• Replies 10 replies
  • Subscribers 25 subscribers
  • Views 2914 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

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

  • Thanks for your reply.

    It is exhausting with the process. I think the reality that so many people are going through this process and having this forum helps to ask questions. I think my anger is more at myself, the how I can have missed things and that the poor kid has had her parents annoyed at her and she has been unable to know why or change a behaviour.

    I suppose so many things are hidden by developing coping strategies and many even get to adulthood with only interventions for depression etc. I find the process enlightening but sad that it is such a struggle. 

    I hope the ADOS this week goes ok and that your daughter is able to get some answers and any necessary support.

    Take care

Reply

  • Thanks for your reply.

    It is exhausting with the process. I think the reality that so many people are going through this process and having this forum helps to ask questions. I think my anger is more at myself, the how I can have missed things and that the poor kid has had her parents annoyed at her and she has been unable to know why or change a behaviour.

    I suppose so many things are hidden by developing coping strategies and many even get to adulthood with only interventions for depression etc. I find the process enlightening but sad that it is such a struggle. 

    I hope the ADOS this week goes ok and that your daughter is able to get some answers and any necessary support.

    Take care

Children
No Data