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.

No, they are different bits of research (and do not contradict each other). I cited this directly in response to someone who asked for evidence for the claim that diagnosis can sometimes be harmful.

That helps to understand how severe it is OP but what specifically are you anxious about?

That might help us help you understand why they have suggested Autism.

You said -“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”

Ie you were saying we have reached over diagnosis (it’s says we haven’t yet and numbers are stable). You said this over diagnosis is harmful and blurs social and medical need. You’re attempting to whip up something into your own hypothesis and are putting words into their mouths. They didn’t say that and recognised the concerns re under diagnosis and how damaging it is as they do over diagnosis. They highlight how the crap we have at the moment puts us at risk from over diagnosis. Very different to what you said.

"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"
Again, this is incorrect. A learning disability is a condition. It is a stand alone diagnosis and many people with that diagnosis are severely impaired and need round the clock supervision. It is not a learning difficulty.
My frustration is nothing to do with autism, as I say they are different things. My frustration is with the complete lack of knowledge around learning disability, so much so that when I advise on what it is you completely miss the point and come back with more misinformation.

It’s not a label. It’s a diagnosis?

My elder daughter saw a variety of therapists at Camhs and absolutely nothing changed. I felt like she went into the sessions eg art therapy and had a nice time but nothing ever changed.

She is adopted, so got a lot of access to therapy over the years.

Eventually when she was 15 a psychologist suggested autism and assessed her and she was diagnosed. Her sister was diagnosed aged 7, years earlier, but she presented quite differently, and none of us even suspected it in elder dd.

Anyway, the psychologist said that one of the reasons she was going to assess her was that none of them therapy had made the slightest difference.

My daughter is 28 now and still has the same difficulties- one of these is severe anxiety. But I could take her for treatment after treatment - in fact she has had plenty of support from adult services -and it would not work because it's her autism that's the underlying issue.

I can’t see why you not for the ASD, it could be life changing for you if you do have it. If you don’t have autism then they will taylor your treatment accordingly. Win win!

I’m afraid this is exactly what we have found with my daughter. Once the diagnosis was in place there was no actual help that came from anyone. They send you home with one page listing your diagnosis and some leaflets with links to autism related websites. Every request for actual support we made was declined because anxiety, social issues, mental health struggles - it was all due to ASD. It’s a catch 22. You are not wrong to be resistant if support is what you are looking for. We had to go private for everything as all we got on the NHS was the one pager with a few sentences confirming ASD.

That said, I would encourage you to dig a little deeper and learn more about high functioning adults who are autistic and see if this fits. Having a diagnosis has helped us tremendously to understand what issues my daughter is really struggling with and explain why she experiences certain things differently. You don’t need a diagnosis to learn more and see if some of it fits. For the record, my daughter has a high IQ and manages well in mainstream school so she is what people would call high functioning.

Lots of autistic people have successful mental health treatments for conditions caused by their autism.

I do think there’s a certain amount of naivety that once you get your assessment all this lovely support will magically come into play and that’s not really the case, I would say.

It’s natural to think that but sadly it has not been our experience. However knowledge is power and our daughter would not be doing so well if we had never known she was autistic. That made a huge difference to all of us.

The Age of Diagnosis is a non-fiction book written by a Doctor (a neurologist to be precise).

There is a huge difference between thoughts presented in a non-fiction book and findings of a study presented in a peer reviewed research paper.

All that is to say, what you have presented is in no way deemed ‘evidence’ for the statements you have made.

I don’t have anything/ thoughts I’m specifically anxious about. It’s just an overwhelming feeling. Difficult to explain really, but it’s crushing.

It’s not a win win as they have not said that would happen. I’d have no issue having the assessment if I meant I could still access treatment, but that’s not what the team have said.

Do you actually think they would withdraw your anxiety treatment if you are autistic?

That's true. Everyone is different. But anyway my daughter doesn't benefit. IIf she had never been diagnosed, we wouldn't know.

The report is recommending ‘needs-led plus diagnosis’. It is not saying don’t get diagnosed. An accurate diagnosis is not harmful for someone with low support needs, in fact quite the opposite.

i have autism and ADHD . I have had some CBT and counselling through the NHS for my anxiety with people who have extra training in neurodivergence. It was very helpful. I wouldn’t have got that without a formal diagnosis although that might change in a few years time as a result of today’s report.

That sounds horrible and I'm sorry you experience that.

Unfortunately that also explains why they have recommended a diagnosis.

Often anxiety when you are neuro typical is specific i.e I'm anxious to go out because I might get run over, so with CBT which is known to work well for anxiety, would work through why you are scared of being run over and challenge that.

But if you are anxious due to autism that is because of sensory, routine or communication issues. So some people are anxious of new places or certain events because they are unpredictable.

Autism can also mean it's quite hard to recognise these feelings as an example my daughter gets very anxious at times when we go on holiday but she can't explain why, I recognise it is because it is unfamiliar and unpredictable what will happen next, also people, especially crowds talking in a foreign language is a different sensory input to her normal.

What is interesting is she can sometimes recognise that a situation has the potential to or has triggered her, she went to Reading festival with her friends and was concerned about it causing her anxiety but because we went through strategies she was fine.

It sounds like you can't name specific issues you are anxious about which has lead them to think you might be autistic.

What you could do is try yourself some strategies used by autistics to help them, it's worth a try.

Not sure if this link will help Autistic Anxiety vs Neurotypical Anxiety: The Difference https://share.google/bwNYu8V1hjYds8cTP

Yes, I do. They’ve had plenty of opportunity to say they wouldn’t and to explain any treatment they might offer.

Perhaps they don’t know that you need this explained to you? (an indicator of possible or autism is the need for deeper explanation) Most people wouldn’t think an autism assessment and subsequent diagnosis would mean stopping anxiety treatment: what it might mean is changing how you are treated, tweaking medications and therapies, but they certainly wouldn’t withdraw mental health treatment just because a person is autistic.

You should be gtlrateful to be offered an assessment given so many needy parents are waiting

No

that is not how it works.

People can and do refuse treatment. Women do not have to go through pregnancies they do not want because others cannot have children. Those who refuse blood transfusions or organ donations are allowed to do so. This is the starting point of medical ethics, isn’t it?

OP doesn’t want a diagnosis and that is her right and her decision and other people’s wants and wishes have nothing to do with that at all.

You should be very grateful for the offer.

Take the autism assessment.

if you are autistic then you can push for autism for autism specific anxiety support.

if you are not autistic then you continue with ‘normal’ anxiety support.

until you know what you have you will not get the right support.

not saying it is easy to get autistic specific support - but until you know what you need how on earth can you get it?

I’m diagnosed autistic and receiving autistic specific support because of it. Pretending to be ‘normal’ fiesb’t work for me…

Go with what you think about your child, not what the ages are. I’m a reception teacher and I’ve had summer born children defer and it was absolutely right, I’ve had summer borns excel in their correct year and I’ve had children who weren’t summer born who could have done with another year in nursery! Right now I have a June birthday who I would consider higher than an October birthday!! Go with what you feel is right for your child - does she need another year in nursery or is it purely the age differnde?