Autism assessment service "doesn't exist" in my area.

I think that a minority local authorities and other official bodies do not understand what a valid diagnosis is. The only criteria, from the official NICE guidelines, for a valid diagnosis is that the clinician or clinicians issuing the diagnosis are qualified to do so and are members of a relevant medical professional body. Where the money came from to fund the assessment is irrelevant.

If anyone challenges a private diagnosis made by a fully qualified clinician, just refer them to the NICE guidelines.

In my case, I asked for my diagnosis to be sent to my GP and I was immediately given a prescription by my GP that the psychiatrist who diagnosed me had recommended (for a problem associated with my autism).

Hi, please check but I believe Right to choose isn’t applicable to Scotland.

Thank you all for the support and advice on this. It is greatly appreciated and has boosted my morale on this significantly. What a great community. 

I did mine privately and was able to pass it on to my GP to have it added to my medical records.

I suspect the company may need to be licensed to be able to provice and "official" diagnosis so that is deffo something to check with them before booking an appointment.

Am I correct in thinking that private diagnosis is not recognised by the authorities? I'm sure I've read that in the past. Maybe things have moved on?

Do not listen to that garbage about MH would have picked it up in the past. It is a standard patronising shutdown to get you to go away. It is a red herring. That GP is talking rubbish.MH most often DO NOT pick up on autism even when it's obvious because they are ignorant and arrogant.  Believe me, I know what I'm talking about.

Stick to your guns and insist. It's incredibly hard to get to the point of being assessed, you've obviously put the pieces of the jigsaw together for your own situation. The other line - would it 'really' make a difference? I mean 'really??' - like it's some bit of crud, as if it's pointless at the end of the day, (you only find out if you're autistic???! - like it's low priority) how dare people say this. It's scandalous. That diagnosis makes sense of your struggles and difficulties (lifelong struggles), and no-one has the right to take that from you. Without it you can be bobbing about out at sea forever wondering what the hell is going on.  Anyone who suspects, who has filled in the self questionnaires, looked at traits and characteristics and identifies with them, etc., needs to officially know one way or the other.

Fact is that since Covid, the GPs don't want to refer folk to consultants for anything. It's all kind of screwed up.

You say she said she would drop them a line? To who will she do this? So the service does exist. Being denied the right to know "what is wrong". (I know this is an incorrect statement). If you get no success with who ever it is that she is referring you to, maybe refer yourself. Contact your local MP? 

The signs are often missed as we know, despite accessing mental health services. So it would not necessarily be picked up. 

Could you ask her for a copy of the referral letter that she is sending? You have a right to see your records. 

Thanks you both for this advice. I have had a look around in relation to "right to choose" as it relates to NHS Scotland but I can't really seem to find anything. As far as I am seeing it is only a thing through NHS England. Even reviewing the charter for patient rights and responsibilities from the Scottish government there is no mention of "right to choose". 

I will keep researching and thank you for the helpful advice and links you have offered. 

I had no contact with the NHS or any clinician for mental or behavioural problems before I sought an autism assessment. After being alerted that I and my daughter might be autistic through my daughter's CBT therapist, I researched autism like a man possessed and became fully convinced that my problems and traits fitted an autism profile. I decided to pay for private assessments for both myself and my daughter and we were diagnosed a day apart. Just because people can function in society and never seek help, does not mean that they are not suffering greatly in coping and trying their best at being functional. I just wish that clinicians recognised that being able to do things, but struggling, is often as debilitating, or more so, than not being able to do them at all.

Iain said:

Ask them about the "right to choose" option on the NHS where you can be referred to a private company (they pay for this) - you can normally do the sessions virtually if you ask the company and that would seem appropriate for your situation.

In respect of assessment or treatment on the NHS or via the NHS involving private health care providers EuanF ~ check the information given via the following link:

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

I'm in the same boat, although probably considerably older than yourself (closer to 55!). I can't get a diagnosis on the NHS in my local area (in Scotland), despite having a psychologist suggest that I'm more than very likely on the spectrum.

I'm the same in respect to a diagnosis - yes, it is probably a bit late in life, but confirmation for me anyway, would allow me to understand and validate a lot of things in my life and also allow me to understand what is happening when things 'go wrong' - that's the way I have had to describe meltdowns / shutdowns in the past. My head just goes wrong.

Since it's been suggested that I could be autistic, it has helped me in starting to understand what's going on, but it's still as if I need that validation to allow me to accept it. The only thing I think it will change is my understanding of what is going on and not the way I'll live my life as such. Could even be easier as I won't have to mask as much.

I'd also be interested to know what the other options are.

EuanF said:

She then went on to explain that what is difficult at the moment is that an autism diagnostic service for adults currently "doesn't exist" in my area. I live in East Lothian, Scotland.

Ask them about the "right to choose" option on the NHS where you can be referred to a private company (they pay for this) - you can normally do the sessions virtually if you ask the company and that would seem appropriate for your situation.

The waiting list for these companies is only a few months I think.

The alternative is to go private yourself but this will cost between £500 and £2,000 depending on the company you choose and what difficulties you experience in the meetings.

I would also have a good look on the NHS site and make contact with any helplines there to find out what the options are for a Scot as the rules under your government may be different.

I'm really sorry that you are struggling to get assessed. I live in London and got referred to my local team but there is no one to do the assessment and hasn't been for sometime. I have waited 3 years for this assessment. At the end I did ask for right to choose with Clinical Partners because right to choose with psychiatry uk is at standstill. They didn't send the referral or sent it to the wrong place. They were insisting that they sent it, so won't send again. I got fed up of waiting, saved a bit and am now going private with psychiatry uk. I don't think its the case that it doesn't exist but there are shortages off specialists to carry out the assessment.

remote areas with very little infrastructure id expect issues like that. but yet dont they often do remote assessments? ... over zoom or whatever? that could solve it, but your gp should have known thats possible if they do it so maybe they either dont do that, or maybe your gp has never came across this situation before so doesnt know they do remote assessments by video calls?

I was involved with psych services as a teenager too (anxiety and suicide) but I was in my late 20s before anyone suggested I might be autistic and mid 30s before two psychiatrists said I definitely was and got referred for a proper assessment (diagnosed earlier this year).

So the fact that it wasn't picked up on by anyone doesn't mean you're not autistic; a bunch of people's autistic traits become more overt as they get older or go through certain experiences. And lots of people aren't good at seeing the signs anyway.

I hope someone else can help you with the assessment availability. They also didn't do adult assessments in my area, but I live in London so I could just be referred to another borough that does.