AIBU to refuse an autism assessment

[DeeplyUnimpressed]

I was referred to a mental health worker for severe anxiety, but the sessions weren’t helping. The worker suggested I might have ASD and should seek an assessment, which I declined as I don’t believe I have it.
She continued sending me information aimed at people with learning disabilities, which I found upsetting. When I explained this, she said there was nothing else she could do to help, and the sessions ended.
Since then, whenever I’ve contacted the team for further support, ASD has been brought up again, and I’ve repeatedly been asked to refer myself for an assessment.
I asked what support would be available if I were diagnosed, but was told they don’t offer anything and could only suggest an Autism UK support group.
AIBU to keep refusing? I can’t help feeling they’re trying to fob me off rather than address my anxiety and help me access appropriate support.

I really must come off the internet but just had a thought have you tried exposure therapy OP.

This Reddit (yes I know not exactly scientifically backed) https://share.google/gdpWaP3TLKuDSfGfq
made me realise we often do similar with DD to help her build up the skillset and confidence to cope.

You need to take it slowly but could you just open your door and just leave it open for a moment, then sit on your front step as a start, then go down the path, perhaps use Google maps to visualise a walk to somewhere.

I know I'm using DD a lot but that is because I e worked through it with her. So getting to school we used to have to walk her she was so anxious about it, then she started to go with her sister, once she was comfortable with that she'd go a little ahead of her until she built up to going alone.

Same with when she started at a school a bus ride away, I went on the bus with her, then she went alone but had pictures of where to stop and get off.

She's now pretty good at travelling to lots of different towns and cities near us.

I hope that helps

She hasn't been offered an assessment. She's been told to seek one. There's no indication she won't just have to join the queue like everyone else.

That’s a very considered post, thank you.

I know myself and I have developed strategies to cope with daily life. It wouldn’t be a revelation to discover I experience eg, sensory overload and need to adjust for that. I already do and I always have.
My life is set up to suit me, it was fine for many years but suddenly the anxiety just became overwhelming. I’ve previously looked up ASD coping strategies and I pretty much do all of them naturally.

A parent told me her school pressured her to get her son assessed, and when they went, they were told that school seemed to push a lot of kids to them, and that they didn't actually have it, it was just that particular school pushed it. Professor Frith says many people are over diagnosed and the term is no longer helpful-look that up if you want to, but I don't blame you not doing.

Yes, it was actually exposure therapy that I was doing with the mental health worker. It wasn’t working so she stopped the sessions.

You have had treatment but it wasnt working for you, and they are not offering you any other treatment.

Have you only tried one form of therapy or several? Do you follow the strategies? Treatment only works if the person receiving it is able to engage. Its a bit like when people have drug additions, they can have all the therapy, medication and support, but they arent going to overcome their addiction unless they really engage, no one else can do it for them.

Have you specifically asked them (or have they explained) why they are not offering any alternative treatment or what difference they think a diagnosis would make for you? You need to go back to them with these questions and the points you've raised here directly with the MH team

As I mentioned in a previous post, if you are not happy and think they are creating a barrier in accessing treatment, then make a formal compliant.

And the independent review has found that actually the numbers are stable and we should be moving needs led plus diagnosis model and also that the rising numbers coming forward for assessment have not been accompanied by any fall in severity or impairment – those now presenting are no less affected than those identified before.

DH currently getting counselling via psychology department in our local NHS hospital. The psychologist had to ask his line manager's permission if he could do the ASD referral on his behalf - they are done sparingly. It was thankfully approved. DH hopes that by doing this referral he will get appropriate support for how he is as a person at home and at work.

OP just entertain it and you'll probably find it will be of benefit to you regardless of the outcome. You'll be learning more about yourself either way.

I wish my GP had pushed for neurodivergence assessment for me with my constant anxiety and depression years ago! As it stands I was referred by a mental health professional who actually listened only to be turned down and had to resort to paying privately. Currently grieving what I could have achieved in life with earlier diagnosis and relevant support.

If the anxiety has become overwhelming then it's feasible you have autistic burnout. This essentially means having to 're-teach' your nervous system in quite a tailored way. It's also possible that the strategies you have taught yourself may now be insufficient for the level of demands you're coping with.

