Can't get help for a breakdown

I'm not sure why you're focussing on what GPs may or may not provide. The OP in this discussion has already managed to see their GP but has been turned away without any help. The mention of emails was in relation to support worker companies and social services.

Thanks, that is helpful. Looking at the details:

Adjustments only have to be made if it’s reasonable to do so. What’s a reasonable thing to ask for depends on things like:

- the size of the organisation (most GPs have less than a dozen staff, so really small)
- how much money and resources are available (not much and there are probably people in greater need than us)
- the cost of making the changes (£10-20k for the email hosting service and staff time to check, read, relay to a doctor and send back to you)

I don't know if email communication is seen as secure enough for discussing what may be sensitive personal info though. With emails so easily hacked and spoofing rampant I think there are serious security concerns around using email.

Will it also only be available to people who meet the criteria as disabled?

A more secure system would be significantly more expensive so even less chance of it being setup.

I guess these reasons are why we don't see more of the reasonable accommodations.

Yes we do have rights under the Equality Act 2010

https://sheffieldautisticsociety.org.uk/information/reasonable-adjustments/

https://theconversation.com/dehumanising-policies-leave-autistic-people-struggling-to-access-health-education-and-housing-new-review-202997

Autonomistic said:

As autistic people we have rights to reasonable adjustments and for communications to be in a format that works for us

Do we?

Aside from the legally enshrined rights from employers (which is seems not many bother to actually implement from what I read on this site), I don't think we have the right to make any company we chose to interact with implement something suitable to our needs.

I honestly don't know the laws around what GPs have to provide, but most of them lack the staff and budget to implement these sorts of schemes and staff them.

It would be useful if anyone knows of the laws around this.

The issue seems to be one of communication or more specifically the lack of.

I don't do phone calls either. As autistic people we have rights to reasonable adjustments and for communications to be in a format that works for us. Many autistic people find phone calls extremely difficult or impossible. The reason for this is usually a result of auditory processing difficulties and the lack of visual clues over the phone. The issue can be a huge barrier in some areas of life.

I do not think that being shy is at all relevant and using that term may lead to further misunderstandings about what support and reasonable adjustments you need as an autistic person.

I share your frustrations when organisations and businesses simply ignore your emails or respond indicating that the only way to resolve an issue is by telephone. Then when you try to explain they just say get a friend, family member, support worker, care worker, etc to call for you. They really have no idea that there is absolutely no support out there and many autistic people have no such people in their lives that they can turn to. 

Part of the problem is the system is broken and resources have been cut to the bone. In my area at least mental health services will not support autistic people. They decline all referrals and insist that autistic people are the responsibility of social services. Unless the person also has extremely high support needs, due to physical or learning disabilities, then basically social services don't want to know.

Social services should be clearly communicating to you what you are entitled to, in a format you can understand. I'm not an expert but I don't think the support worker companies can communicate directly with you unless they have been engaged by social services. That may be why you're not getting any response from them. I also suspect that any assessment done in 2004 would no longer be in place unless it specifically stated that the support was for life. The trouble is if you request an updated care assessment from them it will probably just confirm that, in their view, you're not entitled to any support.

Helping Someone to smile when they are feeling low IS a helpful response.

Have you tried contacting a local support group for Autism?

Google "Autism support in......(insert county/city)" and see what comes up. There are many charitable support organisations for Autistic people who might be able to guide you through this period.

Hope that helps.

Not sure if it will help, but a quick google search brought this charity up, who seem like they might be able to refer you to a local support service.

https://resourcesforautism.org.uk/ - there is a link to their referral form right at the top of the page.

I’m sorry you’ve not received the help you need. We are always being told to ‘ask for help’ ‘go and talk to your gp’ - and yet when people find the courage to do that they often don’t get a helpful response. I’m really sorry because that’s not easy. I notice that below you mentions that you’ve been told you need 8 hours of support - so you have every right to that. I would email social services again, and I would copy in your local MP. 
I also think that because of the lack of support then we often have to go the self help route. There’s a lot of material available online etc about help for all kinds of issues - including tackling loneliness. If you can do as much research as possible into the difficulties you are facing. It’s empowering to try and take control yourself and find good strategies that work for you. Plus groups like this can be great at finding out what has helped others - and just to know you’re not alone.

