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New to this

Chivvy

Hello

I'm the mum of a 15yo girl only just going through diagnosis.

I'm new to this it's been a terrible journey to diagnosis and when I get these moments to myself (rare) I feel such a sense of loss, a real sense of grief. People say your child is still the same child but I can't see that as mine has masked for 15 years and now doesn't mask (which is good) but that kind of makes her different to the way she was. And I know we're in the thick of bad stuff right now and it will get better.

I just wanted to reach out, see if someone out there knows what it is to feel lost and loss in the wake of new diagnosis after 15 years.

 And actually I just want to state it fairly anonymously that this stuff hurts. 

I know I'll feel better at some point.

Thanks for reading.

  • Hi, I've just been diagnosed at the age of 25. I wish I had known sooner- I think that would have really helped me and would have helped avoid some of the challenges I am facing now. So I think it is a very positive thing that your daughter is getting an assessment now rather than later on. I am also still coming to terms with being autistic- I have gone through all kinds of emotions from doubt to a sense of relief and a sense of belonging, feeling confused, overwhelmed, broken, more accepting of myself. But overall knowing that I am autistic is positive. There is nothing wrong with being autistic. In fact some of the traits can be advantages (they are for me - my hyperfocus and love for details and special interest in science make me good at my work as a scientist) and of course there are challenges but I think you are much better equipped to deal with these if you know that you are autistic and understand why some situations/things might be more difficult. I wish they would stop calling autism a disorder and instead call it autism spectrum variation. How is your daughter coping with it? 

  • I’ll be brutally honest here - I sometimes hear people talk about feeling a sense of ‘grief’ and ‘loss’ when their child is diagnosed with autism and I find it quite upsetting. Imagine if your child felt like that about you if you received a diagnosis of something like depression, or dementia? You need to be 100% on your daughter’s side - being autistic is an intrinsic part of your daughter and if you truly love and accept her you should accept and love  ALL OF HER - not just the ‘easy’ parts. Embrace everything that your daughter is - it’s impossible to separate autistic people from their ‘autistic-ness’ - if you can’t love her autistic identity then you don’t love her. 
    I understand it can take time to adjust but she needs you to be 100% on her side. It’s harder for her than for you and you need to step up and be there for her, and accept her on every level. 

  • My experience is that I suspected something was different, which after research I thought was ASD quite a few years ago, but after a lot of challenges finally got a diagnosis 2 and a half years ago. 

    Having a diagnosis has helped to get more understanding at school although he still masks to an extent there.

    There is a sense of loss in some things that we cannot do and also for him as he wishes he didn't find some things so hard.

    I understand what you are saying and my experience has been that in the end you try to look for the positives to celebrate and particularly understand that when things go wrong it is not intentional. It is also difficult as a teenager trying to have as much freedom as others, but needing more support than peers.