Published on 12, July, 2020
I’m autistic, and I’ve been dealing with depression and social anxiety for over a decade, now. My family has been battling the NHS to get the little support I have now. I am wondering how other autistic people are finding the NHS.
My first issue is that there are no autistic professionals accessible to me, which means I’m having to try and educate every professional I encounter on autism. I’ve been struggling to properly understand what autism is, myself, so I haven’t been doing great. I’m thankful to have an Adult Autism Intensive Support Team that operates in my area, because they have now taken up the role of educating NHS professionals on autism, but that means I’m now having to hope these other human beings internalise what is said to them, view me as equal, and treat my problems as equally as serious as a non-autistic person’s problems, which has happened rarely so far, it feels.
My second issue is the interactions with the professionals who do not care that I am autistic. Having a psychiatric doctor laugh when I told him I was autistic, asking me if it was something I had read on the internet. Having an occupational therapist try asking me to separate myself from my autism. Medication being the solution, for the time being, while I waste years of my life terrified of the world around me. I wonder what else there is that I’ve forgotten to mention. I should document the things that make me feel miserable.
If I were a caged animal, I’d have somebody in my corner. Somebody would scream “This is neglect!” Unfortunately, I’m an autistic human, so I don’t really have that. I have a team of NHS employees in my corner, who aren’t willing to bite the hand that feeds them, verbally, of course. Who would be willing to criticise the one that pays them, that gives them what they need to make it to the next day? I’m trapped, because they’re trapped. I’m losing hope. I have no faith in the NHS, or in British society to force our political leaders, those whose jobs it is to serve the people of our nation, to come to the aid of any autistic person.
In short: I have no faith in the NHS’ ability to help autistic people. How about you?
Hi - I’m sorry you’ve been dealing with mental health difficulties and had this experience with the nhs. You raise a vitally important issue - in my experience and both my son’s experience (we all have an nhs diagnosis of autism) out experiences with the nhs (for both physical and mental health issues) have been far from positive. So you are definitely not alone and I have read so many things in this community forum that concur with that.
What’s needed is high quality training in supporting autistic patients for all nhs staff. Realistically though I can’t see that happening any time soon. Also I think nhs staff need training in the need for compassion and warmth when dealing with patients - as many staff are sadly sorely lacking in that respect. Being overworked and overstretched is a part of that - it mean the human being is often not treated as a feeling person but just as a body, a brain, and not a fully rounded person with feelings or even a history of trauma. What often forgotten is the human need for kindness and care. My youngest son had over a year of CBT for ocd and they barely helped him at all - often it made him feel worse. And many years ago I was given anti-depressants that gave me terrible side effects and made me suicidal. The most dreadful experience that destroyed my trust. Having said that last year I had therapy from the nhs for ptsd and I had a wonderful, kind and very gifted therapist who helped me so much. So it is possible! So I think it’s a very mixed bag and often depends on the character and nature of the individual staff member you happen to be treated by. But overall there is a huge lack of understanding of the needs of autistic patients. When I was in hospital for a serious physical illness 2 and half years ago I was shocked at the harshness of the experience in terms of the lack of sensitivity and understanding towards my needs as an autistic person - and I think it played a part in the fact that I had PTSD after that hospital stay.
I think often autistic people end up having to self treat their mental health problems. I’ve struggled with anxiety for years. What’s helped me in the last year or so has been studying Buddhism - especially the teachings of Thich Nhat Hanh and Plum Village. It’s helped me enormously. But we should be able to get good quality support from the nhs - and sadly that is so often not the case.