figuring out who i am

Congratulations on your diagnosis. Take your time and let the information settle in. It will be a while before you begin to see how everything fits together as neurodiversity is different for everyone. It's been a couple of years since I was diagnosed and I'm only really just starting to change what I need to.

Behaviour wise, I finally understand why travel, loud places and changes to my food and sleep routeen could leave me utterly wrecked for several days. I can manage change, but I need way more down time afterwards to recover and get back to a state of normal. I've also learned about neurodivergent burnout and the importance of self care.

It's not easy to tell people about this, so let yourself come to terms with it first. Learn about it and what it means so you have the words to explain it. Frequently, saying "I'm autistic" doesn't cover the whole story and can lead to questions like: "So you can calculate stuff really fast?" Which isn't accurate. Finding the words first can be helpful and gives you the chance to get used to the idea which can reduce the anxiety.

In terms of telling my friends and family, I can offer a couple of tips from my experience. The first is be aware that the older people in your life may not be keen on you telling anyone. It's still within living memory that being diagnosed with autism meant you would not be able to have a job, that you couldn't hope for a stable life, etc. When I told my parents, they were desperate for me to not tell anyone, least of all workplaces, that I am autistic. They were sure I would never have a job again and would suffer. They actually told me to keep masking. Even though the masking had lead to such bad burnout that I couldn't function for 6 months. I had to explain that under the Equalities Act, no workplace could behave like that. In fact, most places want to know up front if you need help and I have no problem telling them that I'm neurodiverse. Any place that won't hire because I have these traits isn't a place I want to work for anyway.

We're better now, but it's taken me a few tries to explain what the situation is because they haven't had any awareness of neurodiversity as anything other than a very bad thing for the person who has it. But when I got a much better job than the one I ended up burnt out from and moved forward with my life, they started to relax. They're learning now. Although my father is still adamant that he is in no way autistic as he insists that the washing and iron have be done a certain way and we don't do it right. But that could be because of his prized football shirt collection. ;)

I think the biggest challenge for me when I was diagnosed and told my friends and family, was getting them to understand I wasn't going to be a people pleaser any more. Or at least reduce how much time and energy I had to give. Before I was diagnosed, if someone I cared for needed something, I was there. It didn't matter how tired I was or how badly I wanted to rest, it didn't matter if my feelings were hurt by what they needed me to do, I helped or did what they wanted to do. An example would be how one of my friends always wanted to go shopping in large shopping centres on Saturdays. I'm the only person she knows who has a car and she didn't want to carry her items back on the train. I get overstimulated in such places, I know that now. After my diagnosis, I explained to her that I wanted to tone down the shopping and do other things, but my suggestions for activities were viewed as dull or not much fun. She can't go out much during the week so I do understand why she suggested shopping and I enjoy shopping when I have the energy to go. But it still took her a very long time to stop trying to get me to go shopping with her when I'd explained that I needed down time. She used the activity as a means to tempt me into going even when I was so tired I felt unwell. Now we'll do things like read or craft at one of our homes and she loves it. She's enjoying the quiet, simple pleasures of just spending time doing small things we love and asks for that more than anything else.

You may find that people you know expect you to stay the same and in some ways, you will. But one thing the diagnosis gives you is the chance to learn about who you are. As you learn to care for yourself and stop trying to imitate a neurotypical, you'll change and that can leave people confused when you were always willing to do things before. The ones who care will stick with you and you can find new things to do and rediscover old joys. Good luck.

Hi HMN  great news on your diagnosis and I hope it’s given you some clarity and that you definitely are a unique person. Here are some of my autism experiences that I’ve learnt to put a name to. I was diagnosed 4 months ago so I’m still looking back on life piecing things together:

Monotropism: I’m unable to start a task and not finish it. Even basic things like cleaning, all the way up to decorating a house. I will push myself constantly until it’s finished which means I lose sleep, don’t eat properly or function in basic ways and neglect those around me

Communication differences: I’m unable to tell what people are feeling or thinking. Unless you spell it out, I won’t assume or know. Unable to be in a group chat, can’t keep up, make eye contact or not be self conscious. I need clear language and small talk gives me the ick.I struggle with keeping friends as they become too much. 

Echolalia: repeating tasks or word in your head. Mine come from paragraphs in books or song lyrics 

Sensory overload: Even someone scrolling a phone sends me into a spin. Clothing, lights, music, smells. Anything that has landed in my environment that I havnt invited in basically.

Meltdowns and shutdowns: Both caused by the same thing but look different on the outside.

Stimming: I used to have facial stims as a child, but now mine more look like finger and foot tapping and internal stimming such as songs, books and sentences on repeat 

Social differences: The cost of socialising for me far outweighs the desire to do it. Even with family. I’m finding I’m now unable to mask and it’s not getting a good reaction from those around me. 

Executive function: Sometimes starting a task like getting a shower or walking the dog is difficult but when my brain has locked in im Not stopping no matter what.

 Special interests: Mine differ from one week to the next but I love gathering information. 

