Not So Fast

Recent advances aren’t all they say they are

By Dr. Anthony C. Hollander

I would first like to congratulate everyone at Autism United for their efforts, and the successful walk held recently at the Belmont Lake State Park here on Long Island, N.Y. This organization has a fresh look and mission into providing services and resources to families. The bringing together of people from all over the place on relatively short notice demonstrates the clear and present concern for the future of families and children with autism. On the other hand, however, it brings together people from a wide variety of philosophies, practices, and opinions having to do with etiological and treatment priorities. Although I really do enjoy such conversations and dialogues, it also brings out just how desperate for answers families have become.

I am totally flabbergasted at all of the “most recent advances” in early detection and diagnosis of autism, and all of the “advances in treatment” approaches to overcome the aspects of the nature of autism.

Before I get started, let me say that I truly believe that most people are really interested in helping both the families and the children themselves. There is, however, a growing population of individuals and groups that are simply preying on these families and children and making tons of money without providing the anticipated results—or research—to support their claims. Making such claims without producing the expected outcomes is just plain fraud.

One of the things that got to me is the recent news coverage of Autism Speaks’ new Web site that clearly shows the differences between a neuro-typical child and a child with early childhood autism. The claim is that these differences make for early recognition and diagnosis, and subsequently, better early intervention. I have to point out that the professional community is not all that supportive of these comparisons. For example, what about a child with a hearing deficit? What about a child with another type of congenital problem? Is responding to his/her name the most important criteria for such a diagnosis? Not so. The syndrome is just that, a series of behavioral and perceptual deficits that span the broad base of “typical developmental milestones” that ordinarily typifies normal growth and development. So let me immediately caution both parents and professionals to view these snippets with a great deal of awareness that deficits could mean several different areas of concerns, not just autism.

Another thing that has me completely baffled is the complete lack of objectivity that is so pervasive in the autism community. I simply find it incomprehensible that in this day and age, with all of the internet resources available to us, that the level of panic and despair, and the urgent need for answers, has led us to make decisions on the part of the child (I always hear, “in the best interest of the child”) based on little to no outcomes, efficacy, or solid research to support those decisions. I will give some examples.

At the walk I had the opportunity to talk with the manufacturer/salesperson of pencil grippers. I asked if there was any research to support the use of these grippers and was told that they are currently getting ready to conduct some research. I introduced myself (he never heard of me), and asked if I could see the protocol for the research. I also volunteered to look at the design and subsequent data to lend a hand in the interpretation of the results. He very politely gave me his card, a catalogue, and told me he would be in touch. Well, that was several weeks ago. Some time ago, with professional students and parents and kids involved in my office I did several demonstrations of the use of pencil grippers. I got all kinds of colors, shapes and sizes of the grippers, and even went out to a local stationary store and purchased all kinds of fat pens and mechanical pencils (even a very expensive Sanford PhD Gold Rollerball pen). For each child I worked with I placed this assortment on the table in front of the child. I gave the child a blank piece of paper with no direct instructions other than to “make something on the paper.”

Repeatedly, time and again, the child would try a variety but settle on a standard pencil or the standard mechanical pencil (they like to click the pencil). The theory is that if the gripper were naturalistically reinforcing, thus enabling the child to perform better, the child would select that pencil. Not the case. In another demonstration, I simply directed the child to use a gripper pencil, and requested that the child do a near point copy of a couple of simple words. I then asked the child to use the pencil of his/her choice, and copy a couple of other words of similar size and complexity. After this I graded the two sets of words looking for the following: “floaters” (letters that are supposed to be touching the bottom line, and were not), “sinkers” (letters that are supposed to stop at the bottom line, but went below the line), “errors of insertion” (where the child put in additional letters that did not belong), “errors of omission” (where the child simply left a letter or two out of the words), and, just to be a real pain, I graded the spaces between the words to see if they were adequate to see where one word ended and the next word began. Each child got a score for the gripper and a score for the non- gripper. Children that had fine motor planning issues, thus, very poor penmanship, did equally bad on both samples; no statistically significant differences between samples. I never published the results until now in this article.

Another thing that got me was a classroom observation I was asked to do. The child in question has ADHD and oppositional defiant disorder (ODD). “He is in constant motion,” I was told, and “never able to attend to accomplish anything.” There I am observing and taking data on the child. I am counting the number of cues given to the class by the teacher, the number of direct cues giving to the child (verbals, visuals, and tactiles), and I am coding the child’s response to cues in terms of correct or wrong. In addition, I am also counting the number of times the child volunteers an answer, calls out, gets out of seat, drops things on the floor, as well as some other things such as sitting next to classmates, etc. The child in question was given a pencil gripper (no comment necessary here) and a seat cushion. Now, the child is in pre-kindergarten, and, in case you might have forgotten, the seats in the room were very small. The cushion kept sliding off the seat, and the child was constantly trying to fix it; this made him look very hyperactive. The child, spontaneously, let the cushion fall to the floor. He sat down and was doing his work, when the classroom aide came over and instructed the child to put the seat cushion back on the seat. At this point the “hyperactivity” resumed. By the way, despite the “constant motion,” after two observations of the child, he had compliance ratios to cuing and spontaneous participation of 100 percent on day one and 82 percent on day two. Day two was the day with the seat cushion. Where is the research to support the use of the seat cushion I asked? Not available, I was told.

Stop being the victim of hearsay, opinions, and pressure to do something now. Be a better advocate for the child. Be a more informed consumer. If you are a professional, be more critical of yourself and what you are doing with the child, and saying to the parents. If you are a parent, be more critical of outcomes, and the desired expectations from the treatments being provided. Everyone should start going to various Web sites for more accurate information such as: www.Pedmed.org, www.Quackwatch.org, www.CDC.org, even www.webmd.org, or a Web site specific to the diagnosis of the child. Stay up to date on what is considered to be best practice guidelines. You would be shocked to hear how many people I run into who never heard about response to intervention!