Hi! I think im Autistic and trying to figure it out in my mid 30's

Hey Everyone, I'm Pax (He/They).

I am in the process of getting assessed for ADHD, which they confirmed I had, and in the process I was told I had a lot of autism traits and that I may want to look into an assessment.

I'm 35, Dyslexic, and have had a very long history of Mental health issues, mainly depression and anxiety and at one point was told I likely had bipolar (though that is an odd story), I'm also Pan, Ace, and Floating around somewhere in the Gender non-binary sea, which I only mention because I've heard that being non-binary is statistically significant in Autism.

I will freely admit I had the wrong idea about Autism when I heard this, mainly due to my lack of education on the matter and my immediate reaction was "Don't be ridiculous", however I did what I assume is a very common reaction and went down a massive youtube rabbit hole and I found I clicked massively with what I was seeing and so much so over the last week I've been getting increasingly more convinced I am. 

Hearing of experiences of feeling like an alien walking around a world I don't understand and trying my best to fit in and descriptions of masking really made the lightbulb click on. Remembering back to times I was literally a host of a house party and I could only stay long enough to say "Hi" before I had to leave and retreat to my bedroom because it all became too much. Stimming behaviors and passive self-harm such as picking etc. These are all things I do and have done for as long as I remember among many others and don't even get me started on specialist subjects!

Anyway I could wax lyrical about this all day and I have a great penchant for over-explaining but the long and short of it is, these are my first tentative steps into seeking out people in the autistic community.

I understand this must be something that happens multiple times a day but if anyone feels inclined to answer I do have a few questions I'd love to get some insight into.

1/ Anyone has any good books on Adult Autism they would like to recommend? I've heard people mention that the field has changed a lot in the last 10 years so I don't want to just jump in there and find I've been reading something wholly debunked. It would be best if it was available in Audiobook btw.

2/ Would anyone like to share insights into getting diagnosed? Mainly from the point of view of if it's worth doing. I was surprised to hear from several YouTubers official diagnosis isn't necessarily a given.

3/ If you were diagnosed as an adult, what was it you wished someone had told you at my stage?

Thank you in advance to anyone that answers any of those, and if my question is treading old ground I'd love it if you could link me to those topics. I'm trying to read through as much as I can but the Dyslexia and ADHD are fickle beasts that make me get distracted and stare at the shiny R2D2 on my desk when I get bored and tired of words. Also, anyone who wants to ask me questions I'm more than happy to talk so feel free to ask.

Thank you once again, Pax

  • Hi Pax

    I'm 38 and have recently been referred for an autism assessment with a wait of 30 months. I have suffered from anxiety in the past and did CBT but didn't find it particularly helpful. They ended up telling me I could have chronic social phobia as the sessions finished. 

    Since then I looked into autism more and found that I had so many traits and that a lot of what I have experienced up until now made sense. I have real problems with social interaction, eye contact and frequently take what people say literally. I'm also much more comfortable in my own company. Taking steps towards a diagnosis as helped in that I've been able to make sense of a lot of things but I do worry when I'm assessed I won't be on the spectrum and I'll be even more confused. I hope you're able to get the help you need. Take care.

  • Hi James

    Thank for your insight, I feel like getting assessed might help me make a lot more sense of what I'm seeing too but I keep seeing scare stories about problems with getting assessed and I have to admit I have a problem with rejection, definitely, an ADHD problem, not sure if it's also an Autism one too though. But this leads me to be quite worried about approaching it which is why I want to spend some time speaking to people with Autism and make sure I fit before I go for it. 

    Funnily enough, I had a similar experience with CBT and in the end, I was told I likely had some sort of Anxiety and Depressive disorder and absolutely no help with what to do about it. Felt like they just said "You're broken!" and pushed me out the door.

    I hope all goes well with your assessment when it gets here. Keep well!

  • Hi Pax,

    Welcome to the forum. It's a lot to take in, isn't it getting your head around the whole thing! I will have a look and see if there are audiobooks on any of the books I have read. Also my reading has been a bit skewed as I am a Aspergirl.

    Best wishes on your journey.

  • Thanks! Yeah, I'm trying to process it, given the ADHD is a new diagnosis too I'm struggling a bit to figure out what behaviour is being pushed by what, they certainly interact.

    No need to go out of your way to check if they're audiobooks if you have suggestions throw them at me and I can look, I do read written books if they hit my interests it just takes me longer.

    Not sure I followed the bit about being skewed but if you mean the books you've read are more regarding the more female typical presentation of Autism then I'm happy to read them, for some reason all my diagnosis have skewed to female presentation, probably to do with my gender fluidity. Thank you for any help! 

  • Welcome to the forum, Pax.

    You've got a lot of things going on, so it's hard to know where to start.

    My autistic brain means that sometimes I can be very cut and dried about things. I make no apologies for this. I'm offering it as a way of explanation if what I write comes across as abrupt.  I prefer to deal in concrete facts rather than speculation. Trying to second guess what will happen in the future is a fool's errand. As a rule, autistic people tend not to get caught up in the emotionally draining realm of hypotheticals that many NT (neurotypical) individuals delight in.

    This might help you to understand my approach to assessment and diagnosis.

    When it was suggested to me that I might be autistic, I spent a day or two mulling over it, no more than that.  It was more out of surprise than anything else. I'd been treated for Bipolar Disorder for many years and so this was a radical departure.  My psychologist sent off the referral within days of my visit, and then I waited for about a year and a half for the assessment.

