Has anyone received any NHS support for autism?

I was 57, a copy of my report was emailed to my GP and filed, I don’t believe it was even read. That was the end of the process, I think they believe that I appear to have always coped so don’t need any help.

I had my NHS diagnosis aged 14. I didn't even get the luxury of a leaflet, let alone someone to explain it to me.

Funnily enough, I was discussing this with the mental health nurse recently. I said I'd heard of people being discharged with nothing more than a leaflet and how I was slightly envious of them.

tbh I prefer online ND group meets - one or two is enough for me

I had privcate therapy to start with via my health insurance - I was on the cusp of burnout when I got diagnosed (think that's fairly common) and they helped ground me - although I only had 10 or 12 sessions.

I think time is a big factor and learning about yourself - whether a therpist actually speeds thayt up - I'm not to sure.  I mean it took me a year of dealing with my autism before I realised I was adhd too , and adhd I think has a bigger impact on me that my autism.

I know some hate their Autism but the more you connect to others NDs, hopefully you realise it's not the "disorder" the medical profession makes it out to be.

Also at first I was reading lots of books (well I read some) and watched lots of you-tubers, tbh I rarely do now

I think Purple Ella had some of the best short content 

If you want more in depth stuff - the Seed Talks - do in-person and online seminars - on many things including ND and they are usually very good presenters too !

I had an NHS assessment, afterwards I was given a pamphlet.

We can but hope, so often what seems to happen is that Westminster says it wants something to happen across Britain and dosen't fund it for the devolved nations and then says its their fault we've not got the services. I think the Barnet formula for funding needs to be looked at again and maybe it will be if theres to be more devolution nationally?

In a word, no.

Hey lovely get yourself an advocate they will help you will anything you need in terms of counselling, housing ect. They can talk on your behalf and get you the correct and necessary help that you rightly deserve.

If you put in your search engine advocate in your area and either call them or email them to request one. If you need any help I am here to help you. Don't be alone and feel you cant get no help.

I have been reading lots of books and doing research but I’d find it useful to talk things through with someone,

I’ve found one online support group which meets once a month. I haven’t managed to find anything in-person.

I will probably end up paying for a neuro-affirming therapist but I can’t afford it atm as I’m on sick leave and only receiving statutory sick pay,

I feel pretty alone with everything.

The group sessions and problem solving sessions sound great. 

Could you ask their admin team whether you can switch to a different counsellor, who has a better understanding of autism?

Hi Tamarinda, 

I am glad to hear you have received your autism diagnosis. I am sorry to hear about the struggles you are having with post-diagnosis support. 

You may find it helpful to read through the formal support following a diagnosis page. Furthermore, we have a page on what do when you are not offered formal support.

You may also find it helpful to look through the Autism Service Directory as to what is available in your area for autism support for adults. 

Finally, I would also like to direct you to the reasonable adjustments you can ask for when having therapy. It may be worth speaking to the organisation that offers therapy about how you should be supported as an autistic individual. The reasonable adjustments also provides a guide for therapists to read to to support an autistic individual which you may want to read or share. 

I also hope you can find support from the online community and the responses that have posted. 

Best wishes, 

Alice Mod

I’m hoping Andy Burnham will look at services which can target late diagnosed adults. Maybe if he funds England, the devolved countries would get financial support for similar services.

to be fair - just connect with other Autistics and Neurodivergents = find your tribe.  Theer may be some local or online groups you can join .  be careful of some charities - they can have non-lived experience and have out-dated ways of support - that is largely focused on kids, parents or level 3 adults and their carers, which won;t be much use to the vast majority of us

NHS therapy will not be suitable or useful for NDs.  There's no support - 

just a few good books - learn about yourself it will take 12-18 months+ - & learn to be kind to yourself

I'm going to add to my list of things to write to Rhun Ap Yorweth, our First Minister and AM about. I think its partly to do with our failing health trust which has been in and out of special measures for years, he's put his health minister on the board and has promised to sort it out, I wish him luck with it, as everyone has said that and they've all failed. I don't what is so intractable about it, but there must be some deep insitutional resistance because it's been going on for decades.

I got a series of group sessions entitled 'being autistic' and also some 1:1 help with setting up a hospital passport. I found them very useful. They also used to run problem solving sessions and another course on autism and anxiety. However since then my trust have switched to a different care provider who despite promising they'd produce their own cover, are yet to produce any concrete support although do appear to be getting a little better. I also have since moved trust, which doesn't appear to have anything for adults. 

The sensory sessions sound very useful. I wish they provided a support group for late diagnosis in my area.

It's good that you got a neurodivergent counsellor. The counsellor I have is fine but she is another a specialist in autism. 

It doesn't see their are many services for adults unfortunately.

This sounds like pretty good support. 

I understand why you would be upset by the language used by the counsellor though. There isn't enough knowledge about autism in these services. 

I had a private diagnosis and the clinic was excellent in providing post diagnostic support through counselling and signposting to organisations specific to my needs. It also referred me to the NHS Adult Autism Clinic at the hospital. I had one NHS appointment with an autism professional who happened to be a speech therapist and I was signposted to courses, literature and voluntary agencies. 

My GP later referred me for counselling (Talking Therapies) but the therapist used inappropriate language when referring to autism related issues, e.g. “I was suffering with autism”. “Suffering” is a term I dislike intensely, even when referring to physical illnesses and conditions. 

The suggested reading literature and the post diagnostic counselling from the private clinic helped me most.

The NHS literature had a lot of material that wasn’t relevant to my needs. They signposted me to their course for autistic adults but I haven’t yet signed up. They also gave me a “to whom it may concern” type letter which outlines how ASD generally impacts people (according to diagnosis criteria) should I wish to claim benefits.