Has anyone had an NHS adult autism assessment and NOT got a diagnosis?

[Obsidian]

After a VERY long, anxious wait, I finally had my two-part adult autism assessment through the NHS via video call during lockdown. It was a very stressful and emotional experience over the course of a couple of months, and the outcome was delayed as the Clinical Psychologist I saw needed to discuss my case with colleagues.

The final outcome was a NO overall because, despite my obvious social, emotional and sensory difficulties, I was ‘more socially competent than I thought’ and my issues weren’t having a significant enough impact on my life, e.g. I have coping strategies.

At the time I accepted the outcome and felt stupid for having been convinced I was autistic. Having had a bit of time to reflect however, I’m now confused about how I can have related so strongly to everything I’d read about late-diagnosed autistic women, but been completely wrong.

Has anyone been through something similar? Is it worth getting a second opinion? Feeling a bit flattened by it all.

Thanks!

I'm awaiting diagnosis atm, so don't have experience to comment on, but I'm wondering why being socially competent and having coping strategies would be relevant? That suggests the focus was not on level of impairments/symptoms, but on how well you mask these. I'm no expert, but from all I've read, it seems that women are better at masking, but often at a big cost to themselves in terms of stress/mental health. Learning ways to cope with a condition surely doesn't mean you don't have that condition? It does sound a bit like "you've learned to fit into neurotypical life, therefore you can't be autistic". As with many areas of life, women get penalised for being too compliant!

Obviously though, there could be more to it than this. Can you ask for more clarity/detail on how the diagnosis was reached? On the National Autistic Society website (bottom of this page) it says you can ask your GP to refer you for a second opinion. Hopefully other repliers will have more knowledge/experience than me.

Your coping strategies sound to have counted against a diagnosis.

I find that quite odd!

Did you have an Ados assessment? I’d ask the score.

I got a detailed report afterwards, but it mainly summarised what we talked about in the assessment, under each of the DSM V criteria, then said while I had traits I didn't meet the threshold. There are no numerical scores, apart from 25/42 in RAADS-14, where 14 is the cut off for further assessment.

Does that sound like an ADOS assessment?

The conclusion was not autism, but possible social anxiety and/or dyspraxia.

It was a detailed process over several hours, so I'm not suggesting it was poorly done, but I just feel there was a lot there that shouted highly adapted female autistic with lots of coping strategies, starting to fall apart post-kids and now medicated for anxiety /depression which I don't think I have (well not in a traditional sense anyway).

I don't want to cause a fuss by asking for a second opinion, but I'm confused to say the least. I did A LOT of research and it all seemed to make sense 🤷🏻‍♀️

The Psychologist said at one point that the diagnosis is protected for those whose lives are significantly impaired by their difficulties. She seemed to be suggesting that because I was coping okay I wasn't high priority for a formal diagnosis and any associated support. This confused me as surely I'm autistic or I'm not, and how well I'm managing at life shouldn't come into it!

nevernobody I definitely agree with you here 👇

As with many areas of life, women get penalised for being too compliant!

Good luck with your assessment 😁

No, you most definitely didn’t have an ADOS.

You’ve not even had a diagnostic assessment, they’ve used a screening tool to screen you ‘in’ or ‘out’ in order to decide whether to assess you for autism properly.

They’ve decided not to give you a full assessment.

Not getting a diagnosis does not mean you aren’t autistic. They don’t understand enough about autism to give a 100% accurate test. As hard as it is there is no real ‘you have autism’ or ‘you don’t have autism’. There are screens and behavioural assessments, case history’s and professional opinions.

Whether you meet threshold for a diagnosis depends on the place you live, the professional you see and sadly the money it the system to offer support. I’ve heard of professionals being told they can only give so many diagnosis’s per week.
I think you can consider yourself part of the autistic community if you want. You can ask for support if you need it (you probably won’t get it with or without a diagnosis). But most importantly you can attempt to understand your own behaviour and the behaviour of others using the research and information out there based on what we do know about neuro-diversity.

Where have you heard of professionals being told they can only make a certain number of diagnoses per set period?

I find that very hard to believe. What would be the advantage to that?

Thanks CountessFrog that’s helpful. What would an ADOS assessment look like then? I was under the impression this was a formal assessment. I was referred by my GP, then had a ‘history’ taken by a trainee psychologist, then a 2-3 hour discussion with the Clinical Psychologist around each of the criteria. They also spoke to my husband for about 30 mins, and my mum filled in a questionnaire (although that was a bit useless as she couldn’t remember much, and has a very stereotypical view of autism so thinks the whole thing is ridiculous 🤦🏻‍♀️)

I’m not really looking for support - certainly not financial or social. It was more about recognition that my difficulties might be down to more than my innate crapness. And possible access to a community of like-minded people who might ‘get’ me and some of my ‘stranger’ ways. Without a formal diagnosis I would feel like a fraud, and wouldn’t feel comfortable self-diagnosing against professional advice.

Do you think this is a common story or am I being a drama queen?

An ADOS involves a series of set activities. A puzzle, a book, a picture, some cartoons. Some general conversation and a task at the end where you make up a story using miniature objects.

The score is out of 28.

You should not have been assessed by a trainee. You should have seen professionals from different backgrounds, too. So maybe a psychologist and a speech and language therapist.

But that’s if it’s a proper assessment. What you had was a screen.

