All Aboard

Back on a rollercoaster

Back in January 2012, our daughter had her first appointment with the Paediatrician. This appointment was organised following concerns we’d raised with our local GP: anxiety, self-esteem issues, outburst/tantrums etc; I’d written a list of behavioural issues that had been on going and escalating since she was about five years old – it might have been earlier but its hard to tell what behaviour is expected in a toddler, especially if its your first child! None of this is present in school – she prefers to stay quiet so as not to attract attention and with added sensitivity issue, bursts once she gets home.

We saw the Paediatrician in the local community hospital where I had written a longer list of issues to back up my concerns and show that I wasn’t an over-anxious mother.  Some of the questions asked included when our daughter started socialising?, what she was like in school?, did she have friends come to our house?, did she go to theirs? and do we have any parent friends in the village? – The answer to that last question was ‘No’ and now my husband is saying we should go to the pub more and socialise, making me feel and question its our fault?!?

When she was in Year 5 she went to a Year 3s house twice and was invited to their birthday party – the first visit to a friend’s house in 4 years since her arrival whilst in Year 2! She’d been to a birthday party in her first year at the school but didn’t join in and wasn’t comfortable so never accepted any other invitations, although she had at least one or two a year. She was, however, happy to attend birthday parties that her brother had been invited to and got upset on the occasions when I had to tell her she wasn’t allowed to join in (not all parents expect siblings to attend as well and rightly so). Recently she’s been to another Year 6s birthday party and was okay, yet when she attended another which was held in a hall with a disco DJ, I wasn’t allowed to leave. Eventually after 20 minutes I was given the nod to go, but as soon as I walked in the door, the anxiety had kicked in and I was called to collect her.
Other questions asked by the Paediatrician included the usual ASD traits, eye contact, interactions, obsessions, rituals, routines, reactions to change, behaviours, sensory issues etc. Although I’d prepared a long list, this wasn’t enough to cover all the questions about 7 years ago and it was difficult to think back that far on the spot. I think some things I probably said she was okay, but if I think about it, we always adapt the way we worked to her behaviour. Based on that, I can’t say 100% that I answered correctly.

Quite a lot of those issues pointed a lot to the things seen in an ASD child but after the many questions, the pediatrician said “at this time and based on current information from you alone (us the parents) and without any school evidence, she doesn’t show any signs of an ASD. We need to have the school social questionnaire to confirm, but in the mean time, are you happy to be referred to CAMHS for behavioural intervention strategies?” I agreed to this, but have had no dealing with CAMHS and therefore know nothing about them. I’m no stranger to the trials of behaviour therapy/interventions and have very little confidence in what they can offer that is any different to what I have already read and tried.

However, I don’t know what it is causing the issues – I have ideas but I can’t pin it to one diagnosis and a lot swings to ASD (in my opinion) but then a lot of ASD is a mixture of other diagnosis so maybe not.  I think ASD but then I think about it more because they say no and I think ‘maybe it isn’t because of this…’ but then I remember something else and think, ‘well, actually?!?’ Its very frustrating; at least with our son I pretty much knew what it was and just followed their lead until enough evidence was available but with our daughter I have conflicting views from different areas in her life which is making it very confusing. Back to the drawing board of reading, taking notes and waiting. Maybe its a mixture of sensory and coördination issues causing the anxiety which over the years has built up and causing all the issues. I don’t want to force a DX on her when it isn’t that but I do want to know what it is, so we can move on and help her.