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.

I’ve now emailed again and asked them to get in touch and let me know. My final assessment was a month ago and the first one was in February!

Do they break for school holidays?

A lot of services do even if they cater to both adults and children so they'll only count the weeks that we're term time, so they'll still be in a 2 week period if that's their schedule as we had the Easter holidays in April.

I had my assessments in Feb 2024 for my history and March for my ados and received a diagnosis about a month later but this was through the NHS SYorks trust.

It’s on Wednesday. Two days notice!! Ffs. Convinced I won't get a diagnosis now.

That’s brilliant news!

You will get a diagnosis. This is just your ASD preparing to mask and put a brave face on it.

That’s great you have your appointment. Wait and see what they say before worrying, from what you’ve said about the assessments you’ll probably get the diagnosis but if you don’t then you can ask their reasons and you’ll get the report.

Thank you both. I still haven’t figured out how I feel about the adhd diagnosis and they keep sending emails asking for my feedback. I’ll give it when I’m ready ffs. Which might be never.
I think less than 48 hours notice of something significant like this isn’t on at all. Do they not understand the ASD/adhd mind at all?? I haven’t got the day off to gather my thoughts afterwards build Lego and I feel discombobulated just thinking about it. If they say no, you don’t meet the criteria I’m going to wonder what else explains my life like ASD did. ADHD doesn’t explain it all; it explains a lot, but not all. If they say I do meet the criteria: then what? Bugger all I imagine in terms of any help but at least perhaps some validation followed by some kind of shutdown I feel on the brink off regularly.
I’m currently in bed mainlining popcorn, with a hot water bottle, the cat who is curled up on the pillow on the other side of the bed, and a mind going warp speed instead of reading my book. Positives of the day is that I cleaned the living room thoroughly apart from a large area buried under Lego (this was prior to knowing about the impending appointment) and I have successful made and eaten a nutritious meal!! My ability to nourish myself has taken a backseat since the adhd diagnosis. Tonight I made pasta with homemade tomato sauce (I did a big batch yesterday) with a pinch of chilli; mushrooms and red pepper and enough cream to turn it towards pink. Some grated cheddar on top too. It’s been years since I made that particular dish and it was delicious. Ds tried one piece and declared it not too bad but he wouldn’t eat it if I served him it. Dd didn’t comment. Dd has English Literature paper 2 in the morning and she’s been info dumping on me about poetry and An Inspector Calls and now I’m info dumping here due to anxiety. Thanks for the handhold, I appreciate it. I remembered again today that I have no friends so there’s nobody I can talk to about this. The cat is pretty good but the feedback limited.

If they do offer help then don’t feel you have to take it. I got put on 6 sessions of ASD and ADHD aligned CBT and hated every second of it.

You've got what we call silly goose brain right now.

They have given you an appointment that has disrupted your routine and schedule, you're overwhelmed by it, and convinced yourself you're not going to be diagnosed whilst doing the most autistic thing ever which is panic about changes to your routines and schedules. You're validating one of the criteria right now.

It's normal though, I don't know anyone who acted differently before their feedback appointment.

FWIW they did mine via an unplanned phonecall, something I'd stated many times I struggle with, and on the phone I didn't know whether to laugh because I was right or cry because I didn't know what to say so instead I just went mute because I had a feeling of clogged peanut butter in my mouth and could only muster grunts.

Try and see the short timeframe not as a reflection of how they've misunderstood autism, but that they're just desperately trying to get through their backlog as fast as possible to help you and others in this same situation and they have news about you that just can't wait because they know how important it is that you know yourself as fast as possible.

Yes, I agree that they are probably clearing a backlog and possibly my emails have prompted the sudden appointment. It’s with the assessor who did my informant interview with me and I liked her. I didn’t think I would at first but I think she was more relaxed that the ADOS assessor and was more chatty. She confirmed I am different and I think would have given my result then if she was allowed but said it was frowned upon by managers.
I'm having to drop ds off earlier to school to be back in time to not be a sweaty rushed mess for the call.

I don’t know what to do with the information from my ADHD diagnosis. I feel it should have made a big difference to my life in some way. I’d been treating myself as though ND to some extent so getting the diagnosis was validating but I also felt they’d made a mistake somehow and I was just pretending and didn’t really have ADHD. I mean how could so many professionals have missed it? I must be faking. I still need to remind myself every now and again that I DO have ADHD and my brain is legitimately working differently and that I can’t expect it to function the same as someone who has almost sailed through life with top grades and is “successful” and on good money while I sit here on benefits because I’m a carer and don’t have time to work outside of that because it takes all my time. I also don’t think I’d cope working with people now. I feel very much restricted by myself but history shows I can’t do ‘normal’ working longer than a few weeks before I’m feeling ill. I’m 48 and don’t know if I will find something that fits me now.

