Coming to terms with realising you are probably autistic

Hi Out_of_step,

Thanks a lot for your kind words.  I'm really pleased to hear that your diagnosis has helped to improve your life in different ways.  It's great that you got the answer which allowed you to understand yourself better.

I am feeling a little better at the moment.  The other day I talked with an autistic friend who told me that it would be good to just assume I'm autistic because the traits fit me, and to start reading more about autism and use strategies to make life better.  I think I was holding back from doing this, because I was scared of how I would later feel if I was told I wasn't autistic at my assessment.  But I think I'm moving past this feeling now.  I'm pretty sure that I'm autistic and can see it in myself in day-to-day life.  I will look for ways to improve my life, because this feels more empowering than just waiting.

Thanks again for your support, it's much appreciated.

All the best for your assessment, Caelus!

Hi Out_of_step,

Thanks for your reply.  I had a similar experience to you when I first started reading about autism.  It has been helpful to talk to several autistic people on this forum, so that I can see how many infinite varieties of autistic experience there are.

At the initial stage, when I started thinking about autism, I took a few online questionnaires.  I remember one of them had a question something like this: "Does the song lyric 'I've got you under my skin' make you feel uncomfortable?"  I think it was intended to test whether somebody thinks very literally, which can be a sign of autism.  But to me it just seems a rather silly and random question, and probably not helpful to a lot of people.  Other people may disagree!

At school I was called 'Joe' (my name isn't Joseph), at university I was 'The Mole', or 'Badger', The latter two names had a logical origin, as I found a hidden trapdoor in my room and retrieved a 1930s newspaper and various other oddities - including lots of wine bottles, alas empty - from the cellar below.

I would say  Temple grandin is actually known for her animal research in the non-autistc world more than her autism

no problem

Oh, sorry being a bit dumb. I was looking for some hidden meaning, but you meant literally!

It was a nick name from school, no particular reason for it, just got it and it stuck. 

I'm sure they wouldve left a voice mail and or rang you again if it was about an important assessment.

shouldnt be long although its been like 5 weeks now so their 3 week estimate has died off lol

could be perhaps that i maybe had a call from whoever they refered me to and i perhaps misheard them and hung up.... i do remember a week or 2 ago a random phone call that i sure they said they was from carphone warehouse... so i hung up because *** sales calls... could be i misheard and it wasnt carphone warehouse but maybe if the assessment company has a name that sounds like that over a mumbled phone line lol see, this *** is why i hate phone calls...phones need to be banned and deleted from human memory.

So relatively speaking, not long to wait

not got word back yet. last i heard was from GP said hes referring me and it will take like 3 weeks or something. 

Some good replies here but I'm adding my two penneth! 

I was indecisive about going for an assessment for over four years. I put myself forward for private assessment whilst in the middle of NHS CBT therapy.  I went through bouts of "yes I definitely am" to "who the hell do I think I am, being on the spectrum?" It mostly depended on how stressful my day had been. I saw the assessment as beneficial to give me some answers with a result either way.  My diagnosis helped inform my CBT. It's helped me understand what I can change and what I can't.  It's helped me deal with relationship misunderstandings. It's helped me be kinder to myself which is one of the most important things.  So be kind to yourself while you are waiting and cut yourself some slack. If you need to rest then rest. Write things down to help. Keep posting on here. You feel anxious now, this will probably increase leading up to your assessment. Ride it out and remind yourself why you are doing it. 

I think coming to terms with it was relatively easy because I knew, deep down. I didn't want a label, it was more about informing my mental health.  But the word "autistic" is quite strong and I'm still getting used to it. I was diagnosed with Aspergers "subtype" and this also made me feel uncomfortable. I've got used to it more now. I would like to tell people I've got a "touch of the Temple Grandin's" but they probably wouldn't know what I was on about haha.

How long have you got to wait for your assessment?

Yes and I think when you initially start reading about AS it is stereotypical behaviours.  Nuances are not mentioned. I always assumed I made good eye contact etc bUT it tales effort and iften makes me feel uncomfortable. When you live your life your way and that has always seemed normal, it's difficult to know or understand it's different to other people.  Other than a general intangible feeling of being a bit different. There are so many different presentations. Even now I feel I don't relate to a lot. But there's is also a lot I can relate to. It's not about ticking every box.

Hi Jenny,

Thanks so much for sharing your thoughts and feelings.  It's particularly helpful to me to read about how you describe what a hidden disability is.  It sounds quite isolating, the fact that other people don't see or understand what you're going through and so aren't able to appreciate it.  I can relate to elements of what you say: for example, needing to rest on my own after stressful interactions.  On driving: I've actually never learnt to drive; mainly because I've always been worried about the environment, but also because I live in London where there are lots of alternatives e.g. public transport.  But I also don't like the idea of driving in itself.

