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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

  • If you have the ados dont nesacarily think anything will come of it. my son is 7 now and since he was a baby we have known something was wrong,the first pead we had was totally useless,hes been under the pead and salt since around two if not younger.

    School knows he is on the spectrum,i know hes on the spectrum and yet we still await dignoses.

    We had the ados and nothing came from it expect that he spoke in a montone voice, Now put speaking in a montone voice with hypercussis,sensory issues,routine bound,jumping up and down and flapping his hands,lining up his toys every time he plays with them,huge meltdowns all the time especially in suprermarket,no danger awareness what so ever! can be very reptitive in speech, haircuts are absolutely painfull for him as is washing his hair,wont wash hand or face or brush teeth,will not hug your kiss,finds its very hard to show emotion,takes things very literally,cannot read other peoples feeling,lacks empathy in a huge way,has eaten till hes been sick and i have stopped this, lacks socail skills,in a group at school for gross and fine motor skills, has self stimulated since he was around 6 months old,will not usually go to sleep till 1am or later and many other things, when you put all this together it all points to one thing. Why they cannot see all this i do not know,i know i have been fighting a long battle and hope that my son will eventually get a diagnoses.

    I hope that you will get where you need to, to get your daughter the help she needs. xxx

Reply

  • If you have the ados dont nesacarily think anything will come of it. my son is 7 now and since he was a baby we have known something was wrong,the first pead we had was totally useless,hes been under the pead and salt since around two if not younger.

    School knows he is on the spectrum,i know hes on the spectrum and yet we still await dignoses.

    We had the ados and nothing came from it expect that he spoke in a montone voice, Now put speaking in a montone voice with hypercussis,sensory issues,routine bound,jumping up and down and flapping his hands,lining up his toys every time he plays with them,huge meltdowns all the time especially in suprermarket,no danger awareness what so ever! can be very reptitive in speech, haircuts are absolutely painfull for him as is washing his hair,wont wash hand or face or brush teeth,will not hug your kiss,finds its very hard to show emotion,takes things very literally,cannot read other peoples feeling,lacks empathy in a huge way,has eaten till hes been sick and i have stopped this, lacks socail skills,in a group at school for gross and fine motor skills, has self stimulated since he was around 6 months old,will not usually go to sleep till 1am or later and many other things, when you put all this together it all points to one thing. Why they cannot see all this i do not know,i know i have been fighting a long battle and hope that my son will eventually get a diagnoses.

    I hope that you will get where you need to, to get your daughter the help she needs. xxx

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