How do others access help and support

Hi all I am autistic with learning difficulties and mental health.  I have asked for help but the GP or mental health services have not been helpful. When I worked I had terrible melt downs...crying, outbursts of frustration that I could not control. I want to work but scared that I will make a fool of myself. I am currently volunteering to get into employment but have low self esteem...I didn't have it easy growing up you where called lazy, stupid or weird. I want helwith my autism but really don't know where to go. I am also stuck .   

I had a support worker , she abandoned me once I was diagnosed with Executive Autism

I think support very much depends on where you live and what services maybe out there.  I have found that my MH has improved by taking part in my local Autism Partnership Board, whereby they welcome people with Autism as that is who they are there for.  They work on the Autism Strategy to improve services for those in the area with Autism.  I have been able to have a voice and help drive areas of change that I was most interested in achieving.  Contact your local council and ask if they have an Autism Partnership Board, and/or how they are meeting the needs of Autistic People in line with the Autism Strategy.  I know this isn't a direct answer to support, yet I see it as a way to speak up for what is needed locally and beyond.  Good Luck.

Thanks - I have had a look at those pages before - there are zero groups near me in Hastings. I am on a waiting list for NHS support as I can't afford private counselling. I have also emailed Autism.org.uk for more advice but I have not had a response. 

A friend told me about access to work - so I have applied for that - apparently support can be provided by them in some cases. 

I'm of no fixed abode at the minute. I work - I don't earn bad money - but even still there is no way I could afford to rent a one bedroom flat on my own with all the bills etc around here - I don't know how it is possible. 

I have heard that councils are obliged to help autistic people into accommodation but that could mean living in a dorm with 10 other people - I don't know about anyone else - but the thought of living with other people makes me feel sick and anxious. I would rather live in my car than with other people. 

1. I have now been put on an NHS waiting list for support - but that - of course - could take years. 
2. I live on the south coat near Hastings - there seems to be zero support groups around here for adults with ASD. It is quite troubling as autism and all of the possible mental health issues that go along with it can be very serious. It never ceases to amaze me how underfunded mental health care is on the NHS.

GPK26 said:

As you say, private therapy is expensive, but my question would be is it any better? Do they have a different [more advanced] understanding and treatment that the NHS? Unfortunately I doubt it very much

With private therapists you can drop them if they are lacking in experience or skills to help you which will be much harder to do on the NHS.

You can also search out a therapist who claims expertise in not only autism but other areas you want help with - basically you have much better access to those with the skills and ability to actualy be of use.

From what others have mentioned on this site about the NHS service quality, it leaves a lot to be desired.

Hi- I am not sure as I’ve not had a private therapist. My dietitian (which is privately) has been giving me the best mental health support- I don’t think this has anything to do with it being privately though. I’ve also had quite good experiences with the counselling service from my university- but they probably have quite a lot of experience with autistic students as over 10% of students at my university have a diagnosis of autism.

Hello, I'm not sure where you are, but for anyone in or around Merseyside there is a good group called ladders of life, Everton is their office base, but the meetings are held weekly up the road in the rotunda community college. 

You aren't missing muchMarkIt's widely reported that support for Autism isn't very good and can often cause more harm than good.

I hope it will be a lot better in the future as we all need support. It's frustrating that we don't get the help we need.

I was diagnosed in about 2004, and I've never had any support!

Hi there, and welcome to the community

You may be interested in contacting a local National Autistic Society branch. Our branches offer support to local autistic people and their families. If you interesting in checking if there is a local branch near to you, please follow this link: https://www.autism.org.uk/what-we-do/local-branches. Our branches are volunteer-led, and as such every branch and group is different. Some are parent support groups, some provide support and information to autistic adults, while others have office premises and run their own a drop-in service. You will need to check with a branch directly for more information on whether they are able to provide a particular service that you are interested in. 

If you were interested in counselling (NHS & private), you may like to have a look on the Autism Services Directory: https://www.autism.org.uk/directory under ‘Health & Counsellors’. 

You may like to have a look at our health page on our website which gives some useful information in regards to help with everyday things like going to the doctor, dentist, or being in hospital: https://www.autism.org.uk/advice-and-guidance/topics/physical-health 

Hope something in there that helps.

SarahMod

I'd be very interested to hear anyone's experience of post diagnosis support that they have received privately.

As you say, private therapy is expensive, but my question would be is it any better? Do they have a different [more advanced] understanding and treatment that the NHS? Unfortunately I doubt it very much.

The only advantage that I can see when considering private therapy is that you don't have to wait for so long.

I’ve had the same experience. I have a therapist who openly acknowledged she was not experienced or qualified in autism but has made a real effort to educate herself.  But other than being a sympathetic ear she really hasn’t been able to offer any help or advice to me.

It’s been very hard for me to access any support in my area through the NHS. Yes there are the general mental health services but these are not tailored to specifically meet needs of autistic people. I am back to university now for a PhD and they have offered support- this was the first support I’ve been offered since diagnosis. Private therapy is unfortunately expensive. I’m lucky that my university is now offering support and I’ve recently also had my diagnosis approved in my home country (Luxembourg) where I can now join in on online sessions and workshops, though I haven’t had time to attend and not sure how useful it would be. I’m sorry I also don’t have any advice. I had high hopes when I got diagnosed that there would finally be some adequate support and there wasn’t which was a huge disappointment-this forum has been one of best sources of support 

I’m afraid that my experience is pretty much in line with what others have said. Understanding and support is difficult to find, NHS waiting lists are very long and the quality of the service is very poor.

Mental Health services are far from idea. My interactions with them ( not only around my autism diagnosis) have been really bad. There appear to be no real answers other than medicating the hell out of you.

I am speaking as an older adult, recently diagnosed.

I've tried accessing support before but the support offered wasn't ideal and I was put on medication which IMO made me much worse. Since I've found helping myself with meditation and physical exercise like walking much more helpful.

I've found in my experience that must professionals don't understand Autism and don't know how to help.

It depends where you are in the country.

At home I have a really good post diagnostic support service for autistic adults, which has basically no waiting list once diagnosed, with many courses (which sometimes have a bit of a wait but not more than a few months), 1-1s, employment support and social groups.

Where I go to uni, there is absolutely nothing for adults post diagnosis, and I understand that this is much more the norm. 

What broad area do you live in as this might help us give you some more tailored ideas?

To the best of my knowledge there's no local support here for adults. It would be nice to know if anyone has found anything. I found a counselor who was prepared to learn about neurodiversity and she's done her very best to help. 

I’d be interested hear responses to this too because I’ve had zero support since my diagnosis earlier this year.