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

You could go through the Right To Choose option. Google it for your area and see a different gp.

Good luck.

Right to Choose is only for those where the GP has accepted a need for the referral to assess, which they haven't here. Agree to trying another GP, but Right to Choose isn't the solution to every assessment problem.

@glasses5432 I didn’t realise that. Thanks.

OP, a different GP might be the answer.

Can your health visitor help you to access another MH service? I am sorry you are struggling.
Try a second opinion with another GP in your surgery if possible.

It’ll be because you’re an adult and deemed to be able to function, and you’re no longer a child in full time education, which is where the autism assessments are vastly prioritised. This is exactly why I haven’t gone down this route, I know I’m autistic, don’t need anyone to decide that for me, but of course if it’s affecting daily life then a diagnoses could be useful for you. Support for newly diagnosed adults is scarce on the NHS. The right to choose could be a way to bypass this issue you’re having.

Is this in Oxfordshire? I've seen that they've stopped accepting adult referrals and those who have just joined the list are being told they won't be assessed till 2045.

What is it you want from a diagnosis? If its adjustments at work then you don't need a formal diagnosis unless your employer doesn't believe you - many employers will accept a screener and put adjustments in place on that basis instead. Alternatively your referral letter could be evidence you are likely autistic and get adjustments that way. There really isn't any support or anything on the NHS for autistic adults. The only benefit I've found (and the reason I went for assessment) is that it makes it a bit easier to get my concerns about DS taken seriously as there is a clear family history.

2045?! Why even bother maintaining a list?

@throughthecracksagain what are you hoping to get from the assessment? As an adult I am not sure you gain much other than personal insight, which has value, but it isn’t going to change your day to day. Having gone private for DD’s assessment, all you get from the assessment is a confirmation that you fall under the very broad umbrella that is autism. It won’t give you much in terms of insight into accommodations beyond what you probably already know, nor will it give you access to much in he way of support.

I was hoping to gain personal insight / validation and it will also enable me to have reasonable adjustments in work put in place too.

MH support disappears abruptly after your child turns 1 and then you are chucked into the general CMHT bucket which has a wait list this is years long as apparently services can't refer directly. So frustrating and disappointing.

Not Oxfordshire, without being too outing going to be vague and say NHS Scotland.

Feel like I am drowning with motherhood and nobody wants to help me as to the outside world I'm a 'functioning adult' constantly exhausted with masking

I wanted a diagnosis for my own self. Not about work or other people.

Im with you @throughthecracksagain

This isn't true. I was diagnosed with autism on the NHS after years of very poor mental health including many hospital admissions. I didn't seek an autism diagnosis, I hadn't even thought about it to be honest but I was sent for an assessment by my NHS psychiatrist and then given support through the adult autism team in the form of regular sessions with a psychologist. I do imagine you have to have significant life struggles though in order to access this and most people would not meet the threshold even with a diagnosis

It may be it was a poor quality referral from PMHT that didn't properly explain why the assessment would be appropriate. Is the referral form available online? In some areas you can self refer, or fill in the referral form and hand it to the GP to ensure they include all the information needed on their referral (which they won't be able to get from you in a 10 minute appointment).

I have just accepted I am going to be constantly exhausted, there is really nothing anyone can do about the exhaustion to be honest. No amount of help from autism services can take away the bone aching tiredness I feel 100% of the time

What reasonable adjustments at work is it that you’re not able to access without the diagnosis? Have you tried to get them and work have said not without a diagnosis? In many areas there has to be a specific benefit to you having a formal diagnosis for a referral to be accepted, such as something specific like exam arrangements that can’t be accessed without a formal diagnosis.

At work, my colleagues know about my diagnosis. I don’t use it as an excuse but, it does explain some of my worries and quirks.

I find life easier now I know.

The same thing happened to me. I was told it was because I could 'function'/did not show extreme behaviour all the time.

It is a joke really.

I display the common behaviours of autism (issues with sounds/light, can't deal with crowded environment, constant burnout, social isolation and inability to form relationships, issues with physical contact, inability. to hold on to jobs, anxiety, creating alternative worlds, hyper focus on one thing ...) but was not deemed to be extreme enough to justify a referral.

They are letting down adults and especially women who will present differently and be more likely to mask better.

Sadly gate keeping again by our healthboard, PNMHT sent me their referral so I had sight of what they had said and I would say it was surprisingly a comprehensive one! PNMHT also got me to complete the about me document which ran to 15 pages which they attached to their referral. It took me weeks to do and then to get a flat no was soul destroying 🫠

I could've written this myself 💖 so infuriating!!!

Did you complete a screening assessment? It may be that you didn’t score highly enough on that to be prioritised for an assessment. Not everyone who gets referred or does the screening will go through to the full assessment or get a diagnosis.

It doesn't sound like the GP has decided there was no need. Just that another team (PNMHT) referred and the rejection has been sent by the mental health team to the GP. However, if @throughthecracksagain is in Scotland, then there is no Right to Choose service.

I'm in England and the RtC process was very simple for both DH and I. We filled in the AQ10 questionnaire, completed the template letter from Psychiatry-UK, and sent it to our GP, who forwarded the referral back to Psychiatry-UK. We've both had our pre-assessment questionnaires and DH has his assessment in January. I'm still on the waiting list but was referred 3 months after DH.

Didn't even get to screening assessment - knocked back on initial referral form which was very detailed.

100% I find things easier to deal with if they are named rather than 'woolly'

I was diagnosed at 35. 5 years ago.

Not everyone who thinks they are autistic will be referred. Not everyone who thinks they are autistic actually is. That's why you see your doctor first.

I'm the opposite I didn't think I was.

@Lougle my GP was frustrated for me too as he could / can see the need and was very apologetic about it. He tried to re refer and was told a flat no again by the adult ASN team as 'throughthecracksagajn is well educated and functions in society by holding down employment'

Exactly. Just because you think you are autistic it doesn't mean you are. That is why I hate the self diagnosing.