-depressants count as treatment, but maybe not. CBT is mentioned as being useful for some people, and not for others. Whether this is due to some individuals being more responsive to CBT than others, or because of a regional disparity in quality or practice is not explored.
It’s always easy to criticise, and I’m sure the researchers would far prefer to have the wherewithal for a more comprehensive survey. I just hope that this report will at least draw some attention to the appalling lack of support available for a group of people twice the population of Brighton.
Following on from this, the NAS and other bodies estimate that only 38% of diagnosed autistic people are in any kind of paid employment. I think this figure would certainly include people who do have an associated intellectual disability. There are plenty of places like one of my local supermarkets, which employs such people for store cleaning, trolley collection, etc. On the other hand, there will be plenty of us with no intellectual disability who are not in paid employment. So let's, for argument's sake, say that 250,000 of diagnosed autistic people are in paid employment.
Latest figures indicate that 33.4 million people in the UK are in paid employment.
By my maths, that makes us 1 in every 133 of the workforce.
No wonder we feel so outnumbered.
(It kind of adds up, actually. The charity I work for employs around 150 staff. I'm the only autistic one.)
What about the undiagnosed who are flying under the radar and maybe struggling!
We’ve seen many adults join the forum seeking out support and a diagnosis.
me - first diagnostic assessment in March. Full employment history for the past 20 years.
Currently in receipt of support for anxiety and depression.
Yes, of course - the figures are much worse. I was only going on the figures for diagnosed people, based also on Graham's figures. Before my diagnosis, I had a reasonable employment history. But I'd struggled with many jobs, and had a total of 3 years not working in 20 years - mainly for depression, anxiety and stress.
I've amended my comment.
Yes, your maths was good based on the figures published ...either way it’s scary re: people not getting to appropriate support or struggles recognised an acted upon.. or even means for those that struggle to comfortable articulate their support needs
It was horrible pre-diagnosis, because I had no idea what was wrong with me. The best a GP ever came up with was 'endogenous depression' - which MH services later 'traced' to alcohol misuse (even though, at the time, I wasn't misusing alcohol!) But even with the diagnosis, and with the insights I've gained into my condition, I feel alone in struggling to get even trained professionals to grasp things. When even a behaviour support manager resorts to 'normalising' my responses, what chance do I stand? Or anyone else, come to that?
I'm meeting with him later this week. His first words will probably be 'How are you feeling now?'
Fed up. Fed up with this situation. Fed up with not being listened to. Fed up with feeling like a weed. Fed up with feeling like a liability. Fed up with NTs and their stupid power games.
Fed up with being autistic.
I was under the radar for 61 years. It’s the same for many people my age, I suspect. My first contact with mental health services was after a suicide attempt. During my incarceration in a mental health hospital, I was diagnosed with autism. The psychiatrist told me not to use the word ‘incarcerated’, even though I was told by a health worker after meeting him for the first time in A & E, that he would section me if I didn’t go. He had met about 30 seconds previously to making that judgement. After 25 days in the hospital, I was judged to be no longer a suicide risk and released.
Support is non-existent. It seems to be either incarceration or nothing. What really annoys me is that a study like the one above is just stating the bleeding obvious. The result will be a web site that GPs etc can refer to. I can’t see the point if no extra help is offered. There is no end of research into finding the neural correlates of autism, but to what end? Psychiatrists and psychologists appear, to me, to regard our brains as interesting to study, but are utterly incompetent when it comes to any form of treatment. ABA is basically Pavlovian in principle, in other words antiquated. It’s kicks up the backside for the lot of them. Rant to be continued.
A holistic individualism programme of support would be helpfu.
you crashed a burned Graham and got picked up and processed and spat out again. Do you feel supported now?
Back in the summer, I attended a workshop (run by the autism team of my local authority) which was designed to bring autistic people together to discuss a new strategy aimed at improving mental health support for autistic people. I think the team was pretty overwhelmed with the bombardment of complaints and stories from the bunch of Aspies present. I haven't heard any more about the project, anyway.