So those who have been paying attention will note that we first had concerns when Jacob was 18 months old. After HV, GP, CAMHS, GP, Community Paediatrics, CAHMS again, GP, MAST and Community Paediatrics again we finally got a referral for an ADOS assessment in January 2019. Brilliant I thought… but was then told it would be a further 18 months wait from referral to assessment.
I did understand MAST involvement but in my mind it would make far more sense to place families on the wait list from the start of them requesting an autism assessment rather than after being passed around the houses to various other organisations. If it turned out the child didn’t then need an autism assessment (as something else was behind the child’s difficulties) just take them off the waiting list. Apparently, that is too much like common sense though 😆.
Jacob, by this point, had notched up that many Fixed Term Exclusions that his school were looking at Primary Inclusion Panel to see if there was anything else they could be doing for him before Permanent Exclusion was the only remaining option available to them.
Due to the extreme deterioration in his anxiety levels, and behaviour as a consequence, myself and School constantly called the Hospital that were to carry out the assessment asking if they had any cancellations. We fell lucky and managed to get him a cancellation appointment in April 2019.
I was by now fully convinced that Jacob had PDA and was telling everyone who would listen. School were unconvinced. I think they thought more down the ODD route although they never said that. ODD can appear similar although is different.
As the assessment date approached, I debated with myself about mentioning PDA or not. I decided not to in the end as I wanted to know in my own mind I hadn’t influenced the diagnosis in any way.
#pathologicaldemandavoidance #pda #pdaautism #autism #senparenting #improvingoutcomes
Jacob and his 4 sisters 