I was diagnosed autistic as an adult. AMA

[Megmargs]

I find there can be lots of misconceptions and misunderstandings about autism, so please ask me anything! You won’t offend me!

What led to you being assessed? And thank you for doing this.

Thank you for this thread. It’s timely as a close friend thinks they may be autistic, but it’s never been diagnosed. Does the fact you were diagnosed as an adult help you feel better about any issues you had when younger (if you had any)? Would you recommend pushing for a test as an adult?

Are you glad you got a diagnosis? How have other people responded to you since?

How did you get a diagnosis? Was it a difficult process? Lots of people have told me I may have ASD but I don't think I could face a big fight for a diagnosis.

How have relationships/marriages been ?
Did you have lots of friends as a child/teen ?

Does the diagnosis change much about daily life for you?

^^ Sounds snarky but it isn't meant to be - sincerely curious if it changes your mind set on anything etc.

I think my DD has autistic traits (and me to an extent).
No one at school has ever raised it, she would never engage with a professional.
I'd like to provide input myself as she grows up but don't want to fuck it up.
I think my dad also has autistic traits, he has the ecolalia thing and some other things too.

Did you need to bring someone from your childhood to the assessment confirm the developmental aspects? Have thought about pursuing a diagnosis but the thought of this really puts me off as my parents are not the most understanding

Hi OP, I was also diagnosed as an adult
Just wanted to ask: Do you work - if so what industry/role? Do you think having ASD has affected your career?

@oldbagface

What led to you being assessed? And thank you for doing this.

The turning point was when I was browsing YouTube and came across a video relating to autistic traits in adult females. The girl mentioned something about how she can socialise, have an amazing time, then when she gets home she will be completely overwhelmed. A year prior I had gone out to the theatre with a couple of friends, chatted for a while afterwards, had a wonderful time but when I got home I burst into tears and remembered wondering what on Earth was going on, and feeling completely overwhelmed. It was just a lightbulb moment that led me to researching more about it.

@Purplecatshopaholic

Thank you for this thread. It’s timely as a close friend thinks they may be autistic, but it’s never been diagnosed. Does the fact you were diagnosed as an adult help you feel better about any issues you had when younger (if you had any)? Would you recommend pushing for a test as an adult?

I didn’t really have any issues when I was younger. I definitely fall within the diagnostic criteria of it becoming “more obvious” as demands outweigh capacity as I’ve grown older.

As an adult, my diagnosis is definitely helpful (up to a point). I no longer feel like I’m just a crap adult, or lazy, or beat myself up wondering why the hell I find things so difficult when other people just seem to do them. It’s still frustrating, and absolutely nothing is any easier, but I can now allow myself to have a bit of a break and I understand myself better. I’m also trying to find new ways of doing things when the standard ways just don’t work for me.
As for your friend, I would ask what would be the purpose of diagnosis? Personally, I wanted confirmation as I didn’t feel confident telling people I was autistic without a formal diagnosis, and I also needed some adjustments at work which I needed the diagnosis for. If your friend is confident to self-diagnose and doesn’t need anything else from it, then I definitely think self-diagnosis is valid as it’s definitely a luxury or a hell of a waiting game to be formally diagnosed.

@Bemystarlord

Are you glad you got a diagnosis? How have other people responded to you since?

Yes. I have mental health issues and it’s given an explanation for all my difficulties. It hasn’t made anything easier, but I’m trying not to beat myself up about certain things any more. It has allowed me to have some adjustments at work, and although it’s still HARD I don’t think I would even be in work right now if something hadn’t changed.

As for other people, I’m careful about who I tell. My family knows and although there was initial “everybody’s a bit autistic” type comments, I’m incredibly lucky that they are all very willing to learn and adapt and support me. At work I’ve only told the people who need to know for adjustment purposes, and those who have a good understanding of autism. I do feel that because I’m very good at the social side of things (which I’ve had to learn to do and is exhausting), most people would think it wasn’t true or I was just being lazy or other nonsense because they only see the very controlled exterior and not the absolute chaos within 😂

@Mutabilis

How did you get a diagnosis? Was it a difficult process? Lots of people have told me I may have ASD but I don't think I could face a big fight for a diagnosis.

