Database for GP surgeries with autism experience

now it makes sense to voice one's opinion but offer no solution, when there apparently is no realistic one

I know that feeling and had thoughts to the extent that I wondered if I was a monster.

Gladly, if I agree to research, I am not, and violent thoughts seeking justice and vengeance are interpreted as intrusive thoughts which are a coping mechanism for the brain to feel some form of power in a world where the person feels powerless. 

But yes, too many people in positions of power where their lack of true knowledge (vs. opinion and bias) get in the way and ruin others' existence.

'..you can only be an autistic adult if you have a learning disabilty.' What a neurotypical response that is! They do so love to rank everything in meaningless layers of suffering.I presume this means that you can be 17 years and 364 days old and the next day when you're 18 your autism disapears like magic? This seems to me to be NT's gaslighting ND's (AGAIN) and trying to stretch resourses by by nit picking over who's the most deserving.

Sometimes I nderstand why Caligula wished all Rome had one neck so he could wring it, I feel like this about so many "services" for people like us.

My general take now as someone who continues to see the gp for other things is that a good one with refer immediately for things which require investigation by a specialist. Autism isn’t viewed generally as curable so it wouldn’t make much sense to refer for investigations once this is known but the symptomatic things related to it like poor sleep (which I suffer from) and others can be prescribed for or deferred to therapeutic services. When o say good go you need to understand that any decision may also be future damage limitation for their job. So referral for a heart scan, ct brain scan or cancer blood test will be in their interests but in some cases it’s not their decision to make but the specialist consultant you are referred to. I would like to know howASD is thought of by doctors because the only way I can manage it is by self medicating, and hugely antisocial practices which are also detrimental to my quality of life, which is what they should be supporting. 

NAS64261 said:

is it too much asked for someone with an academic background (like a GP) to do some own continuous professional development reading that can make significant difference?

Reality suggests that it is too much. They are not doing it for whatever reason. I was just pointing out reality to help you realise your hopes are unrealistic.

It is probably because NTs just don't care about the things we do.

the kind of investment you are referring to shoots far beyond the target. I am not asking the entire NT world to 'speak' autism, but to understand and ask appropriate questions, after all the NT world takes it for granted for a ND to learn their 'language' and give no credit for other people's efforts,.... so getting off one's horse costs nothing  except altering one's point of view. Is the truly too much asked for?

If it took a layman like me 20 minutes to look up and read about autistic shutdown, meltdown and burnout, masking and the cost of it,  is it too much asked for someone with an academic background (like a GP) to do some own continuous professional development reading that can make significant difference?

doctors lacking social skills.... I guess it makes sense why pseudo-scientific alternatives like faith healing are seen as options that work, if all that one wants to have a compassionate and understanding ear that offers a solution that makes one feel better. 

Won't take long till the NHS is going to prescribe Tetley is it ?? lol

[i]His response (forget about the lack of empathy)  shocked me.[/i]

Doctors seldom have social skills. Don't take it personally.

I think you'd be hard pressed to find a GP who specialises in autism. It is a bit of a specific speciality. You'd be more likely to find one with a particular interest in mental health in general.

The surgery I just registered with currently has 23 doctors listed on their website. Only the business partners have specialities listed and they are limited to drug/alcohol misuse and paediatrics. A previous doctor I saw openly admitted that he wasn't an expert on Autism but that he had had autistic patients before, and did his best to help me. He also openly admitted to not being very good at orthopaedics when I needed a hip xray and he referred me to a suitably qualified consultant.

They may not be particularly knowledgeable, but they should still be able to help you with your concerns, such as finding out about local NHS or council services (as well as charity or private services), although this may be something better delegated to a secretary.

I'm not surprised you find it hard to remain polite, I would too. I'm very lucky that my GP's are so brilliant, they try and do as much as they can with limited resourses.

I think everybody is struggling with years and years of underinvestment, we're quite happy to vote for tax cuts and councils that promise not to raise council tax, but we still want them to provide Scandinavian levels of service and they just can't. There is a lot of waste in the systems, but not on the front lines where all the cuts seem to happen. I think theres also a massive attitude problem in many of the "helping and caring" agencies, they get so protective of thier interest and end up blaming those of us seeking help that they dont' cater for. I see so many different groups that seem to operate in silos, never talking to each other, all seemingly unaware of or hostile to each other.  The group I was refered to by my GP who was really happy she had somewhere to send people for help and had just heard of this new group and had referal forms sent to the surgery, when the group contacted me, they said that they'd had to speak to management about whether to respond to my referal as it was on the old form! My GP had only just recieved the forms. Why bother sending out forms that are out of date? It makes no sense!

I did the quick maths. 40% of my council tax bill alone goes to adult social services. Imagine how many potholes could be filled,  wardens employed to efficiently tackle public ASB, and SENDs added to offer vulnerable children more equal opportunities. And that's just talking about redirecting council expenses. 

Obviously it's not efficiency what Westminster priorities, but votes. And in an aging society it would be a highly unpopular move to steal the candy from a  geriatric.

