Would you seek an assessment for autism?

[Oruguita]

Long story short - I think I am autistic. I shan’t bore you with all the reasons why as it’s not entirely relevant and let’s face it I’m obviously just going to produce a list of autistic traits.

I am unsure what, if anything, I should do. Most of the time I tell myself I happy enough to just think to myself ‘well, yes, I’m probably autistic’ and that’s that.

I think about the fact I’m married with children, I went to university (albeit later in life), I have a Masters degree, and I have a good career. Contrast that with my son who is autistic but unlikely to achieve any of the things I have and it makes me think even if I am autistic, I can’t complain really.

However, sometimes I just can’t get it out my head and I just really want to know. Am I or aren’t I? That’s where I’m at right now. I have days, sometimes weeks where I can’t function at all. I had to leave work early last week as I couldn’t stop crying, I’ve been in bed ever since. I’m fortunate that my husband is extremely supportive and puts up with me.

When I feel like this I think having a diagnosis or an explanation would help me.

Have a look at these threads OP, I think they could be helpful on the whether to proceed with an assessment question.
www.mumsnet.com/Talk/mumsnetters_with_sn

and this one's very informative.
www.mumsnet.com/Talk/AMA/4392160-i-m-an-autistic-adult-ama?pg=1

Hi OP, it sounds to me like you already know you're autistic, it's just whether you're ready / prepared to have it confirmed.

There are lots of autistic adults on twitter (try #ActuallyAutistic and a search) who talk about self - identifying / self-diagnosis and lots with a diagnosis who talk about how beneficial the diagnosis has been for them. And of course it could help you get accommodations at work if you need them.

Pete Wharmby and Ann Memmott are particularly brilliant. Pete got his diagnosis a few years ago.

Also, and sorry if you know about all this already but those times when you just need to stop for a few days may be autistic shutdown (or frankly burn-out). Ann Memmott writes about spoon theory and shutdowns on her blog and there's lots of other brilliant stuff on there too:

annsautism.blogspot.com/2018/02/autism-and-spoon-theory.html?m=1

Whatever you decide to do, all the best OP

I recently got diagnosed with ADHD and I’m so, so glad I did.

If you feel it would help then I would say go for it.

Thanks @BlankTimes very interesting threads.

Thanks @halesie I’ll check out Twitter too. I did used to follow some autistic adults on Twitter after a therapist I was seeing suggested I seek a diagnosis. I found it all a bit much though and had to step away. Sometimes it’s just easier not to think about it.

My main concern is my family. Mum thinks I’m absolutely 100% neurotypical - the least autistic person she knows. My understanding is you need to take a parent with you for an assessment? Might make the whole thing pointless.
(Worth pointing out she also initially thought there was no way my child was autistic, which then changed to if they are it’s very very mild autism. And is now who would’ve guessed they’d turn out to be so very autistic).

Also, I’m unsure whether to look into a private assessment or NHS. NHS is a long wait. Are private assessments accepted by for example your GP or work place?

Benefits of knowing would be maybe more understanding from my workplace? I’ve only been working a few months. I’m finding it overwhelming. One of the aspects I struggle with is last minute changes to my work area. I work in one section but occasionally, like if there are staff absences I get moved to a different section with no notice. It keeps me awake at night worrying if I’m gonna get moved about the next day. I know that’s ridiculous but I feel so anxious about it. I thought maybe if I am autistic then work might move me about less?

If it puts your mind at rest I would seek to obtain diagnosis.
We have 2 sons on the spectrum, I gave my career up to pursue every path from education to social life for them due to the local authorities and their lack of support (penny pinching) and probably am on the spectrum myself which would explain a lot- I don't feel the need to get a formal diagnosis for myself at this moment in time as there are too many things going on although it would be interesting to know purely out of curiosity. Good luck and let us know what path you do choose for diagnosis. We have 1 private 1 nhs for boys.

Diagnosed at 24 after struggling in the workplace.

Completely and utterly changed my life. I stopped blaming myself for so many apparent deficits and couldn’t believe the amount of “space” in my head when I stopped constantly criticising myself.

Got some reasonable adjustments at work. Again, game changer, I moved from someone who was just about hanging on to being a top performer and getting promoted, simply because my needs were being met. And no, it didn’t cost work much money, most of them were to do with being given reasonable notice over changes like when we moved to the office upstairs or our team merged with another, being allowed to take 10 mins without letting anyone know when feeling anxious etc.

I’m also in the happiest relationship of my life; the diagnosis helps us both understand me, he’s able to help me when I’m struggling and we talk about our communication differences. I recognise the crash you are feeling now- I have them too, just rest up.

I am happy and confident in myself as an autistic woman. I wasn’t either of those things before diagnosis.

Oh and I have the same issue regarding parents not believing me. I told the assessor I didn’t have a healthy relationship with my parents and therefore they wouldn’t be involved. It did help him that I was able to recount several specific memories from childhood that also made me think I was autistic however.

How would you feel if you didn’t meet the threshold for a diagnosis? An ADOS isn’t an absolute it’s just a group of peoples opinions on how well you fit into pre determined criteria. It seems to under diagnosis women but they are trying to resolve that and it’s better than it used to be. Personally I don’t think anyone, even the experts understand Autism enough especially for adult women at the more subtle end of the spectrum of presentation.

