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Daughter with autism

rachael87
rachael87 Member Posts: 2 Listener
edited December 2020 in Autism and neurodiversity
Hi, I'm new here, hope everyone is doing ok thi evening.
Wondered if anyone could help me please
My daughter is 10 I've been fighting since she was 4 as I knew something was wrong with her. She wasn't able to speak until nursery (had to have speech therapy) even now she has extra help In school and is quite behind, anyway I saw a new doctor beginning of this year, who strait away said she has sensory disorder, now she been accepted onto the panel for autism,  I just wondered what to expect now. This has been a long journey and I'm so relieved to be getting somewhere. 
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  • Ross_Scope
    Ross_Scope Posts: 5,790

    Scope community team

    Hello and welcome to the community @Rachel88

    I'm glad to hear that your effort and fight is helping you get somewhere towards getting your daughter any help and support she needs.

    Personally I'm not sure what the next steps would be in your situation, but I'm sure others will have experience to offer. Did your GP not advise on the way forward? And have you had conversations with the school about how they could best help her?
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  • poppy123456
    poppy123456 Member Posts: 25,770 Disability Gamechanger
    HI,

    Firstly let me congratulate you in not ever giving up on your daughter! The part of your story that you told sounds exactly like my story with my daughter, only your daughter is younger than mine. My daughter is now almost 20 but i spent 14 years fighting for her to get a diagnosis.

    Like your daughter she couldn't speak until she started school, which was 4.5 years old. She did have speach therapy when she was about 3 but sadly that didn't continue, which is a very long personal story, of which i won't go into details here. She couldn't read, write, spell her own name or count to 10 and by this time she was 7 years old. Her speach was improving by this age but was far from a child of the same age that didn't have a disability.

    Fast forward many years later and many times of literally pulling my hair out i finally found someone that believed what i was seeing because they actually seen it theirself and this was after just seeing my daughter once. By this time she was just over 16. She was immediately referred for a ASD assessment and went straight onto the waiting list, which was a few months at that time. I was told that because of her age she could actually miss the first stage of the assessment.

    Now this process maybe slightly different for your daughter because she's younger. They visited her at college quite a few times to observe her in class and on break times, so they could get a picture of how she was during those times. How she interacted with other people. I also had 2 appointments where i was also asked questions about her past history that went into a huge amount of detail, from the time she was born right up to the present day.

    Finally my daughter had a visual assessment, during this she was asked various questions. Shown various props and asked to imagine certain things and was asked to describe various pictures. This whole process took about 11 months, which included the waiting time for the assessment to begin.

    A few weeks later we had a visit at home where we were told that she did indeed have ASD and a learning disability. Finally, 14 years of fighting was over.

    Did it make a difference to us that she was Autistic? No, of course it didn't. Why did i fight for something that i knew without any doubt that she had ASD and would a diagnosis change anything? I fought because i needed answers. I needed closure. I blamed myself for many years for the way she is. Constantly thought could i have done anything to prevent this. Infact i actually asked that very question why we had the diagnosis. Of course the answer was "no, it's definitely not my fault". was the reply i got. Did i feel better? Too right i did because i knew i'd won my battle and i'd do it all over again, if i had to.

    There's some information here that may help you understand the process. https://www.nhs.uk/conditions/autism/getting-diagnosed/assessments/

    Hope this helps :)



  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,670 Disability Gamechanger
    Hi @rachael87 -  welcome to the community from me also. I see you've had a lot of really useful info from Poppy, which I'm sure you'll find helpful. There's nothing better than hearing from another parent who understands what you're going through. I hope you & your daughter are looking forward to Christmas, & hopefully a better New Year for us all. :)
  • Tori_Scope
    Tori_Scope Posts: 7,086

    Scope community team

    Welcome to the community @rachael87 :) We look forward to hearing from you soon. 
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  • rachael87
    rachael87 Member Posts: 2 Listener
    Thankyou for being so welcoming, it's nice to have someone who knows how hard this is so first thankyou poppy, it has been long road like you say and I'm happy you now have answers (later than you would have liked) I'm just hoping now I actually get some answers too, poppy does your daughter have sensory disorder too? Its more noticeable now my daughter is getting older, flapping of wrists, random screaming just wondered how I could try and control it (if its possible too) xx looking forward to hearing bk from u

    Hope your all looking forward to xmas, my daughter is so excited 
  • poppy123456
    poppy123456 Member Posts: 25,770 Disability Gamechanger
    Sorry for the late reply, i've only just seen this.

    No, my daughter doesn't have sensory issues. She has ASD and a learning disability. Yes, it can become more noticeable the older they get, at least it did with my daughter too. Girls are also very good at hiding things too, which is why very often girls are diagnosed a lot later than boys.

    I hope you get some answers soon.

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