MH services and ND

[ShiftingSands21]

I have read a few experiences already on this board, and had several of my own, which suggests that so often mental health services fail to take account of neurodiversity. At a basic level, especially for women, it seems like so often mental health services fail to suspect or carry out any screening as to whether there may be neurodiversity present at all and people get wrong or incomplete diagnoses as a result. Even if a person has a diagnosis, it then seems like there is no differentiation of care and treatment that takes into account the needs to ND people. Services also don’t seem to be joined up. I would be really interested to hear people’s experiences and what should have been done better and also when things were done well.

I noticed this has been missed so I'm bumping for you

Unfortunately my own experiences of the mental health services haven't been very good. I had doctors and psychiatrists tell me all the time it was "just anxiety". I also had an impatient stay in hospital a few years ago after what I suspect now was burnout

I won't engage with MH services because they're all patronising idiots who know sod all about ND.

I have to agree my impression is they know sod all about ND.

Personally I guess for me, I was first in CAMHS age 5 and have since presented to various services every year or so since and I just can’t understand how no one ever thought to investigate further than depression/anxiety or just be even the tiniest bit curious.

I figured out I had ADHD myself from reading and then got a private diagnosis. I knew little about the condition for so many years and just assumed based on stereotypes that it couldn’t be relevant to me. I can see so clearly now how it has affected me profoundly all my life - how it basically IS me.

My NHS psychiatrist doesn’t accept my ADHD diagnosis and almost gave me the impression that he believes ADHD to be not real. I’m honestly not sure what to think - our appointment left me bewildered. I made another thread about this!

Looking back I now think I can see some of the reasons why CBT never really solved my problems, for example. It seems to rely on a linear word-based thought process that I often don’t have. It doesn’t seem to account for the fact that my mind tends to run many times faster and more creatively than my ability to grasp it. It doesn’t seem to take into account the sort of physical nature of the surface “anxiety” related to ADHD. I don’t know if this sort of thing resonates with anyone else? But then if CBT doesn’t work for you they seem to treat it a bit like you failed, and never imagine that the process might not be applicable for you, or not tailored to you properly. Because apparently everyone must experience the same thought processes so you just aren’t trying hard enough, or something.

Also, so often, I was having to kind of make up a narrative that wasn’t really true in order to have something to work with for therapy. Because I didn’t know I had ADHD, then I was having to explain problems in terms of external factors or anxiety or beliefs about myself or trauma that just weren’t really the case but that’s what I was being fed and I couldn’t make sense of the actual problems I was having because no one offered me language for that.

The whole thing is exhausting.

I think neurodiversity has thrown a spanner into the works of psychiatry and mental health services. So many ND people experience mental health difficulties almost as a matter of routine and the services are nowhere near catching up. They're letting masses of people down. I'm not even hopeful that they have the intellect to address the issue. It takes a certain type and level of intelligence to comprehend and understand neurodiversity and so many of them are solely lacking. My son's paediatric psychiatrist claimed that ds wasn't autistic because he could maintain eye contact and hold a two way conversation. I mean you have to be a particular type of stupid to peddle this crap and this is from a consultant.

Like I said, cognitively lacking.

It is properly scary that powerful people can spout actual nonsense, like the consultant who saw your DS. It’s rage inducing.

@ShiftingSands21 I honestly feel I could have written your post because my experience was almost identical. I was always a very sensitive and creative person, but my mind was always going 100 miles an hour. I found that CBT did nothing to help me and any doctor or psychiatrist I ever went to said that it was depression, anxiety or trauma. I have trauma which is related in part to abusive friendships and relationships I have been in and also the lack of understanding and empathy in general for ND people.

As @BarrowInFurnessRailwayStation said, i was also told that I couldn't possibly have autism because I maintain eye contact and can hold a 2 way conversation. These narratives they have are so outdated and ableist

@kobacat1981 so sorry you have had a difficult time and had similar experiences. Thank you so much for sharing. It is very reassuring to me to hear that my experience does resonate with someone else.

Personally I don’t like the fact that neurodiversity is under mental health services at all. I asked my GP to refer me for autism assessment and was horrified to receive a call from mental health services. I told them there’s nothing wrong with my mental health, I’m perfectly happy and healthy and I don’t know how they got my phone number. Then months later I complained to my GP that nobody had contacted me to follow up on my autism referral. Imagine my surprise when she said they had contacted me but I’d said I was fine and didn’t need their help!

To me neurodiversity should be under neurology, or possibly psychology. My brain is built differently. It works differently. But there’s nothing wrong with my mental health. I’m not unhappy or depressed or suicidal. I don’t have anxiety. I don’t need counselling or therapy. I think it puts people off engaging with support if it’s framed as mental health.

ND should be under Psychology with a psychiatrist to oversee necessary medication prescribing, but on the understanding that they don't argue with the psychology team.

Atm only a doctor (psychiatrist) can diagnose adhd - from what I understand - whilst psychology assess for autism, which is just crazy, because the two go hand in hand.

The time has come for dedicated ND specialists I think. It won't happen though 'cos NHS 🙄

ND people also need targeted education and employment resources as well as ongoing mental health guidance and support.

And turn the fucking music down in shops AND ban air fresheners!

I totally agree that as standard ND does not belong in MH as neurodiversity is not a mental health condition. And this message needs to be spread as it is not widely understood (despite being extremely obvious!)

