UK Locations

Hi NAS!

Thanks for your reply, I live in the Three Counties area - it's a very backwards place with rural locations cut off, you need a car to do anything and my driving days are over!

I am just under an hours drive from Birmingham which sees all the fallout spill in to the nearest large town which has absorbed a lot of the funding, West Midlands Autism operate in the area a drop in with group sessions or all group based stuff with little one to one support just advice which I've been through all the options and as someone who is severely socially limited and with a late diagnosis there isn't much beyond a council assessment for home support and various transport help which in itself is a problem here as there is a lack of community care/support and a lot of it is brought in so you have strangers from far lands in communities they don't identify with in a stressful situation looking after people like me, there have been incidents and some I have witnessed personally with a carer shouting at a severely disabled chap who was clearly distressed and didn't want to walk up a road any further than this woman was trying to force him to.  

I mean, the million dollar question is where exactly are you atm?

I don't care if people find it a cliche, but I'd say the further you go out of the home counties the less compelling/useful services you'll get. I think Wales is similarly bad and maybe even far south west, a lass I knew from Exeter said Devon had barely anything and I did deal with a mental health service in Cornwall who were about as useful to me as a chocolate fireguard. 

I have family in the whole Bradford/Leeds/Pudsey/Farsley/wherever area and I'm pretty sure it took forever for one of their ADHD children to be diagnosed, like, 3 years at best. 

Only other autistic family member lives in Birmingham, diagnosed after detainment under mental health act and they said the unit they got put in was horrific with zero aftercare.

There is absolutely nothing where I live. 

As has been the case with previous (mis)diagnosis they were only too accommodating with prescription drugs, I've had so many it's a wonder they're not asking me for blood donations for withdrawal clinics - I'm not putting too much hope on the ADHD medication as with some of the other medications they've not helped in the real sense, some being disgustingly negative and some have only masked symptoms made me feel more 'comfortable' in some ways and less overstimulated.

I feel more lost than depressed as I'm used to going to the GP if something is wrong and being pointed in a direction and being helped and carrying on but this digitally remote practice, triaging system, diagnosis and my age has closed doors.

When talking to some people post diagnosis they have asked me whether this or that is in place and that makes me think I should have had a lot more support and safeguarding that no one is following up on and leaving me in the meantime to mentally climb walls causing me further burnout but if I can get to some point of stabilization and am still facing issues with help then I will likely action the option of homelessness as the elements seem to be a lot easier to deal with than society.   

Thank you Alexa and for your time!

Unknown said:

Unfortunately upon diagnosis my GP have been more stonewall than open door,

I suspect more GPs than we expect feel inadequate to deal with neurodivergence as there are no pills to throw our way. (Well, there's a little something that helps some cases of ADHD, but that's a whole other can of worms for various reasons.)  My ex-sister in law was a GP who loathed dealing with mental illness - and that was long before the current situation with neurodivergence. Thankfully, she's probably retired by now. 

Yes, it's appalling that we have a society where lack of money badly disadvantages people in too many ways. In my opinion, it should be the other way around.and I admire the Scottish government for taxing incomes over £44000 more heavily than English does. But then, we have far fewer people with incomed over £44000. 

Thank you for the reassurance that I didn't completely depress you. I was afraid I'd gone too far when you're facing so many difficulties. I hope things get better for you.

I really appreciate your insightful replies Alexa you've been more help than a lot of organisations I have contacted in the search for help on this, I am awaiting a needs assessment by my local council after having my assessments expedited due to circumstances I cannot share here - there was enough historical evidence for a swift diagnosis of both conditions when looked at by an MHP in less time than I've had some talking therapy sessions and following assessments confirmed it. Unfortunately upon diagnosis my GP have been more stonewall than open door, prior to diagnosis they were happy to deal with any appointment and chuck any old medication down my throat.

I really hate this money aspect to society, it has become more of a means tested approach and put a value on human life that is eroding good values that hold communities together.

There is no need for you to apologise you clearly have an understanding of the crux of the matter and society would be better off with more individuals like yourself.

Again, being honest, Scotland isn't more likely to help you with the long-term support you need. 

Social Services provides care assistance in the person's home for people with disabilities.That would cover necessary tasks and personal care, plus good care companies will offer help with shopping. (I'm speaking from 8 years dealing with that system for my father, in England).

1-stop support shops for autism offer help filling in CVs and job applications as well as legal and employement advice. Think of it as a Citizens Advice Bureau for autistic people combined with group outings and self-help community pursuits. 

If you need care assistance, I'd suggest talking to your GP as your initial port of call as Social Services will want a medical referral. Alternatively (if you can afford it), you could hire your own care assistance. The trouble is that the whole care assistance system is struggling throughout the UK and, like social housing, tends to concentrate on the most needy - hence the medical pathway.

Scotland is no better off than England, and worse in some areas. England is the richest country of the four UK nations, by far. Even if you moved here (apart from the difficulties finding anywhere to live) finding a job is very difficult plus wages here tend to be lower than wages in England. And we're a little better off than NI or Wales. 

