...to ask how you felt if you "failed" an autism assessment as an adult?

[AutismAssessmentAnxiety]

I'm 43 and awaiting an assessment for autism. Struggled all my life with certain things, etc, and was referred by a HCP who was treating me for something unrelated. I've sent the AQ10 back to them (scored 10) and everything I read about autism in women strikes a chord. So, I've lots of reason to believe I'm autistic.

But I know it's possible and even probable that I'll "fail" the assessment and be found to not be autistic. I'm worried I'll be upset and disappointed because autism would explain so much for me. But I could be kidding myself, right?

Has this happened to you, and if so, how did you feel?

I’m afraid it was private assessment again, which isn’t something I enjoy doing but even though my new GP is wonderful, the NHS resources she referred me to are just so stretched they actually refused to see me.

I paid £175 for a private consultation with a rheumatologist in Edinburgh and he was brilliant. I only went about the dodgy joints but he spent a lot of time with me, went through the (many, many) recent bloods done by my GP, did a physical examination and explained everything clearly. He diagnosed hypermobility spectrum disorder and fibro, and he suggested I see a cardiologist about potential PoTS.

I paid a further £200 to see a cardiologist in Glasgow who did a few tests and said it’s very, very likely I have it but he couldn’t diagnose without a tilt test, which the private hospital doesn’t do. I took that to my GP in June and she referred me back to NHS cardio, who have given me an appointment for this month.

I felt a bit grubby going private but I tried and tried with the NHS, it was like talking to a brick wall.

For those who were told their difficulties were best explained by anxiety, did the autism assessment report provide any useful understanding of how your anxiety operates?

I ask because I’ve had many anxiety diagnoses, but I have generally felt that none of them really capture the root of the anxiety. CBT type interpretations don’t much help me. My anxiety has many physical, sensory and overload aspects to it, many issues to do with routines and expectations, intolerance of uncertainty…but I’ve arrived at these conclusions myself without help from professionals who seem to be trying to treat some other aspects of anxiety that I relate far less to. Maybe I do have anxiety and don’t meet autism criteria, but the type of anxiety needs to be adequately captured and I haven’t found that diagnosis that makes sense. I was wondering if an autism assessment would at least capture this or chart a path forward?

Just be honest. When they ask if the lighting is OK, 8mstead of just saying "yeah it's fine" as a reflex, pay attention to how you feel and say "actually it's super bright. Could we turn it down a bit?" Although when I had my assessment I definitely masked a lot, its a reflex, you can't just turn it off, he could see through my mask like it was glass. They see autistic people all day every day. They know what to see. He pointed autistic things out to me that even I hadn't noticed about myself!

Just be honest and trust them.

I was diagnosed recently aged 50 and before the assessment process started I had a chat with one of the peer support workers who had been through process herself. I was a bit worried that after a lifetime of masking, with good coping mechanisms and functioning pretty well, (I have always worked, have kids etc), I might be autistic but they might not notice, or it might not seem "bad" enough to meet the diagnostic criteria.

She told me that they know what they are doing and are often looking for very subtle signs, especially in older women. And that she learned a lot about herself and her own limitations during the process. I said, "are you saying I don't cope as well as I think I do, and that this process will reveal that to me?" And she said basically, yes. And that's exactly what happened. The testing procedure is really rigorous and as long as you get someone who knows what they're doing, it will be ok. Have a think about things beforehand, what do you find difficult etc, and take your time to answer the questions carefully and you will be fine (in my experience - sorry to hear of PP's shocking treatment).

Unfortunately all to true.

It's well documented that Autistic women are much more likely to be misdiagnosed with a mental illness. For PP above my daughter has severe anxiety but was diagnosed with Autism. Having anxiety or not shouldn't effect the diagnosis. Anxiety secondary to Autism isn't unusual. For example if you struggle to interpret people's non verbal cues then it makes sense that you could develop social anxiety. Self awareness of the things you miss would make that anxiety worse. Anxiety can be a lot on its own of course and isn't less valid or anything, just I know a lot of Autistic girls present with anxiety too.

