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Long process to get diagnosis

True self

Hi

My daughter is still in the process. We had a consultant take her off the assessment waiting list as felt her problems were more mental health. Camhs originally thought there were signs of an ASD and put us on this waiting list July 2013. 14 months later we have filled in AQ and another questionaire, school have filled in but their results can not be used as not filled out properly. We are waiting for Camhs to do a school assessment and then we will go on a waiting list. Not sure how long this will take.

My daughter is nearly 16 and has been doing 1:1 with one of Camhs link workers and the more they work together the link worker has been able to see how many coping strategies she has developed. Hopefully there will be time for us to work with link worker to try and develop better family relationships.  I just get exhausted that we will need to go back on another waiting list and personally don't want to stress her further but she wants to know if she is on the spectrum.

The best things recently have been that my daughter is now coming to us to ask about things she is not sure of and letting us have an insight into her difficulties. This is huge progression as up to last July we knew she was bright but seemed to keep doing things that were unusual or getting her into trouble and would say dont know when asked why? Autism literature has allowed us to have the key to unlock the door. It is slowly opening very tentatively as the process is not quick. 

My question is that we still may need to wait 6 months at least before testing and with 16 being a very vulnerable age with exam stresses and teenage life, is diagnosis needed and is this the only way to get support for university and the future?

One last thing where to go to let go of the anger at myself, the process and people telling me that it can't possibly be this. It is like we are making up how hard things can get and if we had been stricter we would not be where we are. I just need to talk to people who understand and with shared experiences and advice.

thanks to anyone who reads this and replies.

Onward and upward.

Parents
  • Former Member
    Former Member

    Hi,

    It's quite depressing to see this story over and over again. The difficulties encountered by people trying to get diagnosis are shocking! You are not alone and we are with you in your struggles.

    My next suggestion is pure pragmatism and goes against the grain of every fibre in my body but here goes. Have you thought of going private to get the diagnosis?

    I got my diagnosis back in May and have found it massively useful and empowering. The only warning I would give is that she mustn't use it as an excuse for lazy, bad or destructive behaviours. If it helps her with insight and explanations then I would say that it is a good thing to do. It won't magically make help services spring up to help.

Reply
  • Former Member
    Former Member

    Hi,

    It's quite depressing to see this story over and over again. The difficulties encountered by people trying to get diagnosis are shocking! You are not alone and we are with you in your struggles.

    My next suggestion is pure pragmatism and goes against the grain of every fibre in my body but here goes. Have you thought of going private to get the diagnosis?

    I got my diagnosis back in May and have found it massively useful and empowering. The only warning I would give is that she mustn't use it as an excuse for lazy, bad or destructive behaviours. If it helps her with insight and explanations then I would say that it is a good thing to do. It won't magically make help services spring up to help.

Children
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