    I don't recall ever thinking about it after that. 

    I didn't do any research, watch any videos, read any books - didn't devote one ounce of energy to it. Didn't join any forums. I mean, what would be the point? (this is autistic reasoning). It was just someone's suggestion after all. And, until I'd had a proper medical assessment with the autism unit, it was pure conjecture and speculation.

    I had my assessment (three interviews over the space of four weeks) and received a positive diagnosis for autism. Very surprised and stunned for a few days. Then, my autistic brain got to work and did some finding out.

    You can find out all there is to know about autism in about four days if you have a computer and some time on your hands. This website (and others) has a wealth of information. There are Ted Talks and endless Youtube videos on the subject. If you get a positive assessment, they will usually provide you with a list of books to read too. 

    I would suggest that you carry on with your life. Wait for the assessment and then deal with the results (positive or negative) afterwards. 

    Much love,

    Michael x

  • Hi Pax 

    Welcome to this forum Slight smile

    I am dyslexic and autistic ( level 1, high functioning ).

    I actually suspect I have ADHD but cant be bothered going for  diagnosis LOL

  • Hey Michael,

    Thanks for the welcome and I really appreciate the cut and dried explanation you've given and I can honestly say I wish my brain was able to give me the space to be able to think like you, but it just doesn't.

    Some of it is the ADHD, I'm hypersensitive to rejection and I have a ton of anxiety, and sorting out the assessment comes with overheads that I'm going to spend the next 2 years (or whatever the current wait is) getting anxious about going in there are being told I'm not autistic. If this had happened 20 years ago I'd probably have thought just as you do, I'd have just forgotten about it but back then I wasn't carrying around all the failures to fit in, bullying, and all the other junk that now follows me around. I catastrophize a lot, unfortunately.

    I've done the crash course on autism between youtube and reading stuff on here and such and I certainly now have a better understanding than I did a few days ago than I posted this thread and I'm going to be talking to the doctor tomorrow to get the referral.

    I appreciate your suggestion of just getting on with life while I wait, honestly, I don't want to, I don't really have a good quality of life, I'm fed up of waiting for life to happen to me, I've been struggling and failing for the last 30 years so while I wait I'm just going to assume I am Autistic until someone gives me a concrete answer and try and learn some coping strategies and some have already helped. For context, it was a trained psychiatrist that told me I was likely autistic after we'd spent a fairly long time together for the ADHD and she'd have been happy to work with me to get assessed but I couldn't afford the £1000+ it would have cost to be private like I was for the ADHD. 

    Thanks again for the suggestions!

    Pax x

  • Thanks Aidie, and Hi!

    I can't say I blame you for not being bothered if it doesn't affect your day-to-day existence too much. I need help with concentration and stuff for work ( I work for myself from home), but honestly, the biggest issue the ADHD gives me is a really hard time sleeping, so if I can fix it, it'll all be worth it.

    I have to admit it was a little disappointing finding out a lot of the things I assumed was ADHD and would be fixed by medication for it etc is actually very likely Autism 

  • it does effect me a wee bit,  i can go of in all directions at times and so easily distracted its mad !

    but i am now (trying) to use my meditation techniques to pull myself back to what i am supposed to be doing quicker and quicker LOL

    yes I dont know for sure if constant distractions are the autism or ADHD  to be honest.

    But all is OK really I'm fine I have everything I need  ,,,,, there are people in terrible positions now eg in India where COVID is killing so many people.

    What are the treatments to ADHD,,,,,,, is it low level stimulants ? 

  • Mindfulness and meditation do seem to help me somewhat so I hope it works out for you. It certainly helps for me to recognize when I get stuck which I struggled with before

    There are 2 techniques I've done that have worked so far, the one I've done most is micro rewards. Basically, identify your tasks and then do the task and immediately give yourself a small reward for finishing that task. For example, I need to list a load of products on Etsy so I got a small kinder bar and for every 2 listings, I get a little piece. It doesn't have to be food, it can be anything finite you can see and get pleasure out of so not something like a computer game or watching tiktok etc that might draw you in. Someone else I know loves stickers so gets a small sticker at random from her sticker bags whenever she does a task.

    The other that seems to be working right now is timing myself, I think it originally called the Pomodoro Technique but altered a bit for ADHD, basically use a physical kitchen time (not a phone or app etc) turn it to 20 mins (20 is best for me but 10, 15 or 25 would be fine if they suit you better, work for that time and then give yourself a 5 min break (I time this break too or I will suddenly find I have had a 30 min break). Continue the cycle and give yourself a longer break of about 30 mins every 3 to 4 cycles. My ADHD likes the rewards of timed breaks and the Autism likes the structure. 

    I tend to use micro rewards if I'm doing lots of smaller tasks that take all different lengths of time and use the timing when I have a large block of continuous work (e.g. doing my taxes)

    What are the treatments to ADHD,,,,,,, is it low level stimulants ? 

    They're probably the best know treatment. I haven't actually got to treatment yet because there's an 8-week wait between diagnosis and treatment right now, but my understanding is there are 2 different types of dopamine modifiers and one of those is the classic stimulant, and some are better for different people than others. Also, some people manage it without medication using lifestyle and mental techniques. I know one person who has done a great job by making those around them informed on ADHD and recruiting them to assist him.

    Sorry for the huge message, I can never seem to stop writing when I start