Hundreds marched on Queen’s Park yesterday to protest proposed cuts to Autism funding.
Stories and signage suggest that many protesters had children with severe illness. Paediatric disease moves us, as it should.
Compassion for autistic children fuelled the march but was that the only motivation?
Autism
Rates of autism continue to rise.
In 2017, 1 in 42 boys and 1 in 189 girls in the USA had autism. Whereas in 1966, experts estimated the rate at 1:2500, probably severe cases only.
In 1987, the DSM expanded autism criteria to identify more subtle patients. And in 2006, the American Academy of Paediatrics advised to screen all children between 18-24 months of age for autism.
Last year, one study reported that between 1 in 65 to 1 in 88 children have the condition.
A former president of the Royal College of Psychiatrists in the UK caused a fracas when he said that parents seek a diagnosis of autism as an excuse for bad parenting. Parental failure created the autism epidemic.
The Royal College of Psychiatry quickly denounced the article. Autism was not over-diagnosed.
Secondary Gain
Everyone benefits from a diagnosis of Autism.
Teachers get extra help in the classroom.
Parents get extra resources at home and in school.
Therapists perform tests for $2000-3000 per patient.
Family docs enlist help from consultants and special programs.
Consultant physicians specialize in diagnosing and following kids with mild autism.
The secondary gain is massive. Autism is now its own industry.
Bernard Shaw said something similar in his play, The Doctor’s Dilemma, 1906. Doctors may do major surgery just because they make money at it.
Price Elasticity
Shaw was too cynical. Most doctors work to avoid major surgery on their patients. And most patients work hard to avoid it too.
Major surgery has a price elasticity approaching zero. Demand will not increase, just because treatment is free.
But demand for other things, such as massage therapy, will increase, when treatment is free. Massage therapy has an elastic price: People consume more, when they do not have to pay for it.
This does not mean that some patients do not need massage therapy, or that they waste the resource, or that they just like massages.
For services with price elasticity greater than zero, marginal benefit determines demand.
How much is the service worth, to me?
What would I give up in order to have the massage, if it were not free?
For some patients, the marginal benefit of massage therapy is less than what they would pay if it were not free. In other words, if they had to pay for it, any benefit above a cost of zero would not be worth the expense for them.
Without question, students and seniors often have zero disposable income, eat cheap food, and live in small apartments. They choose between massages and food. They have no margin to even consider benefit. But most other people consume guided by marginal benefit and cost.
Catastrophic Insurance
Medicare functions best for emergency and trauma care: things with a price elasticity that approaches zero.
For everything with price elasticity above zero, secondary gain and consumption, even with narrow marginal benefit, will collapse the system unless we ration care.
In other words, if too many people gain from a diagnosis, and if people consume ‘free’ services even though they benefit very little, the system will collapse.
Autism places a heavy burden on families. It is a serious disease and warrants special attention. We can often make major improvements. Autism is a worthy goal. But it is one among many others that we never hear about.
We need to have a discussion about what we can do, not just what we would like to do. Many other conditions also vie for attention and funding. What can we accomplish and at what cost?
At some point, the government should be more forthright about the reality of rationing to sustain a public system. Until then, we will see more marches, each for a good cause.
Photo credit: Toronto CityNews
What a gutsy blog. What you say makes sense but may lose you some friends. I hope they don’t shoot the messenger.
Hey Gerry
Please see the long comment I reposted below from a Mom on FB who has an autistic child. She added powerful commentary that makes anything I said look like milquetoast.
I really tried to emphasize that Autism is a serious disease. Did that not come through?
I also emphasized that the whole mental-health-industrial-complex is organized to gain from it in an environment with limited resources for all conditions.
Thanks so much for reading it!
Cheers
As I read this Shawn, I felt that I could exchange Autism for PTSD and say much the same thing. There is no doubt that PTSD is real but I feel the lawyers have latched onto the disorder and push the doctors to make the diagnosis. Anyway, it’s very brave of you to write as you have and I fear that Gerald is correct that you may lose friends, although not too many I hope.
Thanks Ralph!
I think we have to ask many hard questions, or our system will collapse. I agree, autism is just one of dozens of other conditions and diagnoses that benefit from the single-payer approach. How can we solve the problem? Who gets to decide how much is spent on Autism vs PTSD vs back pain vs Fibromyalgia?
We have massive shortages to access mental health services. Should we cut access to acute care to increase access to mental health?
I do not have answers. But we need to have the discussion. I am sorry that you and Gerry think I’ll lose friends for asking. I tried to do it with compassion. Someone has to start asking.
Thanks for reading and posting a comment!
Cheers
Why not do a blog is rationing.. or a couple of blogs.. lots of material out there. Then do a blog on values vs rationing.
Good thoughts, Ann.
I guess in some ways, I’ve been writing about wait times and rationing on and off for almost 6 years. I do like your call to discuss values. I think too many of us pick and choose values or twist values into agendas that support preferred political designs.
