Autism diagnosis. Has anyone thought they were autistic and assessment has said it's not autism?

[adultasd]

I've not phrased that well, sorry.
I'm awaiting assessment but am wondering what happens if assessment says someone isn't autistic. What are the potential differential diagnoses? I'm 45 and have learnt to respond

Sorry, pressed post by accident.
I've learnt to respond in ways that are deemed socially acceptable except in my immediate family. I'm classed as weird and difficult and awkward by wider family. I struggle with so many things but just have to get on with them because I'm a single parent with no help. Then it all gets too much and I'll need lots of early nights and quiet time to myself. People are perplexing, I don't have friends really, and not do I want them. I like books and being outdoors rather than people.

I'm worried assessment will show I'm not autistic and I'll be no clearer on why I'm like I am.

Maybe I'm just wired wrong.

I had this exact worry.

What I did was explain my thought processors to my assessor e.g. I cope in X scenario by using A,B and C coping mechanism. Underneath I feel Y and if I had my way I would not engage in this scenario at all or I would change it in someway e.g. more understanding from other person.

I was SO scared it wasn’t going to be autism but the above tactic clearly worked because at the end of the assessment he declared me a “clear cut case”. I also explained to him that I thought other members of my family were neurodiverse and therefore saw my behaviour as normal, hence it didn’t get noticed until adulthood- he understood and said this is very common.

My best advice would be to sit down and write down lots of examples/memories/scenarios of what you believe is you autistic behaviour and then take it with you in case you need a prompt.

Thank you. My assessment isn't going to be for at least a year yet so I could probably write a book in that time if I had the attention span to stick at things.

What does the assessment involve? I meant to put that in my OP.

Bumping for the morning

It could be ADHD
Personality disorder
Bipolar disorder
Social/generalised anxiety
ODC
PTSD

What are your symptoms if you don’t mind sharing? I am diagnosed as autistic as of last year (at the age of 39)

I suspect my DD would be the same as you if she went for an autism test. I have a son with ASD and to my mind DD has it too but she is completely adept at masking. It has only been the constant stream of social confusion questions she has asked me as friendships have started to get more complex that have me more and more convinced albeit she has had many other traits over the years and she is dyslexic and dyspraxic so on that bases is not neurotypical. I think if she were to express her confusion rather than her masking to autism assessors that would more likely lead to a diagnosis but I wouldn’t be fully sure.

I understand your worry OP! I have just had an assessment for ADHD where I was judged not to have it. Apart from the fact I paid a lot of money I found it upsetting because it feels like years of very difficult experiences have been invalidated (I am 58).

I think it very much depends who is doing your assessment and I think if you really feel like you do have the condition and you really want a diagnosis it is well worth making sure you get one by answering all of the questions correctly! I know that sounds odd, but that's the way it is. It's not based on a blood test or a scan but on reported behaviour and interpretation of that behaviour. Another issue for ADHD is that the doctor has to establish whether the condition has been present from childhood and other people notice it. Both DH and my mother reported on the forms that I had had no difficulties at all, which is plainly not the case. I think DH was embarrassed about having a wife with a 'condition' and my mother thought it might reflect badly on her. So they both covered it up at the screening.

I am 99% certain DH has autism but he refuses to do an assessment. He has done one online and showed me that results which say he does not have it. This is because he knows full well what the 'correct' answers are. He's not stupid! For example, he says he enjoys parties, which he absolutely does not!

Trauma.
My fabulous therapist said 'These symptoms could come from your childhood trauma.'
I was ready for her! Toe-walking. I'm the first of three generations of women in my family who walk on tiptoe. We know who we are.

Before going to assessment, I made a timeline of my life, noting all the examples I could remember of autistic presentation. It filled in the years while I waited for my appointment. Evidence to support my assertion.

