This is a parent's account of her struggles with securing support and trying to attain a diagnosis for her child. Even though her needs and likelihood of neurodivergent conditions were identified early on, due to inconsistencies between other agencies attitudes and waiting times for assessments, the parent felt her only option to do what was best for her child was to pay for a private assessment and diagnosis. Now, like many others, she finds herself with the diagnosis she has long struggled to obtain and still no support for her family. This is her story:
"I first started having concerns about my daughter around the age of 3, portage got involved but I got told “she’s really social and not like the other children I see” portage then discharged the self when my daughter started full time pre school. Our GP then put a referral in for a paediatrician to assess her, where we got told “she’s only young, she’ll grow out of it” and “I definitely don’t think she’s autistic” he did put an OT referral in for her as she was struggling to use her hands but this was refused. Whilst this was all going on my daughters behaviours where becoming more challenging and she was struggling at certain aspects… her school got an EHCP in place ready for her starting reception - this didn’t match her needs and the school where struggling to control her resulting in me having to pick her up early on multiple occasions…during all of this I’m still fighting for an assessment.
My daughter then went into hospital after a cluster of seizures which resulted in a epilepsy diagnosis, a few months later her original paediatrician was off and we saw the same lady we saw in A&E, I finally felt listened to. She wrote to school and asked them to put in a referral for Autism and/or ADHD assessment. The school only put in for ADHD this was refused because she wasn’t yet 6 (albeit 3 months away) they refused to see her and said to ask school to re do the referral on her birthday, they then referred her to early help. At this point I was getting so fed up of nobody listening to us and my daughter was struggling more and more so we went private (paid for by money my grandma left when she passed away) this resulted in my daughter been diagnosed with autism (she wasn’t even on the pathway for this yet with the NHS) early help came to visit us and I was told “this isn’t a parenting issue you don’t need us” so we now have a diagnosis although still no support, we are currently waiting to hear the outcome of our last EHCP meeting we’re we requested a specialist provision."
Comments