What if the assessment says I'm not autistic?

[AuADHD]

I don't know how I'll cope with that. I don't know what else it could be because reading about autism and adhd was like all the tumblers on a massive slot machine falling into place one by one and many bells going off. An overwhelming mental image there 🥴
I've spent the past 5 years or so believing that autism and adhd explain everything about my life. But what if the assessor says she doesn't think I meet the criteria? My assessments are this month and I am very anxious that I'll just be diagnosed as a broken maladapted human who has failed at life and relationships through my own fault and flaws. My sense of self would be destroyed.
I'm being assessed through the right to choose.
I scored 16/18 on the self adhd assessment and 8/10 on the autism self assessment for the company who is doing my assessments.
I've waited for years for these assessments and feel like cancelling due to fear I'm not autistic or adhd and just broken or have a personality disorder.

It sounds like you had a similar childhood to me. I was bullied everywhere I went and I went to many schools. I’ve remembered one thing this morning in that my dad carried an atlas in the back of the car and every journey is pour over the back pages that showed all the road signs and markings. That was from around age 4. I don’t drive and people often comment how good my navigation is and how well I read road signs and have done from an early age. I was a plane spotter in my early teens and could identify many planes by type and their insignias. I was a skin picker and not good at transitions. I would cry whenever my mum left me at playgroup and then was fine after half an hour. I remember the journey in my pushchair well and also the sound of the rain on the rain cover coming back from the shops. I loved swings and still go on swings now as an adult if I’m in a park. I like the back and forth motion of swings. I loved the roundabout too, and would spin myself in our dining room. I only played with a few toys but that was because I didn’t have many. I’d stack my brothers’ Lego but only one specific type of piece. Perhaps the assessor will help trigger more with her questions.

I must be really anxious about this because I’ve now had two nights of nightmares about the assessment. One where I kept messing up this craft type activity but unintentionally so they couldn’t do the assessment as it was 1/3 of the marks, and one where the autism diagnosis meant my dc were taken off me.

Just me waffling on again into the ether. I’m feeling quite anxious tonight and thinking I need to sort myself out sharpish for the questions that lie ahead. I’m still worried that I’ll be told I don’t meet the threshold for diagnosis. I’m not entirely sure why that matters because I’ve accepted my struggles, sort of, and adapted my world as best I can, but it would also be a kind of identity crisis after years of wondering if my friend was right, if there was an explanation that made my whole life make sense and adopting that explanation as truth. It would be such a head fuck. I know I have my ADHD diagnosis and that does explain many, many things, but still, I’m worrying about it. I’ll be glad when it’s over although I have to wait a month for the results. Why so long?! Surely they have already processed my ADOS and now just need the informant part which will tell them that yes, I struggled as a child, it all went to shit when I went to secondary school, and I struggled from then on. Bullied in every school and workplace with no idea of why. Liked but not liked. Very lonely in a workplace or room full of people. Now I prefer to be alone and take away that expectation of friendship.
I had a big wobble the other day where it hit me that I’m no longer young, will never be young again and will never have those opportunities and how I wish I’d known why I was different and been given strategies to help cope with life instead of failing at everything. I feel very sad and angry about that. My life could have been so different.

You definitely don’t need to sort yourself out for the assessment, they need to know how you struggle.
I’m in the same position but with a solid Autism diagnosis and struggling to get an ADHD diagnosis with it.

The Autism report came after about 3 weeks but I got my diagnosis on the same day as the assessment.
The ADHD report took at least 5 weeks and only after I chased it a few times, and said no definitive diagnosis because of lack of childhood witness reporting.

Most annoyingly, while the Autism report said my symptoms are consistent with Autism but showed distinct ADHD traits, my ADHD report said my symptoms could be explained by Autism.

I can get another ADHD assessment through DH’s work, and probably will because I really like definitive answers to stuff (and that ADHD assessment definitely wasn’t definitive about anything), but in the meantime I have “Psychoeducation sessions” through May to help me understand my condition better and navigate the world as an Autistic woman (with definite but undiagnosable ADHD symptoms).
Please know that you are not alone, and though we will never meet you are supported in this journey.
Br kind to your awesome weird glorious self.

@InMySpareTime thank you. I’ve just found this which is really helpful for me and might help others. I do not like surprises of any kind, well, except finding an extra chocolate I didn’t think was there. Bonus chocolate is always good.
https://www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf?sfvrsn=1dc6557_2

Knowing what kind of things I’ll be asked about my childhood and now is very helpful and going through the questions it’s very obvious that I meet about 95% of what they are looking at. It’s a very strange feeling realising that you’re not what others class as normal. It’s also very upsetting knowing that nobody, not even a professional, picked up on it at any point when under mental health services as a teenager. My life might have been so very different and I feel a kind of grief at that. I sometimes wish I could live some years again with the knowledge I now have.