Of course it's your choice to turn down an assessment. Although many find a diagnosis helpful, you don't necessarily need one if you accept it's possible you have it, and research enough about autism and associated anxiety to understand more about what might be going on. However, I'd suggest that if you're overwhelmed by autism related anxiety of burnout levels, then the recommended treatment may be different to that recommended for more specific anxieties.

Fwiw, my 9yo dd was diagnosed in March this year (after a second, lengthy burnout). Through her diagnosis I have understood myself much better. I'm not going to seek an assessment, but approaching some of my own difficulties through this lens has been immensely helpful.

How old are you OP?
If you’ve managed well for a long time and then the anxiety has suddenly become overwhelming for no obvious reason, do you think it could be hormone related? If so you could maybe consider HRT?
This isn’t something I know a lot about - just a thought in case it’s helpful

Thank you everyone. There’s some really interesting things that have been mentioned on this thread, I have a lot to think about.

I would make a complaint at this stage. What a mess. How are you supposed to learn to deal with your anxiety when no one is listening to you? Mental health services are a shambles, and private is not much better than NHS. People talk about things like asd with complete confidence, like we actually know scientifically what it is.

Sending hugs op, I hope you find someone who listens x

Since when is autism a learning difficulty it's a neuro diverse condition

They seem to want to pin point how your brains working to offer the right support

You can have two conditions which may require a specialist expert to support you with

They probably see it as pointless to treat for anxiety when in reality it might not be anxiety

Have you considered seeing a private therapist for your anxiety OP? Many therapists have online services nowadays if you don’t want to go out and meet someone face to face. Or you could ask your GP for a psychiatry referral or referral to a clinical psychologist? Or you could contact a local mental health charity for advice/support (e.g. Mind?)

Regular NHS Talking therapies normally start with CBT and there is a very long wait for anything like talking therapy for anxiety on the NHS.

Saying all this, I do agree with others that you have nothing to lose by having an autism assessment. What is it about this that worries you?

I was also going to ask if you had considered perimenopause. My anxiety was awful but since I'm on HRT life is manageable again. I didn't have hot flushes or typical symptoms - I was lucky that a nurse suggested it. I was also young for it.

I know you feel like it won't help but my friend in work suffered with anxiety and depression for over 20yrs she went to allsorts of different therapies nothing helped her she would always relapse time after time. 3yrs ago she had a massive breakdown couldn't leave her house her anxiety got that bad, she ended up under the mental health crisis team which eventually led to a psychiatrist seeing her and she ended up with an autism diagnosis. Before this she had never even imagined she might be on the spectrum. Since having that diagnosis she looked into it more, they gave her tips and help to deal with situations and since she has understood why her whole life has been how it is she is so much better. She has pulled through so much in the last 2yrs since having her diagnosis, she no longer suffers with her anxiety the way she used to, she's more confident in her decisions and life in general. I have seen such a massive change in her since getting a diagnosis and before that she never ever would have even entertained the idea of being neurodivergent because she was so highly masking all her life she didn't even know who she truly was beneath the mask. I'm telling you this because you might actually find it helpful to seek an assessment and if not what's the worst that can happen, you won't get any help from it but surely you won't be worse off. You'd be surprised as to what finding out that you're different but that's ok will do and how your anxiety is based around the world being modelled for neurotypicals not for us neurodivergent people.

You were given appropriate therapy. It did not work. Are you aware that stubbornness can be a marker of autism? ;)

ps autism is not a disorder or deficit but it does need to be recognised and understood. And the support post diagnosis needs to improve as the anxiety can be treated; it just needs a neuroaffirming approach which is not the mainstream offer.

A complaint? To the service trying to get to the bottom of OPs situation? Yes, definitely complain, that seems so logical and sensible

I spent years being treated for depression and anxiety. Nothing seemed to work. After my daughter’s diagnosis of Austim I sort an ADHD assessment and have subsequently been medicated for it. The assessor also said I’m likely autistic too which makes sense to me. I’m the happiest I’ve ever been. It wouldn’t have crossed my mind before but now it makes so much sense. I look back on things that have happened in the past and ways I’ve been treated and I see it through different eyes now.

