Published on 12, July, 2020
Hi everyone, new to the community!
Not sure what I'm hoping for ( a magic wand would be amazing if anyone has one) but here goes.
My 15 year old child has been struggling for almost 2.5 years with mental health, GP referred to CAMHS and we are now seeing a psychiatrist who has raised the question of ASD. School has been less than helpful with sorting out a referral as my child is not attending so they are arguing over who is supposed to submit the referral.
Got ourselves a family support worker who is fab but there's only so much they can do when other services are not willing to qork as a team to try and help.
I'm at a loss as to where to turn anymore, my child is non verbal and has been for nearly 6 months now. Everyday is a struggle and life as we knew it has completely disappeared.
I've looked at private diagnostic services but everyone is saying that the NHS won't accept it, the cost is high aswell, not that you can put a price on getting your child the right help and support but I can't even get the referral process started.
Not even sure why I'm here but hoping that maybe someone else is going through the same/similar with trying to get help and has some advice or even a positive outcome from this.
Sorry for the long story, don't really feel like I have anywhere else to turn right now
N
Hi - I’m sorry your child is struggling and that you’re also struggling to help and get support. Has your child been referred for an autism assessment? It would be good to do that if you haven’t already. The main thing is that you do all you can to reassure and give comfort to your child - in whatever way you can. Education is important but sometimes it has to take a back seat by necessity. There’s lots of support on here. Best of luck x
Thank you for your kind words, it's getting the referral that we are struggling with. School won't do one as they aren't attending and CAMHS are saying its the schools responsibility.
Tomorrow will be another day of phonecalls to try and get an answer one way or another, it's looking more likely that I will have to deregister them from school and self refer( the very last thing I want to do though).
Thank you again for replying x
I think it’s changed since my son was at school. He was initially referred through the school to Camhs but when they were dragging their feet regarding a diagnosis I phoned the NAS helpline (which shockingly has closed now) and they advised me to go to the gp and ask for a referral to a different part of the nhs (I think it was called a community paediatrician but I can’t quite remember now as it was over 10 years ago). I think it’s outrageous hat there is no straightforward and easy pathway for you to take - they should be making this process easy for families - not difficult! You’re dealing with enough as it is without having to fight for a simple referral! I’m so sorry - it shouldn’t be this way. My eldest has just been diagnosed in his mid twenties - so both my children have a diagnosis now. Overall I would say that the main thing is to always focus on helping to reduce the pressure on autistic children. Most autistic people really do not thrive under pressure - and school puts autistic children under a huge amount of stress and pressure. Looking back I wish my youngest had been able to attend a specialist autism school - we struggled along with mainstream school but it was never ok really. Sometimes it’s just too much for many autistic children. My eldest coped better in mainstream school - but at some cost to him. It’s so difficult. What’s most important is that our children know that we are 100% on their side, and know that we will always listen to them and not push them to deal with more than they can cope with. That they know that we’re always there for them, and will back them up, and defend them, and put their well being before what anyone else thinks or expects of them. They need that, and they deserve that, because they are dealing with so much.