Kids with autism need help, but so do parents

At sea without a paddle. Lost in a maze. Roaming a foreign country where you don't speak the language and don't have a map. These are the kinds of analogies that routinely pop up when parents describe what it's like being thrust into the world of autism after a child shows signs of the neurodevelopmental disorder.

And this is terrain that McMaster University PhD student Stephen Gentles is exploring in one of the few studies to focus on challenges faced by parents as they navigate an overburdened and complex system of autism supports and services.

Halfway through the two-year project, the theme is clear: "Having to make your own way" was cited as the biggest hurdle by the 20 parents he has interviewed extensively. The research will include 30 parents from the GTA and outlying regions who have a child under 12 diagnosed within the last five years.

Other obstacles include wait lists, "having to fight for everything," high stress and not being able to find appropriate information about what to do next and what their child needs most.

Gentles, from the Faculty of Health Sciences, has created a flow chart that tracks the problems, starting with the early pre-diagnostic stage when parents first notice developmental problems in a child, through assessment and diagnosis, and finally the process of trying to access services funded by the province.

These parents have the most acute need for facts, says Gentles, because the autism spectrum is wide, the disorder is complex and there are myriad ways it manifests at different stages of life. These kids have multiple needs but each child also responds differently to specific interventions. There are few rules of thumb.

At the same time, parents face a baffling system of publicly funded and private agencies, centres, research hubs and medical facilities that provide services but may also have long wait lists, protocols and application forms.

"There's a kind of fear based on having insufficient information," says Gentles, whose work is being overseen by a team that includes renowned autism researcher Dr. Peter Szatmari, a McMaster professor and director of the Offord Centre for Child Studies in Hamilton.

"That motivates parents to move into high gear and ramps up the sense of urgency to keep looking."

It also takes a toll - on mental health, marriages and other children in the family.

Gentles hopes that highlighting the problems will lead to solutions, whether through better coordination of services or case managers to help guide families.

"Parents who've experienced the system know it could work better."

Is there an autism epidemic?

Here's another response from a well-respected Toronto geneticist to our question "Is there an autism epidemic?" We will be posting more in the coming days:

Stephen Scherer, Director, University of Toronto McLaughlin Centre and The Centre for Applied Genomics, Hospital for Sick Children:

The Autism and Developmental Disabilities Monitoring Network of the U.S. Centers for Disease Control (CDC) has surveyed the prevalence of autism spectrum disorder (ASD) among 8-year-olds from up to 14 U.S. centres every two years since 2000. The most recent analysis pertains to the 2008 cohort, estimating overall prevalence as 1 in 88 children — almost double that of the original, 2000 cohort. So I suppose this substantial observed increase would indeed support the possibility of an autism epidemic, with the caveat that these data cannot distinguish the proportion of the increase attributable to changes in case ascertainment, as opposed to a true increase in ASD prevalence.

Our colleagues in Montreal, Drs. (Mayada) Elsabbagh and (Éric) Fombonne, undertook a comprehensive survey of epidemiological reports to catalogue the global prevalence of ASD and found that it is often under-recognized, particularly in the developing world. Variation in prevalence estimates is largely accounted for by variability in ascertainment and measurement, but environmental exposures may also play a role.

All of these data and my own observations lead me to believe that ASD prevalence is rising incrementally, but that so far there has not been an outbreak, nor is it pandemic. We now know from both the genetic and clinical sense that ASD is highly heterogeneous, so there are many targets or paths that can trigger or lead, respectively, to a diagnosis of ASD. Add to this mix the many new selective pressures being imposed on our brain’s development by the information-based society we now live in, and these phenomena too may account for some of the increase we see in ASD prevalence.

 

Is there an autism epidemic?

The U.S. Centers for Disease Control says 1 in 88 children is now diagnosed with autism. We asked autism experts the question: Is there an autism epidemic? Here's another response from a Canadian researcher. We'll be posting more responses in the coming days.

