Published on 12, July, 2020
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!
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.