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Newly diagnosed son, am totally lost, any advice or support is so very welcome

Victoria

hi everyone

We are right at the very beginning of our journey.

My 9 year old son was diagnosed a week ago with autism and language disorder associated with autism.

This has all happened within the space of a couple of months, from me having a quick word with the teacher about wondering if he has some sensory issues going on, to the teacher saying 'oh i assumed you knew he was on the spectrum', a few meetings with the senco at school, and his assesment i managed to scrape together enough money to have it done privately (lets just hope my car doesnt breakdown anytime soon!) 

Now he has a diagnosis which is great for moving forward but..I am completely overwhelmed. I have no idea what the next steps are, other than a meeting with the school senco on the first day back in september. Feeling very lost and very alone. I keep telling everyone its fine, its all fine. But you know what, its not fine, its not fine at all. I feel so guilty that this hasnt been picked up sooner, how ive missed so many red flags, how ive just put all the little things down TO quirks, how i havent joined the dots.. the list goes on and on.

I just wanted to reach out to other parents, i feel so overwhelmed, Im ashamed to admit I  know nothing about autism and I dont even know where to start? There is so much information but its all so overwhelmingi dont know where to start? feel like an utter failure and i dont know where to turn.

Any advice or support is more welcome than youll ever know xx

  • Autism as it exists in real life, and not as portrayed by Hollywood, is simply not widely known within general society. Do not beat yourself up about not recognising it. My daughter was 19 when diagnosed, and I was diagnosed myself at 59.

  • in reply to Mariusz

    To quote my GP, she thinks I "suffer with autism".  God help us, if our GPs think like that!

  • Good God!  They just assumed you knew he was on the spectrum????  The school picked up on that and then just decided he was without bothering to tell his mum or refer him for an assessment!  Unbelievable!  Well, well done that they picked it up, but they can't diagnose and are supposed to refer for assessment and I think they should have told YOU about that.

    First off though, you are NOT a failure by any means.  You acted straight away and sacrificed a lot to get him the diagnosis he needs.

    As for the rest, no panic!  The site is here.  the NAS Website is one of your best sources of information and we autistic grown up children and a fair few parents of autistic kiddies are here to help.  Make a list of the problems you feel your son is experiencing and we can maybe help.

    And yeah!  A lot of little traits are just quirks - just us doing our autistic thing in our own unique autistic way, no biggie, even a boon and sometimes funny.  Other stuff though can cause very real issues.  What are you worried about most?  Let's start with that.

  • in reply to Mariusz

    ahh ok yes I see what you mean.

    Thank you for replying, it means alot 

  • in reply to Victoria
    Victoria said:
    Sorry if my original post came across

    It didn't,

    people panicking sometimes act irrationally, so following ''Better safe than sorry'' I just mentioned it to make sure you know,

    most of it, and what you will hear from others, especially doctors, is to make you panic

    remember if they say person with autism they don't mean well

    I needed only awareness of double empathy problem and help in finding work

  • in reply to Mariusz

    Thank you for your reply, i really apprciate it.

    Sorry if my original post came across as if I felt there was something wrong with my son. Thats not the case at all, hes amazing and I wouldnt change anything about him, ever. I was just trying to explain everything thats happened in a very short space of time.

    Im just struggling with getting my head around it all and where to even start. I want to know how i can help him, but i have no idea where to even start. Its all very overwhelming. I feel incredibly alone.

  • start from saying  autistic instead of person with autism, including your son 

    there is nothing wrong with your son

    perfectly normal autistic

    autistic and allistic find it hard to communicate without conflict if they don't know about it

    so you and him should become aware of it, for starters,https://www.youtube.com/watch?v=9j6fxcRXF60 

    don't push him to talk about feelings, most likely it's a gordon's knot for him, so he won't be able to answer anyway