McCain, Obama, And The Politics of Homogenizing Autism
Aug 3, 2008 William Stillman is a nationally recognized autism self-advocate, speaker, and author of numerous special needs 
parenting books including Demystifying the Autistic Experience, The Everything Parent's Guide to Children with Asperger's Syndrome, Autism and the God Connection, and The Soul of Autism.
Stillman has advocated for persons with different ways of being since
1987, and he serves on several advisory boards including Autism
National Committee. He also writes columns for The Autism Perspective and
Children of the New Earth magazines. In his work, Stillman seeks to
passionately transform perceptions of autism from those defined as
"afflicted sufferers" to those with valuable gifts to offer the world.
His Web site is www.williamstillman.com.
In response to the Autism Society of America and National Health Council’s recent Town Hall Meeting on health reform, both presidential candidates, Senators McCain and Obama, stated their respective positions on autism and how our government should respond. Both acknowledge the seriousness of addressing a “national crisis,” defined by McCain, ranging from funding for research, early detection, treatment, educational supports, and long-term, viable employment for the thousands of soon-to-be adults with autism. Senator Obama also advocates implementing $1 billion annually for autism research and treatment though what that entails and how it would differ from what presently occurs is uncertain (Obama improperly melds autism with other disabilities). McCain rightly suggests “there is no single [treatment] approach” and recommends a “range of activities to improve the…needs of individuals with autism.” (The question of which candidate articulates the optimal position could be re-asked in terms of which candidate has the better informed staffers/ghost-writers most knowledgeable for the issues.)
Regardless of which candidate holds greater autism awareness, both call for increased funding (including Obama’s insurance reform measures). In Pennsylvania, a newly-passed bill has been heralded as a triumph for compelling health insurance companies to fund up to $36,000 per year in specified services for families of children with autism under age twenty-one. More pointedly, and as directed by the bill, insurance will now be required to cover Applied Behavior Analysis, promoted as most efficacious among treatment options. ABA is defined in the bill as “the design, implementation and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce significant improvement in human behavior or to prevent the loss of attained skill or function...” Call me a killjoy, but instead of a victory I see the bill as a defeat. It is, in essence, not only an endorsement of one therapy to the exclusion of others (covered by insurers, that is), it green lights the additional, exhaustive expenditure of funds that no parent is going to decline if it’s there for the taking. But there is a greater issue at heart.
ABA requires that professionals—degreed, specially trained and certified in ABA therapy techniques—engage autistic children in intensive treatment activities. Oftentimes, these activities are in the guise of play and usually take form as “drills” in which the ABA professional repetitively conditions the child to comply with various modes of conduct, activities, and desired responses. In one example, the ABA professional, seated across from the child, holds up a flash card of a cow and prompts the child to identify “cow” until he does so correctly and often enough to be considered to have mastered the skill. Negative responses, tripped by “behavioral triggers,” are identified and modified in the environment or discouraged in favor of positive reinforcement. The positive response of the successful child may be rewarded with verbal praise, a food item, favored activity, or toy.
Sounds great, right? The only problem is that’s not how most autistics think, learn, process and retain information, let alone possess the capability to transfer what’s learned in ways that are functional and appropriate. And if it sounds similar to Pavlov’s dogs you’re not far off base, though what thrills parents is behavioral compliance—their child has been conditioned to suppress his autistic traits long enough to be less of a “behavior problem” and outwardly present as “normal.” But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote. Further, we’ve portrayed autism as so complex and complicated, we’ve disempowered parents from parenting. We’ve supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. This creates system dependency instead of imparting skills, techniques and strategies to parents that empower them to parent effectively, capably, and competently.
If you want me to learn “cow,” help me learn it naturally in the context of a mutually respectful, reciprocal relationship that makes it interesting, pleasurable, and intellectually stimulating to learn. If you want me to learn “cow,” show me a cow. Take me to an open pasture and introduce me to cow; or at the least, let’s learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows. This is the type of quality interaction that those of us on the autism spectrum record for safekeeping and replay years later as pleasing recollections. By contrast, there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming.
