Background

An underpinning philosophy of my business is that I try to assist families in realizing their dreams for their children through their best hopes rather than their worst fears. Knowledge and access to knowledge contributes enormously towards making these dreams realistic and fears manageable.

Culture always has been in the foreground of my personal and professional life. As a young girl growing up in middle class England I did everything I could to pave the way for becoming a veterinarian. Then one day I was told by the School Guidance Officer that I could not become a vet because “that was a man’s work” and I should consider becoming a speech therapist. That was my first memory of a culture and belief system affecting what I did.

As a new graduate I worked in New Brunswick, Canada and became aware of the French-Canadian/Canadian cultural interchanges and the often faulty misconceptions people had about English people. No, we don’t all eat cucumber sandwiches and love the game of cricket!

From Canada I returned to the United Kingdom and worked in Wales where both English and Welsh were spoken and where, if the Welsh intended to exclude you they only had to speak in Welsh. At that time I was using Blissymbolics with my clients. This symbol system was devised originally as a universal language and not for use with people who had complex communication needs. In Wales I recall wishing so very much that we had a universal language so that I didn’t feel so ostracized and lonely. I think everyone should experience what it’s like not to share the majority cultural views and language codes.

In the UK, I married my husband, a non-practicing Catholic but a man with Catholicism in his background. My family was very anxious about this part of him, but it wasn’t until many years later that I appreciated how their upbringing and information dissemination at that time had coloured their belief system and expectations. When my parents were growing up there were job advertisements which included statements such as “Catholics need not apply.” When my husband was at school he remembers being segregated for some lessons and refused certain excursions because he was supposedly different. My point in beginning this article with thoughts on discrimination and inequity is that I believe our approach to many facets of autism are often linked to the way we approach cultural diversity and inclusion.

Professional Understanding

My interactions with people who had autism didn’t really take off until the 1980s. De-institutionalization was happening at that time, women were being seen more in roles of social power and status, and the term “culturally and linguistically diverse” was coming into vogue. The definition of autism seems much broader these days.

Over the last thirty years I think there has been greater acceptance of the culture, language and beliefs of people, disabled and non-disabled, from all over the world. With this greater acceptance has come greater knowledge and opportunities to share information. We have increasingly moved to involving representation from cross sections of communities in our decision making. Do you remember when most “expert panels” would make decisions about minority groups, without representation of that minority group on or consulting to the panel? There have been some very major paradigm shifts and some shifts are still emerging.

It seems to me that today we are just starting to find that saying “I don’t know but I will try to find out for you” is an acceptable answer to a question. I was reminded of this last night whilst watching the news report of a young Indian man stabbed in Melbourne. Initially the media, politicians and the Indian government all responded to the event as an act of racism. Without any evidence, they had jumped to this conclusion. Two days after the event, and maybe now with some ‘evidence’, they were reporting that they “didn’t know for sure if the event was racially driven.” This story reminded me of the assumptions we have often made about the skills and abilities of disability groups i.e. that people with autism are most likely to be severely intellectually impaired. I refer here to the quote by PhD student Tara Flanaghan who states that “In autism research we find that for the full-scale IQ tests, where you give verbal instructions, you tend to under estimate people with autism and their IQs.”

We have to be confident enough to say “I don’t know.”

I don’t know so many things. I don’t know why some people with autism speak and others don’t; I don’t know why I see primarily children from Asian and English speaking backgrounds in this multicultural, Australian society; I don’t know why wealth ensures that information is a unit of currency.

I do know that wealth and positive economic conditions enhance access to information, services and the rights of individuals. In Australia, the federal government has released funding for families of children with autism to improve access to services in the 0-6 (Early Intervention) years and the under 15 age range. This has been done with funding programs which may well improve not only the services children with AS receive, but also the knowledge and skill base of service providers and the data base we have on AS.

In a report by Bob Buckley from the Computational Genomics Laboratory, John Curtin School of Medical Research, the Australian National University Canberra ACT 0200 Australia and Autism Aspergers Advocacy Australia (A4) the conclusion was that “counting young children with an ASD diagnosis does not measure the prevalence of ASD in the population. The number of children reported as having received an ASD diagnosis varies considerably with the age range being observed.” The diagnosis rates for autism and ASD have risen significantly in Australia, as they have elsewhere in the world over the last 10 to 15 years.

The documentation I have read does not clearly describe the incidence of AS across the country and within the various multicultural groups but does stress a need for better professional awareness about AS. I quote from the Australian Advisory Board on Autistic Spectrum Disorders: “Until a national approach to the collection of prevalence data about autism (reaching consensus about approaches to diagnosis and assessment and intervention services to be provided to all affected children and their families) is underway, it is not possible to ensure that services are being provided to those who need them in a timely fashion and, as such, it is unlikely the potential of each individual with autism is being optimized. Opportunities to undertake useful research that has the potential to improve the lives of those affected and their families are also being missed.” (The Prevalence of Autism in Australia: Can it be established from existing data? Overview and Report. p. 63)

Currently in Australia a diagnosis of an autistic spectrum disorder is made by a pediatrician or qualified clinical psychologist. For funding purposes the pediatrician is the one who makes the diagnosis. A referral to a pediatrician has to come from a general practitioner (GP). We don’t know how many children are going undiagnosed because of lack of access to either a GP or a pediatrician. Without this initial referral the family cannot access therapy services and in too many instances, they may not be able to access services anyway because there aren’t any. I have families travel from interstate and overseas to access the services I offer at Options. The distances I am referring to are from 300 kilometers (180 miles) to thousands of kilometers/miles.

