The first two years following Danielle’s diagnosis, I found myself attending every conference that I could possibly find. I was looking for anything that would help us, help our baby girl. Unfortunately, I found lots of things; too many things. I found therapies that I couldn’t afford and my insurance wouldn’t cover; therapies that may or may not help my daughter’s condition. After the first five or six conferences, the anger began to set in.
I became bitter and cynical about “The Autism Business.” I was amazed at the number of moneymaking opportunities that this disability presents. There is the speaker circuit, conferences, nonpublic schools, research and the proverbial treatment of the month. What was amazing is that few of these things seemed result in direct services to families in need. I’ve attended many conferences that feature experts in the field of autism. After listening to their presentations, you realize what you’ve just heard is a one hour informercial about their new “product”. You’ve just paid $200.00 for this live informercial and for an additional $150.00 per hour, your child can benefit from the latest, research backed autism treatment. Of course, many of these experts will not mention the fact that their success is based upon an extensive screening of the participants involved in their programs. The deck is often stacked in their favor. Some of these professionals will “observe” a child for an hour and write an extensive assessment of the child’s abilities and needs. They do this enough times, package it, join the circuit and sell it. Sometimes I can’t help but question their practical experience. Sounds cynical? Well it is cynical and somewhat unfair.
Learning to deal with having a child with a disability is a process. I don’t know that everyone experiences the same emotions or reacts in the same way. With me, the process began with an unquenchable desire for knowledge and information. I went from looking for answers and support to cynicism and anger at the myriad theories and methods being marketed for our children and families. When you talk about children on the autism spectrum, their abilities, the challenges they’ll face and their future prognosis is so individualized that it is impossible to offer a single “solution” to the problem. Parents will make use of multiple programs, tactics and strategies in an attempt to find what works for their particular child. It took a while for me to work through the anger and frustration. It took a while for me to recognize the obvious; that same individuality that makes future prognosis so difficult is the catalyst for the myriad therapies and treatments designed to address the needs of our children. Just because a particular therapy doesn’t work for my child, doesn’t mean it won’t work for the next child. It has taken a while, but I understand and appreciate the work of all the various clinicians and specialist.
When it comes to autism spectrum disorders, the password is “research”. Research is a double edge sword for me. As a parent, I pray that others don’t have to deal with the heartbreak of finding out that their baby has autism. From that perspective, I understand the need for research. But, it’s difficult for me to hear about it. I don’t want to hear that hundreds of millions of dollars are raised for the prevention of autism. The genetic causes of autism are of little concern to a father who is trying to help his child find her place in the world. It is especially disturbing when I see there are no coordinated efforts to help the millions who currently live with this disability assimilate into our society.
Of course, that’s a parent’s perspective but it is also the perspective of a realist. It is the perspective of the parent of a child who has autism, but also the perspective of a person who recognizes the challenges that await the next generation. The impending retirement of 77 million Baby-Boomers, the astronomical increase in autism rates over the past ten years, the outsourcing of jobs to other countries is an ever-growing economic and social disaster. At some point, we’ve got to decide what we are going to do as a society. If we are not going to educate these children, if we are not going to try and assimilate them into our communities, then we need to start developing a plan to care for the millions of young people that will need long-term assistance. Can Social Security support the seventy-seven million retiring Baby-Boomers and the huge numbers of young adults that will come of age during the next five to ten years?
The business of autism is as competitive as any other business. The wide-open nature of this new and ever-expanding field of business poses the biggest challenge to parents as “consumers”. There are all kinds of treatments, educational methodologies, diets and programs available for sale to the public. There is gluten free diets, Interactive Metronome Therapy, low oxalate diets, the list go on and on. It is very difficult to sort through what’s truly affective and what has merit for your child. As a parent, you are constantly chasing the miracle cure. That is one of the many drawbacks of the Internet; too much information, “Stuff” flyin’ all over, unedited, unsubstantiated and all for free of charge.
Many of these programs and treatments are touted as well researched and proven effective. As I said before, there is no single treatment or program that works for all people. Changes in diet help some but have no effect on others; ABA works well with some children but others respond better to a less structured environment, it all depends upon the individual and his/her needs. This is all fine when you’re talking about individual families who are trying to find a way to address their personal needs and the needs of their child. Unfortunately, the list of “consumers” consist of more than just parents looking for solutions for their families. What happens when the consumer is looking for a program to address the needs of many? What happens when a school district enters into an agreement with an organization that subscribes to a specific treatment methodology that is not appropriate for all special needs students? What happens to the children that don’t survive the screening processes?
You’d hope that these organizations would refer these children who didn’t fit their criteria to another service provider; but that doesn’t happen. From a business perspective, why would they refer a client to another service provider/competitor that has a resource or ability that they lack? It would be bad for business. So the children who don’t qualify for the services that their school district has contracted for are out of luck; they have to rely on whatever “other services” the district can muster. This competitive business atmosphere amongst service providers exists to the detriment of our children and our schools. But, how do you change the nature of business practices? After all, providing services to this segment of our society is a business like any other. However, unlike other businesses, the client base is growing exponentially with no end in sight.
Autism is a disability whose pattern of emergence in conjunction with our increased access to the information has created a wide open market of services and treatments for parents to pursue. In reality, there is nothing wrong or sinister about competition. It’s just the way we do things; you can’t give credit to any other “product” or treatment when you are trying to promote your own. That’s basic business sense; ever heard of “the crab in a barrel syndrome?” It’s territorial, it’s elitism, it’s self-preservation, self-validation and let us not forget, it’s money. In some cases, it can be really big money. The field has a lot of unknowns, parents are desperate for help, schools are looking for relief and support; the time is right for money to be made. This is not the attitude of the majority but it clearly exists, I’ve seen it and so have many others. This is the time to be diligent and cautious in our attempts to find solutions to this growing problem.
It doesn’t make sense to complain that someone who has put a lot of time and effort into studying a particular methodology is making a living from the sale of that information. That’s not what I’m saying at all. I am just expressing my frustration that the “disconnect” is so prevalent. I would like to go to a seminar and have a presenter say, “I believe that my treatment will revolutionize the way we teach communications in our schools. However, it has not been 100% successful in our clinical trials so for those who need other assistance you can try …” I know that sounds ridiculous, after all what business would promote a competitor, right? But, what are they competing for? It’s not as though there is a shortage of clients. That’s our major problem; there are more clients than any of these entities can handle.
The Autism Business is driven by desperation, lack of knowledge and lack of resources. This is further fueled by the fact the professionals, clinicians and doctors, don’t understand how to educate the masses. Prior to 2004, many conferences and seminars didn’t seem to be geared towards parents and those who spend the most quality time with these children. Most conferences seem to be targeting other clinicians and medical professionals. The lack of parent friendly, practical information that came from many of these conferences was astonishing. Over the past few years, the trend has changed significantly. Fueled by parent friendly organizations such as Autism Education Network and Parents Helping Parents many conferences seem to have a much more practical approach that allows parents to apply what they’ve learned in the home
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