READING BETWEEN THE LINES
Everyone reacts differently to the autism diagnosis. Just like each and every child is unique in where they sit on the spectrum, so too are the reactions experienced by parents.
I remember feeling quite mixed about L’s diagnosis. I was both disappointed and relieved. My feelings fluctuated between disbelief, anger and an acknowledgement that now I knew what it was. FINALLY, her challenging behaviour and lack of speech had a name and I could do something about it.
The day after her diagnosis I went to the library and borrowed as many books as I could find on the subject of autism. Reading was the best way I knew how to cope in the early days.
I found great comfort in the written word. Reading about other peoples’ experiences validated my own feelings of disappointment, anger and frustration. It made me feel less alone and afraid.
I remember reading a passage about a three-year-old toddler, who only wanted to watch the same movie over and over again, and would have a major screaming tantrum if the credits didn’t run to the end. This was something L was doing at the time. Look out, if we switched the T.V off before the credits had finished rolling – the whole street would hear about it!
When H was diagnosed a couple of years later with Pervasive Developmental Disorder (PDD), I experienced similar feelings of disappointment because I knew she was going to have to work harder to achieve basic milestones that came easily to other kids. However, I didn’t stay down for too long, and after a good cry, I knew that I needed to support her the same way we had been supporting L.
By the time it came to N’s diagnosis of Aspergers last year, I was well experienced in dealing with reading that piece of paper and hearing those words.
This time I didn’t cry or rant and wonder, ‘why my kids?’ This time, I headed straight to my bookshelf and re-acquainted myself with some old friends.
- Department of Human Services, 2003, Parent to Parent: Raising your child with special needs, Deakin University Press, Geelong.
- Tony Attwood, 1998, Asperger’s Syndrome: a guide for parents and professionals, Jessica Kingsley Publishers, London.
- Jude Welton, 2004, Can I tell you about Asperger Syndrom? Jessica Kingsley Publishers, London.
- L Hamilton, 2000, Facing autism: giving parents reasons for hope and guidance for help, Colardo Press, USA.
THE FIRST STEP
‘Your child has autism.’
Whether you sat dumbfounded as a specialist spoke those words, or were handed a written report and read the statement in bold, black text – like many other parents, your journey with autism began long before the formal diagnosis.
Although you may not have realised it at the time, your concern over your child’s unusual behaviour, lack of clear communication and use of eccentric speech patterns-when they did choose to speak-was your first encounter with autism.
As parents, it is easy to dismiss our concerns about our child’s development, push them aside and simply blame it on delayed milestone achievement. Friends and family can play a part in this also if they offer words of encouragement and make statements such as, ‘You didn’t start talking until you were three’, or ‘Little Charlie was a late walker and now he runs rings around me.’
But as each milestone gets pushed further back, there comes a time when you know something isn’t right, and that you shouldn’t consider linear formations of toys all over your loungeroom floor, as great eye-hand co-ordination.
It was like that for my family when it came to our second child, L. Unlike her older brother, who was communicating quite fluently by the age of two and had reached his toddler milestones easily, L seemed to get stuck after her first birthday.
During her early years there were many instances when I questioned whether or not she was OK, and raised my concerns with my Maternal Child and Health Care Nurse at the time. However, the grading system that was used to determine language understanding was based on number of words spoken, not whether the child was able to use those words in any meaningful way.
The fact that L knew ‘x’ amount of words and could point and name many items in a picture book wasn’t the same as L being able to construct sentences to communicate and that the words she repeated and repeated (echolalia) were learnt by rote.
The uneasy feeling I had about my daughter’s development was confirmed in July 2005 when we learnt the name of her condition-autism.
Then we took our second step.