Doctors Slowing Autism Treatments

When my son was about 15 months old he began to react violently to change. Go in the house, throw a tantrum. Go outside, yell and scream and maybe try to run into traffic. Friends noticed that he was hard to handle. A teacher friend mentioned that he was quite a handful. A nurse noticed he was not responding to his name, and asked if his hearing had been checked. It was fine. In fact he could come running from two rooms away when his favourite jingle played on the television – even if the volume was turned down so low we had trouble hearing it.

When he began to steal everyone’s shoes and line them up, we wondered. When he threw monumental fits if someone took their shoes out of his carefully organized line, we worried. When he started flapping his hands I knew he was autistic.

From that moment it took over a year to get him diagnosed. It took well over two years before he was able to begin therapy, and that therapy was cut off unceremoniously when he started grade one. At that point he was still non-verbal, in fugue, and unable to function at home or school without numerous adaptations. He was far from cured. He’d just come to the end of his allotted funding.

CTV highlighted the difficulties families have in getting services for kids with autism, in one hour report last week. For some people that was news, but we’ve known about it for years and the experts that work with autistic people know it too.

What I didn’t know until this moment is that Quebec is the only place in Canada or the United States that requires a medical diagnosis for autism. Diagnosis here is often done at a large hospital, because general practitioners don’t feel equipped to deal with autism and other developmental delays.

In our son’s case he had to undergo blood work and audiological testing; he had to be sedated so he could have a CAT scan; he was assessed by a pediatric neurologist, an occupational therapist, a speech therapist and a psychologist. In the end he was diagnosed by a psychiatrist. Just to get the appointments in some cases took five months or more. And once we had the diagnosis we were basically told the hospital could do nothing more to help us. They only did diagnosis. They were too busy to do anything else. No wonder!

We were referred to the local psychiatric hospital for assistance after our son was diagnosed. They did a second assessment, because it was required by some policy somewhere. It took less than a month to get the appointment, and that was during the Christmas holidays. A psychologist and psychiatrist asked us a series of questions about our son’s behaviours. They also observed him playing and interacting with us. Within an hour they were able to give their diagnosis – no invasive procedures, no waiting. Autism can be diagnosed by a psychologist without recourse to all the medical tests.

In Quebec, 1 in 166 children is “on the spectrum” – meaning they have one of the forms of pervasive developmental delay that are grouped together as Autism Spectrum Disorder (ASD.) There are currently 760 children under 5 on a waiting list to get a diagnosis that will allow them access to therapy and other assistance like respite. Out of those children, 90% will be diagnosed with autism. And like our son, many will have to wait for a year or more just to be seen by a psychiatrist and a whole multi-disciplinary team, when a psychologist could diagnose them within the space of an hour.

Why? First of all family doctors are not sufficiently trained to spot autism, and parents are often all too happy to put off the question even if they know something is wrong. Autism is a scary thing. I think we waited three months to approach our doctor, even though we knew in our hearts it was autism.

Parents and GP’s or pediatricians can help kids get earlier diagnosis, though. I urge all parents of young children to make sure they get screened whether they think something is wrong, or not. Make a well baby appointment around the time your child is 18 months old, and make sure your doctor runs through the CHAT, the Checklist for Autism in Toddlers.

Mention it when you make the appointment, and make sure your doctor is prepared to do the assessment. If not, you can find a printable version in several places on the internet and bring it to the doctor’s office with you. It’s just a few easy questions for the parent, and a couple of observations the doctor can make while your child sits with you. It’s not at all invasive, and it only takes a few seconds. All doctors should be doing this assessment, but many still don’t. Insist on it!

If your doctor did a CHAT and suspected autism, though, it is most likely you would be referred to a specialist for testing. GP’s and pediatricians are reluctant to make the diagnosis. Maybe they don’t want to make the wrong diagnosis, maybe they just feel you’ll get better follow-up from a specialist.

The problem is, there isn’t enough money to get all the kids on the waiting lists seen promptly by a psychiatrist. They’re going to wait. Some parents are specifically told by caregivers to put their kids on more than one waiting list (there’s a separate list at each facility) so they bog down the lists for everyone else.

Kids getting a whole whack of expensive tests is another cause of the long waits. Hospitals, especially teaching hospitals, tend to use all the means at their disposal to rule out other possibilities. It’s good training for med students and interns. And it’s how they’re used to operating.

It’s time we changed that. We’re the tax payers who are funding these hospitals. You know what I’m talking about. Ever had an x-ray to diagnose a sprained ankle? Or several hours worth of invasive testing, only to be told your baby “probably” just has the flu? It’s the same thing when you’ve got a kid who has autism – except for one thing.

Your sprain will heal in a week or so, whether you get an x-ray or not. Your baby’s fever will go down with a little over the counter acetaminophen, and his flu will be gone within days.

Autism doesn’t go away. Ever. And no matter how long it takes him to be diagnosed, he won’t get any government provided behaviour therapy at all past the age of five. Some kids age out of the therapy waiting lists, and by the time they reach the top they are too old to get the therapy. Some kids are diagnosed too late to even get on the lists.

This is a national phenomenon in Canada, but it is made even worse in Quebec where children must be diagnosed by a doctor.

One autism researcher told me that if a child was suspected of having cancer there is no way they would wait to get the proper diagnostic tests, and if there was any doubt at all that they had cancer they’d probably get the treatment for it anyway. No one would want to risk the cancer getting worse. Even with the risks of radiation or chemotherapy, the risk of not treating would be worse.

Children don’t generally die from autism, but then the “treatment” for autism won’t hurt a child who doesn’t have it. We can’t say the same of chemotherapy.

Every child even suspected of being autistic should be given free access to full time therapy and support services. If a child doesn’t respond to the therapy, then we can go on to do other testing. If a child benefits from the therapy that’s a good thing, even if his problem stems from something else. Any way you cut it, he’s not going to come out any worse.

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.

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