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Navigating the right to choose pathway

Cloudbaby1975

Today my 17 year old daughter who is awaiting autism adhd assessment became very overwhelmed because she, like me is really worried about the whole assessment process. After years of being misunderstood and trying to access support and being denied in the past, there is this fear that no matter what we write on the forms, whatever documented evidence we provide, it won’t be enough. We are hanging on in there, doing what we’ve been asked, completing necessary forms etc. But how do you boil down all of the moments over a life time into something coherent. It just feels impossible. 

  • in reply to Draziwekans

    Thankyou. Sometimes it all feels so obvious and how could they possibly not notice and at other times your right,it’s the what ifs that derail me. As long as I get plenty of sleep I don’t worry so much and I’m just happy to go with the flow. Find it so helpful chatting with people on here. I cannot cope with Facebook so  finding this group has been a godsend! 

  • I had trouble over the years reaching out for support, clarity or confirmation.  Which mean't long periods of time before I would approach the subject with GP's once again. I'm not particularly good at expressing any worries or concerns anyway so negative experiences prevents you further. I must say this last time was surprisingly positive, with the GP raising a right to choose referral, that being completed, I thought the waiting would be longer than it turned out, and the appointment wasnt too horrendous either. 

    I can appreciate your concerns that how do you fit everything in that you/your family can tell them from all the preceding years, all the situations, mannerisms etc that you sometimes only realise when a similar one crops up in something someone says, or an article etc.

    I believe a lot was 'missing' from my assessment. However, they are professionals and pick up on far more than sometimes we can think.  Try not to be too anxious about it. Look at the guide and maybe be prepared but dont worry if you cant think of everything. The assessment covered the forms, even delving a bit deeper, also asking you questions, maybe in a couple of ways, also look at how you present, look, talk, act etc. Try not to think of the what if's. It's scarey wondering if you'll be misunderstood again.

    Good luck

  • Hi  , I’m sorry you and your daughter had negative experiences trying to access support in the past. In addition to the response you’ve had, you may find it useful to have a look at our page on what you can do while waiting for an assessment: https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/what-can-i-do-while-waiting-for-an-autism-assessme. The information on the support that may be available while she waits for assessment and what you can prepare for it might be particularly helpful. 

    Best wishes,

    Anna Mod

  • Hiya. That's difficult for me to answer as I waited for an NHS assessment for over 3yrs and during that time I saved up for a private ASD assessment, opposed to ADHD but the two are definitely linked. I think its natural and understandable to worry but I think you just have to be honest and go from there. Answer or write with what you think and feel not what you they want you to think and feel. I wish you and your daughter all the best. There will be people here who can help and have likely been through the exact same process.