Struggling undiagnosed young adult and assessment fear.

add ones u said yes to to your list  a b d f these are all highly significant

Thanks aidie 

so as for those:

a) I definitely have shutdowns where something or a combination of things lead me to just feel like I can’t interact at all and that I just need to be alone. I would also say I have meltdowns caused by the same things. I don’t know if energy or mood is a factor that makes me react in one or the other, but I shutdown more than meltdown.

b) I think I do stim having googled stimming. I pull hairs out my head (particularly when I’m more under strain), i crack my joints, i jig my leg, arranging and rearranging objects, I also have issues with my neck and upper back and I repeatedly stretch/twitch my joints there for no reason which people comment on like they think I’m weird or something but I can’t help it 

c) not aware of any blood relatives with either.

d) yes, the only way is to force myself and it takes a lot of focus.

e) generally no, yes when under pressure or a lot on my mind but mostly no 

f) I’ve been told I’m weird many times. By a sibling and friends all through growing up. Never felt like I fit in and even if I tried I’d still be called weird.

Having looked up a list of stims I have now discovered I have been stimming since childhood.

Nail biting / foot wiggling / rubbing feet together & toes together / biting my fingers (rare for me but bad when it happens)

Thanks for the suggestion aidie

that is a very good list i have some others just to see if u have them

a. do u have autistic shutdowns or meltdowns ?

b. do u stim at all ( look up a list of stims they can be quite a surprise ) ?

c  does any of ur blood relative have autism or ADHD ?

d. do u find it hard to maintain eye contact ?

e. would u consider yourself clumsy ?

f. have u ever been called autistic or weird of different (by who and when) ?

ok so I had a go at making a list of my characteristics. I think I’m better at some things than others but here’s my list at the moment:

• Very anxious in social scenarios and avoid social contact where possible
• Struggle to make conversation and keep it going
• Find it difficult to make friends and maintain friendships. My friendships usually have required the other person to be persistent/understanding. Additionally I get very nervous and anxious when seeing family members I have known all my life and seen many times.
• Enjoy being on my own
• Don’t cope well with changes or changes to routine
• Have to carefully plan things before I do them, even more so when I do not ordinarily have to do the task/event
• Always have a plan/script in my mind before going into a scenario and get thrown when the other person/thing doesn’t follow the plan/script
• Have difficulty understanding how I feel and putting it into words for other people.
• Need routine or continuity or I become very anxious or overwhelmed
• Either struggle to make eye contact or I make too much eye contact because I’m trying too hard
• Get very upset/uncomfortable when other people touch my belongings or rearrange my things
• Very good at noticing changes or details that perhaps are not obvious to most
• I struggle to interpret/understand other people’s emotions (think I have learned to recognise more obvious ones however).
• Have strong interests in certain subjects. Some for many years, some much shorter and intense until I move onto the next.
• Difficulty talking on the phone, struggle to follow the conversation and realise when it is my turn to speak, sometimes hearing back “are you still there?” because I don’t realise I should be speaking.

Thank you Morgan that’s really helpful to me.

Thank you LongSpoons that’s really helpful and a good way of looking at it in regards to your comments on the assessment with how it’s easier for them to see it than not see it.

and email it to them so they dont miss stuff

The specialists doing the assessment will be fully aware of how people on the spectrum may have relied on masking for all their life. In fact, when I was doing my assessment they asked questions specifically on masking, and gave a questionnaire that was based on understanding if a person has been masking. Masking is a symptom of ASD, try not to dwell on it to much.

They may ask about your childhood, so it may be best to talk to your parents/guardian to see if they have any info on your development growing up as well as any symptoms you may have experienced. Or if you have a good memory you may not need to ask anyone. They assess people on social communication, social interaction, repetitive behaviours and interests, and sensory issues, but of course there is a wide range of symptoms and some symptoms you may have, and some you may not.

I agree with aidie's advice on making a list of symptoms as it could really help with reducing some of the anxiety your feeling over the unknowns of the assessment process, and it could make you feel more in control if you know all the things you want to tell them.

excellent

That's all so relatable, I've just managed to get a referral to our local service after being initially fobbed off 24 years ago.

I'm getting a diagnosis now because I have an Autistic child and I think its important to be diagnosed so he doesn't feel isolated and that he has a role model.

The masking thing is an issue for everyone, we put a stupid amount of effort into passing perfectly, even now while I'm half way out there have only been a couple of times when I've just walked away to re-regulate when things are getting difficult. 

Around your age I had another one of those crisis moments where I needed to realign the world so it was bearable again and I realised that for NT people they weren't particularly concerned about if what they did was perfect they just had to feel that they could defend it. 

So when it comes to the assessments you don't have to be perfect you just have to show what you can, they are already looking so it's harder to decide you don't have an autistic profile than to decide that you do. 

Thank you aidie that’s really kind of you. Ok that sounds ok, I might have some time later to make the list so I’ll see what I can do

Paper  you are doing really well 

You are fighting your fears and "doing it anyway" which is awesome

the best way to ensure you get an assessment is to prepare well

so start by getting together a list of reasons why you think you are autistic. Have this in electronic form so you can email etc to any assessors. Once you have done this post it here for us to check over.