Support groups (UK)

[Mr_F_]

Hi guys,

Does anyone based in the UK know if there are support groups for people with autism? I was recently diagnosed as you may have seen in another post, but was hoping to try and connect with others who are local to try and normalise the lifelong and current struggles that I am living with.

I am based in Kent, but also curious if there are also any online support groups anyone is aware of.

I have searched online but cannot seem to find anything tailored to just people with autism so would appreciate any recommendations.

Thanks in advance.

 

[Alexej]

Try

Community

I know this is focus on Wales but there might be some links to online groups.

Useful links - Awtistiaeth Cymru | Autism Wales | National Autism Team

Within this area of the website is a selection of other website resources for autism and / or learning disabilities. All Wales People First www.allwalespeople1st.co.uk All Wales People First wants to ensure that people with learning disabilities in Wales can have access to self-advocacy support...

autismwales.org

 

[tazz]

In the Bristol area there is the NHS specialist team who run various support group activities and an organisation called Diverse:

Home - Diverse

www.diverseuk.org

If you were officially diagnosed, were you plugged in to your local NHS mental health team for post-diagnositic support? Our NHS team here runs workshops, courses and drop-ins on all sorts of stuff. And they collaborate with other organisations who offer specific help e.g. with regard to employment or welfare payments.

 

[Mr_F_]

In the Bristol area there is the NHS specialist team who run various support group activities and an organisation called Diverse:

Home - Diverse

www.diverseuk.org

If you were officially diagnosed, were you plugged in to your local NHS mental health team for post-diagnositic support? Our NHS team here runs workshops, courses and drop-ins on all sorts of stuff. And they collaborate with other organisations who offer specific help e.g. with regard to employment or welfare payments.

I was only diagnosed a earlier this week so I am waiting for my psychiatrist's report to be sent over to my GP. Sure that will allow me to connect with local organisations. Probably getting ahead of myself but we love to plan and obsessively overthink things right?

I guess I will have to discover that thing called patience that normal people have!! haha

 

[tazz]

I was only diagnosed a earlier this week

Whether this is useful or not I don't know, but just so you're aware... I got my diagnosis via the NHS, but in order to speed it up they sent me to a private company to get the assessment done. All paid for by the NHS. It was done under a scheme called "right to choose".

The diagnosis was sent to the GP, who updated my primary care record. But they don't automatically do anything else. I asked the GP "where's my post-diagnostic support?" and they didn't know what happens next or what was available. So they referred me to the NHS adult mental health team - which by chance was actually the correct thing to do. However, that team's initial response was "Sorry, you don't have an NHS diagnosis so we can't do anything".

I explained it was an NHS diagnosis but they insisted it wasn't. I ended up making lots of phone calls and eventually spoke to the assistant director of the mental health team, and she confirmed to me that my diagnosis was valid and it was just some confusion among the staff because it was performed on behalf of the NHS by a private company. So that got corrected and I was added to the post-diagnostic team's case load.

Basically, my point is, you might want to check what's happening, if you don't already know, because it's possible your diagnosis is done and nothing else is going to happen unless you actively pursue it.

In my case, the post-diagnostic team has been really useful.

 

[Mr_F_]

Whether this is useful or not I don't know, but just so you're aware... I got my diagnosis via the NHS, but in order to speed it up they sent me to a private company to get the assessment done. All paid for by the NHS. It was done under a scheme called "right to choose".

The diagnosis was sent to the GP, who updated my primary care record. But they don't automatically do anything else. I asked the GP "where's my post-diagnostic support?" and they didn't know what happens next or what was available. So they referred me to the NHS adult mental health team - which by chance was actually the correct thing to do. However, that team's initial response was "Sorry, you don't have an NHS diagnosis so we can't do anything".

I explained it was an NHS diagnosis but they insisted it wasn't. I ended up making lots of phone calls and eventually spoke to the assistant director of the mental health team, and she confirmed to me that my diagnosis was valid and it was just some confusion among the staff because it was performed on behalf of the NHS by a private company. So that got corrected and I was added to the post-diagnostic team's case load.

Basically, my point is, you might want to check what's happening, if you don't already know, because it's possible your diagnosis is done and nothing else is going to happen unless you actively pursue it.

In my case, the post-diagnostic team has been really useful.

Appreciate your message. The psychiatrists who carried out my assessment said the report will be available in a few weeks so I will chase it up in the new year and then reach out to my GP. I don't hold much hope for getting any support via the NHS, but it will be worth asking.

To be honest I was fortunate enough to be able to afford to pay to have the assessment done privately so if I have to pay for support I will do that also. The NHS waiting list in my area was 'up to 2 years', and when I had the realisation that I may be autistic I opted to get it done quicker. The organisation I used actually carry out the NHS assessments so I know they are genuine. I guess having looked for answers for over 40 years, I wanted to take the bull by the horns so to speak and try and get answers.

 

[tazz]

Ah well, under Right to Choose you probably could have got the same assessment in the same timeframe but paid for by the NHS. If the NHS post diagnostic support team won't accept a diagnosis that you paid for, and they insist on you having an NHS assessment before you get any support, you'd still be able to insist on bypassing the NHS waiting list by using the Right to Choose route to get that assessment done. Often it can be done in weeks or a few months, even when the main NHS wait list is years.

Unfortunately GPs don't inform patients of the Right to Choose option. They are supposed to always offer that but they don't.

The NHS support in my area has actually been good.

 

[Mr_F_]

Ah well, under Right to Choose you probably could have got the same assessment in the same timeframe but paid for by the NHS. If the NHS post diagnostic support team won't accept a diagnosis that you paid for, and they insist on you having an NHS assessment before you get any support, you'd still be able to insist on bypassing the NHS waiting list by using the Right to Choose route to get that assessment done. Often it can be done in weeks or a few months, even when the main NHS wait list is years.

Unfortunately GPs don't inform patients of the Right to Choose option. They are supposed to always offer that but they don't.

The NHS support in my area has actually been good.

I looked into the Right to Choose option but was told it was a two year waiting list. If getting the assessment done privately will mean I cannot get any NHS support then so be it.

Glad to hear you have good support from the NHS in your area but unfortunately it isn't the same everywhere in the UK. Just getting a telephone consultation takes nearly two weeks at my local surgery and when you do get an appointment you are speaking with a different locum doctor so you have to repeat yourself every time.

The last time I was referred to the local mental health teams, they left me feeling worse than when I reached out for help. To the extent I was feeling suicidal and like there was no support whatsoever.

I guess I will keep looking for support elsewhere until I can manage to get my report through and live in hope of getting to speak with a GP.

 

[tazz]

I think people are told a lot of misinformation about right to choose. You basically have the right to get assessed by ANY of the companies on the.list, anywhere in the UK, not just in your local area. So there should never be a long waiting list like that. Not relevant for you now anyway but I just mention it for future readers of this thread.

Here, GP services are overloaded and the experience is much like you've described. And I'm acutely aware that other areas of mental health care are also overloaded and not effective. But I'm talking specifically about the adult autism post diagnostic team here. They're good. Service is just so inconsistent around the UK though. Anyway, good luck with everything!