The imposter syndrome is real. It takes years to get out of the mentality that if you just try harder you'll be normal.

Every so often you'll be doing something that taxes you then you'll stop and think why am I doing this? It's going to cost me my ability to do something else later, and slowly you'll stop doing it and realise that your expectations of yourself so far have been unrealistic and you are allowed to behaved disabled, because you are. You have a different neurotype and you're allowed to honour yourself by behaving in line with that neurotype and accommodating yourself.

I had an anxiety dream where I decided to go to the shop for food before my GCSE exam (Dd is doing her GCSEs). I had 15 minutes to get back from the shop and then get to school but school was 20 minutes from home. I phoned school in a panic and was asked if I had any extenuating circumstances and I said I’d just been diagnosed with autism and ADHD and she said not to worry and that I could just do it next month. Awful dream.
I’m feeling anxious this morning to say the least. In just over 2 hours I’ll know.

Best of luck OP. Thinking of you today.

I have a diagnosis. I’ve no idea how I feel about it. It took them a while to decide because of being stereotypically female autistic and having good communication skills. Unusual hobbies✅ repetitive behaviours ✅ social difficulties ✅ massive sensory issues ✅. She did use the term high functioning in explaining where I am on the spectrum. The report is being written today and I should get it soon.
Not sure if I want to cry or celebrate to be honest. I feel relieved that the assessments are over. I feel sad at how life could have been different.
Thank you so much for the hand holding, I appreciate it very much.

You will feel genuine grief for a good while, but it's OK to feel happy about your diagnosis too because while you can't change the past you can now make adjustments and accomodations for yourself for the future.

You'll go through cycles of thinking how did nobody know? Why did they treat me like this if they had any suspicions? Why has society expected me to behave in a neurotypical way? How will my family react, and will they accomodate me or will their perception of me change for the positive or the negative?

But now you know and you can put your own boundaries in place to make sure you are accommodated, you are regulated and your self worth isn't determined by neurotypical standards.

I am surprised that they used the term high functioning, because many professionals are stepping away from using functioning labels and instead focus on needs. Being high functioning is how others perceive you, especially when you're masking, but you can absolutely be struggling to function at all, whilst at the same time it can be true that you do have support needs but they're lower than someone who is non-verbal and will never live an independent lifestyle. Perhaps they just used it as a lay-term to explain how they've perceived you, but you should also remember they've only seen a few hours of you in a clinical setting. They've no idea what the rest of your life looks like.

I'm so happy for you that you've got some answers, and hope you've got a bit of breathing space now. It's been a big worry for you, but it's something you've known about yourself for a while and now you're validated.

I’m glad you have the diagnosis now. It’s a strange thing to want and then finally when you get it you struggle to process it for a while. I’m several years in so very comfortable with mine but I remember wanting it so bad to make sense of things then feeling a bit lost when it came. It took me a good 18 months to get used to it and stop overthinking every step in my daily life.

The only thing I would say is the bit about ‘where you are on the spectrum’ isn’t correct, the spectrum isn’t a line where we place people in order of severity. I also know from personal experience that being ‘high functioning’ isn’t always possible. Sometimes autistic people’s needs change. I have had periods in my life where I basically didn’t function. My DC who would have been considered high functioning at assessment has severe high needs as a teen and is mostly mute, borderline agoraphobic and has to have an adult with them at all times. Just keep in mind the level of functioning you have/had at assessment isn’t set in stone.

Glad you got the diagnoses finally. I’m also surprised at them using high functioning, that was not mentioned anywhere in my feedback call or report and it’s not commonly used now.

I was surprised by the HFA bit because I know from on mumsnet and my own reading that it’s not a term used. As a child age 7 to being about 25 my needs were significant but not met at all. I also knew the spectrum isn’t a line but I didn’t see the point of correcting her and she was 30 minutes late because admin hadn’t told her about the appointment! I will be mentioning this is the feedback they keep asking for.
I felt the assessment was still very male centric but my assessor knew that girls are often very articulate and present differently. They had a few meetings about me to discuss my assessments so I know it wasn’t one of these oft portrayed quick diagnosis that everyone gets if they go private. They considered everything very carefully and were thrown by my communication skills so weren’t sure at first but I met all the criteria despite my articulate communication. Doesn’t feel articulate today. I might be down to grunts by 8pm.
She said autism specific therapy might be good along with getting in touch with organisations about sensory things. I declined mental health help because I don’t need it and she didn’t think so either but they have to offer it. I think the therapy is to work through the could have done better at life but oh look! she’s autistic and has adhd so no wonder things went wonky.
I need to go get ds from
school but I’ll probably pop back later to offload more thoughts. I didn’t tell my mum today even though I was advised to take to someone. I’m talking you guys though so that’s good.

I'd take time to brace yourself before talking to your mum or any other family.

