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New diagnosis

Alice116
over 7 years ago

Hi,

I was directed here by a "support worker" as my little daughter has now got an initial ASD diagnosis and we are now waiting for the full reports and paperworks to come through - we are hoping that everything might be in place for next September but I really have no idea of timescales or anything as is all so new!

I feel devestated by this being confirmed but it wasn't really a suprise at this point. Nothing is going to change for her and out little life is still lovely. I am upset because she is now 5 and as she has got older she has become more and more profoundly noticable as "different" - people don't understand her. Children won't play with her and adults are not kind to her. She doesn't mean any harm but stands too close or "talks" too loudly, she just doesn't understand. I get what she means most of the time but school has been terrible for her confidence as they try to change who she is and can't get her to conform so punish and she is so sad. What happens when I'm not there? Or something happens to me (I'm not going to live forever)? It's just us so who will protect her?

She is the best little person and is making progress in her way - I can see it - but she needs patience and compassion and if she doesn't get that now and with ASD the prajectory of progress isn't suddenly going to be "normal" - what does her future hold?

Are there groups or lessons where I can learn ways to help her understand the world or places she can play without people thinking it's odd that she chews things still?

As I said, I think she's amazing but the world is not a kind place to her now and I don't want to lose who she is just change the world for her! 

  • over 7 years ago

    i am autistic. 

    i have an IQ over 170. i am a specialist in my chosen field.

    dont let anyone undermine your confidence with statements like it's your fault. that's just their opinion. is it your fault you have a happy loving child? at the end of the day, your child is yours, not anyone elses. 

    idea re: schooling: google specialist schools/colleges for autism in your area, speak to them for advice, you'd be surprised how helpful people are, especially on the phone. always go to the source for information, don't merely accept the info you are given by 'the system' - a search i just did for my area brought up several specialist schools and colleges, they are out there...

    always get as much info as you can. equip yourself.

    advocacy services can also help you with things like provisions upon death or in event of accidents etc. this will give you peace of mind if the worst happens. do a will, have it done by professionals, don't do an on-line one, advocacy services can help with advice on this.

    a note re your daughter and her development: don't be surprised if she suddenly starts talking. try writing first - my communication capacities were written first, then spoken. try her with 'play' speaking, singing is good, learning by singing. 

    she sounds delightful, happy and i am so pleased she has such a wonderful mother. good luck to you and come back any time to ask whatever you need. we are here to help.

  • over 7 years ago

    Thanks M,

    It's very reassuring - I love my little L just as she is. The diagnosis itself isn't what is concerning to me (I mean I do have thousands of questions on that but that part is not a "concern") - the diagnosis is a label of why she is not what she is.

    I am pleased that she can be OK with no friends. It does worry me how she will cope with the world by herself because I'm not sure I can change it for her in time - if I could I would but I also realise that is not rational!

    I wish I could HE but as the only adult in the household work is compulsary. At home we have no issues really - we've constructed a routine that works for us both and we get on just fine :). There are things that have been difficult (like cleaning teeth/brushing hair) but we've got round them - mostly with them being a routine and her having choices - but there are things she loves to do like being outside and she is affectionate to me.

    She was non-verbal for so long that we learnt to communicate without her using language. Her school said I was too accomodating and it was my fault she wasn't ready for school so the diagnosis will help there but I disagree anyway as our relationship is great.

    I have hope that being diagnosed will help other adults begin to understand her but I also worry that she will struggle. Sorry to go in circles - I have no real support at the moment and she is everything to me.

  • over 7 years ago

    Hi Alice,

    My mum didn't send me to school when i was 4, as I wasn't ready! I only started talking at 4, and couldn't whisper or control my voice.  However, I did OK at school, I got four o-levels, I am 54, and am now doing a PhD!  It has taken me time to get these things sorted, but one thing my parents did was not force me to be normal.  They loved the way I was, thank goodness.  You need support of other parents or autistic people themselves.  My friends are talking about going to Autscape in Northampton this year.  Sadly I can't go, but it may be something you can do at some stage in your daughter's life, so she can meet other autistic people in our own environment.

    I didn't have friends, and still don't.  I manage just OK without them.  Don't think in a neurotypical way (non-autistic) for your daughter, it may just cause her stress.

    Take care of yourselves,

    M.