Thanks so much for reading and posting a comment!
Cheers
A doctor Mom shared this powerful comment on FB:
“so. so difficult. My son has ASD. We have received nothing.
Interesting, that ASD adults that have GRADUATED from college/university still have about an 89% unemployment rate. The annual median earned income of an adult on the spectrum is about $2900. That’s a lot of financial input for not a lot of return….again purely financial.
I have been allowed to participate with a group of Autistic Adults. There are horrifying stories and PTSD from some ABA therapies. There are other therapies. The ABA providers have their own huge financial interest in keeping their funding. They set there own fees, up to $80,000 per year and NOT under any government control.
A large majority of the spectrum adults will require ODSP or equivalent. Supportive housing. The wait times are huge. I know of one “child” in his 40’s, living with his elderly mother and he became physically aggressive and hurt her. His brothers, a lawyer and a reporter, were going to go public about the issues and suddenly a spot was found for him. Another boy in his 20’s found a spot. His mother works for a group of lawyers that do Human rights trials against the government.
Adults fear their own death as no one will care for their adult child. The stories are harrowing. Parents are desperate. Desperate parents do not always make the most rational decisions. Having only 25% of children on a list receive assistance is criminal. Having all receive some is also not “good enough”. The previous government removed thousands from the list by reducing the age at which the list stopped. They did not serve any of those children.
A colleague that specializes in ASD states that the list for diagnosis needs to be shorter. He has found that a lot on the list did NOT have ASD. NOT getting the diagnosis has angered parents. But, a correct diagnosis, as a first step, earlier rather than later is the preferred.
I am still unsure why this falls under the social services umbrella and not MOHLTC. Not that MOHLTC could manage it any better or has the resources, but a developmental, neurological disorder seems more medical to me…….. my 2 cents. Like the Silver tsunami that no one prepared for, all of these children will become adults.”
That was so well thought out and expressed, with insight into our motivation and behavior.
Government does have to decide where to allocate limited resources. It will either be by careful intention, or by emotional reaction.
Thanks! Rationing is part of the deal with single-payer, government run healthcare. It would be nice if they start admitting it.
And so it begins …..
The ongoing deterioration,spiralling past mediocrity,rationing past acceptance,while gov’t /administrators believe the system can be saved by ‘controlling the doctors’.
I think not ….
The ‘Oregon solution’ may help,whereby the public lists 1500 diagnoses that the system will fund and private insurance funds the rest … something has to change.
How long will this madness last ?????
How long indeed.
Great comments, Ramunas. The system cannot continue with even more rationing than we see today. I think we should have a true social safety net. And citizens should be allowed to purchase extra insurance for things that fall outside the safety net, just like they do in every other developed country around the world.
Thanks again for posting!
I think you are a bit off base here Shawn. As you might recall, I have a son with Autism. We have been carrying the cost of his very expensive care and schooling for years. The best thing we did was send him to a special school for autistic children $25k per year. We would not have and did not have the resources to do this earlier. It was only when his grandparents who are well off, offered to pay for this schooling. He went for 3 years and it made all the difference to his being able to cope with his condition. Some of his class mates had to driven to school from an hour away because of the rarity of schools like this. We could have maybe afforded more earlier if we got a credit for the school taxes we were paying and not getting anything for. Autism care is really expensive and it takes a long time.
Brilliant comment, Ernest!
So glad that you shared your story and took time to post it here. As I mentioned, this is a real, serious condition. Parents need and benefit from the support. AND there are so many other conditions like it.
When we are not allowed to purchase insurance to cover the cost of the care our children need, we are all at the mercy of government rationing. It is not fair.
At the same time, we have to have our eyes open to the massive pressure from teachers and parents to get a diagnosis. Does this benefit ALL children who end up labelled for life? I do not know. I hear from many parents who do not seem to think that their children have a diagnosis but are under pressure from the educational system because the system cannot accommodate anyone who falls even slightly outside the “norms” of being able to sit in a desk all day.
Again, great to hear that your son is doing so well! A single-payer, government run system will always include rationing. We need to talk about it and whether it is appropriate to make it illegal for citizens to purchase insurance to cover care that the government has rationed away.
Warm regards,
Shawn
Shawn: I empathize with those parents and children who are diagnosed with autism but I have to say I believe we are too quick these days to look for a diagnosis. I speak from personal experience. My son, David, when he was 3,4 and 5 was kicked out of every daycare in Kingston. At the daycares’ urging I took him to a psychiatrist, where he got a clean bill of health. I was so worried he’d be diagnosed with ADHD. My solution was to take him out of daycare and hire a nanny. It wasn’t easy: I was a single parent, David’s father having died the year before. But the 1:1 attention made all the difference and now he is an executive and a lawyer at a major Canadian bank.
Wow. Great story Martha! Thanks so much for sharing it.
I am so sorry for taking so long to post it live! Been distracted…
Thanks again