FWIW OP the Autistic groups I'm a part of recognise how hard it is for adults especially to get a diagnosis and are welcoming to all Autistic people whether they have an official diagnosis or not. A lack of diagnosis makes it harder, you have to believe it very strongly and trust yourself, but not getting the diagnosis doesn't mean you're not Autistic.

All my DC are Autistic, my DD is very like me and I've to wonder if I am to, but it's still a very new thought and I'm so far from sure. I don't know if I'll ever pursue it. I know getting diagnosed as an adult is much harder, harder again for adults who mask well or officially have a MH or personality disorder. Don't let everything ride on this, if you feel the person doing the diagnosis is discounting you because you mask, or have some anxiety or already have a MH condition or really isn't considering how the 'deficets' present for you you can always seek a second opinion, preferably with someone who has experience diagnosing adult females who mask well. Good luck.

OP, you have inspired me to go to my GP and ask for a referral. I have suspected I have ASD for a few years now. I recently did the AQ (28) and the RAADS-R (72) but also one called the CAT-Q (125) which is about masking. Anything over 90 means you're probably masking, but there's a lot more to it than that! I found it at embraceautism. It made me realise that even the answers I gave to some of the AQ questions were possibly 'with my mask on'. So I'd really like the chance to be officially diagnosed - if possible! I just think how much easier life would be, especially work.

Anyway, good luck and I hope you get a diagnosis that can help you in your life.

amusedbush thanks for the info. Sadly we are not in Scotland. I think we will also have to go private...its just knowing where to go and who to book with..

connecttoautism.org

I tried to PM you but for some reason the site won't let me, I don't want anyone to think I'm promoting but this is who diagnosed me. Things are slightly different now compared with when I did mine but the basis of it seems the same.

2 of my friends used Connect To Autism and they spoke very, very highly of their experiences. I will see how long the NHS waiting list is and may approach them myself if I can gather the funds.

Do let us know how you get on, if you'd like to. I hope it goes well and the GP is receptive.

I have been looking at the online tests tonight and I'm anxious and confused about how to answer the questions; whether I'm masking to myself, or things aren't so tough really, or they're more difficult than I'm prepared to acknowledge at present. My sense of self has taken a battering anyway recently so I don't know which way is up! Do I subconsciously want the diagnosis so much that I'm answering in what I think is the "right" way?

I'm glad you had someone to talk to about it; peer support can be so helpful.

What you say about not coping as well as you think you are is resonating with me. I've been through some ongoing big life events over the past year and, while I present that I am coping extremely well, things are beginning to crack a bit and I'm certainly burning out (whether autistic or allistic). Maybe the mask is slipping involuntarily in response to the pressures. Or maybe I'm fixating on autism as coping mechanism to avoid reality.

OP it really sounds as though assessment would benefit you - if it helps I went with Autism Oxford after seeing them recommended on here, they were great. They will understand what you are going through. You can be assessed on zoom if you prefer, which often helps. Let me know if you want any more info about the process.

I would also really recommend this video if you haven't seen it, it's a talk about autism in women and girls that helped me to understand things better

Nope. Told to speak to social services who have no understanding of Autism at all.

Friends (the ones who know anyway) have been supportive though.

@IloveStrawberrylaces

It can open doors. A diagnosis means you are protected by law and can request reasonable adjustment. So if you need accommodations at work type thing. Sometimes it's really minor changes that make all the difference. I have found it's made a huge difference for me when travelling as I am now able to ask for help if I need it, pre diagnosis I genuinely thought I was fucked up and wouldn't dare ask for help, because who needs that when they are a grown adult?

It helped me reframe my life and understand a lot of the bad shit. I struggled my way through it all, turned to alcohol and generally made an arse of things until I settled with DH (even then it was another 15 or so years before I stopped drinking) - I have no idea I had used the alcohol in that way, to me I just liked a drink the same as the next person. It helped me understand why things happened to me and it had helped me recognise my vulnerability going forward. I am a terrible judge of character, unable to say no to things even if I didn't want them. Now I know I can't judge it well I can be super careful, and I know I don't have to say yes to please others.

