Undiagnosed online communities

You're welcome here. I am not yet diagnosed (still on the waiting list). I don't eat out either, although board games can be fun. There's no need to be good at them!

The more time I spend around autistic people, online and offline, the less I feel like a tourist and the more certain I am that my assessment will result in a diagnosis. It's also becoming increasingly clear to me that a diagnosis is not in fact necessary to identify as autistic, although personally I'm pursuing it now in case a situation comes up in future when I need it, as it's a very long process.

Hi Allfunktup
This sounds so like me.  Don't know if this will be helpful, though, as I am also undiagnosed: dx'd dyspraxic (2011, aged 47) and with ADHD (2015, aged 52) - have been awaiting autism assessment for two-and-a-half years, and almost scared to go for it when I finally get the call in case I'm told I'm *not *autistic.*. Heaven knows how I'd deal with it then :(

Like you, I overthink everything, try to pre-empt situations, and lurk in autistic groups but invariably without the confidence (the right?) to comment, as I don't have the external validation to know I can talk with any authority as an autistic person.  I have a load of sensory issues (light and sound, primarily, although not taste and texture, that seem so common in the autistic community).  I need loads of downtime, to process (common autistic trait), have autistic joy (I don't know how other people can stay still when any music is playing, how they don't marvel at a slug's anatomy, or the form, structure and colour of lichens) - but don't have other common autistic differences, eg no issue looking people in the eye, don't have aphantasia, and can be really loud and noisy (in spite of my auditory sensitivities).

It's hard, isn't it? Re board games, incidentally, I love some, hate others.  Certainly wouldn't want to play board games online (whether with complete strangers or well-known family members).  My daughter (diagnosed autistic 2 years ago) is certainly not a fan of board games!

I guess all I'd say is that you obviously relate to other autistic adults, so that should be enough.  If you wanted to contribute, you could always start any comment off by disclosing you feel like a tourist, and are not diagnosed.  That way, you could still be your authentic self and not feel like you're talking out of turn.  

One last thing: what about all those diagnosed as autistic, before they got diagnosed?  They were just as autistic beforehand... 

Wishing you well.  Know that you are not the only tourist/lurker/self-doubter on here :)

(Context: when I was assessed for ADHD, the report included the line 'no autism traits'.  Because I had only had the 90 minute ADHD assessment, I don't believe this time or evaluation was sufficient or explorative enough for my long-masked 'autistic' differences to be evident.  Alternatively, I simply might not be autistic...)

I think I would also find playing boardgames with so many people overwhelming. Growing up my mum and I played together, which was quiet and nice. I do really like some of the boardgames where you play together as a team against the game (so there is no competitiveness against each other and you work together). Now I mainly play boardgames online over boardgamearena.com which I enjoy sometimes. 

I was a bit surprised by the eating out one too. But my brain I just through they were much better at being autistic than me. Pros! I think I'm just too intimidated by a group of people playing games right now.  Hopefully I'll get over it.  I think I need to "come out" to my self first maybe? Self acceptance?

lol!

I've just started my diagnosis journey which up until now hasn't been easy. I'm 29 and only in the past 2 years did I become knowledgeable on Autism and began to see the connections in myself after years and years of questioning why I am the way I am. I feel similar in that self diagnosing almost doesn't feel as valid as a medical diagnosis but feel that is all I can do at present and hopeful that there are many people in the same boat as me that can understand.

Well, I hate board games and card games, with a vengeance. The rest of my family are keen on them, but stopped asking me to play them a long time ago.

I was self-diagnosed for about 6 years before I actually found a private service in my area that specialised in diagnosing adults. For those 6 years, I felt the same way you did so I think its pretty normal and common. Now that I'm here I wish I had just joined sooner, as everyone is so welcoming and we all understand how important self-diagnosis is and how difficult it can be to access an aassessment. So please don't feel like you don't belong here, you absolutely do!

Also I never really played board games as I am an only child, so to be honest if I went to one of those meet ups I probably wouldn't know the rules of any of the games!

I think some autists love board games. They have rules to follow and because the focus is on playing the game, socialising comes second. But not all of us like board games. I'm not a huge fan myself. Some can be fun, but I think my ADHD side dislikes the rule following and can't be bothered to learn new rules. Also sometimes the rules seem arbitrary and i think a game might be improved by a bit of tweaking, which could be done among friends and family perhaps but certainly not in a group of strangers. So I would not want to go to such an event either.

Quite a lot of autists have issues eating in company though, so I'm a bit surprised that one works.