I know I’m a bit late, have only just found the thread, I had the exact same worry, what if I wasn’t autistic and I’m just very weird! I was told during the assessment that I was autistic and probably adhd, not sure if it’s the normal way the assessor works, she knows me in a professional way and said she had drawn a lot of the conclusion from knowing me. Hope it wasn’t too brutal I was knackered after the assessment as I stopped masking for the day.

@0psiedasiy I was told I’d scored highly on the ADOS so coupled with all the yeah she was always different, weird, awkward, had strange ideas, wouldn’t look at us when we spoke to her, wouldn’t open presents and never liked having her photo taken you’d think I’d get a big tick is the autistic AF box 🤣

Today’s the day! I’m agitated and nervous hence waffling on here. I either clam up completely or talk like there’s no off button when nervous. I’ll have a feedback appointment in a month then everything will be over with the assessments and my life will either be explained or not. I hope the report is less doom and gloom than the adhd one.

All the best, be yourself and it’ll be fine.
Don’t be the “nice” self you put on for people usually, be your actual unmasked self.
Usually that ends badly, but this time they need to see the real you.

I agree. Be you. It will be fine and we'll be here when it's over.

Thank you.
I'm all done now. She will speak to the assessor who did my ADOS and then make a judgement. I asked for her thoughts and she says I have a lot of autistic traits, and confirmed I am different to other people but that’s ok. I then said the ADOS assessor had said I’d scored highly on the ADOS so she nodded and said she’d be very surprised if I wasn’t given a diagnosis. I’ll get my results in a few weeks but it seems a formality at this point. I cried when she said she thought I would get a diagnosis.
Im off to the big city to buy bubble tea and Lego.
Thank you to you all for holding my hand.

I love Lego!

Ooh THE big city? We've just walked past the queue for the Lego store in Leicester Square!!

Sadly, the dirty, ugly city that is Manchester. I forgot to buy myself something except some cherry blossom tree pieces because ds was loading up on Minecraft Lego and I was distracted by how busy it was and was a bit hyper this afternoon. Ds also very hyper so it’s been tiring. His adhd appointment came through today for June.

I’m sort of screwing up my face and wondering how I feel about things. I can’t see the assessor coming back after comparing notes with the ADOS assessor and saying, actually, no, we don’t think
you meet the criteria. Not when I’ve scored highly on the ADOS and been told today I have a lot of traits, am different to others and that she’d be surprised if I didn’t get disgnosed. When I said about the ADOS high scores she seemed to cement her opinion but apparently the company don’t like them to say anything before it’s official. I never trust anything unless it’s official though. She said there’s a strong history of traits in my family too from what I’ve told them and my big list was very helpful so she’d already got a lot of info from there. She highly recommended I try medication for the ADHD. She didn’t realise at first that I’d been assessed and got my diagnosis for that and I’m sure she was about to suggest assessment at one point. When I said I’d been diagnosed she nodded as though that clarified things and made more notes.

It’s a strange feeling knowing you’re not a poor excuse for a human being but rather than you are just different and that that’s okay. I saw something on Facebook the other day albeit briefly and it said about how we should realise how amazing we are because we have achieved all that we’ve achieved despite being metaphorically blindfolded with our hands tied behind our backs. It really struck a cord with me. I’ve often beaten myself up about why can’t I be like other people. Short answer is now confirmed (with adhd dx) that I’m not like other people so I literally can’t do things like they do. It’s going to take some time to really accept that rather than rage against myself and my failings.

I really do value and appreciate you all for your support over the weeks.

I love that thought that yes all we have achieved (albeit not where I wanted to have got to at this stage in life) has been whilst blindfolded and with hands behind our backs. I've not thought of it like that before.

Ah I like Manchester. We'd been to London for the day and just coincisently read your post as we walked past.

You definitely need more lego for getting through all this!

My psychiatrist diagnosed there and then (but the one I had for adhd didn't! It was another appointment). They all see to do it differently.

I hope you get the official word soon.