Don't underestimate the power a diagnosis can give, the absolute basic ability to understand yourself is handed to you and it's life changing.

Maybe the mask is slipping involuntarily in response to the pressures. Or maybe I'm fixating on autism as coping mechanism to avoid reality.

I ask myself this all the time.

Don't underestimate the power a diagnosis can give, the absolute basic ability to understand yourself is handed to you and it's life changing.

This is it exactly.

That's a really interesting point about masking during the questionnaires - I'm glad to see there are resources to counter that. Although I scored 47 on the AQ50 and 205 on the RAADS-R 😅

My issue is more with masking in person, which I just find so exhausting. I've started actively trying to drop the mask and it has been really illuminating. For example, I didn't realise until recently just how often I force a laugh at things I don't find funny just to seem "nice" and agreeable. I actually think I masked less when I was younger because it has been a good few years since anyone has told me that they thought I was a bitch/rude/cold/stuck-up when they met me but I grew on them...

@KatherineofGaunt thanks for posting the embraceautism information. I ran through the tests this morning despite dreading it.

I scored 44 on the AQ. 172 on the RAAD and 138 on the CAT.

They all seem quite high, but I don't know genuinely what my next step should be.

Some years ago I listened to a programme on radio 4 about a lady who had been diagnosed with autism and how she felt and to me how she felt just seemed completely normal. I did wonder at that point if perhaps it could explain things like never wanting to buy new clothes and if I do I will try to get the same ones I've had previously. Dreading social situations, hating speaking on the phone. Speaking too much and too fast because I don't know when to speak. So many things like food textures I can't stand. My uncontrollable tempers as a child. Having to be sat on to have my nails cut etc because I didn't like being messed about with. I can't have a holiday to a new place with an Excel based itinerary.

I suppose I would have investigated further but a friend has a God daughter who is severely autistic, non verbal, violent meltdowns etc and will need life long care. I told her how I was feeling and she basically bollocked me and told me I was nothing like her god daughter so couldn't possibly be autistic. She's usually such a kind person and reacted so strongly, so I put it to one side really. As menopause is hitting I'm finding it harder to maintain the veneer of normality.

The thought of talking about this to anyone face to face is massively overwhelming.

Watching this and nodding throughout! Especially the bit about getting to your 40s and finally dropping the pretence and saying I'm knackered and I can't put up with it any more. Thanks so much for sharing x

The thought of talking about this to anyone face to face is massively overwhelming.

Definitely. Overwhelming in itself and then to be met with a "rejection" and told it's not autism, it's you...This is what I dread.

@AutismAssessmentAnxiety the other thing is, I wish I had spoken about it when I first suspected. Now autism in women is so widely in the press it feels like I would be seen as jumping on the bandwagon and like a massive fraud and a bit of a social failure if I actually spoke to anyone.

I honestly felt like this before I end mentioned to DH.

I already had 2 diagnosed children and it wasn't until after that the penny dropped for me (I'm quite slow on the uptake sometimes!) but I did feel like, especially after the very long fight to get DD assessed, that even DH might think I was just doing a 'my turn' thing.

Turns out he just looked at me and slowly nodded - it was years before I approached the GP and after being dismissed there more years before I finally was brave enough to contact someone and do it privately. It's incredibly scary to put your whole being on the line like that. I was absolutely certain, becaue after the penny dropped I became obsessed with researching, that I met the criteria, but I was still feeling like 'what if I don't get it'

@alnawire I definitely suffer with becoming superfocued on things, new hobbies become totally all encompassing, until the second I lose interest and then I will never bother with that thing again. I've expended loads of energy stopping myself researching autism because I'm worried I would take onboard the behaviours and present that way.

I think going private would be the only option, the thought of turning up at a GP to ask why I'm not like other women I know, is it autism or something else about me intrinsically makes me feel teary and a bit sick.

I don't suppose anyone knows roughly how long the NHS waiting lists are in northwest England? Any of the Greater Manchester trusts?