Post-self-diagnosis: Feeling upset and worried

Hello everyone,

I've recently completed a number of assessments and, with high/very high scores in all of them, have been referred for NHS adult diagnosis for autism and ADHD.

  • Autism Spectrum Quotient
  • RAADS-R
  • CAT-Q (Camouflaging Autistic Traits Questionnaire)
  • The Aspie Quiz
  • ASRS-v1.1 (Adult ADHD Self-Report Scale)
  • HBI-19

This has all happened in the last two weeks and I feel all at sea and like I'm re-evaluating my whole life (I'm in my forties), but doing this very much on my own. I have no real friends, only my wife, and decided to reach out here on Saturday. My post got removed after a few minutes as suspected spam/abuse, pending review. I was given the option to complete an appeal form, which I did saying I was very sorry if I had broken any rules (I'd had read them before posting) and that I did not know what I'd done wrong. There was a notification on my profile saying that my post was under review but that then disappeared by Sunday afternoon and I've had no contact from the moderators involved in this (I don't even know who to contact and the FAQ say if I email the main address I may have to wait 10 days).

I wanted to be a part of this community to learn more about myself and others' experiences, but I just feel even worse about myself now. Are there some types of autism presentations that aren't allowed here? I'm so confused because I was careful to spent a fair bit of time on this site exploring others' posts before taking the leap and joining myself. Putting myself out there felt like a big step and I feel like I've been instantly rejected. Even though I'm used to rejection it's never easy and I thought that, for the first time, I'd maybe found a community that would understand. I joined up to Wrong Planet yesterday but it seems very USA-based.

Sorry if this seems a bit whiny. I just don't know what I'm supposed to do to properly introduce myself here.

  • Hi , and thank you everyone for your very kind words of welcome. When said a lot of people her are 'very unsure of ourselves in very weird ways and sort-of knowing how to communicate really nicely and well but also ballsing things up quite easily too,' that really resonated with me. I feel quite weird a lot of the time. To answer your question, Astrid, I'm coming to terms with the possibility that my main special interest is my wife. So much so that it's been something I've felt I can never talk to anyone about until I realised I might be autistic. I've written about it here: https://community.autism.org.uk/f/mental-health-and-wellbeing/32074/hypersexuality-hypersexual-disorder. It feels complicated and difficult.

    I have had other special interests (none as intense) and when I've thrown myself into them I've excelled academically, but always failed to sustain careers/employment in them: theology, IT, wine education/retail.

    Thanks for the tip about taking my time with things. My wife has observed that I've been somewhat manic/obsessive at points in recent weeks as I've started exploring.

  • Hi there and welcome. Sometimes a blip can happen and that it is software that takes down a post, not a person. 

    What to do is if you ever wish to put up a post again, just keep a copy of it and then post, in case it accidentally gets taken down, or if it does get removed by a person you can then edit it/review it  (in case you put any personal info ) and put it up again. 

    With regards to you having autism, please know that a lot of people on here are really supportive of each other and very friendly. 

    My autism is something that I would not change for the world. 

    Do tell us all a little about yourself, do you have a special interest for example? 

    Posting about your special interest will prompt others with that interest to reply and you can then have a discussion about it, so you could consider making a new post about your special interest some time, it is a good ice breaker on here. 

    Just take your time with things, it can be a lot to take in and the process of finding out you have autism can be tiring. 

    So try to have some space and time to do some things that are not all focused on the autism diagnoses so you can get a rest bite.

  • I won't reiterate what's already been said about the temperamental automated filter here. Regarding feeling at all at sea and re-evaluating your life, this is very normal. It does get easier as time passes, but it can take a while (it's taken me about two years since actual assessment and maybe still ongoing on some level). Whatever you're thinking about yourself, other people here have thought about themselves when they were coming to terms with their autistic identity. It's hard. Be kind to yourself.

  • Hello ShinyBrownEyes, I am Number.

    Welcome to this place and I am sorry that it hasn't been an auspicious beginning.

    Don't worry about your post being "pulled" for no apparent reason - it happens to many here for a variety of odd-ball reasons.  That really is nothing to worry about.  This is a clunky place from a tech point of view.

    As you have been watching for a while already, you know how to introduce yourself = just join into any thread that you feel like writing on.  This is a very accommodating place and most/many here share the features of being very unsure of ourselves in very weird ways and sort-of knowing how to communicate really nicely and well but also ballsing things up quite easily too.  This is a place of understanding for people who fit that bill of goods.

    I hope you will find your feet and comfort here over the coming days and weeks.  Give it a while.

    See you around.

    Number.

  • Thanks for the explanation. It makes sense that there are gatekeeping procedures in place. I think maybe it was that I made my first post, but then edited it to include a link to a peer-reviewed piece of clinical research that, for me at least, was eye opening. My original post has now been approved, but with the link removed (Hypersexuality / hypersexual disorder - Mental health and wellbeing - Home - National Autistic Society - our Community (autism.org.uk). I've just queried why this is has happened so maybe it will be reinstated. Thanks again for your welcome and help.  

  • Hey there, I'm a thirty-something waiting on a diagnosis over here after also very recently coming to terms with the possibility of being autistic. Fwiw, I, too, had one of my first posts removed and I'm not exactly sure why. As Fibonacci has suggested, I'm guessing because I have a new account and there must be spam/bots that sign up; the automatic spam filter probably got a bit over-excited! 

  • Hi,

    Some common introduction things that can lead to posts being removed are things like putting identifiable information up, like a full name, or detailed location.

    Other things that can lead to suspicion is having links in a first post (we have a big problem of spam bots with dodgy links)

    And also, the automatic spam filter is also just a bit dodgy. 

    We absolutely accept people who haven't been diagnosed yet and I hope you find some chats you would like to get involved in.

    Sorry your introduction go as we would have wanted, here's hoping it will get better