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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

  • Hi Coogybear

    Thanks for your reply and I have stopped asking opinions of people ie family and friends. I think I have realised if I don't have the answers then they definitely don't. At the moment her cognition and how she uses it to adapt her behaviour is being investigated and she has already being diagnosed with transient tic disorder 18months ago. The tics are still evident so not transient anymore.

    We are gathering all the evidence we can to be able to give all the necessary information at her ADOS. We have seen paediatricians and they have said everything is normal but I don't think any are truly aware of female presentation of aspergers, even though it is not diagnosed as that now. i think girls with high IQs have learnt so many strategies and maybe parents look for help later because they hope their child will just get it and behave. The teen years seem to be a time when things really reveal themselves and also as this is a spectrum they all present so individually.

    I will look at the links as have read a lot from Tony Attwood and really like his approach. I think keeping pushing with the process takes drive and some days it can be draining but for your child to know who they are and to be independent and happy is worth the process.

    Thanks

Reply

  • Hi Coogybear

    Thanks for your reply and I have stopped asking opinions of people ie family and friends. I think I have realised if I don't have the answers then they definitely don't. At the moment her cognition and how she uses it to adapt her behaviour is being investigated and she has already being diagnosed with transient tic disorder 18months ago. The tics are still evident so not transient anymore.

    We are gathering all the evidence we can to be able to give all the necessary information at her ADOS. We have seen paediatricians and they have said everything is normal but I don't think any are truly aware of female presentation of aspergers, even though it is not diagnosed as that now. i think girls with high IQs have learnt so many strategies and maybe parents look for help later because they hope their child will just get it and behave. The teen years seem to be a time when things really reveal themselves and also as this is a spectrum they all present so individually.

    I will look at the links as have read a lot from Tony Attwood and really like his approach. I think keeping pushing with the process takes drive and some days it can be draining but for your child to know who they are and to be independent and happy is worth the process.

    Thanks

Children
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