Destructive Stimming / nobody's listening

Lol, thanks. I'll stop wasting my time trying to understand it now! Thanks for the heads up!

Cloudy Mountains said:

I'm new here so I don't know how to use the comment chain

Hehe, don't worry, nobody really understands it, it has a mind on its own!

No need to apologise. I'm new here so I don't know how to use the comment chain I was just apologising to everyone for going over ground that had already been covered. I think we are all in agreement though!

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.

"I don't agree with that" WTF!?!? That guy sounds as irresponsible as he is arrogant! Hubris doesn't even explain that! Which MHT are you under? You could contact PALS, they would probably jump at the chance to take action. PALS are like a complaint department. Legally you are a customer, that's why in memo's people are classified as clients. I'd push because they will give you excuses and treat you like you are being unreasonable but they legally have a duty of care if you are under secondary mental heath care. They are breaking section 29 of the 2010 equalities act. I'd contact an advocacy service first to see if they can liase. I've been through years of jumping through hoops with them. I suffer serious sensory problems. The psychiatrist who lied about having experience with Autism kept asking me if I heard voices in my head and tried to put me on Seroquel, a strong anti-psychotic. Autism isn't psychosis! When I finally did get to see a psychologist I was diagnosed with synesthesia which she said was part of my Autism, that psychiatrist thought I was schizophrenic because she had no knowledge of Autism. I think it's imperative that your Autism is taken into account! Keep pushing on! If you would like me to look for some advocacy for you, pm me and I'll have a search for you. All the best!

Cloudy Mountains said:

I'd not read all the replies. Seems like someone had suggested what I'd said!

To CloudyMountains: My apologies. At the time of my Posting, there was only Endymion's Reply, and so my following Post was just to support a certain Part of what was said, then.

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.

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

That sounds ridiculous! I'm sorry you had to go through all that but I'm glad you're now getting better support.

I have shown my care coordinator the letter that contains my diagnoses and his response was "I don't agree with that". ??!!?! I've known him for less than two months! I've asked for an appointment with the psychiatrist but care coordinator seemed very reluctant stating that the doctors are very busy. I will definitely take the letters when (and if) I see the psychiatrist, and I'm going to contact the people who diagnosed me to see if they have any sway.

thank you so much for your response, I really appreciate hearing about someone who has got through to their team and I wish you all the best for the future

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.

Unfortunately there seems to be very little provision for ASD in my area but I think contacting the people who diagnosed me is a great idea, thank you!

I'd not read all the replies. Seems like someone had suggested what I'd said! I had the same problem but I just covered the background too, just so I could give my experience and how it worked out for me.

I know what you are going through. I don't tend to think about self harm, I just spontaneously hurt myself when I have a strong overload. I'll be in a total state of overload and I'll grab something sharp or hard and jam it in my head or hit myself in the head. I had the same problem for about a 2 years with mental health services. I've had several breakdowns and mental health problems over about 20 odd years. I'd been under a clinic for about 2 years before I got my diagnosis. I told my psychiatrist at the time and he just said OK and went on as usual. My anxiety got worse over time and I got a new psychiatrist and I was explaining my experiences relating to ASD. She me she had worked with Autistic children for 3 years. Everytime I asked for help with my sensory problems I was told to ring multiple counselling services, none of which had experience with ASD. She even rang a homeless charity once! I s##t you not! I told the people around me she was totally inept but as she was a professional in their eyes they told me to let her sort something out. One day she said she had no experience with ASD after telling me she had 3 years experience with Autistic kids. She was basically a sociopath collecting a pay cheque. She eventually got fired and I got a new shrink. The first thing he said was that the last shrink wasn't even writing case notes for the last 9 months and that they had no idea I'd been diagnosed. He asked me for my diagnosis letter, I also got a letter from my AWM support worker to give him. Within a month he'd booked me in with a psychologist who fully understood ASD and put an action plan in place. She called my Autism support worker and they are now in liason with my mental health workers. I even got my synesthsia officially diagnosed too. I'd say make a copy of your diagnosis and take it to your next appointment and if you can get any other written evidence say from an Autism worker detailing your problems give them that too. If your psychiatrist follows up great. If not tell them that you have provided them with proof and they have a duty of care. I hope it works out for you. There are good people in the mental health system. Good luck.

Endymion said:

Could you contact the person or team where you were diagnosed ASD and explain your difficulties in being heard and listened to with your current care team?

Yes, Please try to do this.

Unfortunately ASD appears to be the lesser known of all of the conditions you mentioned, among professionals as well as the general public.

Do your mental health team have ASD specialists that you could ask to be referred to? Perhaps even counsellors experienced in ASD? They do seem few and far between but if you could access help from someone who actually does have some experience of ASD it would be much more helpful in being understood.  

Could you contact the person or team where you were diagnosed ASD and explain your difficulties in being heard and listened to with your current care team? Would your GP be easier to talk to about how you're feeling than your new care coordinator? 

I'm sorry that I can't offer any more help or advice than this. I wish I could but I just do not know enough about destructive stimming and haven't had my own ASD diagnosis for very long so I'm still learning about it myself.