autism diagnosis

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    Community Voices

    Hi I was after some help. I’m wondering how people in the UK get diagnosed with autism by other ways than the NHS. There’s been a mistake with my referral and it has not been done apparently according to my mental health worker so I’m having to go through the referral again which is a 3 year waiting list. Iv been diagnosed with various mental health problems over the years and the last few months I have been exploring the possibility of being on the spectrum with my therapist and mental health worker. Being autistic makes so much more sence to me and how iv been all my life. I’m 34 and a self diagnosis seems to have just clicked with me and explained so much especially the sensory stuff and iv realised iv been “masking” for years. I did a few online tests yesterday and scored extremely high on all of them. I don’t want to have to pay loads to get diagnosed privatley but I’m hoping a diagnosis will open up a new world to me and a way of coping with life. Thank you for reading my comment. #AdultDiagnosis #Autism

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    Community Voices

    BuJo spreads to prepare for autism evaluation?

    <p>BuJo spreads to prepare for autism evaluation?</p>
    Lucian Grimm

    Learning I'm Not Alone When Receiving an Autism Diagnosis

    Getting a diagnosis can be important. While diagnoses may not be for everyone, and not everyone has the privilege of being able to get diagnosed, it can be so liberating for those of us who want or need a diagnosis. There’s sometimes a lot of stigma around being professionally diagnosed with anything. I think people often immediately see a diagnosis as a weakness or an inconvenience. While that can be the case for some, that isn’t always the case. Everyone’s experiences are different. There’s a lot of stigma around self-diagnosis as well. People often talk about why it can be dangerous, but self-diagnosis can also be a stepping stone to better things. Growing up, I was always the kid who stood out. I either didn’t talk enough, or I talked too much. I was either ignored or I was “too much.” I couldn’t really make friends, I didn’t get along with many people, and I didn’t know why that happened. The friends I did have often approached me first simply because I didn’t know how to talk to people. I didn’t understand why my friends would laugh at certain things, but I’d laugh anyway because I didn’t want to feel left out. I used to copy the peers I perceived as popular and likable as a way to make myself more likable and make friends. It never worked, but it was the only thing I could think of doing. I didn’t understand why nobody liked me. I also had little “quirks” that I now understand to be sensory issues and aversions. These often resulted in me being the butt of a joke or just flat-out disrespected. I didn’t like my food touching, and I hated certain textures. I wanted to jump out of my skin if I touched certain things. Eye contact physically made me want to throw up. People looking at me so intently when they were talking to me made me want to cry or vanish. I had to do things a certain way too. I didn’t know why, but it would cause me so much stress if I couldn’t do things the way I wanted to or someone interrupted me or made me stop. I had a lot of anxieties that other people around me who also had anxiety may not worry about. I wondered whether other people “script” what they are going to say to the next person they’re meeting or analyze every conversation in their heads. They didn’t seem to break into a sweat because they knew people were looking at them and they were terrified that they were making a fool of themselves or weirding other people out. I had stims as well, like bouncing my leg and rocking forwards and backwards. Sometimes when I was swaying or twisting while standing in one place, other people pointed it out and told me to stop. It made me feel like a “freak.” It wasn’t until well after high school that I really learned what autism was. I did research and talked to others in the community, and it was like I was seen for the first time ever. We shared so many stories and experiences. It was like, “Holy fuck — this is me. This is why I feel the way I do. I’m not the only person like this.” I just needed to figure out what to do next. I sought out therapists.  However, I soon figured out that quickly getting someone to listen to me and hear me out wouldn’t be easy. I had multiple therapists dismiss my symptoms as generalized anxiety or the aftermath of my depression, my attention-deficit-hyperactivity disorder (ADHD), or my post-traumatic stress disorder (PTSD) and just try to give me pills. I had a therapist who told me directly that I “just really want to be diagnosed” because I brought up my concerns and wanted to get evaluated for autism. These same therapists would also dismiss me when I spoke about it and proceed to talk about another topic as if it were “more important” than my symptoms. After a few years, I found a doctor who actually listened to me. He asked me a few basic questions, and he finally referred me for an autism evaluation. On March 17, I took a six-hour evaluation, and on April 7, I got the results of my evaluation. I am autistic. I’m not going to say that all of my problems are solved and life is great now — because it’s not. My official diagnosis will come with its own challenges, like how the world will see me and how people’s treatment of me will change. It also might influence how my jobs and relationships will go. Still, a lot of positives will also come out of my autism diagnosis. For one, I now know that I’m not alone — and I  never have been. I grew up feeling like an alien, learning to “mask” and force myself to accommodate everyone else around me so as to not be seen as “weird” or “annoying.” I never should have felt that way because there is nothing wrong with me. I don’t need to be fixed. My brain just developed differently, and my next step is to learn how to embrace that I’m autistic and live a life that’s best for me. Moving forward with the knowledge that I am autistic, I can proceed with taking care of myself and my mental health and practicing self-love in the ways that are best for me. I can unlearn my constant masking and stop ignoring my burnout. I can also research and find communities that fit me. I may be able to get benefits that otherwise would’ve been dismissed. Professional diagnosis isn’t for everyone and isn’t always easily accessible. I am privileged in lots of ways, and I was lucky to eventually find someone who took me seriously and was able to diagnose me as autistic. There is nothing “wrong” with me, and I don’t need to be fixed. I am not weird, and I am not a “freak.” I am neurodivergent and need to do things differently to make life easier for me, and that’s OK.

