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.

My mum has been trying to get me diagnosed all of my life. Took me till I was 29!

She was called an anxious parent, referred to social services once for trying to get doctors to diagnose me with something I clearly wasn't, that only boys could be autistic etc.

I once went to the doctors on my own at 18 and asked for a referral to autism services and was told no because I make eye contact.

I had a qualified occupational therapist come and view me in multiple settings, seeing how terribly I transitioned between tasks and how frustrated everybody was at me and still said no I'm just a bit quirky but nothing to worry about.

It took me having a full blown mental breakdown after being put on antidepressants and getting more depressed than ever before, for someone to finally look at me and take me seriously.

That it's not normal for someone to research 10,000 varieties of tomatoes and the climates they best grow in and sort them into heirloom and hybrid categories, and that it's quite restrictive and repetitive and not just someone who likes to do a bit of gardening, or that it's not normal to know the names and birthdays of every sanrio character, or be able to tell you the contents of the Unwins year 2000 encyclopedia of dinosaurs with amendments to updated names and categories since even though they haven't picked the book up since 2001.

But nobody would have known these things about me because nobody ever asked!

I think it's come a long way since. Don't be discouraged by previous attempts for a diagnosis. There is a much better understanding of autism in women and girls now. I am actually glad I got my diagnosis when I did and not years ago because how would anyone have been able to help me as a girl or young woman if they didn't understand what they were supposed to be helping me with?

Go for it!

Thank you. Apparently I don’t have special or obsessive interests, so I’m not autistic. Which is a male characteristic. But I do know all the Prime Ministers going back to 1945 and the years of the elections. And I’m currently obsessing about knitting blanket squares.

But mostly I have had a lot of contact with the NHS recently and I’ve burst into tears every time because I have to wait weeks for an appointment I was promised ages ago and they haven’t told me what the plan is for my treatment, so the not knowing is killing me. I’m a senior level director who never cries.

Collecting information is still a form of collection so I think with a knowledgeable assessor you will be in good hands.

I crochet and I spend an exorbitant amount of money on yarn, to the point it is restrictive (low income anyway so doesn't take much to become restrictive). I don't line my yarn cakes up in colour, size or weight order, I am not neat and tidy (aside from if something isn't at a right angle its at a wrong angle), and it probably wouldn't bother me if something had to change about what I was crocheting, but I will talk your ears off about yarn, projects I've seen, projects I've done, brands I am saving for etc.

My obsessions change with the wind sometimes. I saw somewhere that’s there’s 4 types of autism: trains, dinosaurs, Star Wars and Lego 🤣 I got the Lego version but only in the last few years and I’m obsessed. Totally obsessed. Would buy Lego over eating. I also love trains and planes and have loved planes from going very young. My interests change because of adhd I expect. The assessors were unsure if I fit the criteria for diagnosis due to being so articulate but my unusual interests (I don’t think they’re unusual) swayed them. Things need to improve for women as things are still so male-centric.

I was talking to Dd about advent calendars yesterday and how I loved the picture ones with glitter. I said how I’d only had a chocolate one once when I was about 9/10. I saved all the chocolates to eat at Christmas. Refused point blank to eat any until then and saved them in a box. Dd deemed it Christmas: autism edition 😂 I tend to give up chocolate for advent now. And hate opening gifts in front of people. I get the fear. Don’t like being watched and don’t like surprises.

I don’t have those obsessions, unless a fixed interest in a craft activity, candle-making, book nooks, knitting, counted cross stitch is “Lego”, then I drop it to rarely take up again.

I was told I am too articulate and hold too much eye contact to be autistic. I don’t hold eye contact, I look at people’s mouths. Trick I learned as a child in response to “look at me when I’m talking to you!”.

I watch mouths too, to the extent that if there’s any background noise at all I can’t hear people unless I lip read them too. I missed a lot of spoken info over Covid mask-wearing.
My childhood obsessions were books (literally any books), a very small selection of Disney videos that I watched until the tape wore out, Lego (but only Lego monorails or floor plans of buildings), Meccano, Speak+Spell, Speak+Math (both of which I had perfect scores on).
As an adult I don’t do any of those, barring the odd book. I got into fabric craft, making clothes, soft furnishings, story props and puppets. I do jigsaws, but not like any normal person would. I pick a piece, stare at the box, and put that piece where it goes within the border. After a while some of them join up. I hyperfocus and do not stop jigsawing for food/drink/sleep/toileting until absolutely necessary.
That probably counts as an obsessive fixed interest.

