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.

It sounds like they are trying to help you access appropriate support actually, albeit not necessarily going about it very well.

Anxiety is very common among autistic people, and the recommended treatments are different to the approaches that work for neurotypical people.

So if they think ASD is very likely, it makes sense to check that and get a definitive answer (one way or the other) so that they can be sure you are having the right treatment.

The worst case scenario is that doing the autism assessment wastes some of your time, whereas the best case scenario is that doing the assessment gives you enough information to access the right support.

Gosh, most adults are having trouble to push hard to be assessed, you don’t seem to recognise what a good position you are in here. Nobody is trying to fob you off, if anything they are trying to dig deeper. What help did you want for your anxiety? While it’s true that there is no treatment for autism there is a lot to be said for understanding and acknowledging it, to know that is the reason. I am autistic and finding that out has been life changing.

No, you are not being unreasonable. The recent inquiry into NHS mental health is talking about moving towards a 'needs-based approach', i.e. one that doesn't make a fetish of diagnosis. And this is partly because we have reached a point where overdiagnosos is often harmful, and blurs social and medical need.

In some circumstances diagnosis of mild cases may be beneficial - either if you imagine, with some evidence, that self-knowledge might be transformative or as a bureaucratic move to help you qualify for a particular treatment pathway. In other cases, I think diagnosis of mild autism can often be a destructive detour.

(By 'mild autism', I mean autism that is clearly different from the profoundly affected individuals who are often non-verbal and who cannot live without extensive support)

Do you have learning disabilities? This is not the same as autism. LD is more intellectual disability not that the two cannot co exist.
Of course it’s up to you if you choose to have an assessment or not and should not feel pressure but if you feel it is just anxiety you can self refer to your regional MH and access online CBT for anxiety alone which could help and you will usually get a phone call after each module to discuss how you are and to assist you along the course.

So you mean ‘autism’ and ‘autism with learning disabilities’? Mild autism isn’t a diagnosis.

I know it isn't a diagnosis. But there is some push in the diagnostic community to have it - or something like it - adopted as a diagnostic category, to avoid some of the problems that have come from stretching the concept of autism so wide.

And regarding "autism with learning disabilities", I certainly wouldn't assume that this term meant that the affected person had two separate conditions (although of course they will in some cases). It can simply mean that their autism is profound enough to generate learning difficulties.

What support are you hoping for to address your anxiety? Have you let the mental health worker know what you’re looking for? Generally for anxiety the support available will be medication, therapy or a combination of both. However both of these tend to be accessible via your GP. Have you tried medication and/or therapy yet?

If you have been referred to a MH support worker they are likely going to be more skilled in observing what might be contributing to the root cause of your anxiety.

On that basis, I think it’s worthwhile keeping an open mind as to what the mental health worker is suggesting. As the pp said, if you do the assessment and don’t get diagnosed then you can go back to the drawing board with that information. But if you do get diagnosed then that could offer you a deeper and new understanding of yourself and how to tackle the anxiety.

Whilst the MH support worker may not be able to offer you specific support afterwards if you were diagnosed, they should be able to sign post you to services that definitely could support you. For what it’s worth, I really don’t think suggesting an ASD assessment is a ‘fob off’ at all.

It’s worth also having a think about why you don’t believe you have autism. Knowledge about neurodivergence has deepened a lot recently and people are beginning to understand that the stereotypical presentations of autism society is used to does not mean that’s how all autism presents.

YABU, it sounds as though professionals are trying to explain you may have autism and that diagnosis is the best way to get support for your anxiety.

I absolutely do not have a learning disability.

I can see how it might appear they are trying to help, but they’ve been clear when questioned that there is no help offered by them for it.

I can’t self refer to another team as I have an existing SMI and in my area it has to be the mental health teams that work with us.

I’d like appropriate therapy to help me with my anxiety. I don’t see why an assessment for ASD is necessary.

I think if someone says ‘No, that isn’t helpful’ and ‘this is upsetting me’ ignoring that is really not on at all.

There is no law that insists people have assessments they do not want! People can refuse whatever they want.

ASD may be the cause of your anxiety.

People with Autism or suspected Autism should be able to access mental health support. It's not appropriate to think that an Autism diagnosis would be a replacement. Separately, therapy could be more effective if tailored for Autism so having an assessment makes sense. But it doesn't sound like you're being offered that so YANBU.

Autism is not a learning disability. People can have autism without a learning disability and people can have a learning disability without autism.

