Early Intervention Services for Children with Autism Notice of Motion 2008
Reverend the Hon. Dr Gordon Moyes: Like my colleague, I support the motion moved by the Hon. Amanda Fazio on 25 September 2008 welcoming the Government’s $6 million package for the expansion of early intervention services for children with autism. The reported increase in the rate of autism in the children of New South Wales is alarming to us all.
A prevalence study commissioned by the Australian Advisory Board on Autism Spectrum Disorder, led by paediatrician Dr John Wray, concluded that “for every 160 Australian children aged between 6 and 12 years one has an autism spectrum disorder.” That works out to be about 11,000 children in New South Wales alone. Autism affects four times as many boys as girls, and nearly half of all those affected will need assistance for most of their lives.
This is truly a problem of immense proportion and complexity. Autism spectrum disorders result from a dysfunction of part of the brain and central nervous system. Experts state that it is usually present at birth, but it is not evident to parents or a child’s physician until the child is about the age of two or three years. The process of diagnosis can take up to two years, which means a delay in getting these children into appropriate settings.
It is known that the earlier children with autism spectrum disorder are diagnosed and enrolled in early intervention programs, the better the outcomes for the child, the family and the community. Changes in diagnostic definitions and the lack of an actual medical test that provides a diagnosis of autism add to the difficulty of early diagnosis.
Symptoms of autism overlap with a number of other conditions, such as, attention deficit hyperactivity disorder, childhood disintegrative disorder and pervasive developmental disorders. Children must be assessed by a team of health professionals, including a paediatrician, psychiatrist, clinical psychologist and speech pathologist, as a requirement for eligibility for government assistance and the early intervention services they will need.
There is currently a high level of unmet need and service gaps throughout New South Wales. Estimated prevalence rates have risen dramatically in the past few years, so it is vitally important that this issue be recognised and acted upon in time.
However, because of inconsistencies in prevalence estimates, existing data systems need to be improved and additional systems developed to ensure the collection of reliable information. Comparisons with international data published on the incidence of autism are difficult because of differences in definitions, age groupings and the methods used. This area must be standardised to enable the true needs to be measured and effectively acted upon. The difference in data between countries is an important issue.
Some years ago I discussed this matter with psychiatrists specialising in this area that were employed by Wesley Mission and working in the field in various mental health facilities. They felt that the problem of international data collection and standard measuring was hindering the work on every continent. The reason behind the rise in autism in modern western societies is unknown.
For example, there is a suggested vaccine connection to autism. Many parents are questioning whether there is a link between autism and the standard immunisations their children receive. This is getting serious research attention worldwide, particularly in the United States of America.
Honourable members probably have received many emails from parents around Australia who are concerned that the compulsory vaccination of their little children may lead to autism. Vaccines are known to contain preservatives, antibiotics, stabilisers and biological growth media of human or animal origin, any one of which could potentially cause an allergic reaction.
One of those preservatives is Thimerosal, which contains a form of mercury. This has been used in vaccines since the 1930s. It can produce hypersensitivity reactions, but they are uncommon. Particular concerns have focused on its potential toxicity as a heavy metal and its possible role in the measles, mumps and rubella vaccination—or MMR, as it is well known—and the rise of autism.
In response to those concerns and to minimise any risk, all vaccinations in the Australian standard vaccination schedule for children younger than five years are now Thimerosal free. Those with an autism spectrum disorder, or those at risk, may be especially vulnerable, as their ability to metabolise and detoxify contaminants can be compromised.
Is autism related to a genetic component? Autism occurs more frequently than expected among individuals who have certain medical conditions, including the fragile X syndrome. Researchers are investigating the possibility that under certain conditions a cluster of unstable genes may interfere with brain development, resulting in autism. What about the environmental component?
Other researchers are investigating problems during pregnancy or delivery, as well as environmental factors such as viral infections, metabolic imbalances and exposure to environmental chemicals. Children are at greater risk of environmental exposure because of their activity patterns and developing systems. Infants spend much of their time close to the floor where heavy air pollutants settle and where they are in contact with dust and its potentially harmful components.
Their body size means that they are far more likely to ingest more contaminants in food per pound than adults, which concentrates the effects of any food-borne exposures. Their defence systems are also immature, making it harder for them to fend off the negative effects of any such exposures. More importantly, many of their organs, including their brains, are still developing and may be particularly sensitive to toxins.
Anecdotal reports indicate a connection between early childhood illness and infection and the onset of autistic symptoms. A recent review of medical records indicates this perceived association may not, in fact, be real, at least when considering the autistic population as a whole. Nevertheless, it must not be ruled out. Plausible biological explanations include systemic inflammation, impaired cell response and general immune imbalance.
Many of the body’s processes require compounds that must be obtained from the diet, which are termed “essential nutrients”. A deficiency in these essential nutrients can have the same effect as toxic exposure, and if a child has both a poor diet and toxic exposure the effect will be compounded. More than 80,000 chemicals are registered for commercial use in modern societies and most have not been evaluated for neurodevelopmental toxicity.
History shows that many chemicals in wide use that were originally believed to be safe were later found to be toxic, even in small doses, and, often, the symptoms are subclinical and not noticed by medical professionals. Therefore, increased testing and regulation of industrial and household chemicals, with a focus on a precautionary approach, is advisable.
The United Nations is putting a world focus on autism. Recently the United Nations called for society as a whole throughout the world in developed and undeveloped countries to become more involved, more compassionate and more accepting of this complex condition. The United Nations’ global initiatives aim to provide more trained professionals to diagnose and provide effective early interventions and call for collaboration between countries to conduct more epidemiological studies.
On a global scale, autism rates are unknown because of a lack of research and reliable studies, a relative lack of awareness, social stigma about the condition and, as I mentioned before, the variable data collection bases between countries.
I am particularly interested in this initiative because I have supported families with autism since 1967. I take this opportunity to place on the record the achievements of a most remarkable woman. In 1967 I first became aware of the disability of autism. I had never heard the name before; it had never been mentioned in any of my studies of psychology or in my reading.
But in 1967 a remarkable social worker, Mrs Margaret McGregor, asked if I could help her establish a respite centre for parents of autistic children in our area of Melbourne. She had some theories she wanted to work on in helping treat children with this newly known problem of autism. She explained to me the difficulties that parents of autistic children face and the need for a respite centre.
As much as I could I studied autism in the middle 1960s, but did what I could do best: raised funds. As a result, the first centre in caring for children with autism and providing respite for parents was built and opened in the Beaumaris area and it has served that area well ever since. In preparing these notes I got in touch with some of my earlier contacts going back to the 1960s to find out the ongoing service commitment of this first autistic centre ever opened in Australia, and discovered that it is going well.
It was built on good foundations and it is still serving the needs of autistic children in the community. It was not long after the centre opened that the redoubtable Mrs McGregor shifted to Sydney. But she was still active on behalf of autistic children and their families. In 1980 or 1981 she came to visit me once more to ask for help. I was pleased to make that help available through the Wesley Mission’s disabilities services.
So, over the years Wesley Mission’s disabilities services have had a special place for autistic children. For more than 40 years I have been involved with the families of autistic children in the provision of respite and supportive care. Unfortunately, the general public is still unaware of the nature of autism and its impact on the lives of the families involved, and especially on the other children.
Therefore, I have no hesitation in commending this bill and commending the Government for its new program to address the needs of autistic children and their families. I thank the Hon. Amanda Fazio for bringing to our attention the Government’s $6 million package for an expansion of early intervention services for children with autism.