...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 completely understand your anxiety. I was diagnosed as autistic in May and felt exactly the same before my assessment. I think even after diagnosis it’s quite common for autistic people to question themselves. If you identify with lots of autistic traits then you are most likely autistic, so try not to worry. Good luck!

Yes, it happened to me in May last year. I was referred to the adult autism team in my NHS trust and, honestly, I got a bad feeling from the outset. They sent me some short forms to fill out and when I asked about them, the psychologist told me that he had made up the screening questionnaire himself... TWENTY YEARS previously and hadn't needed to make any changes to it. The questions were very leading and blatantly based on ancient research that focused on the presentation in young boys.

When I turned up for my (virtual) assessment, he actually said "So many people are referred to me and I diagnose fewer than 20% of them. I also don't believe in this whole women-present-differently-to-men nonsense - you're either autistic or you're not. I doubt we'll be making a diagnosis today but you've been referred so let's get this over with"

I'll admit that I was masking because I was anxious but he didn't dig any deeper and literally told me that I'm not autistic because I made a joke. Yes... I do that sometimes. There are autistic comedians! I make jokes, but I can't tell when someone else is joking. I felt incredibly low, like maybe I am NT but just a broken, rubbish version of it.

I left it for six months, then I requested the report he sent to my GP and I found my rage. I asked for a second opinion and the NHS team said no due to being short staffed.

Neurodiversity in women is my special interest so I used it to find myself a female psychiatrist who understands how autism presents in women and is up to date on current research. She had me do the AQ50 - I scored 47. She then sent me the most comprehensive, thorough screening forms you can imagine; it took me a week to fill out and there was another the same length for family members and my DH to complete. She asked for a full history of other diagnoses I've had over the years, family medical history, etc then we met virtually. She diagnosed me with ASD without hesitation.

I also have ADHD, dyslexia and dyspraxia, all diagnosed late last year at the age of 31. And diagnosed by different people (ADHD through the NHS; dyslexia through my university; dyspraxia by a private occupational therapist), so I trust that I really do have all of those!

Just try not to mask. It's why women and girls don't get diagnosed

Herein lies the problem of course the arrogant twat couldn’t possibly believe men and different from women. Same with heart attacks. Just like if he was racist to a patient and would very rightly be held to account for that so must misogynist be hunted and outed. What a totally twat. Just like the GP that told me ‘period pain’ that had me passing out with pain was all in my head and that’s where the term hysterectomy came from and hysteria and 50% of the population gave them and I needed to stop moaning pop two paracetamol and go get some exercise …. Argh

I'm 38 and today had my feedback appointment after assessment. I fit a lot of the criteria, but they have said they think I have an extreme case of anxiety disorder. This was apparent when I was a baby and has continued throughout my life.
Apparently they'd never met an autistic person that has the same level of anxiety as I do!
I don't feel too disappointed, like you, I had hoped it might offer more of an explanation to the way I am. I feel it's been a positive experience overall though, as I've had to really look back and reflect on the how's and why's of my behaviour. This in itself has given me a better understanding of myself and will help as I try to overcome the negative thought processes that feed my anxiety.

I hope you have a positive experience like I have, whatever the outcome may be.

This is the problem with sticking people into boxes of NT and ND. There are probably lots and lots of people with significant ND traits but just not quite enough, or maybe they mask it too well, for a diagnosis. And so they are left feeling like a "rubbish NT". I'm pursuing an assessment but I feel that will be me.

Please don't feel bad about yourself, OP, if you don't get a diagnosis. It doesn't mean you don't struggle or that you don't matter.

@amusedbush can I ask which female psychiatrist you saw?

. I also don't believe in this whole women-present-differently-to-men nonsense - you're either autistic or you're not.

My assessor said something similar, but it made more sense. It's not about presentation, it's about meeting criteria. The criteria are the same. We all tick the same boxes. Sure people have varying traits but diagnosis isn't based on traits. The assessment isn't set up to go through traits, they form a part of the overall picture but the assessment looks for deficits/impairment in specific areas.

Out of interest, what made them say it was anxiety rather than autism?

I saw Dr Reji Jayan through Psychiatry-UK and I would absolutely recommend her. Her theoretical knowledge is current (unlike the charlatan I saw the first time) and she also teaches at a UK medical school.

I felt very comfortable with her and I asked a LOT of questions beforehand before I paid the money to go privately. I was totally gun-shy after what happened with the NHS and it's not exactly an affordable option, so it was a seriously considered investment.

