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Should I continue with the formal autistic identification process?

Ausomely Autistic

Hello fellow autistic people. I was wondering whether you could help me with your wise advice.

 I started the formal autism diagnosis process about 2 years ago and I am yet to have any initial assessment/any progress. I  am not sure whether to continue with this progress or just give up.

My autistic identity is very strong and positive thanks to my connection with my own neurokin (including this wonderful autistic community) and I feel like the diagnostic process will be very negative and unnecessarily pathologising. I feel like I have learned so much about my autistic needs and our culture by being part of this community and I feel like formal identification will almost ruin my sense of autistic self.

If you want to share, what were the benefits of formal autistic identification for you?

Thanks.

Parents

  • I also waited more than two years, not to mention the several years it took to book the first doctor appointment.  Got my diagnosis about a month ago.  It's been a huge journey.

    Some of things it means to me:

    1) It gives me more authority to act as an autistic advocate.  It may not matter among out community, but it gives me more leverage at work to say "this child needs this kind of support because I recognise this behaviour and it means this..."

    2) I can be included in acadenic research projects that will benefit other autistic people who come after me.  I've already volunteered for one such project and am considering a second.

    3) I can have something in my medical records.  Usually I manage life fairly well at my own pace, but there are a couple of times when I've been in hospital and become overwhelmed and non-verbal or slow to process information.  As I get older and may find myself in that position more often, I hope that having my needs in my medical notes may help facilitate things.

    4) It was tough jumping through the hoops to get there, but now I can say to other autistic people going through the same thing that I've been there and it was worth it.  Partly for my own peace of mind and partly so that others will take my claims more seriously. There's a kind of kinship in having lived through those experiences and attitudes.

    5) I am not a huge fan of my diagnostic report, but I have made the choice that I will not let it define me.  These are someone else's observations which give me a helpful understanding of what ithers might see in me, but they are not who I am.  I am still in charge of my own identity.

    6) It's given me the confidence to ask for a few minor accommodations at work.  It's not much- the big one was being allowed to text instead of phone in when I'm ill, but I'm also trying to campaign to get the dress code altered.  I have pink hair which I have to keep covered to conform with their sense of "normalcy" but I am arguing that this is discrimination as my hair colour is a support strategy that I use to deal with being autistic.

    So in summary, it's about more than just me, it's about how having that label enables me to achieve more for my community.  Hopefully. ;)

  • in reply to Glitter
    Glitter said:
    being allowed to text instead of phone in when I'm ill

    I need to try to get this adjustment at work! Calling up sick on the phone terrifies me, so many times I have forced myself to go into work even when I am really really ill cos I am too scared to call on the phone

    Would be tough for me to get adjustments at work though as I work with Special Needs kids and I feel like the bosses would turn round and say "if you need all this help then maybe your not stable enough to help them" Maybe thats all just in my head though I dont know

Reply
  • in reply to Glitter
    Glitter said:
    being allowed to text instead of phone in when I'm ill

    I need to try to get this adjustment at work! Calling up sick on the phone terrifies me, so many times I have forced myself to go into work even when I am really really ill cos I am too scared to call on the phone

    Would be tough for me to get adjustments at work though as I work with Special Needs kids and I feel like the bosses would turn round and say "if you need all this help then maybe your not stable enough to help them" Maybe thats all just in my head though I dont know

Children
  • in reply to Billy87

    Inclusion is very important to me.  If your job provides support for children, then they should understand that adults need support too.  You are protected under the equality act and they should make provisions if you need them.  Texting to call in sick won't stop you from doing your job and if they think it will then they don't sound like the right people to be supporting children with extra access needs!

  • in reply to Glitter

    Im the same, I get them in a way the other staff dont cos they are like me. So many teachers just dismiss autistic kids as "annoying or attention seeking" and it really upsets me

    Interesting to know that your employers were willing to make those adjustments for you, gives me hope that my next job might too

  • in reply to Billy87

    I also work with special needs kids.  It's actually been said by a couple of colleagues that I have an unusual level of connection with them.  I think it's because I just "speak their language."