I have an undiagnosed (as of today) child and we are both struggling through waiting for help from whatever services we can get help from.

It's only since knowing something was wrong, has it highlighted the lack of actual help a doctor can actually give whilst waiting for help from any services they may be guiding you towards.

Why no booklets, why no structure to follow, no it's I'll refer you to cahms or whatever. As much as my child is struggling I feel like everything I knew about parenting seems to be now insignificant and I now need to learn how to help what can only be classed as someone with a disability?

Why is the world still struggling to address the fact that mental health is as much of a problem as a physical disability? I know my child, I know this is out of control for them. It's not made up, we aren't pretending?

Im really struggling to keep things on an even keel at the moment mood wise for both of us and I just thought I'd put this out here.

Thanks for reading anyway.

  • It is bad it took from year 3 till year 11 to get my son his diagnosis, we were then meant to be on a course to help understand how to help him which has now been two years so doubt that will happen. I am lucky as I work in an autistic provision so I am skilled but for my husband who did not see it and has took him years to realise he sees things differently and would have liked to have had support has been let down greatly.  We asked to be referred for melatonin as my son would like to sleep now he is at college, he always said he did not want medication before.  After a year we find out the pediatrician had taken us off the list without letting us know and when the doctor re referred wrote and asked if they could ask us if we really would like the appointment as when he turns 18 they will not prescribe it.  Frustrated by the system is an understatement.  And the answer was YES lol!

    My advice is take away the stresses and they then are more able to cope and will surprise you.  My son did not come to his nan and grandads for take away so we ordered one to the house.  I did not expect him to phone us (He has never phoned before) he phoned to say a new film from one we had seen before he spotted on Netflix. He was very excited.  Funny though he did not want to watch it today when we got back but I am so pleased he can use the phone and will when he is happy.  

  • Hi, everything you describe is so familiar to me. Me and my wife struggled for years to get adequate help for own son . We went through what I would describe as 'the washing machine,' in that the family just goes round and round the system of professionals but no-one actually does anything, they just signpost elsewhere. So we learned two things: always be really pushy, annoying, and assertive (which does not come easy to either of us) and never believe that the system works. Once we realised this it meant we got more proactive. We live in Devon, and it's a lottery as to what school you get, what services are on offer and how much funding there is. 

    You are right to feel the way you do. I was there once, six years ago. It's so difficult at times, and as a family we found ourselves becoming cut off from others. Now I know, looking back, that it does get better. 

    I would be happy to talk privately via email if you like, I'm in teaching and my wife works in social services, so between us we knew a lot. I would often see parents going through similar experiences but who didn't know how to get what they needed. 

    Do get in touch if you like. I promise you it gets better. You can and will get through it as a family and your child will flourish. I'm on:  [edited by moderator].

    Good luck, 


    Edited by Elena Mod