Thanks. I have one of Dr Megan's books and love her podcasts. She really knows her stuff! I also love Orion Kelly's podcasts, a great autistic guy who speaks from the soul and who never sugarcoats.

It reminds me very much of when my son was diagnosed using the private route. We went private as he was struggling badly at school and was being suspended every second week plus was barred from afternoon classes, and the headteacher told us that he would be expelled if we couldn't provide a clinical diagnosis in due course. 

After that hurdle was taken his headteacher was excellent in calling in a support team, which included a NHS psychiatrist and who turned up to the support team meetings only once. We had to wait 6 months for an appointment scheduled by the support team, in a nutshell all that he did was to reconfirm that our son had autism. When I asked him about mental support he snapped back saying 'you've already got the diagnosis, what else do you want.'

It's seriously hard for me to remain polite when I walk into a surgery. I don't owe them anything anymore 

My odyssey with the NHS trusts was comparable. I first asked for a referral in 2013, at which time I was experiencing an episode of meltdowns. The GP bluntly dismissed my request, saying that I was coping. She didn't even ask how I was doing or why, she appeared confident from seeing me for the first time within 30 seconds that a referral was not necessary. Three years later, and changing surgeries, I got past the hurdle of the GP, only to have my referral lost in digital paperwork twice. The third attempt was thrown out by the trust's budget committee, basically saying there was no interest spending the money. Next, a community mental health centre psychiatrist dismissed my request saying that I was making eye contact, therefore I impossibly could be on the spectrum. 10 years of emotional agony and two unfair dismissals from work due to lack of a clinical diagnosis.

It would be actually better for the system to openly tell us where to go than lie to us that they're there to help. I'm coming to believe the only thing they're helping with is getting rid of their guilty conscience.

NAS64261 said:

Well if that isn't a view that views people as cost/benefit cases I wonder what is.

I wrote this to demonstrate how the NHS will view it - they have to do it as a cost / benefit analysis as their duty is to help the most people possible with the little resource they have.

NAS64261 said:

I rather cut all adult social services and life saving surgery for 60+ in that case.

Have you looked at how many people would be affected using your methodology? Someone has to make these decisions and it is a thankless task. Whoever misses out will naturally think they are more deserving.

I don't offer any solutions as I know how complex and difficult the decisions are.

Well if that isn't a view that views people as cost/benefit cases I wonder what is. I rather cut all adult social services and life saving surgery for 60+ in that case. Much more would be saved and it would be way for profitable,. especially in times of outdated and overstretched welfare systems.

This isn't my personal viewpoint btw.

NAS64261 said:

And then one wonders why high functioning autism ranks as the group of with largest percentage of suicide ideators. .

Being realistic about it, the cost to recruit, train and deploy enough mental health specialists is enormous - far more than many other areas of health where the same expenditure could result in much better returns.

Personally I think we need to learn to look after ourselves in the short to mid term as we are really the only ones who care enough amd have a vested interest in any improvement.

And then one wonders why high functioning autism ranks as the group of with largest percentage of suicide ideators. . For a 'health' service that's pretty sick.

NAS64261 said:

NHS databases exist to look up specialists such as dietitians, diabetic nurses, paediatricians, urologists etc. practicing at GP surgeries, they can even be filtered for patients requiring accessibility and Loop, but they throw a blind eye at people with autism or ADHD?

I think you are compang apples and oranges here.  The databases of specialists are made up of people with specific roles (their specialisations) whereas you are looking at GPs (the key is in the word general) who have to know a little about a great many health issues.

Training around neurodivergence is required by the NHS as I understand it, but there is no timeframe for its completion or standards of knowledge measured, so it is largely ignored in the conflicting demands of a service that is already very overstretched in just doing its core service to sick patients.

There are a great many conditions that fall under the umbrella of neurodivergence of which autism is only one and the knowledge changes with every year. Finding a GP who has the time to learn about these conditions will be very hard and many have little exposure to the area at all.

In a nutshell there just isn't the knowledge out there or anything that will make sure there is.

Things do seem to be slowly changing but I expect this to take many decades to come to the level you want it to be at.

This is all just my opinion of course.

In my region of Scotland, you can only be an autistic adult if you have a learning disability. I couldn't even get my child assessed going through the doctor, CAMHS rejected the referral, basically saying it had to go through the school, which is trickier when kids keep their heads down in class and struggle, and struggle in the playground where teachers don't watch. My other child just got diagnosed as it does effect school work but has now been discharged with no support. I'm glad I got diagnosed privately so we can figure it out together as there is no help.

I've had this conversation a couple of times with my GP's and they're unhappy at the lack of support too, they said they just don't know where to send people. The place for N. Wales that deals with ND is totally useless, they seem to offer so little help that I wonder what they're actually for? Other organisations, like MIND, do activities for ND people, but only if your school age, they more or less told me go away, using less diplomatic language than that and treated me like I was wasting thier time by even asking and hung up on me. If thats how they treat people then it's little wonder that one of the most common questions here is about help for us latelings who are just left to get on with it.