As Senator McCain advises, there are myriad options for supporting persons on the autism spectrum to integrate with their bodies, and to tame and refine their reactions to the environment; some are respectful, some are not, and some are simply abuse disguised as treatment. To parents, use as a measuring tool the following queries: Does the treatment presume that my child is intelligent; does it help me further my understanding of parenting my child without system dependency; and is my child happy, interested and making progress? And to our presidential candidates, a caution—be careful of what you wish for when planning for the future of our nation’s autistic citizens, and above all be clear to distinguish the “cow” from the manure.
© 2008, William Stillman
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Reader Comments (10)
The interaction of parenting and medical care for a child diagnosed with autism is far too complex for the simplistic funding approval of specific interventions. Bill articulated this well. Thanks, Bill, and I hope your excellent interpretation of policy proposals is heard by as wide an audience as possible.
You obviously have not done your research on behavior analysis and autism as behavior analysis is the ONLY research based treatment for autism. And you views of the procedures of behavior analysis are far from correct. First, what you state are typical procedures is not the whole picture and there are procedures to transfer behavior into the natural enviornment- in fact- that is one of the main goals. Before you comment on a treatment, you should do the research, and that doesn't mean watch one session of someone doing behavior therapy with a child. You must READ research, such as the Journal of Applied Behavior Analysis and make sure that you are working with a Board Certified Behavior Analyst. You can go to www.bacb.com to find individuals who are board certified in your area. I suggest that you do your research fully so that you can see the true benifits, based on proven research, and then re-examine your opinion on behavior analysis and Autism.
I think it can sometimes be easy to talk about 'autism' and include all the various levels of social functioning. Then, in the very next breath, discuss treatment of such a broad range that it is rather impossible to find much commonality between cases. This large discrepancy between various levels of functioning makes it difficult to discuss treatment, because various levels have a diversity of needs.
ABA is the only treatment supported by a large body of peer-reviewed research to help those that have the most difficult time adjusting/living in the world currently.
For instance, while some children may want to go to the farm and see the cow meanwhile learning that way, there are many children that could not accompany their parents anywhere in a safe manner, and spend most of their day on the ground hitting their heads repeatedly.
These are the kids that ABA has proven to be effective in helping them learn where other alternatives have failed.
When you make the case that ABA must not be good because there are no self-advocates reminiscing about it...I wonder how many of us remember from age 3-5 which things our parents did that helped us learn the most? Do any of us think back to elementary school and discuss how great it was to have to do the multiplication tables? This does not belie their value for learning. This is a false premise from which to base whether treatment is effective or not.
If a child can go to the farm with the parent and learn and talk about cows, then they don't need the intensive intervention you describe. That intervention should not be prescribed to them. Rather -- its value, efficacy, and import is for the children who cannot attend those outings, who will not learn from reading age-appropriate books, and are not learning at the necessary pace to be functional in our society.
Finally, it seems that you consider the fact that ABA requires highly trained professionals to conduct the therapy as a downfall. I consider this facet of behavior analysis to be a strength. Likewise, as we don't want just anyone conducting surgery, we don't want just anyone to walk in homes and start changing environments. Thus, it is good that insurance companies are only required to fund therapies that are conducted by trained individuals, and are supported by research. Otherwise, anyone could create a 'therapy' and insurance would be required to pay for it, regardless of whether it is helpful, or even harmful.
To Howard, I thank you for your perspective and I have followed up with you privately.
To Josh, thank you for investing the time you did in composing your thoughtful response. We'll have to respectfully agree to disagree, though I do wish you hadn't underestimated those with autism so in terms of discussing, in essence, who is "high" or "low" functioning (i.e. what should determine the course of treatment). I'd like to direct your attention to my Web site at which you'll find the document, "Presuming Intellect: Ten Ways to Enrich Our Relationships Through a Belief in Competence." In my work, I don't discuss "behaviors" that require conditioning and modification, but rather that which is a function of "communication" that otherwise cannot be communicated in ways that are effective, reliable and universally-understandable due to apraxia, sensory-motor issues, pain, etc. It is these core values that call for compassionate accommodations instead of behavioral interventions.You may also wish to carefully read any number of my other articles either posted here or on my site.