Sorry OP I forgot to address your question. I did get my diagnosis but I spent years before that's feeling like a fraud and worrying I wouldn't. When I eventually made contact for assessment (private because my GP dismissed me a few years ago) I spoke to someone who separated the stages and if she thinks you won't meet the criteria after the initial stage she will recommend you go no further. This is for both the appointment and the financial side. Imposter syndrome is real though and it's felt by a lot of people who are going for assessment in all areas. Autism may or may not be your explanation but if it isn't you can keep looking and find yourself.

I feel like you'll all enjoy this meme as much as I did

I get that, think I went through every syndrome that exists to find out what was "wrong" with me. After a lot reading and realisations, I do think I might be autistic. You have done better in at least getting assessed. I'm pathologically scared of being assessed for anything. Experience has put me 100% off the medical profession.

@Hopeandlove

I'm sorry that happened to you. Unfortunately I've had similar difficulties getting anyone to listen to me about physical conditions and have only just this year been diagnosed with hypermobility, fibromyalgia and PoTS, even though I've been pushing for investigation since 2007 I've begged for blood tests every two years for at least a decade because I was sure it was autoimmune/thyroid/rheumatoid arthritis and rather than actually look into it, doctors just said my bloodwork was clear and sent me home...

@amusedbush your meme game is strong lol

I am very grateful to you all for sharing your often painful experiences. It's disgusting the way some of you have been treated and sadly not uncommon

I've been thinking about masking but as I've only been considering autism for a few months, I can't be sure if I do or not. If I do, I must do it A LOT. So who am I if or when I don't mask? Do I just kind of...lie down?! (Only half joking...)

I went through autism assessment and ‘failed’. Her opinion was that severe anxiety presented the autistic-like tendencies. It doesn’t matter really in the long term but I did feel like I’d lost the right to be ‘messed up’.

Ds was recently diagnoses with ASD.
After his assessment the consultant said to me that he definitely had ASD traits, but they weren't sure which side of the diagnosis line he would fall. However the best thing for him was to use situations and reactions as though he had ASD, which would help him anyway.
Thankfully they decided he was bad enough for a diagnosis, but even if you don't get a diagnosis, that doesn't mean you don't have some traits which may benefit from acting as though you have a diagnosis.

Hope that makes sense.

For those of you who received the diagnosis how did it impact your life? Did the

Sorry sent too soon. Did getting a diagnosis open doors for any support?

It's the thought of failing an assessment that stops me seeking any kind of help or clarification, I can't face it

Thank you

In the past 18 months I've gone from "hmm, my joints hurt and I'm probably autistic" to having so many diagnoses I look like a bad hand in Scrabble (ASD, ADHD, DCD, GAD, HSD, FMS, PoTS), getting PIP, a blue badge and a free bus pass, and finally accepting that I sometimes need a walking stick at 32. I'm using dark humour as a coping mechanism and it might be twisted but my meme stash is fire

amusedbush hope you don't mind me asking but how and where did you get diagnosed? My DD 20 has many of the same things pots hypermobility etc. We just don't know where to turn with it all she is just fobbed off all the time.

Thanks for posting OP. I am somewhat self diagnosed. My social difficulties have the biggest impact on my life however i mask constantly when out of the house. I can’t just switch that off. It’s a part of me and I don’t know who I am without it. I feel like I have no personality without masking. I have not taken the steps yes for a diagnoses. With a score of 10 on the aq10 you have a good “case”. I score lower but extremely high on the catq. You need to advocate for yourself, take notes and examples back to your childhood

"Try not to mask"!...a very easy statement to make & somewhat overly simplistic. I was diagnosed with dyspraxia In my 30's & apparently a lot of women go undiagnosed as they develop coping mechanisms over time & so the signs get missed...

I met all my childhood milestones on time, don't display "odd" or repetitive/obsessive behaviours and I haven't had a lasting special interest.
They acknowledged that I've had extreme difficulty with transitions, changes to routine, but I have managed to adapt.
It's normal for babies and young children to experience stages of separation anxiety/general anxiety, but usually grow out of it. Mine has been consistent throughout my life, exacerbated by traumatic life events.

I do feel like I mask a lot and can definitely relate to imposter syndrome. I'm going to try very hard to be kinder to myself though!
I've also questioned whether it's autism making my anxiety & depression worse or anxiety & depression causing me to display autistic traits.
My daughter has very significant autistic traits and was diagnosed just before her 4th birthday. She masks around others and barely interacts or speaks around them. Her only verbal communication is through repeated phrases and is often not in context. Our family, her school and multidisciplinary team do all we can to help her, at her level. I do wonder how many autistic children (now adults), were forced in to conforming and masking by parents who didn't know any better.