Like you, I also feel that my internal experience of anxiety etc isn't necessarily visible or obvious to others.  I've also had a strong sense for years that I haven't managed to live up to my potential, but I haven't been able to put my finger on why that is, or how to fix it.  I've had therapy for low self-esteem several times, which has always focused on trying to believe that actually I have achieved a lot, and everything's OK.  But I've never really believed it; deep down I've known that something is wrong.  I hope that, when I have my assessment, I will be able to talk with the assessors about this, ask them if I do have a hidden disability and if so, in what ways has it affected my life and stopped me moving forwards.  For example, is it that my poor social skills have affected my confidence, which has limited what I have done?  I really want to try to understand all of this.

Hi Riddler,

Thanks for sharing all of this so honestly.

I'm glad to hear that you're happy now, even though it's been such a difficult journey.  It's frustrating that no-one spotted your early signs.  I was also wondering recently why no adult noticed that I was sitting on my own in the same place in the playground every play time, when I was at school.  Anyway, maybe some time in the future, the whole journey will make sense.  I'm sorry to hear that you suffered abuse from your stepmother.  

Like you, I'm very glad to be part of this community.  It's really amazing how much I can relate to many of the people here.  I was thinking today: say if I have my assessment and it turns out I'm not autistic; will I still be able to talk with the people here?  I can relate so much to what many autistic people say and how they describe their experiences of life.  I am so grateful that I have (probably) found the answer about myself.  I'm 38 and it could have happened earlier, or it could have happened later, but I'm grateful that it's happened. Hopefully the gratitude will be the main thing that remains after all the anxiety and confusion have been processed. 

just as i was leaving a thought entered by head why is this guy called "The Riddler". Really I should have ignored that thought becuase it was an ADHD thought for sure.

np = no problem 

sorry

I don’t understand your reply. Could you elaborate please?

np  why The Riddler ?

Ultramarine said:

at the time I imagined that it would enable me to overcome my shyness and become more confident than I am now. 

Oh, how this resonates with me!  I always, always thought I could overcome my anxiety and I started drifting towards the self help sections of the library from around age 13.  I remember at that time it began with books such as "How to win friends and influence people" by Dale Carnegie and "Self help for your Nerves" by Claire Weekes, but over the years I gathered whole book shelves of what I now call "unhelpful self help".  I couldn't ever say that they were completely unhelpful, mind, just that they never really hit the spot and I still found myself quaking in my shoes and avoiding situations at the last minute, often feigning illnesses that seemed more acceptable than my anxiety.  I learnt early on that, if I did mention my anxiety, it would be dismissed with comments like, "Oh, everyone gets a bit nervous but they just get on with it!"  And I just couldn't. 

I even attended various courses run by Anxiety UK and the Chamber of Commerce (esp. for presentation anxiety) but still, the anxiety remained.  I can clearly remember one presentation I'd worked long and hard preparing but which, at the last minute, I couldn't do and had to hide in the toilets with "stomach cramps".  Not good on the day and not good when it comes to performance reviews and the pattern is revealed.  Another job I have to leave.  

But, yes, the silver lining.  I do believe that many of us are super-empathic and that this relates to our huge sensitivity and ability to feel into situations.  In something like counselling and, I imagine, any sort of 1:1 work, this is a major strength.  Plus, when we do find ourselves coping better, we have gathered very useful information on what does and doesn't help and this can be shared.  Also, I think our heightened senses can make us more perceptive and creative.  So choosing work and activities that align with these strengths can, I believe, make for a much happier life.  

The disability thing has crept up on me.  I've always known, of course, that there were things that I found more difficult than others and, for example, when it came to driving this involved a lot of stress and effort and I still struggled so much that within our family we jokingly referred to my "driving disability".  I needed to deskill driving as much as possible so's I didn't feel that too much was coming at me at once and feeding into my stress levels.  And I can clearly remember things improving when I moved to an automatic.  Even here, though, when my husband went to choose a car and made it clear to the dealer we were only interested in automatics, the dealer actually asked, "Oh!  Is your wife disabled?"  And my husband said, "No" but inside his head was thinking, "Well, in a way..." 

It doesn't feel clear cut to me even now, but looking back there have certainly been things I just felt unable to do, without being able to fully explain why because, at that time, I didn't have the language to articulate it all.  Ordinary, everyday things, also seemed to take more out of me and I always needed a long recovery time.  Job interviews were particularly demanding and yes, I know that few people enjoy the process, but do they have to lie down in a darkened room for the rest of the day to recover?

So yes, there's always been a strong sense of feeling different and extremely anxious and I'd say that it has been disabling.  Just not in an obvious way.  And this, in itself, has made matters worse because it meant I never received any understanding or compassion from others - I was just a shirker, even though I knew I was trying much harder than most just to get by. 

I'd also say that becoming isolated can be an effect of hidden disability but I'm guessing this depends on the level of free choice about it.  If I always intended to become a hermit then nothing has prevented me from doing what I wanted to do.  But if it's due to high anxiety, lack of acceptance or accommodation, inability to cope or even function at all some days then that to me has crossed a boundary.