Autism as an adult/as a woman

This is relating to wellness in a very broad sense... Does anyone have any experience with getting diagnosed as autistic as an adult (and as a woman)?

I've always considered myself to be an... unusual... kind of person. It wasn't until I changed jobs fairly recently and heard my boss talking about her autistic kid and her own autistic traits (and her hints that that I might be too) that I've started to wonder.

I've seen a few YouTube videos, did a few online surveys. And some things sound so familiar and weren't even things I thought about as symptoms.
Apparently autism also presents differently in women/women can often mask it better.

Waiting lists are long here (FYI, I'm not in the US), especially for adults (children get priority). So at this point it's more about finding resources to kind of diagnose myself/ find tools to handle it?
So: YouTube channels, questionnaires, books... any suggestions?
Our perhaps symptoms that were revelations for you?
If there's a questionnaire out there for partners to fill out, that would be of interest too - I'm not sure if I'm perceived the same way as I feel.
If I have autism, I'm pretty good at masking, but I have issues with 'executive dysfunction'/productivity especially.

Replies

  • COGypsy
    COGypsy Posts: 1,352 Member
    There's a creator on Instagram, @thespeechprof that is currently exploring evaluation for AuDHD. He's an incredible communicator and has been doing a really interesting job of laying out what has gotten him to the point of exploring a diagnosis. He has neurodivergent children and has been seeing a lot of similarities. Obviously, he's not a woman :), but he's erudite and engaging enough that I look forward to his postings and want to know how it all goes. Note, I am also a person that has never really contemplated much one way or the other about neurodivergence, and am finding this aspect of his content really fascinating.
  • MargaretYakoda
    MargaretYakoda Posts: 2,994 Member
    I was diagnosed as a child. But my parents hid the diagnosis from the school because at the time it would have meant I would no longer have a right to a public education.

    I completely understand the “unusual kind of person” I have tried to fit in much of my life. About a decade ago I realized no matter how hard I try it never really works. So I just leaned into being myself (as long as it wasn’t disruptive to others)

    Here are some helpful links:

    RADS-R test. A self diagnostic that is pretty accurate. https://embrace-autism.com/raads-r/

    Autistic Self Advocacy Network
    https://autisticadvocacy.org/

    Ember Green is autistic and has many great videos about her experiences

    https://youtube.com/@ember_green?si=ixtfR4kGLC7WrXz4


    Alexander Avila has a wonderful essay about self diagnosis

    https://youtu.be/x4ieMzbXiRA?si=SSJ1_R4QzJah8YNB

    PM me for some facebook group recommendations if that’s your thing.

  • Mouse_Potato
    Mouse_Potato Posts: 1,510 Member
    I have not been diagnosed (way too expensive as an adult), but I have suspected I may be autistic for the last 6-8 years. I just took the RADS-R test that MargaretYakoda posted and scored a 169.

    I belong to a few Facebook groups, but I don't interact much. I don't really need support. Like you, I am very good at masking, though it gets exhausting. The main benefit to me in being self-diagnosed is that I understand why things are different for me. Like, when someone poses a question to a group of people and we're all supposed to have the same answer and mine ends up being something else.

    Traits that made me suspect:

    1. I'm very literal and this frequently gets me in trouble (doing what I'm asked rather than what was "implied," for example).
    2. I seem to interpret social niceties differently. I've been told before that someone was rude to me when I didn't think so. And, of course, I've been told I was rude and had no idea why.
    3. Special interests: I will get borderline obsessed with something to the point of losing interest in almost anything else. Then, when I've drained every bit of knowledge/experience/gone as far as I can with it, I will drop it and lose all interest.
    4. I am a very caring person, but empathy is a complete mystery to me. I don't even understand the concept.
    5. I thrive on structure and rules and get very upset when things are disrupted.

    There are probably a lot more, but that's what I've got off the top of my head.
  • springlering62
    springlering62 Posts: 8,437 Member
    Anyway hugs @lietchi. We are birds of a feather, maybe? Or does that irritate you? 😉
  • HoneyBadger302
    HoneyBadger302 Posts: 2,069 Member
    I've always known I had ADHD, and it runs in the family. Of course, only the boys have ever been diagnosed with anything (brother and nephew).
    On that test I scored 143, but several of the questions there wasn't a "right" answer. For example, enjoying eating with family or friends - well, on occasion, yes, I enjoy that, but I do not want to do it often. Same with hugs or being held - on occasion, yes (from a boyfriend), but otherwise? Other than a quick friendly hug (which was something I had to get used to when I was training in a martial art for years), Nope!
    A lot of the things "most" of the time I feel or respond that way, but it's not "all" the time. I've learned to cope pretty well for most of my social shortcomings, although I've always been the odd (wo)man out in most gatherings, at least to some extent.
  • mikeyrowlands
    mikeyrowlands Posts: 94 Member
    I've been through the ADHD journey in UK, similar feelings to yourself but also always struggled with routine and habits, impulsivity and severe GAD.

