Really struggling with Everything

Hi all I'm new,..

I'll try explain the best I can,I'm looking for any helpful advice.

My son is 12,He's my second child..By the age isnwas around 4 I had concerns about he's behaviors and went to the GP that's when we discovered he was actually deaf,He was fitted with hearing aids and I thought things would improve..But they never did so I went back to The GP and they got us to see,A specialist,The service was horrendous! But we kept all our appointments which took place every 6 nths this went on until my son was about 7  then I received a letter saying He's got OCD and he's been discharged from the service,I wasn't happy with that so asked to be referred straight back,We started appointments again and was discharged again,I went back to the GP and said I want to be referred to a different service I want a second opinion.. School,He's teacher of the Deaf,Myself was all saying he's got autism.. school wrote to the GP etc..The pandemic happened,But we got and appointment with a new specialist and he took my son's case to a medical panel,A panel of 7 people,They all agreed my son shown significant signs of autism and couldn't understand why it's been missed..we go he's diagnosis in March 2020..

Since he got he's diagnosis,It's like we have been abandoned,He's had many other professional involved since been diagnosed,We have been told he's development is behind,He's understanding is behind,He suffers with social anxiety and separation anxiety,He had to have an EHCP set up in school and as to have a teaching assistant with him 5 days a week through out he's school day,.

He had a very bad patch last year where he was feeling suicidal,I rang the GP crying etc..They refused him any help with he's mental health,Which is shocking,3 times he's been refused help with mental health,I've challenged it and was told Autism is the problem for him not he's mental health...He's Autism is effecting he's mental health greatly,He upset all the time,Sometimes he can go in to a low mood and it last for days,he won't wash,Brush teeth or nothing,.

I've asked can he have counciling,for someone trained to talk with him and explain everything to him, Even me and explain autism to me to I can understand him more,I've been ignored,It's like now he's got he's diagnosis we are on our own 

Most days I spend in tears seeing my son struggling with every day life,stress, Anxiety.

Not been able to have the independence a 12 year old should have. It's such a same..

And I can't get help from no where.I try my best with him and everything I know about autism is what I've found myself,I've not even had things explained to me.

  • I'm sorry you're going through this. This sounds awful. I know a little about what it feels like to be "failed by the medical community." I want to commend you that you are navigating through the best you can & trying your best to seek the best help for him. And now, he's got a diagnosis thanks to you. As an autistic person, I get stuck on why these things happen, are allowed to happen. My brain can't understand the injustice. For whatever reason, just take it one day at a time & navigate through this....he is lucky to have you, as you are his health advocate. It seems now, in these busy/rushed/hectic times---that's what we have to be to ensure things get done right--we have to be our own & our families own health advocates. Hang in there.

  • Dear NAS73636,

    Thank you for sharing this with our community. While we are waiting for the community to respond, you may like to have a look at the mental health section of our website which has useful links to information and advice about a range of mental health issues: https://www.autism.org.uk/advice-and-guidance/topics/mental-health

    If you feel that you might need some support with your mental health, you can find advice and information on how to go about seeking help, including links to other resources and details of helplines and listening support services, here: https://www.autism.org.uk/advice-and-guidance/topics/mental-health/seeking-help.

    I hope this helps!

    Kind regards

    Eunice Mod