Hello!

Hello Everyone,

I'm a 51-year-old man who has self-diagnosed as autistic. I'm on the pathway to a formal diagnosis but of course it will take years. I have cleared the first few hurdles and would be surprised if I didn't get a formal diagnosis.

I have always suspected I was 'on the spectrum' and have often heard people say as much. Recently I've become more interested in this because my teenage daughter is clearly autistic. She doesn't have a formal diagnosis either and has been a bit resistant to asking for one.

I've always had great difficulty with social interactions and am much happier writing than speaking. I have some of the classic special interests (particularly chess, which I can spend whole days on) and the need for order and control in my environment. I am anxious 90% of the time. I believe both my parents were autistic. All three of us found it hard to make and keep friends and are/were prone to social faux pas.

Since the penny dropped for me that my daughter and I are autistic I have been reading everything I can about it. It explains an awful lot in my own life, and much in my daughter's, especially as she gets older. I think I have the condition that would have been called 'Asperger's' in the past. My daughter might be a bit further along the spectrum.

I am interested in learning about how to accept autism and change my lifestyle to 'go with the grain' of it. My instinct is that I might be able to make life an awful lot easier for myself and my daughter if we learn how to live as autistic people instead of trying to pass as neurotypical.

I hope to join a local group and meet other autistic people and learn more about all this.

All the best,

Richy

  • Thanks Bunny. Alas, I'm not in England, so I believe I'm at the mercy of the Welsh waiting list.

  • Hi Richy and welcome to the community!

    I'm on the pathway to a formal diagnosis but of course it will take years.

    If you live in England and are either currently on, or are pursuing a referral to be placed on, the NHS's own waiting list (ie for an assessment to be carried out by the NHS itself), then you might like to ask your GP about re-referring you using the Right to Choose pathway (RTC), which you are entitled to use instead if you wish.

    In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS. 

    I was on an NHS waiting list for two years before I learned about RTC and switched to it (on the recommendation of an NHS psychiatrist). My assessment and diagnosis (I chose to use Psychiatry UK) then followed around just four months later.

    Some examples of RTC providers are listed here, along with some further explanation.

    More information:

    NAS - How to request an autism assessment

  • Fantastic - thanks! I bought the Dr Neff book on Saturday and it's just what I was looking for - practical advice on how to make everyday life easier. I'll check out the others.

  • Okay! I wrote this on another thread, so let me just paste it here…

    ”NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman.
    A great overall history on Autism, though it is a little outdated with what we know about Dr. Hans Aspergers now. He wasn’t quite the saint that he’s portrayed in the book, though he is (regrettably) still a very important figure in the history of Autism.

    ”Unmasking Autism” by Devon Price, PhD
    Excellent read for Autistic people who realize they are Autistic late in life. Devon Price is a trans Autistic man, so he has a wonderfully diverse view on the spectrum.

    ”Self-Care for Autistic People” by Dr. Megan Anna Neff
    Also written by an “AuDHD” doctor. This is one of my favorite overall books because it is written in a way that is so easy to digest if you’re neurodivergent.

    ”We’re Not Broken: Changing the Autism Conversation” by Eric Garcia
    Written by an Autistic political journalist. Really more impactful if you’re American since a lot of what he discusses is USA’s policies on Autism, but he gives a very unique perspective on the legal and cultural battles Autistic people fight on a day to day basis.

  • That's really interesting and useful - thank you so much!

    I'd be grateful for any specific reading recommendations. 

  • Welcome Richy!

    Congratulations on your discovery! It’s exciting to hear about your journey towards “unmasking” your Autism. I was late diagnosed (age 30), and I have a daughter with Autism as well. I totally get the obsessive reading everything once you realize you might have Autism, I did the same thing leading up to my diagnosis. If you’d like some reading material, I’ve got some, though they’re a little geared towards American resources and such.

    As for changing your lifestyle to stop passing as neurotypical, here are some ground rules I’ve learned in the last few years:

    1. Try not to apologize for your stims, behaviors, or neurodivergent thought patterns. (That’s really hard for me, personally. I apologize for everything.) But if you apologize for your Autism, it’s going to be harder for you to accept yourself as you are.
    2. It’s high support / low support, not high functioning / low functioning. For example, I am a low support Autistic, meaning I need some supports like my wife and headphones in public, but that does not mean I function more or better than someone that needs more support than me.
    3. Most people on the spectrum seem to prefer identity first language (I am an Autistic person), but some prefer person first language (I am a person with Autism). Imo, it’s up to you to decide which is more appropriate.
    4. Be wary of Autistic resources. Some, like this site, are made for Autistic people by Autistic people. Some groups - like the infamous Autism Speaks - is more geared towards family of Autistics, not the Autistics themselves. A little messed up, honestly.

    Sorry, that’s a lot. I didn’t mean to write so much when I started. I think I’m just excited when I see that someone like me is ready to unmask.

    I wish you the best!