Autistic Consultant & Independent Researcher, Wenn, leading by example to empower autistic individuals and promote quality co-produced research


How often does a parent throw up their hands in despair over the inappropriate behaviour of their child? "...needs a good hiding" says the woman behind me at the cash registers. "Kids like that got no discipline" says another. "I blame the parents. They should be made to control their children!" Her neighbour suggests. Their words served to reinforce my sense of despair. For some years I had suspected that my son was not just 'being naughty' but that he had particular problems associated with everyday life. In fact they mirrored the same type of problems that I myself had encountered.

It was to be more than twenty five years later that this diagnosis was over turned. Schizophrenia is an appropriate term that describes the issues many people live with. Properly diagnosed and treated many individuals are able to live full lives. However, the problems that I encountered on a daily basis did not truly fit the picture painted for me of such a diagnosis. In some ways the medication was useful and at times it curbed my anxiety. What it didn't do was explain social interaction, the 'usual' rules of what it means to be human.

You see, I now have a diagnosis that explains who I am, why I do what I do and what I can do to help myself understand my environment better. Recent studies indicate that 1 in 58 children will be autistic (NAS, 2015).

Autism impacts on individuals in various ways but it always affects the way we view and understand the world around us. I suffer from the ignorance of others, not from my being autistic particularly. Life is tough at times for us all. Being understood helps each of us find our way, autistic or neurotypical.

Today, I 'connect' more readily with life and enjoy both family and friends around me. I am happy 'alone' especially when I can pursue my own interests and I have developed strategies that enable me to more than cope with life's demands. However, for more than forty years I lived with intense feelings of confusion, frustration, depression and isolation. This does not have to be the sentence for our children and autistic adults today. With appropriate support and intervention their lives, and those of their families, can be quite different!

I want to acknowledge how tough it is for families, BUT, I also want to put this into perspective.

How distressing it must be for any parent to know the joy of pregnancy, of giving birth and then watch their hopes and dreams diminish as their family life is subject to confusion and subsequent erosion. For many parents it's a long haul to eventual diagnosis. Sometimes a parent has been to many different doctors, psychologists and other professionals, but to no avail. Often they are left with feelings of isolation, despondency and the belief that they must be terrible parents.

Although in the past autism was perceived to be directly related to poor maternal care and attention, today it is considered to be a disorder of the Central Nervous System (CNS) possibly genetically based (Prior, 1992:90). However, children with autism respond very well to 'concrete learning' situations and behavioural management strategies (Attwood, 1992).

Families with an autistic child experience much frustration and may even think that their child is simply out to make life difficult for them! More often than not, the child simply hasn't really understood.

Sometimes, individuals need a specific program prepared for them by a psychologist. Unfortunately, unless the individual is intellectually disabled, the parent or carer will have to carry the cost of this themselves.

See also: Diagnosis brought 25 years of pain (from the Warrnambool Standard Newspaper).