Published on 12, July, 2020
Hi,
i have a weird concoction of ASD and mental health disorders and I was hoping there was someone else who could relate to destructive stimming? I self harm severely and it comes in many different forms, driven through a combination of OCD and ASD. I know I use it to wipe out all other stimuli as overstimulation is a big problem for me, it is also ingrained as an obsessive compulsive cycle and is NOT impulsive as most people assume. Has anyone else experienced the destructive side of stimming? How did you deal with it?
Unfortunately Even my new care coordinator doesn't "believe" I have ASD (I am female and it's often confused with personality disorders despite having an ASD diagnosis, psych always seem to jump to the PD assumption), has anyone else found that no one listens to them when it's not 100% obvious they have ASD? And even if they do they seem to have no concept of what it means. So far the mental health professionals I have known have not had a clue what it means and how it effects my behaviour and interactions. I am always honest and straightforward but they seem to take this as manipulation , like I'm trying to get them to do something or say something through deception whereas I'm genuinely being flatly honest.
i don't know how to explain the mental distress that I'm in without either physically expressing it or telling someone that "i am feeling distressed" but both these approaches seem not to work. I get told I should tell someone if I'm not safe, if I don't then it's my fault cos I didn't tell anyone, if I do I get told I'm "trying to get admitted to hospital" and that I need to "take control and responsibility for myself". If I tell someone I'm feeling distressed they tell me I have to come up with what might help.
Essentially I am between a rock and a hard place, does anyone have any tips on how to communicate distress so that it won't be dismissed or analysed?
Im sorry this have been a bit of a moany post, any advice would be gratefully received.
smeghead out
I can relate to your experience - over the last three years I have had significant difficulties with anxiety and depression, caused by my former employer, and my go to method to calm myself no matter how little distress I’m in has become to hurt myself. Sometimes I do it impulsively and sometimes I do it in a very deliberate and controlled way just to distract my mind from whatever is bothering me.
In the time I have had my difficulties, I have seen a counsellor, IAPT, crisis teams, psychologists, psychiatrists, CPNs etc. and not a single one of them demonstrated any understanding of autism. Many had never heard the word neurodiversity. One psychiatrist even told me I didn’t look depressed simply because I smiled at the beginning our meeting. When I asked if he diagnosed all of his patients on looks and had he considered the fact that I’m autistic and don’t display expected body language, he apologised and admitted that he was wrong to say what he had and that he should have thought about the body language issue. But why did I have to highlight this to the ‘professional’? The worst part is that some of the staff were actually abusive (physically and verbally) to me.
I begged in vain for two years to ask to see someone who understood autism and mental health problems, only to be told that there are no such services in my area, they can’t refer me to another area, they can’t make someone specialise, there are no suitable treatment options for me etc. I even tried to send documents to my psychiatrist regarding autism and depression, and specifically how treatment should be adapted for autistic individuals; but it was ignored. It was clear, they were never going to understand or be able to help me and in fact, our meetings were making me more miserable as they made me extremely anxious and I was never understood despite relentless efforts made by myself.
Given the above, about 6 months ago I withdrew from seeing mental health services completely, and I now have three formal complaints against them outstanding regarding their abusive care. Instead I see my GP (who does understand me more as I have seen her only for a long time) regularly and we discuss where I am. I’m coping okay with it, there are still times when I really want help but I will never ask for it again, because I know I will get abuse not help. It’s terrible really, but this is the best I’ve managed after all my efforts.
Have you tried searching online for articles from autistic people explaining similar issues to your own? - Sometimes I find that when I can’t express something well myself, that a fellow Aspie often can. Then you could show such information to the professionals you are seeing and explain that this is what you are experiencing too. There are a lot of autistic people on YouTube too, so there might be some appropriate videos to show them.
Im so sorry they are so useless!! That sounds nightmarish, I'm glad you are putting in complaints. I've had a doctor and several crisis team members dismiss me because I didn't "look" depressed. I also have the issue that I'm intelligent (I don't mean to show off - it's never been an asset, always a hinderence anyway) and they always a assume I have capacity and the ability to make my own decisions just because I'm persuasive and use complex vocabulary when describing things.
Your suggestion of online articles is an excellent one, I will delve into "wrong planet" and print off an article I found last week on destructive stimming. I think it was a Wordpress blog and the article/piece of writing was very good. I don't hold out much hope that my care coordinator will pay attention but a psychiatrist might.
thank you, and I wish you all the best, if you ever need to chat just send me a message
Thanks for your reply.
I too have the intelligence problem - when I communicate with the crisis team in an articulate manner they immediately assume I’m fine and just being manipulative in trying to detail how I’m not feeling fine. It’s extremely frustrating, and dangerous too - the crisis team sent me home and I immediately took an overdose on a previous occasion, because they didn’t believe me when I told them I wanted to kill myself as I was not visibly distressed at the time and could string sentences together. Madness!
I had a quick look on YouTube and wondered if this could be helpful to you alongside some articles:
https://www.youtube.com/watch?v=S4lhXidFPx8&app=desktop
I like the policy of bombarding them with information in the hope they might ‘get it’ eventually!
Best wishes to you.
The intelligence problem is an issue for sure. I had a psychiatrist who asked me if I had learning difficulties immediately after telling them I had Autism. When I told them about my IQ and previous occupations they said "You'll be OK, you just need a hobby"! Literally no accounting for the fact my clothes hurt all day, I have endless streams of information in my head and compulsions due to ASD. I'm way down the sensory ladder but intellegent and pretty good at communicating. It's frustrating the way that most MHT organisations have literally no resources dedicated to PDD's. It would save them time, money and resources in the long run.