It takes time to process the possibility you might be autistic and/or ADHD. It’s worth sitting with the possibility and do some reading/research/meet other neurodivergent people. My realisation came from my daughter and then being around other neurodivergent parents through her and feeling like I fitted for the first time ever.

It sound like they have tried to help you. They clearly have strong suspicions you are neurodivergent & they know they are probably not the best people to help in this case hence why they have suggested getting assessed. This may lead you to people who specialise and more appropriate support in the long term.

can I ask why you don’t want the assessment? I know you say you don’t think you have it but it is feelings of shame etc? Cos honestly there is nothing wrong with being neurodivergent & it certainly doesn’t have a bearing on your intellect etc. it’s just how the brain is wired

I was in therapy for a bad bout of depression etc & it was through conversations with her that my therapist asked if I’d ever been assessed & explained to me why she suspected ADHD. Honestly for me it made sense & years of poor mental health started to make sense. Now on a waiting list in my mid 30s. It doesn’t magically solve anything but if you understand why certain things affect you you can put systems in place to cope better.

I think you would be mad to refuse the offer of assessment. Your health worker sees a lot of patients and must have good reason to suggest assessment. There is a threshold you need to meet to even be considered. I am 62 and have recently be diagnosed with severe ADHD. I was shocked. My daughters have ADHD so after reading about it I thought it was worth being tested but in reality I expected to be told I had mild symptoms if any. No, it came back as severe ADHD. They also told me I had scored very highly in questions screening for autism. So I am now waiting to be assessed for ASD. It’s taken a while for this to sink in but it certainly does explain a lot of things that have happened in my life and gives me a new perspective. Honestly what harm can being assessed do you? Self knowledge is empowering. I think you need time to adjust to the possibility that you are neurodivergent. What good does ignoring it do? At the end of the day you will still be you but with more insight about yourself and understanding of your anxiety and where it comes from. Also the diagnosis is for you, you don’t need to tell anyone if you don’t want to. Accept the offer, you will have a wait anyway, in some areas it’s years.

Can you contact the NHS autism and adhd diagnosis team and ask what support there would be after and if none how you would access support or treatment from the Trust.

I always find issues recorded on an email tend to be taken more seriously. So if you send an email asking what support there would be in either scenario( diagnosed / non diagnosed) you could then point out any discrimination directed at diagnosis or non diagnoses and say you will be taking it to PALs.

Try to keep it professional, succinct and to the point. Far too often women with ND or MH are written off as being hysterical.

can I ask why you don’t want the assessment? I know you say you don’t think you have it but it is feelings of shame etc?

Diagnostic overshadowing. (Please don’t tell me this doesn’t happen, I’ve experienced it many times due to SMI).

There is nothing the nhs offers in my area for adults with ASD.
I could try emailing my question to the team, I doubt I’ll get a different answer than I’ve already been told many times.
It would be via right to choose that I would be assessed.

I don’t think the first therapy was appropriate, or maybe the person delivering wasn’t the right person. The worker told me she wasn’t qualified to work out what symptoms could be part of my existing SMI and what could be anxiety or anything else.

I think the problem is that standard counselling/therapy methods do not work for anxiety caused by ASD so there would be no point in continuing to offer you this. You've already said yourself that the sessions haven't helped you so far.

Your counsellor/s have obviously seen something in you that makes them think you could have ASD or they wouldn't have suggested it. You say you have developed coping strategies over the years - a classic sign of masking - but that these have stopped working recently and your anxiety has got out of control. You don't say how old you are but are you going through perimenopause by any chance? Many neurodivergent women find their coping mechanisms no longer work during this period due to the huge hormonal shift (myself included who was diagnosed with ADHD earlier this year after my mental health suddenly nose-dived).

No-one apart from a qualified assessor can tell you if you do have ASD or not, but if you're so convinced you don't why not have the assessment anyway just to prove it? Surely, if you are confirmed as not having it, you can request therapy for your anxiety as before? And if you do have it, at least you'll have a better understanding of and insight into why you feel anxious.