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.
A really interesting paper and I’m glad it included statements from the study’s participants as it certainly heightened awareness that I am not alone.
“A recent study on autism language-use from the perspective of the UK autism community, found the term ‘high-functioning’ can underestimate the problems an autistic person can face on a daily basis (Kenny et al., 2016). Bowker et al. (2011)”
I found the above statement particularly pertinent re: high functioning. Wonder if anyone here can think of another term?
Also that double empathy problem is very real and the lack of ability to express needs and feelings... to carry on and keep “coping”, until you can’t, or don’t.
I'm intrigued when you say lack of ability to express needs and feelings. I struggle with this massively. It's not just because I don't know what to do or don't understand the feeling (sometimes it is). But other times I know what I should do/who I should go to but I just can't. I'm really funny about discussing any kind of need or feeling. I don't even like telling people when I'm not well. I've never understood this part of my behaviour.
This quote really summed up how I feel:
I am high-functioning and an adult … I feel ‘lost’…. I am toohigh functioning for most ASD programming in my area, butnot neurotypical enough to function well in conventionalwork and social situations and environments. (650F)
Graham said: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.
Another factor could be related to age. How many of the 280,000, I wonder, are late-diagnosed - like myself - and have therefore much more work to do in trying to unpick a lifetime of 'faulty' emotional responses (compounded by co-morbid mental health problems)?
I have written to Sarah Cassidy, mentioning my own case briefly, and saying that I currently feel on the edge of breaking down completely. Even with trained professionals, such as the ones offering me support at work, the focus is still on behaviour management rather than on trying to gain a proper understanding of perceptions and responses. I think they are probably getting tired now of my constantly sending them papers relating to research studies. The tendency for them to 'normalise' my experiences - to see and assess them solely from a neurotypical perspective - doesn't increase my hope of a broader understanding.
I dislike the terms 'low-functioning' and 'high-functioning', and I guess most of us do. Most professionals and academics I've spoken to also dislike them. I suppose it's a convenient and easily-understood shorthand, though. A bit like 'meltdown' - another term I dislike.
'High-functioning' implies a relativity to something. Unfortunately, that something usually seems to be 'low-functioning' rather than 'neurotypicality'. It still misses the full picture, though. It's about difference, not dysfunction. Just as we don't lack theory of mind necessarily, but instead have a different conception of it.
When I tell people at work that I have more in common with our service users that with my colleagues, I'm sure it's dismissed as nonsensical. Look at the things I can do that they can't!
I wish I could think of better terminology. I ought to be able to. But I can't.
This discussion really resonates with me. Over the years I often felt deeply connected to autistic people with severe LD and alienated from NT people who appeared to have more in common with me. As I was reading the thread one of Stevie Smith's poems came into my mind: https://m.youtube.com/watch?v=dKUt1UPwzXE
A late diagnosis may give an explanation for past difficulties, but given the lack of support, is unable to offer any promise of a better future, nor relief from the grievous sense of loss and waste.
Yes, that poem resonates with me. And another example of Robert Smith's literary allusions with his song, The Drowning Man. https://www.youtube.com/watch?v=bbVcP_Mo9nM
I've told them that I feel I have more in common with our service users than with my colleagues.