I'm on the NHS waiting list, which in ny area is well over 2 years. I won't have any parental input. If they can't assess without, then they can't. I chose not to be added to persue it about 5 years ago but I now think it would be helpful for work. In between my sibling also got diagnosed.

Get diagnosed. You don't need to take your Mum with you, she is no longer relevant to your life.

I think the doubt you feel comes directly from your Mum's refusal to recognised that you have difficulties.

There is a huge difference between being in bed crying and unable to function and knowing that you just need to shut off for a while to be able to carry on.

A diagnosis will help you take care of yourself.

Hope that makes sense

P.S I have two autistic sons and am not autistic at all. The more functional of the two is very bright, goes to mainstream school and outperforms his peers by some way.

He also can't go out socially without huge effort, is on anxiety medication to enable him to function and goes to bed in a dark room for three hours after coming home from school.

We both know he needs that time with no stimulation to enable him to cope so brilliantly well with life.

If it was me I would prefer to know. It means you can’t be discriminated against for your condition and it gives you the legal right to have reasonable adjustments that may help you. Until you have a diagnosis people can freely discriminate because technically you don’t have a disability.

I understand it takes years to get a diagnosis on the NHS though, and a private diagnosis costs thousands of pounds.

I was diagnosed last year in my mid 40s. It's been a revelation. I now understand and accept who I am and am able to articulate to others about my difficulties so I get understanding. It's been life changing. I would definitely advise you to get diagnosed

If you're being kept awake at night worrying about being moved at work then I'd recommend having an honest conversation with your manager. You can tell them that you think you might be mildly autistic but that there are long waiting times for diagnosis so it's not confirmed. I suspect your manager would be really shocked by how much it is affecting you.

Sometimes I think we just need to be more open with each other about our own quirks (we all have them!). I really struggle to think while other people are talking which makes brainstorm-type meetings an absolute nightmare for me. I don't know if this is an autistic trait or what but I'd end up just sitting in silence, totally paralysed by all the chatter. Eventually I fessed up to my team and it made things much easier for me.

Yes im going through same with possible autism and definitely ADHD, my daughter was diagnosed at 2 with autism. My parents are also nightmare but thats because i think they have autism too and dont want to admit it. Im having to save for the assessments as going private if i had money id do it tomorrow. I want to know i can stop blaming myself for my issues i have and have more understanding about myself im gutted i have to save up as not cheap

My main concern is my family. Mum thinks I’m absolutely 100% neurotypical - the least autistic person she knows.

It doesn't matter @Oruguita, it's not your mother's opinion of your possible diagnosis that they're looking for. It's memories of your development and of your interactions as a young child - things that you were either too young to remember or your memories are (naturally) clouded by your condition.

My mother thinks I'm completely neurotypical because she's got exactly the same problems as I have.

I could have written this and had a thread on it a while back. I think it is something I am going to pursue next year.

I was 100% sure I was Autistic for many years before I approached my GP about an assessment. I hadn't felt that I needed an official diagnosis until speaking to an Autistic friend who pointed out that I may need reasonable adjustments made in the future and wouldn't be able to ask for them if I wasn't officially diagnosed.

The waiting list where I am is 5 years, and in my typical Autistic way, once the referral was in, I couldn't stop fixating on being assessed. So I ended up going privately to a local Psychologist. It cost £1200 in total, but it was carried out over 4 appointments (paid separately) and I was told that if he didn't think there was enough reason to proceed to the next appoinment then he would say so.

I didn't have any involvement from anyone else as I am not in contact with one parent and my other parent would think the same way as your mum. I made tons of notes, everything I could remember from childhood and teens that I thought might help... things I'd done, said, felt, been mentioned by others etc. I was concerned that even though I was sure I was Autistic, I would mask too much for the diagnosis, but I needn't have worried... my report is full of little things that I didn't realise I did but were noticed by the two assessors

I thought once diagnosed, nothing would really change, but I've surprised myself in how open I now am about being Autistic and how I don't automatically try to mask all the time. It has been useful in situations like medical appointments, where I used to be discribed as anxious/rude/abrupt... I find once I tell doctors I'm Autistic, they start listening more to what I'm actually telling them.

Sorry, I've ended up writing a much longer post than I planned All in all, I have definitely not regretted getting diagnosed, nor paying what is a huge amount of money for me, to get there quicker... it has given me closure as well.

Retired person who was part of a diagnostic team. We are well aware how difficult some parents of adults can be, there are many who have the hangover from the ‘refrigerator mother’ diagnostic and therefore feel that ‘the authorities’ are trying to blame a dx on their parenting. Just state that your parent refuses to engage and the team won’t pursue it.
Parental input is often not as useful as people and (some) teams think it is. Obviously with 16 and under it is, but older than that, he’ll no!
As for your main point, yes I’d advise following it through, it can make life easier if people are aware, both for you and them. Eg. Your GP. Will be aware that you may need a slightly longer appointment in order to process information you’re being given.
Good luck!

Thank you for all the responses. Good to know I won’t need my mums input. I do have lots of examples of atypical behaviour starting when I was around 2 years old. I don’t remember them all obviously but I know because they have been often recalled by various family members as hilarious anecdotes (although not that funny from my point of view).