I have unusual specific interests that I’ve had since childhood and still have now (won’t say what they are as quite outing for anyone that knows me). It’s not unusual for me to be awake until 1 or 2am researching, reading news articles and watching videos of the topics. It did form a big part of my assessment as my assessor asked me about it and then I couldn’t stop talking about it. I also have quite a collecting personality and as a child collected a few different things and I also like collecting information about different categories. I wouldn’t say special interests were specifically a boy trait as most autistic women I know, including myself, have them just not always the same particular ones.

I can't look people in the mouth, because I notice their teeth.

Now it is a bit pot called the kettle black, because I don't have the best oral hygeine, yet I don't have stains or plaque, and I've no cavities, and the dentist has always been really happy with my teeth, but I do fixate on other peoples oral hygeine, teeth shape which is a pleasant fascination of mine that peoples teeth shape give their face so much character, and whether they've got smelly breath.

When I try and look people in the mouth, my face has subtitles that I just can't switch off.

I don't want to make people feel uncomfortable, so I just try and avoid mouth watching where I can.

And as I child I took look me in the eyes WAY too literally.

Basically I can't focus on one eye, my vision flicks back and forth between both eyes, really fast, like nystagmus but a little bit slower. This freaks people OUT and they often ask me to stop, but I've been doing it so long that I can't.

It's a huge source of poor self confidence for me, and when I catch myself making eye contact, I suddenly veer my vision away.

I always have this inner script when talking to professionals though that goes like "just look at their left eye, their left eye, keep looking at it, oh my god have they noticed I'm only looking at their left eye, they're really close do they think I have a squint or something, quick, change eyes, right eye, right eye, right eye.".

I'm often told to just look at the bridge of the nose, but I can't keep focus on that either because I think my eyes just look crosseyed when I do that.

Updating to add that Ds has had his first appointment after being referred by school for an ADHD assessment and the specialist is referring him onto both autism and ADHD pathways for further assessments.

That's wonderful news that they've agreed a dual diagnosis will benefit him. Much better to do both at once if you can.

Brilliant news!

There’s a great thread over on AMA by a poster who conducts assessments and specialises in assessment of women and girls. It’s worth a read for anyone trying to get referred or assessed or needing any support with the process.

Newly diagnosed ADHDer here. And likely autistic too. Off to read this thread and see what I can learn.

@ByGreyWriter several of us have managed to get diagnoses despite non-existent, patchy or just plain wrong parental reporting.
My parents cannot recall a single thing about my childhood, I was their first born but was somehow always the “other” child as I withdrew from social situations by reading compulsively. They have lost all my school reports and have no official record of my childhood.
The assessor used my husband’s testimony as he’s known me for over 25 years and seen that my issues existed consistently all that time.

I also didn’t use my parents in my assessment, they don’t even know I went for assessment and got a diagnosis. My husband was my informant and did the questionnaires, and I provided the information for my childhood.

@ByGreyWriterplease don’t use my thread to start an extension of your thread where you talk about autism possibly being undiagnosed personality disorders. Your thread contained the diagnostic criteria for autism which is significantly different for narcissistic personality disorder and ADHD.
This thread has been very supportive but if it’s derailed with your own agenda then I will ask MNHQ to close it down.

How are you doing OP? Have you had any access to post-diagnostic support yet?

Ooh came back to this thread to ask how poeples parents reacted.

I have a parents form to fill out for my adhd assessment and I know my mum has told me certain things over the year, restricted diet (I ate jam sandwiches, chips and sausage, mash and gravy)- it’s on my medical records, I was impossible to leave at school, my brother basically moved into reception/I sat in his class for the first half term I was at school ( mentions in my school reports), that I was always in a dreamworld (also mentioned in school reports) etc but she’s now denying it saying I was perfectly normal ( although I’m not sure if she understand what normal actually looks like). My brothers, nieces and nephews all have various autism (Asperger’s, high functioning) adhd diagnosis’ plus a bit of schizophrenia thrown in.