I hope this has helped and welcome to the group. I’ve found it very informative, welcoming and generally affirming as like minded people are all in one place

Hi and welcome!

HMN said:

if anyone has had any autism-related experiences (like certain behaviours or actions of yours happened because you are autistic) that they wouldn't mind sharing,

There's nothing in my adult life that surprises me, from my addiction to spreadsheets and thorough research to bluntness that cost me promotions. What really amazed me was the light it shone on something from my childhood I've never really thought about until I started looking at the screening questions about communication. I remember having 'speech training' for three years in one of my primary schools. One of my close freinds though I meant elocultion lessons (and so did my assessor at first) when I mentioned it, but it wasn't an add-on ater school; I was pulled out of lessons on Wednesdays to attend the on-site health centre. My mum always said it was because my Blackpool accent was too broad, but that was absurd when I thought about it, because none of my family had broad accents and we moved to London when I was 3. I was 7 by the time I went to the primary school that sent me for 'training' that must have been therapy. It made me really curious to know what problem I had that they wanted to address, but it was so far back in time that the education records would have been destroyed.

I realise that specific example won't be of help, but I mention it because it's representative of events that make us stop and think "Oh!" when we review our lives in terms of our autism. 

HMN said:

I'm also trying to figure out how to non-awkwardly (and hopefully not very anxiety-ridden) tell my friends about my diagnosis. I don't want them to think of or treat me differently but I do want them to know at some point.

I've only told four people - two autistic friends, one really close friend with ADHD and one other. The other took it without comment and hasn't spoken about it again, but she hasn't treated me differently, either. That might be because I haven't behaved differently, up to now. I probably will at times in the future, because it gives me an explanation why I can't invite more than a couple of friends to my house at a time.

I haven't yet worked out how to tell my neighbours why I don't always communicate fluently (social chit-chat or if one rings my doorbell unexpectedly to ask a favour).

Hi HMN, 

Congratulations upon your very recent assessment. 

I was assessed earlier this year and only my partner, my doctor and the National Health Service know. So, on a need-to-know basis.

Personally I have been no hurry to tell anyone else. I suppose this is for a few reasons:

Firstly, you can never tell quite what attitude/stance anyone has about autism, even family.
Secondly, I can well imagine certain people saying something like "Oh, I have known that for ages" possibly with "but I didn't like to say anything" - which would really annoy me. 
Finally, whilst I do generally go along with what most qualified autism experts say, I am still not at all convinced that "autism unmasking is the right thing to do".

I am an elderly person, so any unmasking is not that important and I have coped with masking all my life, if badly. 

If I was you, which I am not, I would just take your time – the time will cost nothing!

Best wishes,
Oscar  

Only you can know when it's right to share.  My diagnosis is recent as well, and I have told almost no one so far, not because I fear the reaction but rather because I am taking the time to adjust in my own mind to the confirmed reality.  No doubt I will share beyond close family in due course, but that's for a future me to decide, and likewise you will do the same when you are ready.

Good luck, and remember that you are fabulously YOU!  

I have always been described as quirky, and I have often felt like an extra in friendships, never the main person. I also don’t have any friends from years ago, and I never knew why. So I get the feeling weird thing, moving funny, overthinking what I say. And regarding sharing my diagnosis… anyone who knows me well enough knows I struggle with loud noises, strong smells, bright lights, I don’t do crowds, loud groups. So they were already used to me avoiding those situations or wearing earplugs for example. No one I have told has been surprised, just said something along the lines of ‘thank you for telling me’ and no one has been surprised. Some people asked me about the assessment process, some people asked me why I needed a diagnosis, but everyone has accepted me as I am ️ 

hiHMN and welcome.

I think I always felt weird too and could never explain why I didn't seem to fit in anywhere, so my autism diagnosis really explained a lot and helped me to feel less of a failure at life. I only told my close family to start with and that was only after I’d sort of started to accept the diagnosis myself. Just take your time and be gentle with yourself, a diagnosis is a lot to take in and tell people when you feel comfortable.

Wishing you well and take care.

Hi HMN,

At the age of 42, Ibhave just gone through the same. I completely understand. I was sent some very good information which has helped me figure out my strong a weak points. 

My friends were intruiged and asked me lots of questions. The way I explained it was that it doesn't change me as a person but I need to make sure I take a bit more care of myself so not to have a burn out. I explained about the battery theory and that different things drain more of my battery compared to someone who isn't neurodiverse. I also explained about masking and say that if I find things overwhelming I may react in [this] way because masking uses a lot of my battery up and sometimes I may not want to mask as much. I also said that it may take some time for me to know who I am, so bear with me. 

I hope that helps. I woupd love to know how you get on if you do choose to tell people.  

Best wishes x

Dear HMN, 

Congratulations on your diagnosis. We are very pleased to have you here. We have Advice and Guidance pages which may be able to support you going forward. You can find the link at the top of the page or here Advice and Guidance. Please select the topics which interest you. 

But to start with here is a section about telling family and friends. Please find the link here:

Talking and disclosing your Autism Diagnosis

With best wishes, 

Anna Mod