The assessment day finally upon us, his Dad, Jacob and I set off for the appointment. My own anxiety was through the roof as I don’t like going to places I’m not familiar with at the best of times and this felt like a really big deal. It was everything I’d pushed for for 5 and a half years. I was especially worried as even though I was sure Jacob had autism, I couldn’t fight the niggling in the back of my mind that they would say he was simply naughty or that we were just not parenting him correctly.
The assessment felt like the end in some ways but also the beginning in others. If he came away undiagnosed then we were back to the drawing board. If he came away diagnosed, I didn’t know whether his ASD diagnosis would come detailing the PDA element as I was already aware some Counties in the UK don’t acknowledge it in the diagnosis. For our friends in the US, it isn’t diagnosed at all. Diagnosis doesn’t change anything really, it just gives you the correct knowledge to know how to attempt to make things better.
In the end, I needn’t have worried. After an hour and a half assessment they Clinical Psychologist and Speech & Language Therapist came back in the room after deliberating, sat down and the CP said “have you heard of PDA” I allowed myself nothing more than a nod. She went on to say “that’s what he has although we don’t give it as a stand alone diagnosis”. We came away with ASD with an extreme demand avoidant profile. All his reports state PDA though and I knew that was the best I could hope for.
I’d seen my sister the day before the appointment and she sensibly told me to “not pin all my hopes on coming away with the diagnosis there and then” although she more than agreed that Jacob fully fitted the profile. The first thing I did when I came out is sent her a picture of the diagnosis sheet they gave us. I couldn’t believe it. I expected a fight or at the very least several follow up appointments.
I honestly didn’t know how to feel at that moment – I was happy, sad, shocked, numb. All emotions clashing with each other and I didn’t know what to think. In hindsight, I think I might have experienced a tiny inkling of my son’s “Busy Brain” (his words) that day!
#pathologicaldemandavoidance #pda #pdaautism #autism #senparenting #improvingoutcomes
Jacob and his 4 sisters 