I’m very fortunate in that family members funded a private diagnosis. I was at a terrible place regarding my mental health, and there is a three year waiting list for an NHS assessment. I don’t think I would have made it to be honest. If you can afford it or save up, I would recommend private. It was a quick and low(er) stress process, and I could choose a place where I knew they have a good understanding of how autism presents in females as it can be difficult to diagnose.

@FippertyGibbett

How have relationships/marriages been ? Did you have lots of friends as a child/teen ?

Most of my romantic relationships have been terrible. I’ve been taken advantage of, lied to and got stuck in a four year abusive relationship because I just didn’t see it. Abusive relationships happen anyway because the abusers are extremely good at the whole abuse and apology cycle, making them the centre of your world etc, but I do wonder if I wasn’t autistic whether I might have spotted it better/got out sooner/had friends to tell me something isn’t right. I was lucky that it had an end and my family stuck by me even during the rifts he created. It’s very common for autistic women to be in abusive relationships and it’s probably more likely that they don’t have the wider social circles of support. We tend to trust people and believe what they say, even when their actions don’t match. We just get confused.

@FippertyGibbett

How have relationships/marriages been ? Did you have lots of friends as a child/teen ?

Forgot to reply to the second part! As a child I was happy with my friendships, I had one best friend from a hobby we shared and some friends at school. I went to the same secondary as my primary school friends so didn’t have to navigate making new ones. We were all a bit nerdy and odd so again, I was very fortunate just by circumstance. I do remember not really understanding when my childhood best friend (who I didn’t go to school with and was a year older) started drifting apart from me when she started high school. When I went to uni I made friends but none of them have lasted. I now don’t really have any friends (I say “really” because I have two work friends but I don’t see anybody apart from family outside of work).

When I went for my assessment my mum did say she was concerned that I didn’t have many friends as a child, but I was completely oblivious because I was perfectly happy with my one or two.

@SionnachRua

Does the diagnosis change much about daily life for you?

^^ Sounds snarky but it isn't meant to be - sincerely curious if it changes your mind set on anything etc.

I suppose it depends what exactly you’re asking - does it change compared to before I was diagnosed, or does it change compared to neurotypical people?

Before and after diagnosis I’ve mentioned with my other responses, mostly about trying not to give myself a hard time, understanding myself and having work adjustments. But to be honest, not really. Every day is still a huge struggle and I am completely exhausted.

If you meant compared to neurotypical people, I don’t know! I certainly seem to find every day things more difficult, but I have no concept of what it’s like to be neurotypical (NT) just as NT people have no concept of what it’s like to be autistic! I can go more into my difficulties if anyone is interested.

And don’t worry, I didn’t read it as snarky 😊

@IdblowJonSnow

I think my DD has autistic traits (and me to an extent). No one at school has ever raised it, she would never engage with a professional. I'd like to provide input myself as she grows up but don't want to fuck it up. I think my dad also has autistic traits, he has the ecolalia thing and some other things too.

There can be a genetic link so it’s possible. It’s common for autistic children to present very differently between school and home. One may have concerns where the other doesn’t, or in my case the circumstances in which we grow up can be perfectly suited to our needs (now I realise it’s due to my dad being autistic though he’s undiagnosed) and nobody picks up on it until adulthood.

I’m not sure what you mean when you say about providing input - if you clarify I might be able to help in some way if there’s anything you’d like to know.

@riotlady

Did you need to bring someone from your childhood to the assessment confirm the developmental aspects? Have thought about pursuing a diagnosis but the thought of this really puts me off as my parents are not the most understanding

It wasn’t necessary, but I took my mum. My dad was adamant there wasn’t anything “wrong” (he’s totally autistic but undiagnosed, but I guess it felt a bit close to home and he sees these things as “labels” and as a negative). Before my appointment I was sent a questionnaire to complete which had questions about my childhood. It suggested it would be helpful to get input from people who knew me as a child but again, it wasn’t necessary. I do know of people who have been diagnosed without information from anybody else, and of course there will be people seeking diagnosis for whom it just isn’t an option. Please don’t let it put you off if you wish to seek a diagnosis.