    I was referred via GP to a 'specialist' that put me on a waiting list for assesment, this was actually really good and done with a person who talks to you and asks more specifically about your life and things that may or may not happen, it included a questionaire sent to my wife.

    The sad thing is, it took about 8 months to he seen and then over 12 months to be assigned to a clinician and assigned medication. I understand that the wait list has been growing exponentially over the last years, medication is also actually difficult to get hold of, my last couple of prescriptions I've been reducing and rationing so I can try and make it last a bit longer. It does help massively and is crazy to realise I went without meds for so long.

    You may have more joy privately, not sure of the cost or wait if you are able to go in this direction.
  • claireychn074
    claireychn074 Posts: 1,605 Member
    I’m not sure which country you’re in - but is there a national charity you could approach? I know there is in the UK and they have v good resources online.

    I’ve recently come to suspect my father is autistic (so much makes sense now) and I don’t think I am, but i defo have some traits / weirdness about me. I did spend some time researching online to help me understand my father even though he’s never been tested and he won’t countenance the idea.

    At his stage of life I don’t think diagnosis would help, and he’s never bothered to mask, but it helps me to have an inkling into his behaviour patterns.
  • yirara
    yirara Posts: 9,941 Member
    I'm pretty certain I'm part of this exclusive club. But I don't feel the need to get diagnosed as I'm mostly doing fine in every-day life (well, I manage to fix my general chaos and mishaps) and I think I'd be in a lot more problems medically if I had a diagnosis. Doctors just have a tendency to blame everything on whatever psycho they see on the file. And I currently have enough unsolved things and don't want to deal with that as well on top.
  • MargaretYakoda
    MargaretYakoda Posts: 2,994 Member
    Re: Autism and scam diet advice.

    Ember Green is an autistic YouTuber. Good stuff. But this one specifically addresses some BS that’s going around about autism and diet.
    https://youtu.be/DxtGX88d55I?si=RfA2Kr8pg29OZ8mm

    tl;dw autism is neither caused, nor cured by diet. And if anyone tells you otherwise? They are just plain wrong.
  • FeatheredEmpress
    FeatheredEmpress Posts: 7 Member
    Diagnosed in my late twenties. Mostly it was a huge sense of relief and "ohhh, so much makes sense now!". Obviously there's no real treatment for it, but it's helped me treat myself better if that makes sense. For example the two therapists who pushed me to resolve my "GAD" by "just going out there and socialising" were actually making things worse by forcing me to engage in an activity I hate and has no real benefit to me. And the anger management counsellor who told me to "just not get angry" could maybe have used the fact I'm autistic to help me understand WHY I get angry when things are unfair instead of making me feel like I'm the problem. But hey ho.

    Be prepared to possibly face derision and disbelief if you seek diagnosis. I was referred by a crisis counsellor who actually picked up on some random comments I made while discussing my depressive episode, this was then referred to my GP (not the one who laughed in my face and asked me why I wanted to be evaluated, what good would it do) who referred me to the National Autism Service, I was on a waiting list for about 2 years before I was contacted and informed that a private group could take me on, it was another year or so I believe but I ended up being evaluated by the private company at no cost to myself and diagnosed.

    Post-diagnosis I have to say that apart from a short series of mini lectures which did help to explain some things, there has been no ongoing support. I don't mind this so much but just bear it in mind. There's plenty of resources online (+1 for the RADS-R test) and lots of things on social media you can look at. I really like seeing posts by autistic people on Instagram for example, as it makes me feel "seen" without having to engage with people.

    I'll also say it has opened my mind to the possibility I might also have some form of ADHD, I'm not going to pursue a diagnosis on this front as a lot of things could just be autism, but I'm finding it easier to pinpoint traits I have that are maybe not so neurotypical.

    One of the symptoms that blew my mind was being overly verbose, apparently that's an autistic thing! I just thought I knew a lot of uneducated people who couldn't understand my vocabulary. :D

    Collecting things is also apparently a symptom. I've collected things my whole life (books, nail polish, tweezers, Pokemon, makeup to name a few) but frequently I'll just stop collecting something and never pick it back up. Weird!

    Sorry this has been a wall of text, best of luck in your endeavours!

  • weebo1980
    weebo1980 Posts: 57 Member
    iam autistic to anyone like to be firends on here with me need some friends please add me :-)
  • ___Tams___
    ___Tams___ Posts: 29 Member
    I have been waiting 2 years now for an Autism assessment. I scored 184 on that questionnaire but some of the answers I felt I was a mixture. I have suffered with Anxiety and always felt I was different and that no one understood me. Since working with children with Autism I have noticed a lot of similarities with them in myself. I have always found it hard to explain how I'm feeling or how to show emotion. Working with the kids has really helped a lot, it has allowed me to open up more and talk about the way that I am and why I act in certain ways.