Where in Great Britain offers local N.H.S. support for adults?

I have read that old thread now, but I do not relate to it as I have never needed to explore or researched my gender.

My first clear memory or knowing that my body was wrong was a time in school when I was feeling that I needed to hide my thoughts about it. I have few memories at all from my early childhood, so I have no memory of wondering or questioning it.  Nor have I ever had any doubt over whether it is my mind or my body which is wrong.

It is just something I have known all my life with total certainty.  It is the only thing I have ever known about myself without needing help from others.  I only know my sexuality because I was told, which is partly because it was something I had never needed to think about previously.  And I had to be told to talk to a doctor about depression which is why I thought that was what was wrong with me before being told something I was describing about myself sounded like autism.

I suppose because you have to fit into a gender to be in society, so it is something you cannot avoid and have to address it.  Maybe for most people this just happens subconsciously because there is no contradiction for it to consciously register. Even people who identify as non-binary have to fit into a gender in society, even if they keep changing between them.  Such as having to go into boy or girl classes for P.E. and buy boy or girl clothes.

But that might be why it is something I knew without help.  And probably my autistic way of thinking about it logically just meant I came to a clear and obvious conclusion without having to experience doubt like other people.  Probably I was also too disconnected from the normal social world to think that because I did not fit with the rest of the world that maybe I was wrong because I am supposed to fit in with it.  Though I did think there was something wrong with me, but instead it was that I did not belong in this body.

To keep to the topic of my thread though, obviously if I can move then access to a gender clinic would be important.  But I knew not to ask about that as I know they are all very bad.

I do think I was born at the wrong time.  Asperger's Syndrome only really started to be diagnosed in the early 1980s, and so both higher functions forms of autism and gender dysphoria were not widely known or understood at the time to be picked up.  Although I eventually left the G.P. who I asked for an autism referral after they told me they do not understand autism to be able to help me.  That was in 2007.

Although I have joined motorcycle and photography forums but have not found them as comfortable or as friendly as previous ones from which I have met people.  That is what made me realize that the way I used to get to know people no longer exists.  I would not be able to just attend an in-person group with people I do not know.  To be able to do that is the sort of thing for which I want specialist help.

And I understand what you mean about needs now, and I think you are right.  The time I was in a relationship was the only time I have been happy and would have chosen to be alive rather than die if I were given the choice.  It was only when the relationship ended that I discovered I did not have any friends, because in it I never needed them.  And though my dysphoria was still a problem, it was something I was managing better.  So it is probably that enough of my needs were being met that I could cope with ones which were not.  Although I suppose some of them may have still become problems later on had they had the chance.

I will look at that thread, thank you.

A brave disclosure. I too for many years blamed my problems on shyness and depression. Everyone including me back then had the wrong idea of autism. I recognise the character of online discussion has changed: newsgroups used to have consensus etiquette and mostly well-educated or self-educated people. There's a chapter in Neurotribes suggesting autistic people (or allies) created BBS and similar communication to help their type of communication.

At the risk of being obvious, I meant everyone has needs. The difference with being autistic (and I'd imagine gender dysphoria) is not so much about having additional needs, as not having the basic ones met. I wonder if every identity is a pretence, just some are more habitual than others.

I think things will work out for you. There seem to be quite a lot of people who explore their gender around the time of identifying as autistic; there may be support around that in your area. I noticed this old thread: https://community.autism.org.uk/f/miscellaneous-and-chat/12439/gender-any-advise-sonsnsnsn/72047#72047

Could you join motorcycling or photography clubs if you wanted to? I tend to find that if you're in a group with a shared focus, you don't need to talk about yourself, which is usually a relief for autistic people.

Its not the worst city to live in either.  We have pretty much everrything you can want.  Two hospitals, two universities, a college, good schools, lots of parks and we are on the edge of the Peak District, so you can get into the countryside with one bus journey (or walk there via one of the parks).

I saw going to university as a second chance at coping and doing social things so made an effort to try and put myself in situations.  Because I did not know better, at that time I just thought I was very shy and suffered from depression.  But it went very badly and I really did not cope.  That is why I ended up in a relationship, when someone I knew came to visit because they knew how I was suffering.

As well as not coping in general, the course was not right for me and I worked out what I wanted to do. That meant transferring universities, but because I still saw it as shyness and depression I also saw it as another second chance.  Although it still did not work, because I was living alone rather than with strangers, but also not alone because of the relationship it did not affect me as badly.

I have also met a lot of people, over a hundred, just from being in various online groups.  That is the best way for me to be social as I can get to know people in general from reading and taking part in discussions before talking to them individually as people.  So then why those groups had meet-ups I went along to them.

It was still very awkward and uncomfortable for me, but sometimes it was also good, and some people I got to know.  However the groups always ended up disintegrating for various reasons.  And I struggle to maintain friendships as because I usually have nothing to say so I can respond to people but not start conversations etc.  So without they context they always end which is why I am now totally alone and have no friends.

