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.

The treatment that works best for autistic people is not the same at all as the treatment that works best for neurotypical people.

If you are autistic then knowing that will help you to access the right support. Even if it’s not available from the mental health team you’ve been talking to it absolutely does exist, I have relatives who are diagnosed autistic and receiving NHS funded treatments for anxiety.

If you are not autistic then having confirmation of that would get you out of this deadlock with your current team.

Why not agree to do the assessment but ask for help in the meantime? I’m not sure why you’re so opposed to doing the assessment?

It’s not just a label, it’s a diagnosis of a neurodevelopmental disorder. Autistic people’s brains and nervous systems function differently. This can cause anxiety disorders which differ in ways from neurotypical disorders and complicates the treatment using modalities designed for neurotypical people.

Tell us about your anxiety and how that manifests itself. Depending on the answer to that it may explain why they’re so keen to suggest an autism assessment.

(My son aged 14 has fairly severe autism, diagnosed at 4, been in complex needs specialist autism schools all his life but is now on course to sit some GCSEs and go to college. He doesn’t have a learning disability or difficulty, they’re different things to autism).

You can also have 'treatment' for anxiety if you are autistic

My 12 year old is autistic and also anxious - the two are not completely inseperable things. The thing is that her anxiety is highly influenced by her lack of social comprehension in some situations/ her sensory overwhelm/ the different way she processes information.

If a professional is telling you they think you might be autistic - why on earth would you refuse a diagnostic process?

Just go through it and see if it is enlightening in any way

There is no MH support in this country on the NHS for anyone really - it's not like 'being autistic' will stop you getting help. It should help you understand yourself better

You won't like this but I think refusing a diagnosis is in itself a sign you may be autistic - it's rigid thinking.

I don’t want to assessment because I fear diagnosis will mean the mental health team won’t help me. I fear they will say my anxiety is due to ASD and there’s nothing they can do. I have asked them several times about treatment if I were diagnosed and they’ve offered no indication that I would receive any from them.

but - the autism diagnosis would just be information about yourself - not getting a diagnosis doesn't stop the fact that you are autistic (if you are) - you can't run/hide from it.

What help do you think you would get in any case? As far as I can see (from a lot of attempts to get help for my child) there is very little MH support available.

I promise, i work/volunteer with autistic kids and believe me, it's bettter to understand what autism is if you are ND.

Why can't they give you help/counseling /therapy that's suitable for autistic people (whether or not you have autism or a diagnosis )? Surely they can't just be expecting you to go away for a year or 2 or however long until you are assessed?
Have you got anyone who can help you with all this? Would it be something your mp can help with or your gp?
With regards to the learning difficulties - doesn't it just mean you can't process information as well as some other people, whether that's because if dyslexia, hearing problems, eye sight problems, brain processing issues or anything else?
I hope you can get therapy/counselling that will help soon.

you can’t run from it

You can.

There is no law saying you have to have a diagnosis.

hah yes but even if you don't have a diagnosis you will still be autistic. (if you are!)

Because it may not be severe enough. My autistic children have had years of high level NHS tratemnt because they have severe needs. That said with one it was left until it went from severe to rated as red on the dynamic risk register. Just to give you some idea of how hard it is to get anything- multiple suicide attempts often don’t get you anything. So if you have anxiety with little risk they probably don’t have anything to offer you.

I know that’s shit but it is sadly how it is.

And misdiagnosis is often the other way round- autism overlooked for the catch all BPD/EUPD.

The report raised issues about quality control of some private assessments. When I had to go down the private route for one of my children (due to 5 years waiting list here) the quality difference was obvious and massive price differences alongside that. I went with a provider who charged significantly more but did a full Nd assessment and ruled out other issues. Whereas some private companies are very focused and won't consider e.g. FASD or brain injury.

Even your quote from the report mentions the increasing risk of overdiagnosis and misdiagnosis. This is quite compatible with the fact that , as you and the report both say, many people with autism and adhd are waiting too long for diagnosis and receiving no treatment or inadequate treatment.

This is excerpted from the news report of the review on which I based my post:

It found there was an increasing risk of overdiagnosis of autism and attention deficit hyperactivity disorder ...