I emailed clinical partners to ask if there was any news on my feedback appointment and the appointments team are going to get in touch to book it. I’m back to worrying that I don’t have autism then I realise how stupid that sounds. Nobody wants to be autistic but I hope those on this thread know what I mean in that it’s an answer. A reason. A valid reason, not an excuse, for all my difficulties and struggles throughout life. I know I’m still ND because I have the ADHD diagnosis but ADHD doesn’t explain everything.

It will be fine. Your autism is making you worry because you were told a time and they haven't met your expectations.

It's OK. No need for worry or panic. We are here x

@AuADHD
I know that feeling so very well, and I was so stressed about the what it, what if not, that I almost cried when the assessor said that there’s absolutely no doubt that I meet the criteria.
It’s exactly as you have (quite beautifully) described it, I could have written those lines myself: “I’m back to worrying that I don’t have autism then I realise how stupid that sounds. Nobody wants to be autistic but I hope those on this thread know what I mean in that it’s an answer. A reason. A valid reason, not an excuse, for all my difficulties and struggles throughout life.”
Please don’t worry too much, I know it’s easier said than done, and the waiting is the worst. I keep my fingers crossed for you that you’ll get your answers soon.

Thank you for keeping me company. I hate hate hate living on maybes and refuse to do it as far as possible. I did cry when the assessor said she’d be surprised if I didn’t meet the criteria seeing as I scored highly on the ADOS and she said I had a lot of autistic traits and was different to other people. Once I know I can make my peace with it. I don’t feel I’ve processed the ADHD diagnosis yet because I’m waiting on this one. Then maybe I can get my shit together and process it all as one.

I hope you get some answers soon OP.

I can only speak for my own journey but like you I was very fearful that they'd not find any answers.

In hindsight, the assessors were trying to subtly hint the likelihood of my outcome but of course being autistic, I didn't pick up on the hints!

But what I will tell you is that my assessor said that if I wasn't diagnosed with autism, I would certainly have got a standalone cPTSD diagnosis. She said the deciding factor was whether the issues could be evidenced as beginning in childhood, and that many autistic adults also receive a dual diagnosis of autism and cPTSD because being autistic is inherently traumatic especially when late diagnosed. She reassured me I wasn't broken or maladapted and neither are you.

I ended up with a diagnosis of autism, with evidence to support I needed substantial support with all daily living activities.

It was a hard read because it's true, and it felt wrong to be happy that my entire life had been pathologised on a piece of paper and basically pointed out all of my unchangeable flaws and struggles, but it was also a huge relief that all that time I spent worrying about the outcome, especially when it was basically being written in neon, was for naught.

I don't know if this will offer any reassurance to you but it sound extremely hopeful that you'll get the diagnosis you're looking for if they've already indicated you've scored highly on the ADOS, and they'll likely just be collating your history together to be sure that they're correct. They have to be careful especially with adult diagnoses because it is a lifelong developmental disorder, and you've gone on masked for so long in your life.

absolutely reluctant.
two friends know officially.

anything medical knows.
immediate family knows.

I’m still waiting for an appointment to get my feedback and results. I’ve half given up really.
I was very brave on the train last weekend when someone was sitting in my seat and her husband was sitting in the adjoining seat. She offered to move but they were eating their very smelly tuna lunch in a not very pleasant way and I spoke up and said we can’t sit next to people eating. Ds would have freaked out completely. We had seats across the aisle due to reservation issues and really they could have moved seats to allow us to sit together. There should be a law against eating on trains unless it’s in a dining carriage. I walked through to the toilet and another guy was eating popcorn and smacking his lips so much I could hear him before I saw him. I smelt it as soon as I opened the carriage door and he was halfway down. It must be nice to not have sensory issues that affect every day of your life.

If you can purchase some headphones the Sony xm5 headphones are fantastic they have the option to toggle captive audio so you can hear if someone speaks to you but they are extremely good passive sound blockers.

The world isn't set up for us with sensory issues and it socks. Eating noises drive me crazy. Smells are insane, the smell of cigarette smoke gives me really bad migraines that affect my stomach too and people just smoke everywhere and it has made leaving the house impossible without issue.

I think loop also do some earplugs that you can toggle that are significantly less expensive than the xm5s mentioned earlier but I use the xm5s when me and my carer are separated as I can be on a call with them to communicate short or long distances without having to listen to other people and it can be really calming.

Best of luck to you. Don't be afraid to make a call and ask where they are in the process.

You still haven’t had your diagnosis? That’s unusual it’s been so long, have they told you why?

I have some soundcore headphones that are really good and drown out most stuff. I took them off to go to the loo though.
I’ve sent 3 emails asking about my appointment and keep being told someone will get back to me but they don’t.