(A common story, you are not being a drama queen. Sadly it seems that your local NHS has screened you out though. Doesn’t mean you aren’t on the spectrum).

Oh. Is there anything I can do? Would a private assessment be any different? Not that I can afford it 😔

I think the problem seems to be that you didn’t get as far as a full assessment. The area you live in seems to screen people in/out based on this system you were part of.

If you had a private assessment, I would hope the actual assessment process would be the same as a proper NHS assessment (the type you haven’t yet had). The difference would be that you would t be screened in/out because you are paying.

You could ask for a second opinion?

@Obsidian

I’m not really looking for support - certainly not financial or social. It was more about recognition that my difficulties might be down to more than my innate crapness. And possible access to a community of like-minded people who might ‘get’ me and some of my ‘stranger’ ways. Without a formal diagnosis I would feel like a fraud, and wouldn’t feel comfortable self-diagnosing against professional advice.

Do you think this is a common story or am I being a drama queen?

I could have written this word for word. This is exactly why I am waiting for assessment and, from wandering around various autism websites I think this is a very common story, especially among women. I think you can join the communities anyway, but I also feel a bit of a fraud, especially among NT people I already know - I'd like a bit of paper saying I'm autistic or it feels a bit like I'm being attention-seeking. Not to denigrate anyone who feels happy without the formal diagnosis - it's more about my lack of confidence in being heard/understood.

CountessFrog is there anywhere you know of that gives more detailed info about ADOS and why it's done that way? I'm curious about how those activities are used to make a diagnosis.

It's made me anxious about the NHS process reading this. It sounds like a postcode lottery if some areas are screening people out before assessment. I'd really like to save up and go private if possible, but I need to convince dh that this would be more beneficial to us as a family than, say, a holiday.

What I meant about anywhere that gives more info about ADOS is a website or article - just re-read and thought it was unclear.

The problem with describing the ADOS is twofold.

Firstly, it’s designed for clinicians, so I’d have to explain it in loads of detail for a non clinician. It would take ages.

Secondly, you should go into it ‘blind’ rather than with an idea what it’s looking for. Knii I wing what it’s looking for could sway the results.

(I think most places probably screen, otherwise they’d never keep up with demand).

Thanks Countess -that makes sense re not influencing the results. I just worry about having to do anything spontaneously & not being able to research things in advance.

Re the screening, I suppose my worry isn’t about screening per se, more that it might be based on things that aren’t about autism, like needing to limit pressure on support services. Or because there’s a lack of understanding of masking.

Any good diagnostic should well understand masking.

I got told I met most of the criteria except for needing a routine. Except I do need a routine, but I didn't realise how much I relied upon the routine I had at the time. I thought that I didn't really have a routine because I didn't do exactly the same thing every day at exactly the same time.

I do, however, have a set order in which everything has to happen throughout the day & I struggle with variations on different days. DH has to come home in time to get the DC to clubs in the evenings & has to remind me earlier in the day if we have to eat at a different time to accommodate this. I need reminding every single week, even if they've been doing it at the same time for years - it's just not part of the everyday routine in my brain.

I hate weekends & school holidays because the routine has to change & I can't deal with that. DH has to take charge of everything at the weekend because my brain falls apart. He got furloughed earlier in the year & I've been loving every day being the same. I dread normality resuming!

Apparently it's "just social anxiety" though. Social anxiety with a side of limited eye contact, lack of understanding social norms, sensory issues & a need for a routine that they could probably have noticed if they'd actually asked more than "do you feel like you need a routine?" Not sure autistic people are particularly renowned for their self-awareness so you'd have thought the assessment process would do a bit of reading between the lines or careful questioning...!

I plan on getting a second opinion at some point but it's taken me 2 years to get to the point where I don't have a panic attack at the thought & we're in the process of moving to a different area so hopefully I'll be able to communicate my difficulties more clearly & I'll get someone who knows about women/masking. Tbh, I'm quite tempted to save up & pay for a private assessment... That'll only take me 10 years or so...

You made a good point about having the self awareness to self report.

I observed DD2's ADOS when she was 11 (she wouldn't go without me, despite them telling her that they'd rather she did). Although I could gather what they were trying to do during the assessment, and could tell when she 'scored' for ASD in general, the actual report was amazingly detailed and picked up on things that I hadn't 'seen' even though I was in the room. At the time of the assessment, I was given the impression that she might not get a dx, but in the event they felt that she clearly met the criteria and her 3Di gave her very high scores, too.

However, I did feel that the 3Di interview was interesting. I am a very involved parent who had pursued diagnosis independently - I referred to CAMHS directly - and when we went, I had examples of DD2's ASD traits from when she was tiny to the current day. So, for example, if they asked me about language, I was able to tell them when she started talking, odd expressions she used when she was young, how her language had developed over time (I was lucky that I'd posted a lot on MN, so could just search the threads). When it came to eye contact, I was able to tell them exactly when she had learned eye contact, because we used the lollipop lady to practice ('we look at the lollipop lady, we smile, then we can look away') on the way to school in year R. I was able to describe her play habits as a young child (MN again). So I think it was easy to score her from the sheer volume of evidence I had. If I had been less obsessive observant, and only had vague recollections, it would have sounded much less convincing.

I know that from my childhood, I would meet the dx criteria, but I can't face pursuing dx right now. I do acknowledge to DD2 that many of her traits are ones I share .