Max Asofsky was diagnosed with autism when he was 22 months old.
“He was still Max,” said his mother, Melanie. “He was still our son. It wasn't as if he had somehow changed. But the little things that we thought were so sweet and cute and funny and his little ‘Maxisms’ were autism.”
This year, as many as one in 166 children will be diagnosed with autism — that's up from one in 2,500 just a few years ago. Some are calling the explosion an epidemic. And as the number of children with autism has grown, the demand for services to help these children has skyrocketed.
Max attends The McCarton School in Manhattan, which was started in 2002 after developmental pediatrician Dr. Cece McCarton realized she had no place to refer patients diagnosed with autism.
“The schools that were there were so overloaded and there were absolutely huge waiting lists,” McCarton. “So we said, ‘OK, this makes absolutely no sense, we're going to start our own school.’"
Long waiting lists
Families pay $70,000 a year to send their kids to The McCarton School. Right now the schools can accommodate 22 children; there are more than 100 on the waiting list.
“I'm a physician and I’m supposed to help people,” said McCarton. “And it’s very hard to say to a parent, ‘I don't have room,’ or ‘Gee, I'm sorry you're now 54 on the waiting list.’ It is unconscionable to have to have somebody come to you for help for their child and say to them ‘I can't help you.’"
As the population of autistic children grows, so does the demand for therapists, particularly those trained in Applied Behavior Analysis, or ABA. Keith Amerson and Alisa Dror opened the Tri-State Learning Center in New Rochelle, N.Y., in 2001 and currently provide ABA services to 35 families.
“When you look at the demand for the services, they're high,” said Amerson. “When you look at the supply of providers and agencies, it's low. When you have a supply and demand situation, it provides a great opportunity from a business perspective. But also when you look at what you're doing, you're changing a family's life. And I think that for me is the most important thing.”
“At this point we're getting calls on a daily basis from families with newly diagnosed children,” said Dror. “That was really unheard of a number of years ago.”
With this much demand, it's no wonder that some therapists are earning up to $125 per hour. And as a result, more students are applying to university programs that provide training in ABA.
'They already have jobs'
This year, the Columbia University Teachers College program in Applied Behavior Analysis had so many applicants it had to turn away 40 qualified students. That's twice as many as it admitted.
“A lot of our folks go and start schools — they're Ph.D. people so there's a huge demand for those,” said Prof. Douglas Greer. “And so they'll be gone; I mean they already have jobs.”
“You can't be doing this for a paycheck," said Jeanne Speckman-Collins, a student in the program. “You need to be in it with your whole heart and with the right intentions and not be in it for the money.”
But some new businesses are making money. Different Roads to Learning is a catalog-based company that offers products specifically for schools and parents running ABA programs.
In its first year the company took in $200 in revenue. This year revenue will reach almost $2 million with profits of $100,000.
“Everyone in our organization understands how difficult and challenging the life is of living with autism,” said Julie Azuma, founder of Different Roads to Learning. “Whether your child is high-functioning Asperger's or someone with severe behaviors, we have a complete understanding of how difficult it is.”
Difficult emotionally and financially, with families often paying over $5,000 a month for home-based ABA programs, supplies and other therapies, with little or no insurance reimbursement.
“Everything's expensive,” said Melanie Asofsky. “It's a significant burden on the family, but obviously worth it. Worth every penny.”
The increased demand for professional services has also led to new sub-specialties in existing service areas. There are now real estate agents who know which school districts are best for kids with autism, lawyers who focus exclusively on special education law, and even dentists who specialize in treating children with autism.