Continuing with our story, as Jacob’s problems escalated at school they escalated at home as well. We sought advice from Health Visitors as previously mentioned to no avail. There were countless trips to the GP, we were then referred to CAMHS who referred us to Community Paediatrics. Community Paediatrics suggested he did show signs of ASD and ADHD but adopted a wait and see approach.
Jacob was on to around his 4th Fixed Term exclusion in Y1 when we went back to the GP. A member of staff from School actually came with me to this appointment and we pretty much begged to try and get him seen again.
The GP referral ended up with CAMHS who held a multi-disciplinary meeting and referred us to MAST. We had MAST involved for a number of months. Their advice ranged from suggestions of boundaries, routine, discipline, good sleep habits, good eating habits and the suggestion that sometimes “children act out due to a lack of interaction as infants” and the often dreaded “Parenting Courses”.
During all this toing and froing between various professionals I heard a lot of “Jacob can’t be autistic because…”.
Most people are aware that Autism is a spectrum and people can vary in severity and ends of this spectrum. Jacob falls on the High Functioning end of the Spectrum with his cognitive ability however his social communication skills are woefully behind that of his peers.
A common misconception is if your child can give some eye contact they cannot be autistic or if they will engage (or appear sociable) with a professional that also means they cannot be autistic. I know that girls in particular can be difficult to diagnose due to their ability to “mask” their autism and “emmulate” others.
One day towards the end of last year, out of sheer frustration, I googled “atypical autism”. I had heard, as most people will have, of Asperger’s although I didn’t think that was a good fit for Jacob. I then came across Pathological Demand Avoidance and it was a serious đź’ˇ moment for me. It was like someone had written down and described all Jacob’s attributes. I then set about joining PDA groups, looking at the PDA Society website and learning more about it.
#pathologicaldemandavoidance #pda #pdaautism #autism #senparenting #improvingoutcomes
Jacob and his 4 sisters 