Doubts about seeking diagnosis

I asked my GP to refer me for assessment in August and have received a bunch of questionnaires from the ASD assessment service - autism spectrum quotient, empathy quotient, one for somebody who knew me as a child and one for someone who knows me well now.

So I asked my parents to complete the one about my childhood, and my mum has completed parts of it. Though she has left blank the observational type questions, instead adding a note to say that it was too long ago and she can't remember. Which is fair enough but aside from a yes/no tick box section all that she's provided is a comment saying that I was late talking, "shy, quiet and reserved" and that she didn't notice anything that she thinks was out of the ordinary. I'm not entirely surprised as she hasn't been particularly supportive of my seeking diagnosis and thinks that I wasn't like some autistic children she knows so I can't have ASD. Though I was hoping she would at least complete it, even if her recollections of my childhood are so different from mine.

I still need to ask someone who knows me now, but feeling really awkward about approaching friends about this, as not sure that anybody knows me that well.  I'm not particularly good at keeping in regular contact with friends, so would be the first time I'd spoken to them in months (or longer...). One of the questions on the observational bit includes one with an example of "only initiates social interaction to ask for help" also makes me feel embarrassed about asking them!

The letter from the ASD psychologist stated that I'd be removed from the waiting list if I didn't return the completed questionnaires within a month including at least one of the ones somebody who knew me as a child or now, which worries me as not sure if my mum's one counts as completed! Also if my parents aren't going to be willing to provide much information about my childhood, will it be much harder to get a diagnosis?

It's frustrating. The more I read about ASD, the more it feels like it fits. But I'm doubting whether it's worth going through the stress of seeking diagnosis if it's going to be difficult to provide the evidence to back it up, beyond what I say.

Parents
  • I agree with ; as the form is for a third-party to complete, I doubt very much that it would be counted against you that your Mum has nothing more to add. It's very common for adults going through their assessment to have difficulty finding someone with clear memories of their childhood, or to have few contacts who can corroborate their autistic behaviours (particularly as we so commonly do our best to hide them from other people!) These factors will be well known to the assessors, and will be taken into account. Many adults still receive a diagnosis in their absence.

    Another factor which is worth bearing in mind is that autism very often runs in families, and many parents have little idea what kind of behaviours might indicate autism. This can mean that parents are simply not aware that some of our autistic behaviours are "out of the ordinary" - it even happens that parents discover that they have many autistic traits themselves when their offspring are diagnosed. In my case, it seems that my Mum's younger brother has signs of autism very like my own, and she shares some traits with me herself; so, to her, I just didn't seem all that strange.

    So my advice would be to send the forms back as they are, and to continue with the assessment process.

Reply
  • I agree with ; as the form is for a third-party to complete, I doubt very much that it would be counted against you that your Mum has nothing more to add. It's very common for adults going through their assessment to have difficulty finding someone with clear memories of their childhood, or to have few contacts who can corroborate their autistic behaviours (particularly as we so commonly do our best to hide them from other people!) These factors will be well known to the assessors, and will be taken into account. Many adults still receive a diagnosis in their absence.

    Another factor which is worth bearing in mind is that autism very often runs in families, and many parents have little idea what kind of behaviours might indicate autism. This can mean that parents are simply not aware that some of our autistic behaviours are "out of the ordinary" - it even happens that parents discover that they have many autistic traits themselves when their offspring are diagnosed. In my case, it seems that my Mum's younger brother has signs of autism very like my own, and she shares some traits with me herself; so, to her, I just didn't seem all that strange.

    So my advice would be to send the forms back as they are, and to continue with the assessment process.

Children