age of diagnosis — Scope | Disability forum
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age of diagnosis

Biblioklept
Biblioklept Community member Posts: 4,406 Disability Gamechanger
I know girls with autism or adhd statistically get diagnosed later in life than boys but wondered if that's true for those on here or people we care for? I didn't get my diagnosis of both ADHD and autism until I was in my early 20s and wish I'd know when I was at school or earlier. I think I would have more confidence if I had been.

Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Hi @Biblioklept. Great question. I can only talk for myself as a female with autism.

    I can say I was diagnosed much younger than the statistical average for females - probably because I was always very poor at masking!

    However, I had all the prejudice leading up to the diagnosis still (e.g., "the rude child")  :)
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    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • 66Mustang
    66Mustang Community member Posts: 13,137 Disability Gamechanger
    edited June 2022
    Just sharing in case it makes you or others reading feel any better but I was diagnosed age 9 and it made absolutely no difference to me at school.

    At my school they treated the situation based on the child’s needs and behaviour and not the condition. A bit like a PIP assessment where they look at how your condition affects you rather than your diagnoses. A diagnosis doesn’t automatically qualify you for help.

    The school said that because I was doing well academically and wasn’t disruptive there was no reason for them to offer me any assistance. Basically if I wanted help I needed to either fail my exams on purpose or start misbehaving in class!

    Obviously other schools may have had different policies but that was my experience!
  • 66Mustang
    66Mustang Community member Posts: 13,137 Disability Gamechanger
    Also as for confidence it actually knocked my confidence as as a child I thought there was something “wrong” with me; but again, that’s just my experience, it may well boost someone else’s confidence to know what their condition is!
  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
    Hi @Biblioklept. Great question. I can only talk for myself as a female with autism.

    I can say I was diagnosed much younger than the statistical average for females - probably because I was always very poor at masking!

    However, I had all the prejudice leading up to the diagnosis still (e.g., "the rude child")  :)
    Did you carry any of that prejudice with you or were you able to let it go once you understood yourself more?
  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
    66Mustang said:
    The school said that because I was doing well academically and wasn’t disruptive there was no reason for them to offer me any assistance. Basically if I wanted help I needed to either fail my exams on purpose or start misbehaving in class!