I have known I had autism since around 2000 but only got a diagnosis last year (before my brothers diagnosis's). When I told she said I was just copying my brothers. How have other parents taken it?

No post diagnosis help. I’ve been in burnout with so many things causing me stress but feel
like I’m coming out the other side now.
in hindsight I’d have filled in the form for my mum but made it different to my own to not be obvious. Unethical I know but when you’re faced with adhd behaviour appearing normal to your family it makes it difficulty to get an objective view of your life. My assessor didn’t speak to my mum, she just did the form and for most of the answers she just said she didn’t know. She did know if she’d have thought about it. My mum’s form gave me a sub clinical score of 8 whereas my own firm
was 18 and way above the threshold. It’s easier with a younger child perhaps who is struggling at school and hasn’t been socialised as much and stands out as different. At 47/48 my weirdness was normal to my mum and just who I was. Thanks to this thread I knew I could ask to be my own informant for the ADI-R so that’s what I did. It was hard thinking back but the assessor was skilled in asking questions and giving me scenarios to think back to.
I spent a lot of time after looking back at my life and realising that my responses and behaviours were not normal and feeling angry that it had been missed. I’m too tired at the moment to really care anymore but occasionally, like my DD’s GCSE results day, I felt sad that I’d missed out of achieving what I was capable of because I’d been a school refuser with an eating disorder, terrible anxiety and depression although I now know this was likely burnout not depression. Anti depressants made no difference and I tried many different ones between 15 and 18.
My mum felt guilty I think when I got my diagnosis for ADHD. I’ve never actually told her the outcome of my autism one. She acts like people have cancer when she knows they’re autistic. Like it’s such a shame and they need pity. I talk about being autistic but I’ve never told her the outcome of that appointment directly. She’d feel like she was somehow to blame. She also seems to think that any learning disability that is obvious must be autism and associates autism with being sub-normal.

I did fill my form out for my mum but in my case my mum was stood over my shoulder literally nodding at everything I was putting.

My nan on the other hand (whom we live with) was in denial for a very, very long time.

All the people diagnosed with ADHD and autism in our family were diagnosed early and were young white boys with the traditional hyperactivity, delayed speech, not recognising their name being called, and intense and strange interests.

To her I was a very normal child, because her normal children behaved the same way and grew up to have BPD, OCD and schizophrenia (which is sadly probably due to trauma from unmet need in childhood). She also couldn't understand how hyperverbal, hyperlexic, perfectionist, attentive little me could be diagnosed with the same condition as my then 3 year old non-verbal, inattentive, bouncy, risk-unaware, illiterate little boy.

@0psiedasiy is your brother able to be your history informant?

It only has to be someone who can validate your struggles have been present since childhood, not necessarily a parent.

OP I'm really sorry about the burnout. I've been through it a few times. I have an appointment on the 10th to talk about autoimmune conditions which can stem from prolonged and persistent burnout and I wouldn't wish this on anybody. Please look after yourself, and I know it can feel weird putting your needs first as it's such a sudden change it can be easy for people to judge you on a "well you were fine before" basis, but keep gathering all of your strength to advocate for yourself. It's really hard when your parents won't accept it because they don't know how to behave around or treat disabled people.

I'll hold my hand up and say the first time I had contact with someone in a wheelchair I was actually 16, and I didn't know what the etiquette was, know why she was in a wheelchair, what her capacity was and it made me behave really weirdly around her. Then she talked to me, and it's like this balloon popped, all this overwhelm I'd felt disappeared, and we became really good friends and she didn't mind me asking a million questions about wheelchairs, wheelchair users, what their challenges were, what she loved to do for fun etc. I imagine the feeling I had before she talked to me is what a lot of older people who have been forced into a society where segregation was normal do because 16 years is a really long time where disability isn't normalised. But for them that bubble of overwhelm and confusion just gets bigger and bigger and everybody is scared to pop it incase it let's off a really loud bang.

If I didn't have an understanding mum, but I still had a loving mum, I would probably still use things like disability aids such as ear defenders etc. Round her, and if she asked why I'd just say something like "oh the doctors have said it'll help reduce my tinnitus/stop me getting migraines so I'm giving it a try". That way it's not a lie, but it isn't outwardly othering yourself.