I suppose it depends what exactly you’re asking - does it change compared to before I was diagnosed, or does it change compared to neurotypical people?

That's a fair point, I should have made it clearer. I guess I was wondering if it changed anything about daily life for you personally.

Thinking about kids I teach I know getting diagnosed changed a lot about life for them, particularly school. It removed a lot of frustration and feeling stupid/unable to do something. Mostly thinking of dyslexics there but maybe the same applies?

I think you have kind of answered this question already so not expecting a reply but wanted to clarify...glad you understood the intent in my first question

@noseresearch

Hi OP, I was also diagnosed as an adult Just wanted to ask: Do you work - if so what industry/role? Do you think having ASD has affected your career?

I work in primary education, and it has definitely affected my career. I was only diagnosed this year so I’m only just now in employment knowing about what my own needs are. I used to teach, completely burnt out. Thought the teaching was the issue, became a teaching assistant and burnt out due to a mismatch in communication needs/styles between me and teacher. My role is now still teaching assistant but in a different role to being class based to try and meet some of my needs (they said they couldn’t accommodate me if I wanted to remain in a class). The role is still incredibly unsuitable but I’m pretty trapped between needing to earn enough to cover my living expenses, being able to work in a job that has meaning and purpose to me (I am not good at self-motivating if I don’t “see the point”) and there being nowhere else to go due to the pandemic. I genuinely don’t know what I’m going to do long-term, I just know I’m too exhausted to keep doing this for the rest of my life. I think part time is the realistic option but can’t afford that right now.

@SionnachRua

I suppose it depends what exactly you’re asking - does it change compared to before I was diagnosed, or does it change compared to neurotypical people?

That's a fair point, I should have made it clearer. I guess I was wondering if it changed anything about daily life for you personally.

Thinking about kids I teach I know getting diagnosed changed a lot about life for them, particularly school. It removed a lot of frustration and feeling stupid/unable to do something. Mostly thinking of dyslexics there but maybe the same applies?

I think you have kind of answered this question already so not expecting a reply but wanted to clarify...glad you understood the intent in my first question

I still have some feelings of frustration and stupidity and general uselessness, but I try to challenge my own negative thoughts if I notice I’m feeling that way. The diagnosis gave me a way to challenge them effectively. It’s also allowed me to start asking for help from family and understanding colleagues. I NEVER asked for help before because I was embarrassed about finding certain things difficult. I’m still reluctant to ask for help unless I reeeally need it, but now it actually happens sometimes whereas before I just sank lower and lower until I was completely unable to function.

Apologies for the huge wall of green...I needed to finish replying to people’s posts before I could take a break 🙈

I'm the same, was diagnosed last year age 53, had struggled all my life with friendships, communicating, relationships, was bullied at school, didn't do as well as I could have done in exams etc & have had mental health problems ever since I was a teenager.

We are living with my mum as I have been very ill & she still doesn't understand how much I struggle due to autism, how tiring I find simple things like having a conversation & why I often disappear to my room because I get so frustrated with her & don't want to end up having a meltdown because I don't want her to see how bad i am when I have one, I have ended up banging my head against a concrete wall & punching myself in the face before now in the middle of a meltdown & I don't want things to escalate that far again so I take myself off to calm down.

Do you have any general advice on how I can support my 6 year old, who has just been diagnosed.
I’m sorry you’re finding life difficult still and I hope things improve for you when we’re out of this pandemic.

Thanks for answering my question, it is helpful to know that the NHS process is so long. That is what I suspected. I can't afford to go private but I think I'm happy to make my own adjustments for myself, for me it's mostly self acceptance. I already have workplace adjustments for dyslexia which cover a lot of my difficulties. If you don't mind answering another question, do you consider yourself to be imaginative? It's where I feel maybe I don't have autism as I've always lived in a bit of an imaginary world, and had imaginary friends (instead of real ones), so I thought I couldn't have autism but I've recently read a few autobiographies of autistic women who are similarly imaginative. My imagination is limited in other ways though- I fall to pieces if my train is replaced by a bus for example, unless I've planned in advance I just can't think what to do.