1st appointment looming

Hi,

7 months later, we finally have a date for my daughter to start her assessment for Autism. Naturally she’s already anxious! There will be 3 parts; a session together to get family info, an appointment for just us parents, and my daughter will be doing a ‘table too activity’. She’s already wanting to know what this is. Any ideas? She’s 14, by the way.

Will she be filling in any questionnaires etc, as I’m sure I won’t remember all I have to say, let alone her....

I have to bring her school reports in. These are all perfect! I feel like I should start making notes of things, as I want them to get the best picture of her. I know they are very good at what they do, but I’m still worried the real her won’t be seen, as speaking to her, she’s eloquent and adept at masking!

I had to contact the school about her last week, and a teacher said, oh, I like talking to (name). She’s very intelligent, and...hmm an ‘interesting’ girl. That just about sums her up lol....

Parents
  • Hi Catlover. We're just going through the process with our almost-13 year old son (and waiting to start the process with our eldest when he turns 18!). Our boys, despite being referred at pretty much the same time, have gone through totally different processes. With the 12 year old we were seen by CAMHS for a 2 1/2 hr appointment where they spoke to us all together and then spoke to us about his development and issues and he went into another room to do some games and tests. We then sat on a waiting list for 6 months before being contacted to say that we would be seen by a private company so they could cut the waiting times. This has consisted of:

    Questionnaires for us and school to complete (I don't think he had to do any actually)
    The Autism Diagnostic Interview for me and his Dad - many, many questions about how he is now, how he was at 4-5 and how he was in the early years. V tricky. If I'd known I'd have taken more notes
    An ADOS interview between him and a psychologist. I sat in on the start of this and was quite surprised by the Qs she asked, but maybe it was part of the assessment (what do you want to get out of this appointment? what do you think your mum wants to get out of it? do you know what autism is? do you know anyone with autism? are they like you?). 

    My son's also very eloquent (with adults) so not at all sure what outcome will be. I'm slightly concerned they don't seem to be going to do any school-based observations, because it's interacting with his peers where he really struggles. 

    Good luck in the journey - and definitely start making notes. I jotted things down in the back of a notebook and then had a typed sheet of things I wanted to cover, because I didn't want to miss anything. I'm sure I still did though!

Reply
  • Hi Catlover. We're just going through the process with our almost-13 year old son (and waiting to start the process with our eldest when he turns 18!). Our boys, despite being referred at pretty much the same time, have gone through totally different processes. With the 12 year old we were seen by CAMHS for a 2 1/2 hr appointment where they spoke to us all together and then spoke to us about his development and issues and he went into another room to do some games and tests. We then sat on a waiting list for 6 months before being contacted to say that we would be seen by a private company so they could cut the waiting times. This has consisted of:

    Questionnaires for us and school to complete (I don't think he had to do any actually)
    The Autism Diagnostic Interview for me and his Dad - many, many questions about how he is now, how he was at 4-5 and how he was in the early years. V tricky. If I'd known I'd have taken more notes
    An ADOS interview between him and a psychologist. I sat in on the start of this and was quite surprised by the Qs she asked, but maybe it was part of the assessment (what do you want to get out of this appointment? what do you think your mum wants to get out of it? do you know what autism is? do you know anyone with autism? are they like you?). 

    My son's also very eloquent (with adults) so not at all sure what outcome will be. I'm slightly concerned they don't seem to be going to do any school-based observations, because it's interacting with his peers where he really struggles. 

    Good luck in the journey - and definitely start making notes. I jotted things down in the back of a notebook and then had a typed sheet of things I wanted to cover, because I didn't want to miss anything. I'm sure I still did though!

Children
  • Thank you very much for your reply. It was good to hear about your experiences, and I have started taking notes as you suggested. I’ve also started a diary of incidences that occur regarding my daughter.

    I’m worried about the paperwork the school sent off in April might not be acccurate. She’s only now beginning to have problems with school. We have a meeting with the SEN teacher this week actually. I don’t know what they can do to help...

    Do you know if they definitely won’t be doing any school observations? Do you know how long you have to wait for a final diagnosis? Did they suggest anything to you after the assessment?

    Funny that you mention your older child is also being assessed. I’m pretty sure my eldest is also on the spectrum, but he disagrees. He’s adamant he’s fine. I can’t force him to address the issue, but he has many traits, and has been like that since birth! The only difference so far between the two of them, is he was actually very unruly in school. As a teen, school found him to be ‘gifted’. As a young adult he had depression. I could list his traits, but I guess that’s for another discussion lol...

    Good luck with everything! And I hope your boys get the help they need to get on in life with as little stress and difficulty as possible.