Before my son was diagnosed with ASD and anxiety using the PDA (pathological demand avoidance) profile here are some of the reasons given for his sensory intolerance, anxiety and refusal to do everyday things by professionals during the 9 year run up to diagnoses. I know I am not the only one who will of heard these and similar/worse.
- ‘You are a just being an overly concerned parent.‘ (age 2, Nursery Manager) Approached because he was not yet speaking and lining up cars. Autism runs in our family and was never something I was concerned about, I just wanted him to have the right support.
- ‘You are too soft and he knows he can get away with it.’(age 3, nursery worker). When he was refusing nursery although I always made he go in regardless of some pretty extreme behaviour even for a two year old.
- ‘You are over caring towards him which is making him clingy.’ (age 4, TA) When he didn’t want to go into the classroom 6 weeks after starting school.
- ‘Some boys are just lazy and uninterested, you need to push him harder.’ (age 5, class teacher). He tried enormously hard in school and I was concerned he was dyslexic as he still could not write a single words and broke down ever night when I tried to do phonics with him.
- ‘Perhaps you don’t show him enough affection which is making him insecure?’ (age 6 pediatrician).
- ‘He is suffering anxiety because your mother is dying/has died’. (age 7, ADOS lead professional, age 7). I set up support for my son to have counselling from the moment we knew her cancer was terminal, he wasn’t that close to her and problems had been happening for years before this anyway.
- ‘He is reluctant because you are over protective because first child died.’ (age 8, Lead professional ADOS team). 14 years before my son was born from cot death I must add for which I had counselling and dealt with long before I started trying again for a family again.
- He is anxious because you started a new relationship.’ (SENCO, age 8)
- ‘He is anxious because of your relationship break up with his father’ (Clinical psychologist age 9) which happened when my son was 1.’ My son has always had unrestricted contact and we have never let our differences affect my son.
- ‘Some children are just born anxious for no reason at all.’ (age 9 educational psychologist). In complete contrast to CAMHS who said ‘No child is born this anxious, children don’t get this anxious unless either they have been in extreme trauma such as a war zone or they have neurodevelopmental issues.’
One month before his 10th birthday he was finally diagnosed after being on an open diagnoses of profound anxiety with autistic traits for 2 years apparently because ‘You didn’t ask the right questions before’ (Speech and Language practitioner ADOS team). I should have known that would be my fault too!
There were more as well as the ones from other parents, friends, family and random people who feel they have the right to comment on any behaviour that happens outside of the home but these are the ones that stung the most for me. Have you experienced any of these or similar? If so feel free to share in comments to let me know I am not alone.
You can read more about the early signs of PDA in my son here: PDA – A parent’s account of the early indicators