    Community Voices

    Why don't antidepressants and therapy work for me and my depression? Is it something else, C-PTSD or Autism?

    I have lived all of my 64 years (that I can remember) being depressed. I didn't know what it was until my 20s, and read a book called REALITY THERAPY which described my symptoms very well, and offered me hope for the first time. I started therapy soon after, but living with depression ever since.

    I have been in regular therapy since that time, and have had a wide variety of therapists, and a wide variety of antidepressants in those years. I'm currently on Effexor XR 300mg per day, and have been for over 10 years. It seems to have worked better for me than others I had in the previous years.

    Still, the best that I ever feel is what I think 'normal' people feel when they say they're depressed. I call it "neutral", although when I'm questioned by a therapist or doctor, they classify it as 'depressed'. For me, that "neutral" state feels like a huge relief, and a time to freely exhale, and otherwise let my body loose, and to relax. But like I said, the doctors say that I am still depressed then, just not as much as I usually am.

    Twenty years ago, a new doctor told me that the reason I wasn't getting better was because I was misdiagnosed, and he diagnosed me with Bipolar type 2. I started on Depakote as a mood stabilizer, and stayed on antidepressants as well. Then came a diagnosis of ADHD, and I have been on Ritalin ever since. I spent decades on the combination and still fought depression every step of the way.

    Last year I was switched from Depakote to Lithium, at a high dose, and because doctors didn't check my blood levels each month, I ended up with severe Lithium toxicity, and near death. I was taken to a hospital with a Trauma Center a hundred miles away, and spent the next week there hooked to three IVs, and constant medical attention. I'm still recuperating at home.

    My current psychiatrist doesn't agree with the previous Bipolar 2 diagnosis, but thinks it may be something else. C-PTSD seems to fit in a myriad of ways with me. But now I am wondering if even some level of Autism fits with me. It's hard for me to tell what might be actual symptoms that I have, and what might just be coincidences.

    If my depression is not coming from 'depression', per sé, but is coming from C-PTSD or Autism, would that explain why the antidepressants and talk therapy over the years have never truly gotten rid of it? Or does it not make any difference, and I'm just whistling in some dark alley somewhere? I don't really have much hope any more that things can ever get any better. ♧

    #Depression #ChronicDepression #Bipolar2Disorder #ADHD #Effexor #lithiumtoxicity #lithium #Misdiagnosed #BipolarDisorder #neurodiverse #MajorDepressiveDisorder #Depression #SocialAnxiety #AdultDiagnosis #AutismDiagnosis #BipolarDisorderDiagnosis #Autism #UndiagnosedAutism #TheNationalAutisticSociety #AutismAcceptance #Anxiety #PTSD #CPTSD #PTSDSupportAndRecovery #ComplexPosttraumaticStressDisorder #Selfdiagnoses

