...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 in the Midlands but it's a good couple of years here - if you can get past the gatekeeping to even get a referral. I went privately earlier this year, still had a fair wait, but it was incredibly thorough (I felt really emotionally wrung out after the assessment to be honest - stripped bare... and I work WITH autistic adults professionally!) I came back having scored incredibly highly on various elements of the assessment - and I thought I'd masked it pretty well!

As for having the diagnosis - I realised that I wasn't just socially and adulty-crap when my youngest was diagnosed, and the way I was affected by the pandemic went way above normal levels of anxiety. The combination of loss of routine (and I realise now just how routine-driven I was), the constantly changing rules and fear of breaking them, the masks - and the sensory overload from trying to wear one and trying to figure out people's feelings and intentions, the signage which felt like it was screaming into my eyeballs... it all just completely fucked me up to the point I'd had several, well, now I label them as meltdowns - at the time I thought I was just being a shit adult banging my head backwards off an office chair and rocking... followed by shutting down with a hoodie over my head in the garden for hours!

It pieced together an entire lifetime of being beaten up or threatened for being "strange" or "looking at someone funny", and being told off for being "rude" when I had no fucking clue what I'd done or said wrong. I realise now that a lot of the times I've suffered from anxiety or depression - it's been a combination of autistic overload and burnout, and trying to fit myself into a hole that society wants me in, but that I'm never going to fit in (and not just for the size of my arse!). It also explained why I always ended up with the autistic kids gravitating towards me when I was a teacher and them making perfect sense to me!

I was in the strange position of doing a clinical final year placement as a SALT when I was diagnosed - one of my placement clinicians really didn't like me and picked my autism to shreds in placement reports, but the other was a specialist in autism herself - and was absolutely fascinated having a verbally articulate candidate to ask about how things like masking felt from the inside and what I'd thought being on the other side of the ADOS! She reckoned it had been the absolute making of me as a clinician getting the diagnosis confirmed - and since then I've networked a lot to find other neurodiverse professionals, and applied and secured employment as an openly autistic SLT - the fact I can sit in MDT meetings where they're trying to work out why someone is behaving in a particular way - and I can completely see the total logic that's got an individual there is quite an interesting strength to have to my bow. I know now when I need to take the time to withdraw from an overloading situation, or put things like headphones on - before I would just have stayed and got more and more overloaded and not understood why. It's basically given me the strength to stand up for what I need - and to forgive that young adult me who could never quite make a success at anything and assumed that I was just social cancer cos I fucked everything in my life up!

Ahh will come back to this in a bit but for now, thank you, how fascinating, I'm an AHP too and always find myself advocating for the ~~tricky clients!

How fascinating CoffeeWithCheese and AutismAssessmentAnxiety.

I am another AHP; absolutely love working with children who may/may not be on the ASD pathway.
I find the behaviours absolutely logical, even in children with moderate to severe ID.
If I may say so, I get really good outcomes; I missed out on athletic ability or art, or musicality. But I really know how to connect with and support a child with asd.

One of my DC is a "high functioning" child 🙄and since they were diagnosed I have suspected that I may be also. I have poor executive function, take on more than I should, and become overwhelmed with anxiety when I inevitably run out of time to do what I need to do.

It’s my special interest too!

I’m not great at expressing any of my knowledge but from everything I’ve read I don’t put a huge amount of stock in an official diagnosis for myself.

If you look at the history of Autism, it shows that humans are still at the beginning of figuring it all out. 50 years ago you may have been put into an asylum. The diagnostic criteria in the DSM 5 is changed every several years. On edition even had a sentence left out, meaning during that short time lots of people may have been mis-diagnosed. It’s not long since they stopped using the term “Asperger’s” to name what they thought of as a higher functioning version of Autism.

What I’m trying to say is it’s all very flimsy and guess-y. Autistic people are now using online platforms to get across how it feels rather than how it appears.

I think in 10 years we’ll know so much more than what we know now.

On top of that, it’s a postcode lottery. Different towns deal with diagnosis processes differently, for better or worse.

My experience was being literally laughed at by my GP, who has met me a total of 30 minutes over 3 appointments over the years. I pushed and got to the next stage. Another male who told me “adults don’t tend to get diagnosed”, “that I’ seem to be okay and managing” and said I have anxiety. After a 15 minute chat. Where he asked nothing about the effects on my actual life.

My philosophy is: I know what it’s like in my brain. No-one else is in here with me. I don’t need to convince anyone of anything and don’t plan to.

ADHD and Autism / Asperger’s forums are full of women just like me, doing and thinking in the same way I do. It is what it is. I’m taking all their tips and working with the brain I’ve got, whatever it’s “Name” may be.

I thought I'd post an update. Closure, of sorts. It's been confirmed that the waiting list is 2 years so I've decided not to pursue an autism assessment. I can't handle that for a number of reasons. I've got this far in life. I need to let go of the idea that I'm autistic, it's not helping me. I wish you all well for the future.

I asked the person who did my assessment and she said "invariably, neurotypical people don't wonder if they're autistic". She said that by the time she's got to the point of assessment 75% of people were diagnosed with ASD, and most of the remaining % were eventually diagnosed with things like ADHD, CPTSD, BPD etc.