Diagnosis Part 2

                                                          

So how did we actually come to diagnosis? When J was 18 months old we had our obligatory maternal health nurse visit where I mentioned that he seemed quite reluctant to speak although he could quite happily follow three step commands. According to ‘google’ – an 18 month old should have at least a dozen words, but I was well aware that there was huge variation with respect to this. By this time a number of my previous concerns had dissolved and I was convinced that J’s slow speech was probably due to him being a boy and a first child. Comprehension appeared to be no problem, at 13 months he could consistently point to all shapes and could tell the difference between a pentagon, hexagon and octagon.

The maternal health nurse gently suggested that although this probably was ‘normal’, perhaps I should get his hearing tested just to be sure and then maybe consider seeing a speech pathologist just to give us some strategies to encourage J to speak, and so began our road to diagnosis.

Hearing test was completely normal and thus we started a series of speech pathology sessions. I had always considered ‘baby’ talk to be unnecessary and underestimated the endless potential of the child. However, part of the strategy to get J to speak more was to use many more one syllable words over and over. During our sessions, I mentioned to the speech pathologist that J was quite rigid in some of his behaviours.

He only liked the same books to be read over and over. Getting him to like and accept a new book in his repertoire involved me pretending to read it to myself extremely loudly on consecutive days, whilst each time ignoring his very vocal protests of ‘no no no! ‘

New places seemed to upset him and he needed plenty of forewarning when we were going to do something a little unusual.

He didn’t really like the sensation of grass on his feet, and was quite upset if his feet touched the grass even when wearing sandals.

He had a little spinning wheel toy that he could quite happily spin with his thumb and would do this repeatedly through the day and often seemed quite immersed in this activity.

She gently suggested that a visit to an occupational therapist (OT) for an assessment could be pertinent. It was here that I first came to understand to get a formal diagnosis of ASD (Autism spectrum disorder) in Victoria, children must be assessed by a multi-disciplinary panel. We ended up with an OT, speech pathologist and paediatrician.

It quickly became apparent to me that unless you had funds to pay for private assessments then the actual diagnosis process through the public system could be a very long drawn out process. In a condition where early intervention is paramount, early and expedient diagnosis is key. During this period I was keen to seek out other peoples’ experiences through forums and blogs and it was not uncommon for families to be waiting over a year for assessment. This made me so grateful at how lucky we were and at the same time made me so angry that other people could not access better services.

I remember visiting the paediatrician for the second visit where she finally confirmed the diagnosis. Although I thought I was somewhat prepared for this, it still hit me like a tonne of bricks and I’ll never forget the sense of numbness I felt when she handed me a diagnosis letter and sent my darling son and I on our way.