And desire all that, the more I tried the more difficult it got.  The anxiety and stress in social situations got worse rather than easier over time.  But the sorts of internet groups which existed in the 1990s and 2000s no longer exist anyway.  I think it is because the sort of people online then where ones who found it difficult to be social in the traditional ways, but now everyone is online.  So even though I am still on various forums, none of them are as friendly as they used to be, at least not for me.  So those opportunities are no longer possible.

So it is not that I have never tried.  And the two hobbies I have taken up, because the compulsion to do them became overwhelming, are essentially both solitary ones.  Photography and riding my motorcycle.

You are right about my needs not necessarily being related to autism, though.  When I saw the autism therapist she would ask me how I was.  Because I really needed it to work I told here that I had gender dysphoria, even though I had never told anyone before.  I had been this way as long as I can remember and have never had any doubt about it, it is the only thing I was certain about.  But I grew up in the 1980s when I did knot know anything could be done about it.

Because of thew way I have difficulties with social imagination I find it very difficult to think about myself in the future.  So even when I knew that people could transition I always thought about how I felt as a child and not about my future so I never realized that applied to me.  So I had never told anyone because nothing could be done about it, so there was no reason to do so.  Although I now know differently, I have been referred to a gender clinic but the N.H.S. is very slow at it took about two and a half years to speak to someone.  And now I am waiting until next year so I can see them again to find out if they will help me.

Struggling with not having the right body and having to pretend to be someone else has always been difficult.  But now I do wonder how many of my social problems are because of that rather than the autism.  I think they are probably combined and makes things worse for both and made it difficult to try to learn ways of functioning socially on my own.

Right now is very difficult for me because I came out to my sister just before the lockdown started, and told her the name I had chosen.  So now that is how I think of myself having been in isolation for twelve weeks with that identity.  But because it is still not my body or voice I am now afraid of meeting other people as it would mean still having to pretend to be the old one.  And I cannot think like that any more.

So until I can transition I cannot do anything social, and I still do not know if they N.H.S. will help me because they apply a strange catch-22 requirement.  They willingly help you to change gender if you live in your new one first, but that is impossible without the help to do so.  And living on benefits I cannot afford to do it privately.

Thank you, I will consider Sheffield too.

Sheffield isn't all that bad.  I went to my GP, had a referral, got put on the waiting list but ticked the "im flexible and will take a short notice appointment" box, got an appointment 10 months later and was diagnosed 3 months after that.  You can get 6 sessions of CBT and more if needed.  I had 10 for a problem phobia last year.  Referral to the mental health teams is also possible, but I havent used them in years.  Waiting time was about 4 months last time I did it, its probably a bit more now.

We have a handful of distinct groups that do activities for people with ASD, within the city.  They all seem to be interconnected to the Sheffield Autism Society and Hallam University.  So support wise its a pretty good place to live.

I've heard that further down south there are places with no support networks at all and NHS services that are practically non-existent for people with any sort of mental health issues.  I know when I lived in Cornwall 10 years back that was pretty much the de facto state of things down there.  Mental health issues were dealt with by a GP and you had to be in a really bad way to get any sort of hospital help and even then you might get sent to Derriford, because they had about 5 beds at the local hospital for mental health patients that were generally filled with dementia patients.

I can relate to a lot of that, particularly from when I was in my 20s. I think the 'medical problems', your obstacles sorting those, and your unhappiness both imply unmet needs, although not necessarily needs related to autism.

I function better if I'm in a relationship or have people around me too, even though most of my interests are solitary.

Help in how to 'function' socially (distinct from trying to make us conform) would have been useful for me too. In my opinion, without such help from eg classes, social worker or occupational therapist, I think there are two things I managed to do for myself with a lot of difficulty. (I never managed to have a relationship until I was in my late 20s.) Firstly, deliberately gaining experience; secondly, deliberately extending self-acceptance. The experience involved taking up any social offers I got, and trying to find diverse situations I could learn from even if I was uncomfortable. The self-acceptance is partly from distracting from thinking about my own problems, and also disclosing a bit more about myself to others than I would like. After years, I eventually became more comfortable around people and much less scared of them. I had masses to say in my  mental 'back-catalogue', but at first nothing seemed appropriate.

So if I may suggest anything, it's to keep trying lots of different things, including finding sources of support.

The answer is nowhere.

The NHS is only interested in dealing with minor ailments or things that are life threatening such as coronavirus.

I think the problem is I do not technically have any needs, in the sense I can take care of myself to any kind of minimum threshold sense.

Not having being diagnosed as a child I never got any help to learn how to function socially.  I never know what to say to people, my mind is just blank and I have nothin to say.  The times when I do have something to say I never know when I am supposed to speak.  I am very socially phobic so tend to avoid situations, as I go through a lot of anxiety leading up to them and usually take several days to recover after.