It might be wonderful to open up but also sometimes family especially our parents internalise our diagnoses as a personal failing. Even with the most emotionally mature parents, it can spark a lot of "what if I'd have done that instead" thoughts or it can feel like they've just been told you're broken or irreparable in some way when you're just you, not broken, just different.

I'm not saying this is how it will go down but I do know your mum will be feeling some emotions and it can be just as confusing for her as it is for any one getting diagnosed, so you'll want to make sure that you have the spoons to cope with it as it will surely be emotional.

I’m so pleased you have a diagnosis! I hope they are able to help you and get you some support.

I worry that they said you were articulate and that made it difficult to diagnose. I had something similar 12 years ago and I thought they’d moved on. The pressure on girls to talk is much higher than on boys and I think it might a feature of women on the ASD spectrum. I think it’s monologuing - I find it difficult to know when to stop talking. I will be seeking an ASD and ADHD diagnosis soon, so it’s a bit worrying. But I’m also 56 and I have worked out a lot of ways to mask and fit in.

I am pleased they’ve agreed you're on the spectrum. Best wishes xx

I went with an NHS diagnosis and my feedback report states under language and intonation that I'm extremely hyperverbal past the norm and into unusual territory. I was also invited to do a Cat Q test post diagnosis to get my masking score so I do think it's catching up in places but obviously like the OPs situation, it's not catching up quite fast enough.

Maybe I was just lucky with mine but it helped it was an all female assessment team I believe, and I had expressed my concerns of the model being based of white boys.

My assessor asked me if I read and I went on and on about this vampire trilogy I'm reading, then she started talking about vampire diaries which I don't care for and was completely disengaged and didn't ask any of the questions she asked me and therefore gauged that although hyperverbal, lack emotional reciprocity so score highly in the social criteria too.

If you do seek a diagnosis for yourself don't be afraid to mention you're aware that there's still a misunderstanding about being hyperverbal where the norm is less/non verbal based on young boys, so you want to be reassured there'll be no bias.

That's really helpful, thank you!

I'm hyperlexic, too, learning to read at 4 and I read books quickly and constantly. I've read 43 books since January of my target 100 for the year, which puts me four books ahead. I'm also really quick to assimilate information, so I listen to audio books at 1.25-1.5x speed.

I worry I don't have an unusual interest or obsession. I don't collect things, though I do build booknooks, which is my current passion. I didn't do any model building last year.

So I worry that they will say again that "it's hard to tell, and you're borderline, so we don't think you are autistic". Well if I was borderline and I'm female, doesn't that mean I am?!

I also think I have Rejection Sensitivity Dysphoria, which is connected to ADHD and it's really hard right now because I'm job hunting and I've had to face a lot of rejection. My instinct is to not apply, but I need a job!

I don't have any strange interests, mine is gardening but I do get antsy if I don't get to do it so it's strange in intensity I suppose, and when I'm not doing it I'm reading about it, and can tell everyone about different varieties of tomatoes, and as a child I had a pet tomato, that I carried everywhere with me until it had rotten, and then we had a funeral for it.

I wouldn't even call it a special interest though, just that I like to research into things with intensity.

I'm also that person that friends turn to when they want to know about things because I've probably done 24 years of research overnight on what they want to know about.

Another one they noted down was that after I'd been through a DV situation, I'd done so much research into human behaviour and read all of the Why does he do that? books to understand human behaviour yet I couldn't tell them why the cat and the bird were being friendly on the pier on their silly picture cards because that's not normal behaviour.

Don't get me started on the frog book. So many inconsistencies.

I’m still vaguely traumatised by the frogs although I thought they looked more like toads. I couldn’t do it.

when I get the report I’ll update exactly what they said. She was in a hurry because she hadn’t expected the appointment and had forgotten lots of things about me and got mixed up repeatedly about one thing. It wasn’t important but as someone who values things being correct it bothered me.

It is worrying that my ability to communicate was the thing that could have potentially led to me not getting a diagnosis. I was reading well at 4 and have loved books and read a lot my whole life. I have less time now but reading is my favourite past time except LEGO.

https://alterbehavioralhealth.com/blog/high-functioning-autism-in-women/

I’ve just had a read of this and found it interesting. I’m hopefully going to have the energy to read the research that is very recent.

Oh absolutely that touches on a lot of points. Especially the intelligence one.

On my PIP assessment I explained my struggles, and how I can't understand traffic signs, one overwhelms me then I get into a panic and the more signs there are it just overwhelms me. The assessor said "but you don't have a learning disability?" No, I have autism and it affects how I process the world around me!

So many myths that lead to stereotyping even in a clinical setting, it can feel like you're constantly having to educate people.

Especially on some threads on mumsnet too, so just be mindful you don't waste your energy explaining yourself to people if you don't want to.