It does matter what we do to people between the ages of 3 and 5; it holds influence over what shapes people's lives given the messages of "defectiveness" we project upon them. Please know that I, and my friends on the autism spectrum (and not just those with Asperger's but including those who communicate using alternatives to speech), have near-total recall with crystal clarity and can call up imagery associated with our lives as you would watch a home movie or flip through a photo album. So not only can we remember, certain experiences may actually instigate post-traumatic stress disorder if the circumstances have been disrespectful, stressful and, in some cases, abusive. It is a painful, exquisite sensitivity. Again, please see beyond the physical presentation of those who "appear," on the surface, to be severely incapacitated---which, in your perspective, curtails their ability to participate in relationship-building activities from which you suggest they should be excluded for their "behaviors."
And, to conclude, I believe the time has come for mothers and fathers and grandparents to reclaim their role as parents instead of being led to believe that they are not equipped to parent their own children and must, instead, abdicate to a trained professional who will modify their child's behavior for up to 50 hours a week at the cost of $30,000 - $50,000 a year for years at a time. In essence, we've only just altered what we were telling parents 50 years ago when institutionalization was in vogue, only now we're bringing the trained professionals to them, changing the locale from segregated congregate settings to the family home; it's still system dependency and, by many parents---and I've witnessed it---glorified babysitting, and that's unacceptable on the count of both parties.
You've missed my points, I’ll respond and hopefully be better at communicating:
a) I am not saying that what happens from 3-5 is not a matter of importance. Quite the contrary -- it is very important, I'm simply saying that teaching tools utilized then are not often reminisced upon with glowing praise. (Again, I refer you to the multiplication tables...they effectively taught me how to multiply, and I appreciate that ability, but I do not have 'glowing praise' for them)
b) I will staunchly defend the position in which functioning levels are categorized. Note, I did not imply any lessening of intelligence, or competence, only that they are currently not functioning at the level satisfactory to that required in our current society. This is exemplified by the pain and injuries that they inflict upon themselves and others. You indicate in this article that "this is not how autists learn"...the science of behavior analysis is the science of how organisms(and applied behavior analysis focuses on humans) learn. Specifically, if a person is not learning adequately to adjust (you can read communicate, if you'd like) to the environment, behavior analysis has empirical evidence of how this 'way of learning used by most' can be trained. If an individual learns differently than most, there are two choices: teach the individual in the way that they learn [which requires a new approach by all teachers to everything the individual must learn] or teach the individual how to learn the way that most do[allowing the individual to learn even when teaching is not intentionally occurring, ie the absence of ‘teachers’]. Which of these to pursue is a much larger and more in-depth issue, one from which much contention can spring, I'm sure. I will briefly point out that one requires intentional teaching throughout the entire life while the other allows not only learning from intentional teaching, but will allow the person to learn from all aspects of the environment.
I never indicated that people should be excluded based on their behavior. Rather, I indicated that their behaviors preclude them from certain activities by virtues of the behavior itself. If I have a child who consistently bangs his head on surfaces, I cannot safely take him in a car in which I have to be in a seat driving rendering me unable to intervene should he begin banging his head on glass. This is not an exclusion of car-riding because we deem these things as undesirable behavior, this is a preclusion because it is unsafe for the child.
c) I agree – parents must become accountable for their children. Luckily, I’m seeing this occurring rapidly in behavior analysis. I could refer you to several books written by these parents in which they changed careers so that they could adequately adapt their lifestyle to meet the needs of their children. Any good behavior analyst will tell you that utilizing applied behavior analysis is not a session-only thing. It is a lifestyle. Parents must constantly be using learning principles to teach. However, many of these children have learned mal-adaptive ways to get their needs met. The parents are ill-prepared to analyze and understand why certain problems are occurring. Trained professionals who have spent years learning and studying these phenomenon are then helpful when they come in and point out the various factors involved. The parents are then given the tools and nudged back into the role of effective parenting of their children. I do agree with you – when glorified babysitting occurs, that not ethical and all involved should be ashamed. Nor is it behavior analysis.