I don’t think the mental health worker is suggesting that if you were diagnosed with autism they couldn’t help you at all. I think they are saying that if you were to be diagnosed that support would be available through other channels.

Regarding appropriate therapy to help with anxiety, it may well be that your area doesn’t offer specific therapy for anxiety. Most trusts offer CBT and then some offer more specific types of therapy for certain people/issues, but you may not meet that criteria (e.g. EMDR may only be offered to army veterans). It’s very rare that the NHS provides long-term psychotherapy if that is what you feel is appropriate. Sad but true.

People can refuse whatever assessment they want.

people can refuse whatever treatment they want.

in nhs there are usually standard pathways and if you refuse an assessment or treatment on the standard pathway you often will not be able to progress to other treatments/assessments.

That’s a massive claim, personal opinion or evidence based?

That isn’t what the report said, you clearly haven’t read it.

https://assets.publishing.service.gov.uk/media/6ac7c305b016250bca013ac3/independent-review-into-prevalence-and-support-for-mental-health-conditions-ADHD-and-autism.pdf

He has actually highlighted how people are waiting far too long particularly for under diagnosed groups and actually how timely diagnosis is important.Onepresumes he means women and girls, people of colour which historically been the groups under diagnosed.. He recognised the under diagnosis concerns highlighted by the adhd task force and is highlighting how the woeful system ‘could’increase risk for over diagnosis because of the broken system and long waits .It isn’t happening yet and they point out that numbers are stable. He interestingly also pointed out there is no fall in severity or impairment.
On the basis of evidence available to us we cannot conclude that
overdiagnosis is occurring at scale, particularly given the gaps in
population prevalence data and data reporting. However, if present trends
continue we are clearly entering a phase in which the balance of risks is changing, from previous merited concerns with under-recognition( last year) and indiagnodis towards an increased risk of misdiagnosis and overdiagnosis,which are becoming increasingly important considerations for policy and service delivery.
Under-recognition nevertheless continues for some groups. The
increasing risk of overdiagnosis or misdiagnosis cannot mean
neglecting those often overlooked. The requirement is for comprehensive,high-quality assessment and timely diagnosis where needed, while making practical and clinical support available according to need rather than diagnosis alone.
None of this should be taken to suggest that people’s distress or
difficulties are not real. If anything, the evidence points the other way: 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. People are seeking answers and support for very real problems, and they are not the problem.

There are loads of women who were told they have anxiety for years....who are now being assessed and diagnosed as autistic because the diagnostic criteria only used young boys as the baseline for how it presents. Several of my friends have had their lives transformed knowing how to deal with their "anxiety" through a different lens.

I can’t self refer to another team as I have an existing SMI and in my area it has to be the mental health teams that work with us.

Does SMI stand for severe mental illness?

If so, it could be part of that or it could be autism.

Either way, they're better qualified than you to advise the next step.

Please can you share the evidence that shows ‘overdiagnosis is often harmful’?

Please can you also share evidence that shows the current approach of assessing people that meet the criteria for assessment is ‘making a fetish of diagnosis’?

You are being unreasonable for not exploring the possibility. Maybe the therapist is seeing something that you're not.

I didn't realise autism was a mental health problem in some people's opinions?
My understanding through my own son was it was diganose's. And applying for DLA or PIP has always been needs based and required proof.

I must remember to tell my son he's less autistic than his 30 page diagnostic report says he is because he's verbal🙄

Op we found diagnosis hugely helpful as regards self hatred and also getting treatment adjusted. But I’d only go for diagnosis if you feel there is some merit. NHS professionals don’t repeatedly make a suggestion without good cause as they’re aware of overloading already overloaded lists.There are currently long waits for diagnosis so yes I would be saying what are you going to do in the meantime whilst also pointing out they shouldn’t be either or but inform each other. Read the recent report as there is some good stuff in there and it looks like they’ll be working towards more cohesion and interaction between departments. It will be a while though before it filters down.

I work with people with autism and this is so common. It is getting ridiculous, MH workers are sending everyone off for autism/ADHD assessments then trying to ship them elsewhere because they can say it's not MH when that diagnosis comes.
Interesting review out today actually that recommended MH and ND services and assessments should be joined up.

If I’m diagnosed with ASD then there’s no further treatment to progress to though.

I can understand you feeling like them pushing an autism assessment is fobbing you off. We did a CAMHS referral for my son because he needed help. They assessed him for autism, diagnosed him, and discharged him. No help was offered.