Autism Referral Declined

[throughthecracksagain]

Feeling very wrung out and let down yet again. GP surgery called to ask why they had a denied referral letter through from the mental health team. I explained that PNMHT had referred me for autism diagnosis and support. They couldn't tell me why it has been declined and there wasn't anything that they could do and to speak to PNHMT. I explained to them that PNMHT won't see me as I've been discharged from them due to DD being over a year now.

Is it because I 'function' they won't accept my referral. Cant speak to mental health team directly as they gate keep massively.

Totally rambling post but feel that I've fallen between the cracks again. Can't afford to seek a private diagnosis as DD nursery fees have kicked in

What would a diagnosis achieve? You don’t need it for education support like a dc would. As an adult, can you read up on how to manage /helpful skills and approaches to support you in making life easier? There’s so many things written on the topic I’m unsure what you’d expect the nhs to provide.

When I disclosed to work about my initial referral they said that's fine keep us posted and when you get seen you can access occupational health to discuss any reasonable adjustments. I now need to go to occupational health for my physical health post pregnancy so that's on the list to do after the Christmas / new year break as I have a hospital appointment at the end of December to see the consultant for my physical health issue. Work have been really really supportive previously so I'm wondering if I have taken what they said about occupational health literally or if I would be able to see them prior to being seen / officially diagnosed.

Totally understand about reasonable adjustments, in a previous life I would submit them for apprentices especially around exam / assignment adjustments.

@Fuzzyandwarm that's a really good way to describe the tiredness it's bone achingly bad 💖

@Oreyt to be clear, PNMHT were the ones to highlight potential autism due to traits and discussions I had with them. They then put in the onward referral with my blessing. I didn't wake up and go 'oh I think I'm autistic' it explains quite a lot about me when I reflect on it.

If @throughthecracksagain has ASD and is spending her entire time trying to function, that's exhausting. It's possible that some adjustments can be put in place to make things easier. If a diagnosis wasn't needed for that, fair enough, but if it is, then she's being blocked from having her needs clarified.

DD2 was 'fine' in school - I was told she was 'fine' all the time. She really wasn't. Diagnosis of ASD has made it so much easier to get the support she needed when she fell apart.

DD3 was 'fine' in school - she really wasn't. Her diagnosis of OCD (ASD dx pending) has helped to get her the support she needs.

Giving it a name. Things are easier to deal with (for me anyway) if it has a name.

@Lougle thank you. You've put it much more eloquently than I can 💖

@throughthecracksagain it might help to know that you don't need a diagnosis to get Access to Work grants (I thought you did, but reading again, you don't) and mental health is included in the Access to Work system.

There is a misconception that the NHS has to provide services that are needed. They absolutely do not. Each Trust provides the service they choose to prioritize from within available resources. In my Trust we don't provide signing teaching at all for anyone. We also don't provide speech and language therapy at all for any peads over age 8. This can be revisited at school leaving age when they become the responsibility of a different Trust. Autism is another disappearing service. It's rubbish of course but people don't want to pay for better resources via tax.

What is PNMHT

I don't think this is the case. I used Right to Choose for my daughter's assessment. The provider did the triaging process. The GP had to then complete the referral (the provider sent a template letter) but they did not play any part in triage. IME GP practices will try to put up all sorts of barriers but you have a legal right to use a Right to Choose provider.

Postnatal Mental Health Team (edited from Perinatal - could be either but @throughthecracksagain references being discharged because her child is over 1).

@Oreyt PNMHT is perinatal mental health team who support you through pregnancy and then up until your child turns one

@lavenderlou as far as I'm aware right to choose isn't an option in Scotland but will stand to be corrected if that's not the case 💖

Right to choose is only in England. Having just looked at a random health board in Scotland they use CMHT for autism assessments which would explain the focus on functioning in daily life as the threshold for referral - it's a ridiculous system and I'm sorry you're stuck in it. I don't know what to suggest other than writing to your MSP but that takes more energy and won't change anything quickly.

@Maiyakat thank you for checking that out. Pre mumming I would absolutely have done the campaigning however now some days I hardly have enough time and energy to parent / go to work / manage the everyday household 🤦‍♀️ I feel like a shell of my former self 🫠

Just to add for other readers that NHS Glasgow has a separate adult autism assessment team (so not all via cmht).

It's a definite issue for boards running neuroassessmnent via camhs or cmht that not all people who may be neurodiverse meet criteria for mod-severe mental illness.

@throughthecracksagain you should be able to request all letters about you, which would include the reason your referral was declined if that is not clear? Sorry if I am misunderstanding and you do know that they declined it due to no (perceived) functional impairment.

Make a formal complaint.

Have you been told the reason you were declined other than that you are coping with life? If it’s just that I’d try another doctor and referral, but it could be that they reviewed your questionnaire and they didn’t think you scored highly enough for an assessment.

That's the reason 'functioning in life and well educated' were their reasons. FWIW I worked bloody hard to be 'well educated' (MSc in my field) never mind I have number dyscalculia 🤨 and the only reason I'm 'well educated' on paper as it's something that interests me greatly. Ask me to do something I'm not interested in and I'll procrastinate 😂

Myself and GP did try explain that I function in life as I'm adept at masking however throwing motherhood into the mix along with a physical condition that has joined the party since pregnancy it is causing me great distress / exhaustion as I'm no longer able to sustain masking and motherhood effectively 💖

Can I recommend a couple of books. I’d especially recommend the Sarah Hendrickx book. This lady diagnosed me, on the NHS, years ago. She shows women who have been often late diagnosed, misunderstood, confused by the fact that they’ve maybe careers, relationships, kids, friendships and all that and yet… something is different/slightly off/unusual/difficult.

My diagnosis is kind of like a blueprint to me. It makes me understandable to myself and others. I’m not aloof or odd. I am different. I’m funny, good company and different. I have artistic talent that in my family came from nowhere. Unusual and different.

My diagnosis has been a kind of gift, a superpower.

If it helps you, the autistic community says that self diagnosis of autism is enough to be classed as autistic. You know yourself best.

Are you able to get accommodations in work without a formal diagnosis? Surely there's so much overlap with anxiety, depression and other mental health illnesses that you could get accommodations for the symptoms you suffer.

I submitted my assessment form a couple months ago. Got a year waiting list and I'm absolutely dreading an in person assessment if it ever happens but I hope it will be worth the effort in the end. All the best OP.

This is what I was going to say. There may be a screening questionnaire that has a cut off point.

DS doesn't meet that cut off point as he has strengths in some areas and not others. We had a SALT assessment which suggested describing him as having traits of autism which we feel is accurate.

Would it be worth you going down a similar route - if you have social communication issues, you could probably get a private assessment and use a report to get adjustments?

Thank you I will check that book out ❤️ I get the blueprint I feel I don't 'know' my blueprint 💖

@drspouse I didn't even get to screening questionnaire stage they flat out rejected referral at initial send 🫠 maybe they did the screening from that without meeting me who knows 😩

I'm going to clarify with work about accessing occupational health pending being seen and explore that as even if I do get accepted onto the wait list I know the list is years long with CAMHS & CMHT through my line of work 💖