'Masking' is very common in autistic people, particularly girls. A lot of the more verbal, academically able girls I've worked with are good at what we sometimes call imitiating meaningful behaviour. Basically, lots of the little socially important rituals that neurological people learn and engage in, these girls become proficient at copying, but when you dig into it a little with them, it's clear that they don't really understand why they do it, beyond it being something other people do or expect. It helps them to avoid judgement and frustration, and can make them feel like they're fitting in - a lot of the girls I work with are frustrated by their challenges and differences, though you may not feel that way. I would expect anyone carrying out an autism assessment to have a thorough understanding of the ways neurodivergent people learn to cope and compensate.

Differential diagnoses may include ADHD, personality disorders, anxiety disorders, mood disorders. A friend of mine was diagnosed with all of these at one point or another, before seeing a specialist who told her she was autistic in her late 20s.

Definitely make some notes between now and then if you feel able, about things you feel its important to share, and the coping mechanisms you've developed. I'm not involved in the assessment part, so I'm afraid I can't give you any information about that but I wish you luck with it all.

Thank you for the replies. I'll try to outline the main things.

As a child I would hide at my own birthday party. In fact I think I only had one. Other birthdays were just with one friend.

I cannot open gifts in front of the giver or other people. I really wish I could be normal about this but I just can't. I was always like this and my parents would be asked what was wrong with me.

I had/have no friends beyond superficial friendships except for the odd best friend who would be the focus of my universe until we fell out.

I don't like social occasions and avoid them like the plague. School mums drinks night or a meal is my idea of hell. Too many things to have to navigate there in terms of who to talk to and when, what to say, who to look at, turn taking in conversations, saying the right things.

I get overwhelmed by noise and light. I wear sunglasses all year round even in the rain. I have misophonia. As a child I had issues with polo necks and sock and tight seams. Now I can avoid those. Textures too are a big thing. I can't bear to touch certain things or sometimes even look at them.

History of eating disorders and still very much funny about food and eating in general. I can't eat in restaurants without huge anxiety because of the noise and the lack of control over what might be in my food and hygiene practices. I'm a strict vegetarian.

Black and white thinking especially around rules. Covid has been a nightmare for me where people haven't stuck to guidelines and rules. I try really hard to be more flexible in how I think but it is very difficult.

I don't like eye contact. I can do it. But I don't like it. I'm ok looking at someone who is talking but prefer to look away. If I am talking I can't give eye contact. It's too intense and feels very uncomfortable. Eye contact issues has led to people accusing me of lying, not paying attention etc.

My mind is never still. It's like a kaleidoscope but I wouldn't be able to articulate what I was thinking very well as my mind moves on so fast or the thoughts don't really have words.

I prefer books and cats to people. I'd like to like people but they are too tricky and unpredictable. I look at groups of mum friends and have often wished I could be part of they'd group and belong but now I've accepted that that isn't me. I've never fitted in. I've always been different and awkward and weird. I'm ok with that now.

If I do socialise I need quiet time afterwards and tend to retreat from everything. It all gets a bit much.

Travelling on trains and buses is a nightmare for me due to noise, smells, lights. People in general. I have spent many journeys between carriages to escape the noise.

I worry so much about saying something that isn't quite right that I give lots of detail to avoid any misconceptions.

I need things to be very clear regarding instructions on things like essays as otherwise I struggle to know what's expected of me.

I stim. Various things like constantly striking my foot against the sofa cushion it my bed sheets. Wriggling my nose. Picking at my skin. I listen to the same song on repeat until I get fed up if it and move on to the next obsession. I have a song of the week I definitely both seek and avoid stimuli.

I've been a bit of a plane spotter since I was about 5. My idea of a good time is going to the airport and watching the planes. I'd rather do that than say the cinema or bowling or a meal or shopping.

I'm told I can appear rude when I think I'm being polite. Diplomacy is not my thing at all. Dd is the same. It gets us in trouble.

I can't lie. Well, I can but it makes me extremely uncomfortable and would be a last resort for me. I can't bear any one lying. The truth is very important and things need to be factual and definite. No maybes. Yes or no. I don't like change unless it's at my instigation.

My dad was highly intelligent and probably on the spectrum. My mum is probably dyspraxic. Both ds's have many autistic and adhd (inattentive) traits and I'm seeing traits in ds too.

