The autism epidemic
Autism strikes one in 200 people in Canada – and one in 165 children. And in the U.S., the number is even higher: the Center for Disease Control and Prevention (CDC) recently announced the disorder affects one in 150 children, making it more common than pediatric cancer, diabetes, and AIDS combined.
Recognized as the most common neurological disorder affecting children, the number of autism cases is increasing worldwide. In fact, it’s increasingly likely that you or someone you know is already affected by autism. But what is it, what are the causes – and what can be done about it?
What is Autism?
Autism refers to both Autistic Disorder and a range of disorders that are called Autism Spectrum Disorders (ASD), a term that includes Autistic Disorder, Asperger’s Disorder (or Asperger’s Syndrome) and Pervasive Development Disorder.
People with ASD develop differently from others, particularly in the areas of motor, language, cognitive and social skills. Symptoms of ASD are highly individual and range from the mild to the severe.
Here are some examples of common types of characteristics and behaviours in a child or adult with an ASD, from the Autism Society Canada website:
Difficulty with social skills
• Some people with ASD show no interest in other people
• Others might be interested in people, but not know how to talk, play with, or relate to them
• Initiating and maintaining a conversation is usually difficult for people with ASD who are verbal
Problems with communication
• Speech and language skills may begin to develop and then be lost, or they may develop very slowly, or they may never develop. Without appropriate intensive early intervention about 40 per cent of children with ASD do not talk at all
• People with ASD might not be able to interpret non-verbal communication such as social distance cues, or the use of gestures and facial cues that most of us take for granted
Repeated behaviours and restricted interests
• People with ASD may have repeated ritualistic actions such as spinning, repeated rocking, staring, finger flapping, hitting self, etc.
• Small changes in the environment or in daily routines that most people can manage might trigger acute distress
• They may have restricted interests and seemingly odd habits. They may talk about or focus obsessively on only one thing, idea, or activity
Unusual responses to sensations
• People with ASD may have both auditory and visual processing problems
• Sensory input may be scrambled and overwhelming
• Sensory problems vary in autism, from mild to severe with over and under-sensitivities
Stories from parents of children with autism are often heartbreaking. While some children with ASD never develop in a typical way, others seem to develop normally and then regress, losing their capacity to communicate and becoming trapped behind a wall of strange behaviours.
Causes of autism
As such a prevalent condition, the question on many people’s minds is: what causes autism? So far, the answer is unknown. ASD does seem to run in families so a genetic link is likely, although the rise in ASD cases may point to an environmental trigger as well.
But speculation around the cause or causes runs rampant. In the 1960s and 70s there was speculation that an emotionally distant mother produced an autistic child. Vaccinations have also been a suspected cause, particularly those containing the mercury-based preservative thimerosal (no longer present in most vaccines in Canada). Children were observed to develop signs of ASD after receiving the vaccines – but because symptoms of ASD frequently appear at those ages, it could be coincidental, and the scientific research has not generally backed up this belief.
Television has also been put forward as a potential trigger, as a Cornell study in 2006 found a correlation between increases in autism rates and the influx of cable television. And one columnist suggested that the entry of women and men into the “geek workplace” world of information technology also is a factor, as women and men with autistic-spectrum tendencies meet, marry, and reproduce.
But these remain largely speculations. Canadian researchers are on the forefront of the scientific research, and have potentially identified a DNA marker for autism, which may prove that there truly is a strong genetic factor. But so far the jury is out on what causes ASD.
Another perspective is that autism rates are not actually rising – but that diagnosis is becoming more common, accounting for the rise in reported cases. If so, it seems less likely that there is a “new” environmental trigger impacting on autism rates. Regardless of the root cause, it seems certain that autism is a serious and prevalent disorder.
Although not required by every person with ASD, intervention, treatments and services are necessary for many, if not most, people with ASD to help them to reach their full potential. The range of therapy is large: special diets, behaviour analysis and intervention, social and play related interventions, speech and language therapy, sensory integration and motor skills therapy, and other counselling approaches.
What seems fairly certain is that early and intense intervention is critical. This week, the Ontario government announced that it would increase funding for Applied Behavioural Analysis Therapy in order to make it widely available across the province. But parents believe they are not receiving enough support for the level of therapy needed. Many extended families are struggling to work together and provide the intense one-on-one, daily work that seems most likely to reach their autistic family member.
Not everyone who has an Autism Spectrum Disorder believes that they need treatment – or even that it is a disorder. For example, some adults who have Asperger’s Syndrome, or “aspies” as they sometimes call themselves, believe that they are fine just as they are – even if perceived as odd by “neurotypicals,” or people who don’t have an ASD. They perceive their quirks as a difference in culture rather than a disease. Aspergia.com (http://www.aspergia.com/) looks at the question of what evolutionary purpose Asperger’s might meet, and what society would look like if everyone thought in the way that those who have Asperger’s do.
The Autism Society Canada states,
It is important to distinguish between the clinical terms and descriptions of ASD and our understanding and knowledge of people who live with ASD. We need to understand clinical terms used in medical settings, during diagnosis, and in certain treatment or intervention settings. However, it is wise to keep in mind that these terms may also be seen as limiting labels to some people with autism who feel that ASDs have been “medicalized” to the point where individuals who are unique in their skills, abilities and value to their communities, have been forgotten or eclipsed by the “disorder”.
One of the most difficult aspects of living with autism is the sense of isolation. As one anonymous mother writes on a website:
Kids do not like change or disruptions to their daily patterns. Their brains are hyper-wired for structure and order and the world is a very, very unorderly place. The average mother doesn’t always go to the same store at the same time, the same way, the same aisles every single shopping trip. Try explaining that to a non-verbal autistic 5 year old. Even worse, try explaining the whole situation to the other 250 or so people in the store who are witnessing your child’s complete breakdown over the change in his routine…. Chances are you won’t have much luck, because now you’re also crying and having difficulty breathing and the woman 3 carts in front of you with the neurologically typical children tells the checker that your kid is just a spoiled brat and probably needs a good spanking. 4 aisles and 7 carts away there is a man who can only hear all of this hubbub and is now cussing you out wondering why you won’t just leave. All of the combined cacophony leaves the autistic child even more upset, confused and frightened and increases his tantrum level, which you didn’t think was possible. Do you now leave your full cart in the store and head for the hills? How will the shopping ever get done now?
…The autistic child doesn’t have a flashing red light over his head that announces to the world that he’s autistic. In fact, he’s just another beautiful looking child, much like yours.
By becoming more aware of Autism Spectrum Disorders and continuing to support research and treatment in this area, we as a society can reach out to parents and children with autism.
Speaking up for those who can’t