The communication options that are available in Australia are fairly typical of what is available in most of the cultures of Western society i.e. country specific sign language (primarily for receptive language purposes), natural gesture for expression and visual communication aides for both receptive and expressive language. Access to technological devices for people with autism varies from state to state.

In Queensland we are very fortunate to have the Medical Aide Subsidy Scheme which funds up to A$5000 for a person with complex communication needs to have their own high tech communication device. This scheme arose from the advocacy and lobbying of a group of professions thirty years ago. I am proud to have been one of the founding members who sat in a small, unfurnished room answering letters from families who had a child with a communication impairment and no means to express what they understood. Our early work was centered on the needs of children with cerebral palsy and people with acquired brain injury. The majority of these individuals were wheelchair bound. It was many years later that the needs of people who were mobile and had diagnoses including autism, was acknowledged and devices became more portable, smaller and literacy-based.

I don’t know if we could say that there is an epidemic of AS around the globe. We read that children with autism are more likely to have mutations in glutathione peroxidase, IIRC and that this suggests that at least for some children a biochemical cause needs to be questioned. Glutathione is used to detoxify the body of chemicals including mercury. I know that many of the children I see with autism have a history of extended periods of antibiotic use, bouts of severe gastroenteritis and/or a strong history of middle ear infections. I don’t know if anyone has charted the incidence of these sorts of factors against time of onset for AS.

I do know from personal experience that what we eat and what we expose ourselves to greatly influences our emotional, physical and cognitive health. Therefore, it would not surprise me to read that there is a link between the immune system, the body’s reaction to medications i.e. some antibiotics, vaccinations and the wiring/re-wiring of neural connections. Maybe someone will do some demographic research linked to incidence of AS and life style in small, remote communities?

Personally and professionally, I am interested to see whether, given the available funding, I start to see referrals from families who are from indigenous backgrounds? In the ten years I have been in private practice I have only seen one child of Aboriginal decent. I imagine that in the public sector, therapists do see children with AS who are accessing either diagnostic or therapeutic interventions. In my practice I have families from eastern European decent, from the United Kingdom and New Zealand and many from Asia. All have differing views and interpretations regarding what autism is and what may be done to improve the quality of life of the individual and their family.

My impression is that in the absence of any clear, plain English documentation for families describing theories, interventions and best practices around the globe, families draw their own conclusions based on how well they understand the literature, what they experience and what they can afford. For example, many years ago there was a wave of interest in the Secretin injections, then Applied Behavioral Analysis. Also of interest was the impact diet and supplements may have on a child’s abilities, the use of sensory integration strategies and family-centered practices.

No intervention has ever come cheaply. Access to interventions (whether appropriate or not) has always come at a cost to the family unit and some sectors of our global community are more affluent than others. I have to add here that some sectors of the community strive to be affluent enough to afford interventions but at the expense of the family unit. I don’t know if there is any research exploring the incidence of family breakdown in families who have a child with AS, but I think this is an interesting and worthy area to explore.

In Australia many families are new immigrants and without extended family support networks. I would expect that family coping mechanisms are better if there is an extended family network. When I worked in the Solomon Islands the ex-pats formed their own ‘family’ network with all the social status and power facets. The islanders had huge extended family networks and would even share the children across ‘won-toks’ (one talk groups). One of my clients with Autistic Spectrum regularly holidays in Fiji and reports that the Fijians accept him and his behaviors. They do not appear to ‘see’ anything disordered about him. Nothing needs to be fixed.

Often it seems to be that we destroy what we don’t understand and if it cannot be destroyed then every effort must be made to modify its attributes until it resembles or complies with the dominant society as close as possible. In Australia today, thirty years after the White Australia Policy, we have a multicultural society which comprises 75% Anglo-Celt, 20% other European, 4.5% Asian origin and 1% Aboriginal. For many Australians, accommodating the needs of people from different ethnic cultures is still a new challenge. Acquiring the information to improve understanding is a huge step forward towards acculturalisation. I still find waving rather than clapping at AS- focused conferences a bit weird but increasingly less so.

Where To From Here?

I am sure that there are many people beginning their journey to know and understand autism better. My primary concern these days is trying to improve the knowledge base of people working to support people with autism. We seem to have addressed early intervention much better in Australia in recent years but what will become of the children of today if we don’t put in place the resources and services to enable them to maintain and expand their skills in post-tertiary facilities.

Our global understanding of autism has to be across a lifespan. I think that one of the best ways of sharing information and improving support networks at any stage in the lifespan, is through the media (DVDs, movies and storytelling). I think this works better than articles for the general population simply because it is a picture and the stirring of emotion that opens the mind… a picture that paints a thousand words.

I suspect that the lead agencies (both private and public) in Australia will be in a better position to make an informed contribution to the subject of autism around the globe than I can. I have lots of questions and a strong desire to know and understand more. When I close my practice for twelve months at the end of this year and travel around Australia with my workshop series, I hope that I will share what I do know but learn so much more, especially from the small rural and remote communities.

Jane Remington-Gurney, MSPA, MA, LCST
Director, Options Communication Therapy and Training Centre
2010

Update: As of January 2016, the author is no longer in private practice.