Jonathan Weiss, Canadian chair in autism research, York University professor:

What a lot of people are saying is there are many reasons why those rates are higher than they were before. One of the major things we are realizing . . . is the complexity around this and that it really is a spectrum of difficulties. Before, we were looking for one specific type of person or look. Now we are seeing things much more broadly. So I think that awareness, better ability to diagnose, better measurement and better ability to track exactly what’s happening might be a lot of the things that are related to the newer numbers relative to older numbers.

When it comes to the cause of this, I’m not the best person to answer that because I’m not looking at the genetics or the environmental influences on the genetics of a very complex disorder.

Awareness, more ability to diagnose and better-trained professionals across Canada and in the U.S. are recognizing many of the people who before weren’t being recognized.

Extreme male brain theory of autism: extremely smart or extremely sexist?

The “extreme male brain” theory of autism sounds like the setup for a men-are-from-Mars-type joke, and sometimes it is. At the Geneva Centre’s autism symposium in Toronto two weeks ago, speaker Peter Gerhardt prompted a few chuckles from his mostly female audience just mentioning this idea: that autism, a developmental disorder characterized by social and communication impediments, is an amplification of typical male brain behaviour.

It’s more than a punchline, though. A notable autism researcher, Simon Baron-Cohen of the University of Cambridge, described the idea in a 2002 paper which has since been cited 688 times, according to Google Scholar. He’s also authored a book called “The Essential Difference: Male And Female Brains And The Truth About Autism.”

In the paper, Baron-Cohen defines empathizing as “the drive to identify another person’s emotions and thoughts, and to respond to these with an appropriate emotion.” Systemizing, meanwhile, is “the drive to analyse the variables in a system, to derive the underlying rules that govern the behaviour of a system," plus the drive to construct systems and control them.

On tests that measure ability to read facial expressions and discern emotions – empathize – women score best, men score worse, and people with autism score the lowest, says Baron-Cohen. But people with autism often have specific abilities in fields like math or chess, and prefer rule-based information – systemizing.

In an article in The Guardian, Baron-Cohen wrote that a “key feature” of the theory is that a person’s sex doesn’t necessarily determine what kind of brain they have: men can have empathizing brains, and women can have systemizing brains. But, he says, on average, more men have the “male” type of brain than women, and vice-versa.

He cites as evidence the anecdotal impression that “Men are more likely to spend an hour happily engaged in motorbike maintenance, light aircraft piloting, sailing,” and other hobbies that involve systems. “Women are more likely to spend hours happily engaged in coffee morning or pot-luck supper, advising friends on relationship problems,” or caring for loved ones and pets. In the 2002 paper, he also cites several studies, including one that supposedly showed women value reciprocal relationships while men value “power, politics, and competition.” That study, however, is more than three decades old, as are several others he cites to prove the brain-gender divide.

A lot of this is probably making feminists scream, and Baron-Cohen does say that culture and socialization play a role in determining why the male and female brains are the way he says they are. But he thinks that biology partially determines it too.

The theory is not without its scientific detractors. “What are the implications for women with autism – that they’re really men?” says Susan Bryson, who holds the Craig Chair in Autism Research at the IWK Health Centre and Dalhousie University in Halifax. The current ratio of boys diagnosed with autism vs girls is 4:1.

Bryson says there is very little evidence to support the extreme male-brain theory.

“It’s sexy. It captures the attention of people. That doesn’t mean it’s sensible,” she says. 

Whatever your feelings, the theory throws up a lot of questions about women on the autism spectrum. 

How to integrate people with autism into society

Individuals with autism spectrum disorders have far more difficulty fitting into society than the average person. So Glenn Rampton, chief executive officer of Kerry's Place Autism Services, asks: Why do we insist on making them fit in?

Instead of forcing them to modify their behaviour, he says researchers, clinicians, and care-givers need to look at how to change the environment to fit them.

Rampton, a former senior psychologist with the Canadian Forces, says we already do this in the military.