I do get anxious sometimes but it's fleeting and I don't get depressed or have manic episodes. I do have some compulsions but not so anyone would notice.

I tried for decades to try and fit in and appear normal but I've accepted now that I am happy to be weird and different and don't need the approval of others. Occasionally I wish I was normal but it's rare now.

Oh, and I'm a dreadful oversharer as you can probably tell

It sounds very likely that you will be diagnosed as autistic. I was diagnosed in my late thirties. The psychologist who assessed me understood masking very well.

@adultasd
Welcome. You're one of us!

Yeah I'd be amazed if you don't get diagnosed 😂 you sound alot like me. I was also surprised at the things he said were autisitic that I'd never associated before. You'll be fine. The guy that assessed me was fantastic.

Really? I have tears in my eyes at feeling some weird sense of solidarity. Thank you. It was a uni friend who years ago had a diagnosis and suggested I was the same as we got each other. She suggested dd was very much her mothers daughter too. Dd is very obvious to me in her struggles but I'm finding it impossible to get her help. I've always put my issues down to me just being weird about stuff and fear that I'll just be dismissed as weird or anxious. Reading up on ASD and ADHD (inattentive type) was like a Christmas light switch on in my head. My mum feels dreadful that no one realised but ASD in girls wasn't understood at all back then and I presented as normal but difficult I suppose. I have a decent brain, achieved well but could have done much better than I did. I was a school refuser to the detriment of my education. I'm great in a very structured and quiet environment with a strict uniform policy. Those type of boundaries help my brain stay contained. Uni was a free for all and I sought the regimen of anorexia in place of any outside rules and regulations.

If I were assessing you it would be a big fat yes, not that that I’d much use to you 🤣🤣

I'm a clinician who contributes to asd assessments - the most common cross diagnoses in my experience are trauma and adhd. In children's services there is a tool called the Coventry Grid to look at the cross over of symptomology, which you could good to give an idea.

That said, it is also classic for women and girls not to have their asd recognised as asd can present quite differently. So I would want to check your assessment team had experience in the differences for woman with asd.

Only a fellow autist would have written all that out: request for 'symptoms', cannot do anything other than a comprehensive list with additional explanation of every point. :-)

I was diagnosed last year, in my early 40s. You sound a LOT like me.

I sometimes go back and forth between wanting to be checked myself, I am very similar. Literally could have written what you wrote myself. What I want to ask, is are there any benefits of getting diagnosed? I know it validates our experiences and that is reason alone, but are there any other benefits?

Diagnosis for me would be validating and also provide some allowances in a work environment. My mum will tell my estranged family and they might for a brief moment reflect on their shitty treatment of me and my difficulties. I wouldn't get to know about it but maybe I want them to know I've not been deliberately awkward just to piss them off. Mainly though it would be for me. To better understand myself and make allowances for myself instead of giving myself such a hard time when I fail at things.

With those symptoms you’re very likely to be diagnosed. Especially the stimming and sensory discomfort.

Women with ASD are good with hiding. Also men. DP is autistic and most outsiders don’t believe it as he was diagnosed as a child and masks well now. But when he’s with me it becomes blatantly obvious.

*also some men!

Oh and I don't like being touched. Covid has had its good points there. I get all touched out and get irritable when I feel crowded by people wanting to hug me or sit next to me. I like my space. I love hugging dc especially the youngest as he's so squishy and little still. Dcs fine-anyone else weird and awkward. I get told I'm cold and distant.

The thing is to us, this is normal as is who we are so we might not see ourselves as different in adulthood, especially if not working at an office or other place with others we have to interact with. I'm a single SAHM at the moment so my interactions are limited to mumsnet mainly and there's so much weird on here

Gosh this sounds like me. I'm not diagnosed but pretty sure I am on the spectrum. I think getting a diagnosis would help me massively in a lot of ways but the thought process of getting to that stage is too difficult. I wouldn't know where to start.

Oh my god op. A thousand light bulbs have just gone off here. I am 51 and relate hard to your list. Blimey!