Sorry that this is decidely not what you want to hear. From your initial post, I'm guessing your GP has been no help at all. Could you transfer to another one? It should be possible to do that within the system. 

My heart goes out to you and everyone else on this forum who struggles with the chronic lack of support. 

Hi Martin!

Thank you for your response, despite the face that is put on these issues in society we are woefully lacking as a first world, that is democratic and a wealthy nation that preaches understanding and tolerance - people blame money when a lot of the problems simply arise to lack of information and a great deal of misinformation and bias.

Society helps those who can help themselves and have a certain amount of sympathy or empathy as long as they are a tax paying and law abiding citizen or as in the case when Autism was first being acknowledged you were most likely middle class and got the most understanding.

Now unfortunately as the rest of us plebs are being diagnosed the same can't be said for anyone who doesn't have a visibly perceived disability which is just as insulting to those who are visibly disabled as they can probably do a lot more than someone's bias gives them credit for!

Fortunately for me I have evidence that I need support and it has been ignored and done further damage, I can't go in to specifics as it is a legal matter.

My community is a population of 30,000 I have no local run groups, there is a charity here and they operate at a pub doing group sessions during happy hour so the local swill drinkers have some entertainment while one shares personal details and experiences.

Cinnabar_wing said:

One piece of research that might be useful is whether a region allows for adult diagnosis at all? That tends to then effect services as if they don't diagnose anyone, they don't have a group to need to offer services to?

That doesn't map in Scotland, where some diagnositic pathways have closed because those places are overwhelmed by deamnd and have enough dealing with the cases they already have.

In the Scottish experience, it's overloaded services that give way first and adult diagnosis follows. Other places may have a different experience.

"flex/floating support" is a term that's been mentioned, I need assistance with daily tasks around living when burnout is worst, I need assistance with administrative tasks and shopping all the time and I need advocacy, this is just to start to stabilise, I also need to consider work support other than that horrible job centre.

In general, there is very little support for anyone who is able to live independently. I was diagnosed in 2021 and have yet to come across any support whatsoever. In my town there is a social group for autistic adults, run by the council, it has 38 places. My town has a little over 100,000 inhabitants and if 1 in 100 people are autistic the shortfall of provision is staggering.

Support is patchy across Scotland and The Lothians is a big area covering different councils. What are you looking for in terms of support?

This info is on NHS Lothians but beware - nearly all support services offered by NHS Scotland have years-long waiting lists unless you're a priority case, which generally means a child or adult with high support needs and several mental diagnoses.

This is a site that offers links to other sites and a brief description of what they offer.

Hi Alexa, thanks for a reality check - as you can imagine AI can reach out and find all these wonderful resources and build pictures of a fantastic nature from all the imagery and wording these sites use - I am aware of the housing problems and wouldn't want to take anything social away, I would be looking at private rent (not in Edinburgh due to the pricing) until some things are sorted long term. Outside of Edinburgh, the Lothians is better supported is that right?

Don't come to Scotland. Support services are hit and miss here. There are places but your main problem would be securing somewhere to live. Scotland has a housing crisis and you have to be here to have a chance of getting a flat because they vanish within a day or so of being advertised. The only way to get one is to ring up immediately it comes online and see the place the same day.

Hello TheCatWoman,

Having spent some time living in Wales myself at an earlier age I unfortunately know all too well how underfunded and underdeveloped the majority of the country is and can tell you that other than a bit of mountain biking or hiking when my brain allows my body to work in a less Frankenstein fashion I won't be considering Wales long term. 

I hope you manage to raise some issues and improve your situation and that of others facing similar in your community.

Don't come to North Wales, services are practically non existant, there are none on Anglesey at all, theres one place in Rhyll I think and thats it.

I was so fed up I actually wrote to our AM and First Minister, Rhun Ap Yorweth about it and hes interested in meeting me to talk about it. 

Hello Cinnabar_wing, thank you for your welcome and your reply.

RE: adult diagnosis implications - something I hadn't considered affecting this, it is affecting a lot of other options which isn't enabling me to kick on and live my best life.

You are on the right thinking with the towns and cities, I wonder if there are certain areas of the country earmarked for services where they have improved neurodivergent lives markedly? "AI" suggests Manchester and the surrounding areas with good transport links also, I have also considered Scotland and have contacted Number 6 at Edinburgh with the Scottish system being entirely different to England you are in control of the funding and support choices (as is my understanding) and that seems a bit overwhelming for someone who can't organise their own sock drawer!

I would love to stabilize and get back to work in a supporting environment as I have a long way to go before the long sleep (with no surprises or foul play accounted for) and as I'm constantly reminded by people who don't want to help me - I need money!

Apparently that solves everyone's problems.

First of all welcome!

One piece of research that might be useful is whether a region allows for adult diagnosis at all? That tends to then effect services as if they don't diagnose anyone, they don't have a group to need to offer services to?

Also I was thinking that bigger places like large towns/cities might have more budget for services? Certainly, that's my experience!