    Obviously other schools may have had different policies but that was my experience!
    Rather than school support and stuff  I was thinking more understanding of the way I was by my parents although that is probably wishful thinking. I reckon I would have had the same level of assistance at school, I didn't misbehave and was academic so wouldn't have been noticed for any extra help. Maybe they would have tried more to help when I started not turning work in and started not going to school at all but there's no way to know lol
  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
    66Mustang said:
    Also as for confidence it actually knocked my confidence as as a child I thought there was something “wrong” with me; but again, that’s just my experience, it may well boost someone else’s confidence to know what their condition is!
    See I guess it's different as I got my diagnosis as an adult, but all my childhood I thought there was something wrong with me. I knew I was different. I remember being really young and thinking maybe I was an alien and no one told me and that's why I didn't seem to get stuff like other people did. And then I got labelled lazy and stupid (because no common sense) and rude and I believed those labels. Getting a diagnosis as an adult finally helped me realise I wasn't stupid or rude or lazy but autistic and had ADHD. It was so powerful that instead of having negative labels I finally understood why I was different and weird and "wrong" and it wasn't that I just needed to try harder or something that was in my control at all. It also meant I could finally find work arounds or "hacks" to counter some of my more negative ADHD traits.
    So I assumed if I'd known as a child then maybe I could have not believed those things about myself for so long. But actually, that's just viewing it from adult perspective, as a child having a diagnosis could have made me feel 100x worse about myself. I've no way to know.
  • 66Mustang
    66Mustang Community member Posts: 13,137 Disability Gamechanger
    Oh OK yes that makes sense. I think having my family understand that something was different did make a difference for me and enabled them to give me better support. My parents definitely pushed for support for me at school, though sadly it didn’t get anywhere!
  • poppy123456
    poppy123456 Community member Posts: 52,446 Disability Gamechanger
    My daughter finally had her diagnosis of ASD and a learning disability at age 17. I fought for 14 years for answers and no one ever believed me. She couldn't speak a single word until she started school and couldn't read, write, count or spell her own name at the age of 7.
    I was told many many times that i was being an over protective mother and the teachers at school knew her just as well as i did. They told me she was just a shy young girl who didn't speak to anyone and liked to spend her time alone, even at break times.
    CAMHS were as much use as a chocolate tea pot and we simply got no where. She went to school and completely hid everything until she came home. Every morning i would have screaming, shouting, throwing things around her room and other things (which i won't go into details with here because it could upset others). It was a complete nightmare and i was a single mother with 2 other children. I can't tell you the amount of times i would sit down and break my heart because i had no one to turn to and no family for support.
    I removed her from school at the age of 15 and she didn't sit any of her GCSE's. I home schooled her for 10 months. We moved 300 miles to a different part of the country and it was there that i finally started to get some help.
    I always knew in my heart that something wasn't quite right and wasn't going to give up until i had some answers. For this reason it didn't come as any surprise when the offical diagnosis came when she was 17. I even contacted her secondary school and made an official complaint about the way we were treated of course not much was done other than an opolodgy.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • woodbine
    woodbine Community member Posts: 11,329 Disability Gamechanger
    @poppy123456 definitely a case of mum's know best, it must have been very difficult for you.
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  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
    That's made me so angry for you and her @poppy123456!!!! I think some people would give up and just think maybe they were wrong or there was no point. Schools are so quick to ignore what seems to obvious unless a child is causing the school issue too :( I've read that masking is why a lot of girls don't get diagnosed until later and because they don't typically cause trouble they go missed and under the radar!!
  • poppy123456
    poppy123456 Community member Posts: 52,446 Disability Gamechanger
    @woodbine thanks. Yes, it really was. @Biblioklept thanks. Giving up just wasn't even considered. I was asked a few times "what difference would a diagnosis make" well, it made a lot of difference and it gave me answers to all my questions. I'd advise anyone not to give up, if you think something is wrong then fight.
    When we had her diagnosis i was told that very often girls mask it really well.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    I would say I probably carried it with me, unfortunately, @Biblioklept. However, these days I use it to challenge people and better other people's experiences!  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Thank you @Biblioklept:)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • NonbinaryCode
    NonbinaryCode Community member Posts: 7 Listener
    Heya, I am new here. I got my ADHD diagnosis about one year ago and my ASD diagnosis about a week and a half ago. For context, I'm currently about 21 and a half.
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    Those are both pretty recent @NonbinaryCode. Getting a new diagnosis can bring about some mixed feelings for some people. How do you feel about being diagnosed with ASD and ADHD?
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  • wendy41
    wendy41 Community member Posts: 224 Pioneering
    edited October 2022
    66Mustang said:
    Also as for confidence it actually knocked my confidence as as a child I thought there was something “wrong” with me; but again, that’s just my experience, it may well boost someone else’s confidence to know what their condition is!
    See I guess it's different as I got my diagnosis as an adult, but all my childhood I thought there was something wrong with me. I knew I was different. I remember being really young and thinking maybe I was an alien and no one told me and that's why I didn't seem to get stuff like other people did. And then I got labelled lazy and stupid (because no common sense) and rude and I believed those labels. Getting a diagnosis as an adult finally helped me realise I wasn't stupid or rude or lazy but autistic and had ADHD. It was so powerful that instead of having negative labels I finally understood why I was different and weird and "wrong" and it wasn't that I just needed to try harder or something that was in my control at all. It also meant I could finally find work arounds or "hacks" to counter some of my more negative ADHD traits.
    So I assumed if I'd known as a child then maybe I could have not believed those things about myself for so long. But actually, that's just viewing it from adult perspective, as a child having a diagnosis could have made me feel 100x worse about myself. I've no way to know.
    @Biblioklept How did you go about getting a diagnosis as an adult and how long?
  • Biblioklept
    Biblioklept Community member Posts: 4,406 Disability Gamechanger
    So sorry @wendy41 I've only just seen your question!!

    For ADHD I went through Right to Choose and was seen privately for free so in all it took about 6 months. https://psychiatry-uk.com/right-to-choose/ (Other places offer right to choose too, so worth searching online).

    They now do autism assessments through right to choose as well but back when I had my ADHD assessment they only did ADHD. But they wrote back to my GP and said they also suspected autism, so GP referred me to local NHS autism provider, this was a much harder and longer process and took about 2-3 years because wait times were so long. 

    I'd definitely recommend right to choose for anyone that suspects they may be autistic or have ADHD <3 

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