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.

Mother's Intuition - Diagnosis Part 1

It has been 5 years since I last blogged and it seems like a lifetime ago. So much has happened in this time and strangely, in the past few months I have been feeling a strong desire to get some of my experiences and thoughts down in words.

With the birth of my second son baby ‘S’ 2 years ago, life suddenly accelerated into a whirlwind of daily activity. Events, milestones and emotions that I once thought I would be able to recollect in utmost detail have become more like an impressionist painting in my head (although far less beautiful!). I think this is really why I want to write; so that there is something concrete that I can look back on when my memory truly fails me.

In 2013 when J was 20 months old he was officially diagnosed as being on the autistic spectrum. Although very high functioning, J’s diagnosis was still heart wrenching. It made me truly consider the things that I wanted for my child. When it came down to it, it really is quite simple. Ultimately, like most parents, I just want him to be able to lead a happy and fulfilled adult life. We have certainly been on a bit of a journey learning about how best to manage his needs and also our needs as a family. I am so grateful too that we were able to get an early diagnosis as this has made it so much easier to understand him better.

Over the years people have asked me quite a few questions about the diagnosis process. I thought I would answer some of these in this and the next few entries.

   When did you first notice there might be issues and what did you notice?

         Who did you go and see?

        How did the diagnosis affect you and your family?

       What resources did you use in the early days?

As a first time mother, you are constantly questioning everything that is happening with your child. What is normal for one baby will not be for another. There are endless parenting websites and so called ‘experts’ that give you conflicting advice about how to approach different issues. It is no wonder that many of us suffer from at least some level of post-natal depression. At a time when we are particularly vulnerable, we are bombarded with supposedly well-meaning advice but it constantly calls our own choices into question.

When I was a medical student doing my paediatrics term, a very wise doctor told me to always trust a mother’s intuition no matter how neurotic they may seem. This has always stuck with me and when I had my own child, I tried to remember this. So, on one level whilst I tried to convince myself everything was ok, on another I had some concerns too.

Some of the things I remember about J as a young baby.

1)   He hated shopping centres. Even from a few months old, if we walked into an enclosed space he would start to cry and become very unsettled. He had to be moving if he was sitting in a pram. Heaven forbid if I stopped pushing whilst trying to do some shopping! I was always very jealous of the other mums who seemed to be able to go shopping whilst their pushing their contented baby in a pram.

2)    My child was always the one at mothers’ group who seemed unsettled and needed to be picked up or soothed. I have a vivid memory of us all at someone’s house with all the children spread out on beautiful blankets on the floor. Of the ten babies there, 2 were asleep on the floor, one was asleep in a carrier and 6 were lying there happy to watch the world above them and mine…. Well mine was the one crying and unhappy and did not settle until we walked out of there.

3)    Sudden loud noises – These always caused a major startle reflex and although I know this is normal, I remember always thinking his were so much more pronounced than other babies. He was particularly afraid of the vacuum cleaner and the sound of an exhaust fan.

There were many 'little things' in isolation that don't really mean much, but when I pieced them together and particularly in hindsight, the diagnosis was easier to see. In my next post I'll explore how we went through the diagnosis process.