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    Andy C
    Andy C @lifescreams

    Searching for and Changing Your Identity With Undiagnosed Autism

    This is probably my most honest blog post to date, and it will hopefully help friends understand me more — and maybe help others in similar situations too. I was recently diagnosed with autism spectrum disorder (ASD). Probably a few years ago, this would have been referred to as Asperger’s syndrome, as I’m reasonably intelligent and hold down what could be seen as a middle-class professional job, though other parts of my life are more messy. Getting a diagnosis late in life has me looking back on my life through a new lens and understanding myself and my choices more. For me, one of the areas of my life affected by autism that now seems obvious is the social aspect and how I’ve tried to fit in. I hadn’t heard of masking before I fully understood autism insofar as not being authentic about who I am and making changes to fit in. I’ve visually changed, but I’ve also changed frequently in many areas, including my identity, voice, interests, beliefs, and more. So I’m going to briefly show you the journey of my life below. I think my childhood wasn’t too bad until I went to secondary school, where it quickly became obvious that I didn’t fit in. In my first year, got in trouble for acting up and disrupting the class with my friend. I got into a lot of trouble with my parents and teachers, which as a result made me quieter, less confident, and somewhat of a wallflower. I had a few similarly nerdy friends, got bullied occasionally, and generally hated school because I didn’t fit in. So at age 16, I left school and went to college. College was probably where I built my first persona as people didn’t know me, and it was a fresh start. I got into rock and metal music through a friend I made at college as well as my old school friend who lived across the road. So I dressed in black and grew my hair long, and “rocker” was my identity for a few years. During this time, I made a few friends who have stuck with me for over 30 years. They have stuck with me through all the changes in my life. In other words, they are true, reliable friends. In my 20s, I changed a bit, got more into indie music, cut my hair, and dressed a bit more casually. I also moved out of my parents’ house, which in some ways freed me up to try to live the life I wanted. During those years, my accent changed. It was not a conscious attempt to develop a new accent, but because I was working in a university, a lot of people were from middle-class backgrounds with less regional accents. I did try to improve my English and pronunciation, but through that, my Yorkshire accent got watered down. I also started listening to classical music and going to concerts and art galleries. It was again a vain attempt at trying to fit in. I would also pick up interests and habits from the various landlords I lodged with. By my late 20s, I had not had a long-term relationship since I was 17. At the time, I was noticing that I was attracted to some men, so my natural presumption was that I was gay. I assumed that was why I had not managed to form a romantic relationship with anyone. So again, being gay was not enough, I had to appear “more gay.” I started wearing different clothes, some of which now make me cringe. I started listening to pop music, which again was quite cringe-worthy. I briefly dated a few men in those years, but again, no relationship came of it. I began to realize I didn’t really have a strong attraction to either gender, and I had come out too soon without knowing who I really was. Also during this time, I was in a managerial job and was pushed to dress “smarter” and act more professional. I hated who I was, and I hated the responsibilities of management too. I could have difficult conversations, but I mentally tore myself apart worrying how I was making my staff feel when I had to manage others. Next up came the midlife crisis. In my late 30s, I was struggling with severe depression and hating my life. I started getting drawn back to metal music as this spoke to me more than any other type of music. I also started dressing in black again because wearing black made me feel more comfortable. I got my first piercings and tattoos, and the way I was appearing and the lifestyle I was living felt more like me. Now in my 40s, I look pretty similar to the way I did in my thirties — with the addition of a beard for quite a few years. I was also discovering religion again. I was an active Christian for a few years in my twenties and then became an atheist. In my early 40s, I discovered religion again, started attending church, and was full-on religious for a few years — including going through a reaffirmation baptism. After losing my job five years ago and moving away, though, I don’t regularly attend church, and my faith is not as strong as it once was. So throughout my life, I’ve considered myself straight, gay, bisexual, asexual, Christian, atheist, socialist, Green, liberal Democrat, carnivore, vegetarian, vegan, rocker, indie, and a pop fan. I’ve gone through lots of identity changes, but very little of it felt authentic. So who am I? I would say autism is a major part of my identity, which I’ve come to accept. I’ve come to understand when I’m masking and try to avoid this more — except when I feel I need to, such as at job interviews when I need to appear more like I think employers want me to. Sexuality-wise, who I am is a bit more difficult to define. I am probably bisexual, though I’m more attracted to women. Sometimes though, I wonder if I’m possibly asexual to a point, as I don’t have a strong desire for a sexual relationship. Veganism is probably quite a strong part of my identity too. I was vegetarian for a while, but I became vegan nearly a year ago, which has really changed my outlook on the world and how I treat animals. I’ve also gone back to the rock and metal life, and I’ve been part of that lifestyle for the past nine years. I strongly identify with the lyrics and feel most comfortable wearing black and having piercings and tattoos. Musically, though, I’m not stuck on one genre and listen to lots of different styles depending on my mood. My disabilities also unfortunately define me. Alongside my autism is recurrent depression and anxiety. I’ve now permanently been on different antidepressants for over 20 years. I also walk with either a cane or crutches due to the pain and instability in my legs. I have spondylolisthesis, fibromyalgia, temporomandibular joint disorder (TMJ), trigeminal neuralgia, and other neurological conditions. My autism diagnosis has made me more self-aware and has helped me understand when I’m burnt-out and need time out. But these are the early days of my autism diagnosis, and it is still a journey of self-discovery of how autism affects me and how to live with it.