I am a little bit agoraphobic and so never used to do supermarket shopping online, as doing it in person gave me a reason to go out else the longer I stay indoors the more difficult it would be to go out.  Although I started riding a motorcycle, which is the only thing that helps keep my mind clear, so I did eventually gain another reason.

But having to rely on shopping this way has taught me I do not like online supermarkets anyway, not only are the ranges smaller than my local supermarkets but there is no structure to it like there is walking up and down the aisles.  They are also the easiest shops for me as I can be left alone, smaller shops are a lot more pressure.

I am not terrified of the moment that shielding will end because it will mean having to deal with other people.  I also have some medical problems that probably are too serious to wait until then, but I am more afraid of having to talk on the phone, having to stand up for myself (I do not cope well with creating or being in situations where there may be disagreement), and then having to go out.

There is a specific reason why I am afraid, but it is not technically due to autism so I will only explain that if anyone wants me to.

Basically I would say the help I need is being taught how to be a person and interact with other people.  I also struggle with motivation but I think the former will fix that.  The brief time I was in a relationship I functioned a lot better.  Probably in part because they could handle a lot of the social interaction for me, but they made me happy (which I had never been before or since) and they also gave me a purpose.

So I have already been rejected by social workers and the community mental health service as I do not fit within the specific areas that they work.  So it seems something specialist is what I need.  I find it very strange that the various medical service will not allow me to kill myself, yet will not do anything to help me to live.

Incidentally, last year I had to do another work capability assessment, and despite the reputation of them, the person I spoke to appeared to understand my situation better than anyone else I had spoken to.  They even told me how some things I thought not relevant were affecting me in that context.

That is good to know as I think my first preference would be to live in Edinburgh, based on a balance of factors.  Although living in London now it would make just the cost of moving very expensive.

scotland, i have heard, has better mental health services. 

Hello, Somebody, and welcome to the forums.

I'm afraid this is a common story. Despite the government having an Autism Act, the UK government are putting very few resources into support for autistic adults who live independently. It's almost like autism is a dead-end diagnosis. The vast majority of mental health services have no understanding of autism and in my experience can be actively harmful. You're extremely unlikely to find an autism-specialist psychologist for example, and many therapists make neurotypical assumptions which are both mistaken and can make you feel deficient. You do well if you can find someone who just takes you as you are and acknowledges that they don't understand completely. (That doesn't necessarily mean mental health services are of no value at all in a crisis.)

It seems all the diagnosis gives you is an entitlement to reasonable adjustments under the Equality Act as regards employment or services; if you're in work you can also claim Access to Work to pay for some help, such as mentoring. My thoughts would be: does your local authority have an autism social worker? It's just possible they may be able to help with practical problems and also be linked to occupational therapy services. Another option is to try to push for services at a policy level: have you tried contacting the local Healthwatch? If you can also find other autistic adults locally, there is power in numbers and you are helping each other: you wouldn't necessarily need to meet face-to-face, if that's what made the support group useless.

Well done on getting the food delivery sorted and keep safe.

Thank you Kerri, however one of the outcomes last year where I lost any hope of help was the mental health and support service contacting the local N.A.S. branch.  They said "we have very little information/ experience of services for adults with aspergers or autism. And my own experience, to date, is that most GPs, unless personally affected, have very little knowledge."

They also said the specialist autism service should be in a better position to help me, but because of funding they will not.  That service also lied to me on a previous occasion, and when I asked the therapist for advice on what to do (when telling me funding had been denied, they said I could contact them) they betrayed my trust.

I made a complaint to the service about the former I made the mistake of mentioning my upset at the latter too.  But I got a reply back that made no reference to my actual complaint, only the latter issue, and the person who dealt with the complaint was a marketing manager, which I found very offensive.  I would have complained again but unfortunately I have mislaid the letter.  I do keep trying to find it because that situation is constantly on my mind.

But it means the N.A.S. have said it cannot help me, primary care has said it cannot help me, the local mental health and social care service has said it cannot help me, and the specialist autism service has said it cannot help me.  And the latter three of those I no longer have any trust or confidence in anyway.

Dear somebody,

Our Autism Helpline may be able to help if you would like to give them a call. Advisers can talk through the different types of support and search for services in your area. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.  

If you would prefer you can complete an online enquiry form - there is a link to the form on this page: https://www.autism.org.uk/services/helplines/main/contact.aspx

You can also search our Autism Services Directory yourself to find support groups and other services in your area.  The Directory is here:

https://www.autism.org.uk/services/autism-services-directory.aspx

I hope that helps.

Regards,

Kerri-Mod

I am sorry I do not know how to make the paragraphs display properly spaced on this site.  I tried editing and double spacing them but they still have been ignored.