I wrote the below article about autism/Autism New Zealand and it was published in The Nelson Mail on 21/4/11.
Support Vital Dealing With Autism
My six year old daughter has been invited to a birthday party. Typical in childhood? Not for my daughter, because she is autistic.
Previous birthday party invitations occurred because I knew the families and friendships have been carefully nurtured between my daughter and a couple of children.
So I just about shed a tear when my daughter was invited to a birthday party recently by a girl in her class as I had nothing to do with it. Ok truth be told; I wanted to jump for joy! It is a celebratory milestone around my daughter’s social development as she has struggled socially for most of her short life.
Although my daughter was born healthy, in her toddler years some differences became apparent. The older she got the more obvious those differences became. She was disinterested in other children and was non-verbal until the age of three. She communicated through her behaviour which sometimes was inappropriate and was typically misunderstood.
From the outside it was easy to write it off as bad behaviour. But underneath it all was a child who was overwhelmed socially, suffered from high anxiety and could only handle small doses of exposure to situations that were either noisy or unstructured.
Her undesirable behaviour limited our social interactions at a time when most children’s social worlds are expanding. When she was three and a half years old she was diagnosed with ASD – autism spectrum disorder.
At the time of receiving this diagnosis, I was given a booklet about Autism New Zealand, an incorporated society with charitable status. The booklet contained valuable information such as which services to go in the Nelson region for support and assistance as well as information about coffee group meetings that provide links to other families in Nelson/Marlborough with children and teenagers with autism.
I first started attending the local Autism New Zealand coffee group meetings three years ago. It was the coffee group I knew I belonged to as up to then my experiences of motherhood were significantly different to mothers of neurotypical children. My daughter didn’t reach many of the milestones dictated by parenting books out there. She didn’t sleep through the night until she was five years old. The beginnings of toilet-training were also significantly later and are still a work in progress.
Other children would play alongside each other as toddlers; my daughter would be off exploring the environment or would be fixated on a gadget. It has been incredibly reassuring being able to connect with parents – mainly Mums - who share many of the same challenges as I do.
We might only see each other at coffee group meetings every six weeks but touching base regularly is such an important, if not therapeutic, part of life with a child on the autistic spectrum. Our children are all different ages, and although they all have autism – no two children with autism are the same.
The coffee meetings are a great opportunity to update each other on our children’s progress, to vent if needed and to just meet up with parents who may be living with the same or similar challenges. There is also a lot of information on hand in the form of workshops and seminars which we are lucky to get in our region. Although one child in every hundred is diagnosed with autism, misunderstandings and a lack of knowledge prevail.
A lot of the time autism is stereotyped yet with autism there is no one size fits all. Classic autism is what often springs to mind when autism is mentioned. There is a fascination with it on the big screen, tele and in books - the autism where an individual is seemingly locked in his or her own world, while rocking in a corner. Movies such as Rain Man and television programmes such as The Big Bang Theory feature characters with Aspergers Syndrome – the kind of autism where intelligent but socially quirky individuals reside. These are two examples of autism but there are many different variations in between.
My daughter’s autism can be described as “high functioning”. She didn’t make the diagnosis for Aspergers Syndrome because her onset of speech was delayed. Being a girl puts her in the minority even within the autism arena as typically it is boys that are diagnosed. Although she is challenged socially, she is naturally social yet many think that autistic children aren’t social beings.
Other struggles are to do with sensory processing (she gets tired and overstimulated easily) and managing emotions (she rarely cries). She tends to internalise her emotions so it often appears as if she is doing just fine.
Living with a child with high functioning autism is a little like living with Jekyll and Hyde. Jekyll participates fairly well in class, progresses academically and is even beginning to make friends during her second year at school. Hyde comes home most days from school jaded, retreats into herself for an hour or two, and can have explosive meltdowns.
Her autism seems to go in cycles. She can have weeks or months of “doing well” – or at least holding it together in the neurotypical world. Then she regresses back to her first language – autism.
During the last three years there has been a team of specialists on board to help with behavioural issues and to ensure mainstream education works. As grateful as I am for the support, it does take a lot of extra time and energy to meet up with all the specialists.
Many strides forward have been made and without a doubt my daughter wouldn’t be doing as well as she is without all the help, but the challenges remain despite the best efforts to manage my daughter’s autism on a day to day basis. Autism is for life and it is important to connect with other families to gain hope and inspiration. That is why an organisation like Autism New Zealand is vital for families such as ours.
