A group of autism advocates are in Ottawa today to lobby for universal access to autism intervention for all affected Canadians. If you don’t know a person who has autism you might be wondering why people are making a big deal about treatment and services for kids with autism. That’s a perfectly justified question, and I’d like to try to give you an answer.

Autism has been compared to cancer, in terms of how devastating it can be in the lives of people on the spectrum and their families. (For a commentary on that viewpoint please read The Senate Standing Committee on Social Affairs, Science, and Technology testimonies regarding autism, from “David” and from Janet Norman-Bain, whom you may know as “jypsy”.)

I have also had discussions with autism researchers in which the public health response to autism was compared to a response by the same people to cancer. A comparison of the statistics for the two conditions might be educational.

The Geneva Centre for Autism gives the incidence of autism as one is 165 people in Canada. According to Statistics Canada, during 2004 the incidence of Cancer was 452.4 per 100,000 people. That’s 0.004524%, compared to the greater 0.006060% of Canadians who are autistic.

We all know health care wait times are a fact of life these days. So, how long does the average person in Canada wait to be seen for a suspected cancer? How long between diagnosis and treatment?

As expected times vary with the person’s location and the type of cancer. Here are some examples, though:

• In Ontario the target wait time for treatment of neurological cancers is 84 days. Of the times listed, they actually ranged from 37 days at the London Health Sciences Centre (London) to 64 days at St. Michael’s Hospital (Toronto.) The provincial average is 55 days, well below the target.
• In Alberta the cancer treatment wait times are about 2.5 weeks from referral to meeting the oncologist for chemotherapy, and another week before treatment begins. For radiation treatments, first meeting with the oncologist is about 4 weeks to see the oncologist and another 5.5 weeks to begin treatment. (The figures offered were for breast and prostate cancer only, at two specific care centres.)
• In Nova Scotia wait times for radiation treatment were given for two regions, according to patient priority (I - IV.) First priority patients had 0-1 days’ wait. Priority IV patients had a 29-33 day wait.
• Quebec has set a goal of a maximum 4 week wait for cancer surgery. 90%-100% of patients receive radiotherapy treatment within 4 weeks, depending on the region and hospital.
• The Rapid Diagnostic Breast Clinic at Toronto’s Princess Margaret Hospital can do all the necessary diagnostic tests and give the patient a diagnosis, all in a single day.

So it would seem that essentially the wait times in Canada for cancer diagnosis and treatment range from a few weeks to a few months. (I’m not including this last clinic, as it’s the only one of its kind in Canada. It’s a goal to strive for, though!)

Wait times for autism diagnosis and intervention look a bit like this:

• In Ontario the waiting list for behaviour therapy went from 753 to 1,200 children in the last nine months of 2006.
• Children in Alberta are waiting up to a year for assessment.

• In BC, the Autism Community Training web site mentions staffing shortages in every region. Their average wait time, however, is three to five months.
• Just to give a little international data, the CDC shows a 13-month delay between evaluation & diagnosis of autism. There are waits of up to 15 months for assessment in some parts of Scotland.
• Quebec is the only jurisdiction in Canada or the US to require a psychiatrist’s diagnosis. The standard wait time here is over a year for diagnosis, plus another two years on the list for access to intervention and services. At the moment there are 760 children under age 5 on a waiting list for diagnosis, in Montreal alone.

So compared to people who have cancer, people with autism wait anywhere from 4 months to more than a year for diagnosis, and in Quebec the wait is at least three years from referral to first access to services or intervention.

So why are so many children waiting for assessments in Canada? It must be very difficult to assess an autistic child, right?

Wrong! A leading web site for parents of autistic children states that a team of three or four professionals can diagnose an autistic child in 2-3 hours. There are no medical tests required. In fact unlike cancer, there’s no blood test or x-ray or scan that can determine a child has autism. It’s just a matter of observing the child’s behaviour & asking the parents some questions.

I don’t know about my readers, but I just can’t see any justification for such lengthy waits. I think you will agree that if children with cancer were routinely subjected to waits as long as three years before getting treatment the Canadian public would be more than just a little upset.

One of the reasons that people are now lobbying the federal government is that there is very much a patchwork approach to both diagnosis & intervention, and what help a family gets depends more on the luck of the draw than their child’s needs or those of the family. The waiting and the bouncing around between health, social services, and educational institutions creates a situation in which children who need intervention can and do “age off” the waiting lists, getting little if any real help coping with the challenges of living with autism.

Adopting a universal health plan for autism would even the odds, and perhaps with public pressure we can end the long waits due to bureaucracy and inappropriate use of costly medical testing.

With the right voices raised, we might even have a glimmer of a hope that governments will allow funding for things that are really needed. Some families need and want behavioural therapy, but there are other approaches including speech & language therapy, and occupational therapy for sensory integration disorders. Some families need computers and software to augment communication. Some just need help with child care and respite. A cookie cutter approach to autism intervention doesn’t work much better than a cookie cutter approach to education.

OK, I’ll step down from my soap box now, but I hope that I’ve made clearer for some of you this issue of universal funding for autism.

Autism treatment is the subject of today’s Canada AM poll. If you would like to voice your opinion about including treatments for autism under universal health care, please go and vote (scroll down to “Today’s Poll”). You can leave comments once you have voted.

This work was created by Ruby of Freehold 2, and is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 2.5 Canada License.

Excerpts copyright quoted authors. Please visit their sites to read more, and respect the terms of their copyrights. Autism awareness clip art courtesy of Design By Cher. Thanks!

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