    Community Voices

    Happy Holidays

    Hi everyone,
    firstly I want to start off by apologising on the low activity recently. Unfortunately due to a new additional diagnosis it led to a bit of a personal crisis of acceptance and took me a while to realise that just the diagnosis was new, I am not and with that researching in to what I could do or get to help me manage this condition both at home and at work. I started this group with hope that we together could help addressing adult autism within the workplace as a lot of information I feel is targeted towards children with autism or parents on managing and very little on adult autism and what there is in terms of workplace support, the challenges that arise and the problems we might all face, or even what support we've had that works etc. The numbers of people with autism in the workplace is not only low, but the rate of people with autism who lose their job is shockingly higher and with that a lot of those numbers were due to a lack of support or understanding which I believe strongly that by working together we can overcome these statistics by not only sharing with each other but also by highlighting issues and even overcoming them, with that and my new diagnosis, it gives me the opportunity to do so much more as one thing I enjoy doing a lot is research, even if I am my own guinea pig and a chance to share the route between new diagnosis to support and barriers. I want to wish you all the happiest of all holidays! #Autism #Workplace #AutismDiagnosis #AutismAcceptance #AspergersSyndromeAwareness #ADHD #happy Holidays

    Community Voices


    I really need some ideas on how to get my 6 yr old son to poop in the toilet! He goes pee in it just fine. He used to be constipated all the time. I figured that was the reason but now I have fixed that problem and still can’t get him to poop in the toilet! Please any help I’m grateful for! #Autism #AutismDiagnosis #AutismSociety #ParentingAutism

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    Community Voices

    ASD diagnosis in late life and masking

    I have recently been diagnosed with ASD at the age of 47. One of the aspects of autism what I wasn't aware of is masking. As I've travelled back in my mind I realise there are so many examples where I've got through using masking.

    I remember as a teenager I was told that I don't make eye contact. I find it really difficult and mentally draining trying to make eye contact, but end up forcing myself into it, especially when dating.

    I have also had a lot of confusion about my sexuality. At one point I came out as gay and ended up building up this whole persona based on how I thought gay men act. In the end it was too much maintaining the personality I created. I accepted that I was actually bisexual, but lean more towards women.

    When dating I try so much to be myself, though I find myself trying to act as "normal" as possible, making the whole experience exhausting.

    I am still trying to understand who I am, but with a diagnosis I can begin to understand why I am different and how to accept who I am and understand what it is to live with ASD. #ASD #AutismDiagnosis #Sexuality #Masking

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    Community Voices

    Advice needed

    My #Depression is severe, has been impacting my life for nearly a decade
    I'm treatment resistant, probably because I've only just been diagnosed with #AutismDiagnosis so nothing was ever changed to help me understand it and of course meds don't work
    I cannot take this anymore
    Every single time I ring to speak to a doctor they say there's nothing else they can for me
    They won't try anything

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