I have found that some hobby groups, especially obscure or nerdy ones, are quite likely full of ND folks though.

i think board games and meals is a way to get people whod never go out, like you and alot of us, together going out meeting people... they do it as a way to sort of force fix the social isolation by plunging you into a very social thing. also helps get rid of the loneliness people feel, but they forget that it doesnt entirely work as alot of us wouldnt wanna go out into forced social activity and if we tried wed likely feel anxious and cancel just before trying to go out kinda like agoraphobia. so it doesnt entirely work and when you do force it it becomes awkward anyway.

alot of diagnosis are wrong and based off guesses anyway, and alot of diagnosis where first failed by the nhs then purchased privately lol so i wouldnt worry about diagnosis, health services are not too great, they cant eve diagnose a common cold if you gave them the symptoms.... so i wouldnt worry too much about that. your life experience is all that matters and what you have been through.

I also have so many "me too" moments here, but also many "not me" ones, some of which are the exact opposite, so I don't think I am trying to fit in. Even the opposite ones though kind of make me feel like my extreme opposite to some things is also autism because we tend to be either end of the bell curve.

Edit to add I am self diagnosed.

I hear you and your reservation and cautiousnes is laudable, in my opinion. As a MASSIVE overthinker myself, I think my advice to you is even more appropriate.....relax, don't think - just bang out your words and see where it takes you.  Fwiw, your writing screams AUTI at me!

Thanks Number,

I do see a lot of "me too" moments. But because this is all new I get moments when I convince myself that this is like my form of masking, like " do I think that because everyone else thinks that here", or "am I still trying to fit in". I suppose it's just an identity issue where I'm not sure where I stand just  yet. But it's at the back of everything. Totally over thinking everything and trying to anticipate everything for so long makes me a very unreliable narrator or my own life!

Thanks Anna,

Ii never played board games (not sure why this is important) because I'm rom a very large and loud family.  The competitiveness and bitterness in competitive activities always put me off.  Never understood why people enjoy activities that seem to make them visually  upset.

I keep dipping my toes in the forum, then run away sometimes.  But it is nice knowing that it exists sometimes be causes of comments like yours.

Plus there are actually many autistic people that self-identify and that is just as valid as a formal diagnosis! 

Hi! When I first joined this community I was not officially diagnosed and I knew almost nothing about autism- it was all very new to me- I had only just started reading about autism in women after someone suggested I could be autistic and it seemed to fit. I had lots of doubts and feelings of imposter syndrome initially and when I first joined this community I was also worried that it might not be ok ... because what if I wasn't autistic and I was intruding? But it is not like that at all!! Everyone is welcome here and I really hope you stay because this community is great  and connecting to other autistic people is great- it makes me feel less alone and also really helped me understand myself and grow more confident in my autistic identity. I am now actually officially diagnosed but I don't feel like I am any more or less a part of this community now. 

There is so so much diversity among autistic people so it's not that you can't be autistic just because you don't have a trait that one other autistic person appears to have (like playing boardgames). I have to admit though I do like playing boardgames but so do plenty of other people, neurotypical and autistic and plenty of autistic people also don't like that. It's to be expected that at a group meeting that centers around playing boardgames, most people that go there like playing them... !! 

I can very much relate to not being able to eat out- I can't eat socially at all at the moment... 

I really hope you stay on this forum. I can relate to your feelings as I felt similarly when I first joint but please believe me that you are more than welcome here!! 

Allfunktup said:

Do any other undiagnosed people feel the same?

Yes, but decreasingly so over time.  From my personal perspective, I have found an increasing affinity with the folks in this place because of the regular (and utterly random) moments of resonance and connection with all manner of weird and wonderful writings.  My experiences here are affirming of my self-identification and providing me with a better insight into which of my plethora of odd personality traits are primarily autistic in origin, and which are just generalised weird disorders and features driven primarily by my personal life experience.  Obviously there is unavoidable overlap - but hopefully you get the idea.

To give you a precise example - I recently (nearly 6 months ago) quit abusing alcohol, by completely quitting booze.  Inevitably, as sobriety has taken hold within my head, it has been incredibly useful to have other autists help me to distinguish which manifesting thoughts and behaviours are likely to be autistic blossoming - and which are just cold hard sobriety and chemical re-balancing.  If a few other people say "God, yea, me too" when I relay a feeling or experience, it is more probable to be an autistic thing.  It's really helpful to me.

My advice Allfunk, is relax and participate.  See where it leads you.

All the best.