Hi, I wonder if anyone has any friendly help / advice etc. with a form we’ve been asked to fill in? Our 15-year old daughter has PDA. For years we’ve never been able to get a diagnosis or any professional support, because she masks her symptoms so well at school, and our GP is not interested. She only lets her guard down when around people she’s comfortable with, which is her parents and older sister. However, over the last year, with the disruption to school routines caused by the pandemic, and remote learning, she has really struggled, and her teachers have now come to realise she does indeed have major issues.
She recently was seen by a special needs coordinator at her school, and we’ve discussed with them the issues that she has at home, and our belief that she has PDA. After a few sessions, she was referred on to a person from “Healthy Minds”, a Wellbeing Service for North Staffordshire, and crucially this person was not told in advance what our suspected diagnosis was, so as to get an independent opinion. This person quickly came to the same conclusion independently, and has now referred our daughter to CAMHS for an ASD assessment, which is really good news.
We’ve just received a form from CAHMS to fill in, which they call a “screening process to provide additional information to determine if a full ASD assessment is required and completion does not guarantee that your child will be assessed for Autism Spectrum Disorder”.
For information, here’s a link to a blank copy of the form I’ve scanned in and placed on DropBox: https://www.dropbox.com/s/9tpjba80qzot82l/Camhs%20form.pdf?dl=0
We have huge concerns over this form. We were originally under the impression that an assessment would definitely be done, and that perhaps the only obstacle was a long waiting list. But suddenly, it feels to me that despite professionals referring her to CAMHS, they appear to be looking for excuses to not do an ASD assessment for her. We’re happy of course to provide as much information to them as we can to help with the diagnosis, but we’re really uncomfortable that the information they require is not to help with their assessment, but instead may perhaps give them an excuse to not do an assessment at all. Suddenly, there is a huge amount of pressure on us, as parents, to get the answers just right so that they tick the boxes required by The System to pass this screening test. If they read the form and then tell us they won’t do an assessment, we will have failed our daughter, and that’s something we will need to live with for the rest of our lives. We’re absolutely terrified of writing the wrong thing. Is this really fair on parents to be put under this kind of pressure?
I’m not sure what, specifically, I’m asking on this forum. Obviously people can’t help with specifics as you don’t know our daughter, and I need to ensure that everything I write down on the form is truthful, but I wonder if anyone has any ideas about what kinds of things to emphasise or play down, if that’s even ethical? The boxes on the form are so small, and the questions are very specific – there’s no spaces for us to write general descriptions of all her symptoms and issues that fall outside their limited questions. And the form is geared up for the more common ASD symptoms, which can differ quite significantly in children with the PDA presentation of autism. And many of the questions relate to when she was 5, which was 10 years ago, and we can’t remember details from back then!
Anyway, partly asking for advice, partly venting our frustrations, partly just looking for a bit of support and understanding – thanks so much for reading!
Rich + Zoe.