However I have to admit that I undoubtedly do have MH problems but I think they very much stem from being ND and from not having this picked up for such a long time, especially as a female for whom the pressure to adapt and for is so high. I suspect this is not uncommon. School was so bewildering for me - retrospectively it’s really not a mystery that I became seriously anxious and struggled to attend and my difficulties snowballed into OCD etc. (It is lucky though that certain subjects became a hyper focus for me and that carried me through life in so many ways.) Knowing that I am ND definitely helps make sense of things that happened but unfortunately that alone doesn’t cure the comorbidities I have developed. I do need support but the problem is that the support I can get now isn’t designed for me. My GP doesn’t understand why I can’t put my ND to one side as I seek treatment for other challenges. She doesn’t get how that makes no sense!

The time has come for dedicated ND specialists I think.
Definitely!!

*adapt and fit

@MaggieMooh

Personally I don’t like the fact that neurodiversity is under mental health services at all. I asked my GP to refer me for autism assessment and was horrified to receive a call from mental health services. I told them there’s nothing wrong with my mental health, I’m perfectly happy and healthy and I don’t know how they got my phone number. Then months later I complained to my GP that nobody had contacted me to follow up on my autism referral. Imagine my surprise when she said they had contacted me but I’d said I was fine and didn’t need their help!

To me neurodiversity should be under neurology, or possibly psychology. My brain is built differently. It works differently. But there’s nothing wrong with my mental health. I’m not unhappy or depressed or suicidal. I don’t have anxiety. I don’t need counselling or therapy. I think it puts people off engaging with support if it’s framed as mental health.

Why were you "horrified"? Would you have been "horrified" if someone mistakenly called you from the cardiology unit? Or is it just mental illness that horrifies you?

@kobacat1981

Unfortunately my own experiences of the mental health services haven't been very good. I had doctors and psychiatrists tell me all the time it was "just anxiety". I also had an impatient stay in hospital a few years ago after what I suspect now was burnout

It doesn't get much better if you have a diagnosis and they take it into account. I've had psychiatrists tell me they weren't going to bother to treat my anxiety as it was just "part of the autism".

@ClumpingBambooIsALie oh no that’s dreadful!

Why were you "horrified"? Would you have been "horrified" if someone mistakenly called you from the cardiology unit? Or is it just mental illness that horrifies you?

A heart problem doesn’t result in a loss of capacity. They don’t ever put you in a facility against your will because you have a heart problem. Social services don’t get involved with concerns about your children’s welfare because you have a heart problem. Nobody has ever had their kids taken away because they have a heart problem. It’s facetious to pretend that people don’t have valid concerns when authorities contact them regarding mental health.

@ClumpingBambooIsALie please, spare us the faux outrage. It's widely accepted amongst our community that ND isn't a mental illness and why should we accept being lumped in with an unsuitable department with practitioners who are equally as unsuitable? Treatments for mental illness are frequently unsuitable or inappropriate in addressing our particular difficulties.

ND isn’t a mental illness. In fact it isn’t an illness at all and I find it upsetting and offensive when people imply that it is. I’m different, not ill - there is nothing wrong with me.

@MaggieMooh

ND isn’t a mental illness. In fact it isn’t an illness at all and I find it upsetting and offensive when people imply that it is. I’m different, not ill - there is nothing wrong with me.

I agree.

Neuro-diversity does not belong and should not be under the 'mental ill health' umbrella.

ND is a difference, not an illness.

Most of us have learnt hundreds of coping mechanisms that countless other people wouldn't even dream of, so I often view us as bloody geniuses just for our ability to adapt and cope!!!

For far too long autistic people, particularly women, have been misdiagnosed and fobbed off with prescriptions for totally unsuitable medication.

Things need to change.

My experience is US-based so quite different.

DD, DS, DD's boyfriend and I have all been diagnosed with ADHD (we have a wide range of co-morbid conditions between us too).

We've all been diagnosed by either psychologists or psychiatrists, within maybe 3 months of first mentioning it to our GPs or schools. DD's boyfriend didn't go via a GP - he just self-referred to a psychologist.

The process varied but we had to fill in questionnaires, have school fill in questionnaires, take assessments, etc.

We've all been prescribed medication as soon as we were diagnosed, and have been able to try different medications easily. DS and I got our prescriptions from our GPs, DD from her psychiatrist, and her boyfriend from his psychologist.

We've been offered referrals to psychologist and therapists as seemed appropriate.

All of this has meant that we've been able to get the accommodations we've needed at school, university and work pretty easily too.

I think the cost of diagnosing us all and providing medication and accommodations has resulted in far greater savings along the way in terms of not failing at school/college/work, becoming happier more productive citizens, avoiding those traps that people with ADHD are more liable to fall into such as drug-taking, speeding, etc.

None of us has particularly wonderful health insurance. Three of us are on insurance policies that do not cover brand name medications, so we are on methylphenidate ER rather than Concerta, atomoxetine rather than Strattera, etc.

I've been happy with what we've been offered and how we've been cared for. Providers of mental health services are not unlimited here, but they're more available than in the UK IME (I actually used to be a counsellor in the UK).

Wholeheartedly agree with everything said here. Can't even bring myself to write a proper, well thought out post because it's so fucking infuriating.

I’m in this board in the hope of helping my dsister she was a quiet hard working child but secondary school nearly destroyed her she’s been under mh services since she was 13 she is in her mid 30s now she’s had many diagnoses but they settled on borderline personality disorder. She has agoraphobia and barely leaves her house can spend months with out doing so very obvious sensory issues with food, smells and clothes. Social communication issues and many more not one person has ever mentioned asd despite having a strong familial history (male family members) when sent her the autism uk bits about autism in girls she was amazed and elated that maybe we’ve found what’s going on im going to direct her to this board as it’s very educational I can see that mh are not much to many though.