Think of the pilot flying an F-18 aircraft. He or she is working in a hostile environment, just like someone with autism. The measure of success for the pilot is they have to be able to fly the plane, compete and win. To do that, they have to be well trained. But to fly an F-18 aircraft, they will need a number of environmental modifications, such as a pressurized suit, a digital display to manage the huge amount of information coming in, and computer-assisted flying equipment.

"Those are all modifications that allow someone to exist in a hostile environment," he says. If we can do that for the military, there’s no reason why we can’t do it for people with autism, he reasons.

Individuals with autism and Asperger's often have a unique ability to focus intently on a task or interest. Agencies working with adolescents and adults with autism should be crafting programs that help them discover their unique skills and talents. Then they need to tailor vocational or work environments to meet their specific needs.

Rampton sees it as a three-step process: How do you define success for this person? For someone with Asperger's it may be employment, while for someone with non-verbal autism, it may be a vocational placement. What are the person’s abilities? Training and preparation can help them hone their skills to suit a vocation.

Finally, what kind of environment do they need to be successful? "Basically, we are talking about how do we define success, how do you get them ready for it and in what environment?" he says.

Rempton, whose 42-year-old daughter has severe autism and does not speak, says he learned the hard way. "By forcing people to be like everybody else, to live in a neurotypical world, it resulted in huge anxiety," he says. "The majority of people with autism have anxiety, whether they have Asperger’s or are like my daughter.

"My daughter has anxiety and that was our fault for not understanding how to create an environment to suit her better," he says. "She is not going to be able to do the same sort of things an Asperger’s person could do. But she can still have a good life in an environment that suits her."

Is there an autism epidemic?

The U.S. Centers for Disease Control says 1 in 88 children are now diagnosed with autism. We asked autism experts the question: Is there an autism epidemic? We received some intriguing responses and will be posting them on our blog in the coming days.

Frank Viti, chief executive officer, Autism Speaks Canada:

Autism is the fastest-growing developmental disorder in the world, with the prevalence of diagnosis having increased by 600 per cent over the last 20 years. In 1975, the prevalence number was 1 in 5,000; in 2001 it was 250; in 2012, the prevalence number has jumped to 1 in 88. As Bob Wright, co-founder of Autism Speaks, was quoted as saying, “We have an epidemic on our hands. The costs are staggering and will continue to rise as prevalence continues to increase.”

In the U.S., autism costs society $126 billion per year, which has more than tripled since 2006. With the new prevalence number of 1 in 88, this will jump to $137 billion.

Although there are some positive signs that show an increase in awareness of autism spectrum disorders, as well as better detection and reporting of autism, these positive signs come with a need for programs and services to assist those affected by autism. There is also a greater need for access to treatment as the prevalence numbers increase. With this extra awareness, detection and reporting comes an increased need for funding.

Accessibility is also a problem. There are long wait times for diagnosis, and then it is a struggle to secure the appropriate educational services and therapies such as speech, behaviour and occupational therapies that are important to the development of someone on the spectrum. There is also a greater need to make ABA and IBI therapies more accessible. Canada’s Standing Senate Committee on Social Affairs, Science and Technology reported that in 2007, families were paying more than $60,000 a year on autism therapy.

We all must keep in mind that autism is not something you grow out of. There are thousands of adolescents and adults living with autism and there are not enough resources to help them find housing and employment so that they can lead meaningful and fulfilling lives with the same opportunities that their typically developing peers have. In 2007, the Standing Senate Committee reported that there were more than 144,000 Canadian adults on the spectrum and 48,000 Canadian children. As these young children with autism grow up, they will contribute to the increasing number of the already underfunded and under-resourced adult population on the spectrum. Much more attention needs to be paid to developing programs and services that will help those adults on the spectrum now and to prepare for those who will enter adulthood on the spectrum down the road.

Autism places a tremendous financial and emotional burden that families must confront on a daily basis as they battle this disorder. They need resources to help lessen the constraints that they face in accessing diagnosis, treatment, programs, services and therapies. Costs need to be reduced and access increased, and until there is more substantial evidence that this is happening, autism will be an epidemic in our society.