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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 True self,

      Given your concerns about the lack of experience of the paediatricians, I wouldn't rule out the ASD diagnosis even with the current conclusions.

    I'm not sure where you live in the country, but you may want to also consider an assessment by Sarah Hendrix, the lady who's video I sent you. She is well respected in the feild of female ASD and has published several books.

    www.asperger-training.com/.../

    She makes it clear she does not have the clinical qualifications to diagnose, but 'Hendrickx Associates provides Adult Asperger assessments which follow the same process as a formal diagnosis, including a comprehensive report of the assessment process and outcome.'

    Additionaly, her qualifications in Autism and her considerable experience in assessing and working with women on the spectrum is well documented.

    You would probably have to provide the writen case statement i mentioned earlier, but to be honest and accurate assessment is more valuable in your daughters support and as you say for your child to know who they are and to be independant and happy, is worth the process.

    I wish you luck

    Coogybear

Reply

  • Hi True self,

      Given your concerns about the lack of experience of the paediatricians, I wouldn't rule out the ASD diagnosis even with the current conclusions.

    I'm not sure where you live in the country, but you may want to also consider an assessment by Sarah Hendrix, the lady who's video I sent you. She is well respected in the feild of female ASD and has published several books.

    www.asperger-training.com/.../

    She makes it clear she does not have the clinical qualifications to diagnose, but 'Hendrickx Associates provides Adult Asperger assessments which follow the same process as a formal diagnosis, including a comprehensive report of the assessment process and outcome.'

    Additionaly, her qualifications in Autism and her considerable experience in assessing and working with women on the spectrum is well documented.

    You would probably have to provide the writen case statement i mentioned earlier, but to be honest and accurate assessment is more valuable in your daughters support and as you say for your child to know who they are and to be independant and happy, is worth the process.

    I wish you luck

    Coogybear

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