I know it’s hard but you will get through this difficult period and make progress, and you will probably learn a lot in the process. I’ve had a terrible couple of years but I am finally emerging from that and I’ve learnt a lot, and overall I think I’m a wiser person. 
I wish you well, try not to lose hope - because things will change in time and in the meantime try and focus on the things in life that you still enjoy - however small. Have you read the book ‘The Power of Now’ by Eckhart Tolle? It might be interesting for you to read that (or the audiobook is good because his voice is very calming :) 

Due to rule 13 we can't give Medical advice but i understand.
A breakdown is no joke !
The Anxiety,stress and worry.
All because the RAC told me i wasn't covered !
Not funny.

I am sorry to read about your predicament.

Unfortunately, as a result of the NHS and council services (i.e. Social Services) being underfunded, under-staffed, etc, the onus seems to be on us adults to take responsibility for ourselves and do things that may be out of our comfort zone, or in some instances prove impossible for us, such as making phone calls.

You have my sympathies, as it sounds like you have been stuck in a vicious circle for over a decade.

The help I probably need most right now is for someone to phone the support worker companies that aren't replying to my e-mails.

Social services assessed me as needing 8 hours per week of support back in 2004; and they've never provided it!

Being so shy is crippling me. If I can't e-mail people and get a response, I can't get anywhere!

Hi Mark, 

What makes you say that social services won't give you a support worker, have you already tried that avenue? 

I'd strongly recommend contacting the citizens advice buro as they might be able to signpost you in the right direction of where to look and who to contact. 

If you are in a crisis right now please call (or email) the Samaritains they can help and are quite responsive on email in my experience. (I am not much of a phone talker). 

Good luck and keep writing to us with more specifics if you feel like you can so maybe we can offer better advice.  

Unfortunately there's not a lot of help for autistic adults most of the support is pretty much for the children.

But we're lucky that we have each other here. This forum is by far the best place for support that I've seen so far.

I don't get any support from my family but I've had lots here in the last day it's overwhelmingly wonderful.

So I'd seriously recommend coming here when you need help and support.

It seems so simple to some people, they say,,,,,, Well you need to get out more...... What are your interests/hobbies.... join a club

But it's not that easy, is it.

How old are you, are you only young. I'm lonely, but i'm 70yrs old. 'm struggling living alone, i've got a long list of medical problems, up to now i've refused a helper coming in. I think 'cos of the autism, i don't want people in the house. Now they've told me i have Parkinsons, so i'm thinking of downsizing and going into one of those over 60s places, where i can have my own flat but help on hand should i need it. I think one of the main reasons i want to go.......... perhaps i'll meet others in a similar position....... and i'll not be lonely.

Mark said:

If I can't get help from the NHS when I'm depressed, and social services won't give me a support worker, where am I supposed to get help from?!!

As A=BCD says there are no support services for people such as ourselves. We are seen as capable or organising our own support so the meagre resources that the NHS and Social Services have are used to deal with those who need it a lot more than us.

The normal approach in a situation such as yours is to ask a familiy member, friend or colleague to step up and help you help yourself. You are clearly intelligent enough (in their eyes) so it requires you to apply yourself to find a way to manage the symptoms of autism that are causing you problems.

We have gotten pretty good in this site of providng pointers to let you empower yourself to take more control over your symptoms / issues so if you are up for sharing more detail of what your general situation is and what symptoms are causing you most grief then we can try to help.

Note we are not permitted to offer medical advice on here but can suggest things for you to look into further and make your own decisions.

Just remember to keep any personally idetifiable info out of the discussion to maintain your anonymity.

There's not much support out there for adults on the spectrum, we have each other and that's about it. Professionals aren't trained in autism, we're left to fend for ourselves more often than not. It's a good supportive bunch here so if you need anything then please ask and normally there will be people who can relate and help.