The exponential rise in diagnoses of autism and ADHD means the UK has reached a “tipping point” where people are at risk of being misdiagnosed with either condition, Wessely warned.
The authors did not find that overdiagnosis was occurring at scale, but added that the evidence “suggests we are entering a phase in which the balance of risks between underdiagnosis, misdiagnosis and overdiagnosis may be changing, with the risks of misdiagnosis and overdiagnosis becoming increasingly important considerations for policy and service delivery”.
The increasing tendency of young people to self-identify as neurodivergent – as many as a fifth of secondary school pupils do so – means that “the line between the social and the medical is beginning to blur”, they added.

https://www.theguardian.com/society/2026/oct/09/nhs-fonagy-review-autism-adhd-mental-health-conditions-care

I understand your fear, but do you also think part of this fear is your anxiety?

If you are not happy with the MH team then make a formal complaint or ask for a 2nd opinion.

Unfortunately there is a lot of crossover between the symptoms of mental health and neurodivergence.

IF you do have autism, then understanding how/why you process information and situations may help with understanding what makes ypu anxious and how to then manage that going forward.

Yep!!!! And not heard of any reports of late concerned with the ‘overdiagnosis’ of say anxiety either, despite GPs managing to somehow understand and offer medical treatment within a 10 min appointment….

The Age of Diagnosis by Suzanne O’Sullivan.

Which isn’t what the report is saying.

Understanding what is behind severe anxiety is extremely important.

A good autism assessment will consider autism while also ruling out other aspects. For example my son's autism assessment considered pre natal issues (e.g. FASD, drug exposure, extreme stress), birth issues (e.g. loss of oxygen, congenital issues), childhood trauma, PANDAS and other physical health issues etc. Sometimes genetic screening is also used if there is reason to suspect specific conditions e.g. if there are psysical markers, epilepsy, severe learning disabilities etc).

They can also look at your profile. Autism isn't being seen as a spectrum disorder any more but more of a profile. Many autistic people have a very spiky profile with some areas they are very good at and others they struggle with. If, for example, it turns out that sensory issues are a major issue a referral to OT might be appropriate. If its social issues you might be able to get some input from speech and language therapy (my child had social skills support - i hadnt realised this was available given he's intelligent and language is great). Treating the anxiety itself isn't necessarily the best way forward if there are underlying causes like this.

I’d take the assessment. If you’re not, you’re not and it’s ruled out. If you are, you can learn to understand yourself better and approach the anxiety from that knowledge.

It sounds like they’re saying they can’t do anything more for you because they believe you might be autistic. At the same time you’re saying if you are autistic they won’t do anything for you. The logical thing to do is have the assessment and go from there.

Just for clarify, those things were all ruled out 🤣

If anything the report states MH conditions are very real.

If they did not feel my anxiety was severe enough then they wouldn’t have accepted the referral from my GP.

I have been unable to set foot outside of my home for 3 years. I cannot access medical care in person and struggle even with calls. I have refused to go to A&E for possibly life threatening symptoms when the GP has urged me to attend. I would just like to be able to do those basic this again, I’m scared I will die in my home one day as I cannot access outside help when needed.

I had hit crisis point when I was referred to the autism service for an assessment and then diagnosed, and I was offered quite substantial post diagnostic support but it wasn't therapy.

It helped me understand WHY CBT based approaches weren't helping though, and as nothing else is really offered in my area it helped me make an informed choice about whether to pay privately for neurodivergent affirming care or trauma informed therapy.

There can be a lot of self realisation once a diagnosis is made too, which can be very therapeutic.

But to tell you what my referring GP said, they said if it isn't autism, being put in front of a psychology team will likely get me better answers for what is actually going on as part of the assessment is identifying possibilities or eliminating possibilities of other disorders and conditions so I do think that just going through the process itself can be helpful if you've already exhausted the therapy route.

Of course they are different things. I didn't say they weren't. For one thing, the term 'learning disability' doesn't name a condition. It states a set of impairments, which may be caused by any number of different conditions, one of which is autism, if the autism is severe enough to cause those impairments.

People can have learning difficulties arising from their autism, and they can have both autism and independently caused learning difficulties (for example arising from Down's Syndrome).
And of course people can have a learning disability without autism, just as they can have autism without a learning disability. I didn't say they couldn't.

None of these things contradicts what I posted

I think there is a lot of anger when people question the utility of autism diagnoses in some cases, and it prompts people to try and wrongfoot the person who says it.

I don't know why there is this anger. It is not the same as saying 'there's no such thing as autism', or 'autism isn't a problem', or 'your child doesn't really have autism' - which is how people seem to hear it.

What help have they given you so far for anxiety? Have you tried medication yet?