Thursday, January 25, 2007

Autism Interventions Over the Internet

The Canadian Senate committee examining autism funding heard testimony from an autism expert, Dr. Jeannette Holden, in which Dr. Holden advocated the use of computer technology to alleviate the problem of providing autism intervention services to families of children with autism. Dr. Holden referred specifically to Virtual Experts Clinic a company which produces an online program called Autism Pro. Dr. Holden stated that Autism Pro "is not meant to replace therapists, but gives parents on waiting lists a chance to start doing something with their children."

The waiting list problem for autism interventions is a serious problem in most areas of Canada and if a child is not actually involved with a therapist then in one sense it could not be said that parents would be replacing therapists by relying on an internet program to provide their own intervention for their children while they wait for the assistance of actual therapists. In a different sense, however, parents providing interventions are in fact performing the functions of, and thereby replacing, therapists. The parents who provide such interventions may or may not have any training or supervision while they are doing so. As a parent I understand fully that a parent will probably not want to sit back and wait for a therapist to become available to work with their child. Non-professional intervention though raises the question of potential harm from improperly provided interventions.

Virtual Experts Clinic originated in New Brunswick. As an active member of the autism advocacy community in New Brunswick I have met its creator, Ms. Cynthia Howroyd and had the opportunity to review Ms. Howroyd's proposal in 2003 when it was in a more conceptual stage. The concept was presented to an autism steering committee established at the University of New Brunswick of which I am, and was at the time, a member. I had several concerns about the concept which I still hold.

1) Environment - as a parent of a profoundly autistic 11 year old boy I know that his environment is a critical factor in understanding his behavior and potential negative influences on his behavior. It is difficult to assess and analyze problem behavior from a distance without actually viewing, hearing, touching or smelling the environmental factors that might bother my son at a given point. Even being present in that environment it is not easy since he is much more sensitive to environmental stimuli than I am. The program of course relies upon the input of the parent or professional who is using the program and presumably has taken the environmental factors into account in analyzing the behavior. But with the transfer of that input to a program written by experts on a generic basis the possibility for an improper analysis and recommendation would seem to me to be greater.

2. Accountability - if interventions are not done properly at any stage will Virtual Experts or the experts who provide the input for the program be held accountable at least to their professional bodies and if so in what jurisdiction? It is not clear that users will have any real recourse for problems that might arise from use of the program - other than a return of funds which may be small consolation if a child has regressed as a result of improper intervention. While Autism Pro adverises a no-risk trial that no-risk claim clearly refers to fees paid not to risk of harm or delay in a child that might result from use of Autism Pro:

No Risk TrialVirtual Expert Clinics Inc. will refund the full value paid for AutismPro if you are not satisfied with the program within 30 days of receipt. If you wish to cancel your subscription after 30 days, a refund payment will be prorated at the monthly price paid in advance, based on the number of months remaining on your subscription. We do not require a reason for cancellation or any advance notice.

3. Non-evidence Based Interventions

In the Autism Pro press releases Ms. Howroyd states that Autism Pro uses evidence based interventions. "Because AutismPro is online intelligent software and because it integrates the full range of evidence based interventions in autism it is also a powerful tool for researchers to collect data on intervention choices and related outcomes for different children."

The problem I have with that statement is that, to my knowledge, only one intervention, Applied Behavior Analysis, is considered to have met the standard of evidence based intervention for autism. See for example the MADSEC Autism Task Force Report and the Association for Science in Autism Treatment. Most of the experts and expertise associated with Autism Pro are not ABA oriented.

4. Potentially Ineffective Use of Scarce Resources

I became aware of the conceptual precursor to Autism Pro shortly after the New Brunswick Provincial government announced on April 1, 2003, that it would provide funding for some autism services. Ms. Howroyd sought out various autism organizations in New Brunswick shortly thereafter to present her idea for an internet based answer to the demand for autism intervention assistance. More recently, a motion has been passed in the House of Commons calling for a National Autism Strategy and Virtual Experts has lost no time in positioning itself as a potential recipient of funding resources in connection with the motion as one of their press releases shows:

"A private members motion put forth by New Brunswick Liberal MP Andy Scott calling for the federal government to develop a national autism strategy was passed on December 5. On December 7, the United States senate unanimously passed a bill authorizes nearly a billion dollars in spending for autism research and programs."

I think it is unfortunate that Dr. Holden has chosen to publicly endorse and enthusiastically support Autism Pro in such a high profile environment as the Canadian Senate Committee studying autism funding given that she is still conducting a research study using Autism Pro.

"Dr Holden is currently undertaking a research trial consisting of 46 families across Ontario, including 63 adult care providers and 52 children aged 2 to 9, using AutismPro. The study is being done in partnership with Autism Ontario and Autism Spectrum Disorder - Canadian American Research Consortium (ASD - CARC) out of Queen's University. Participants have been provided with a one year subscription to the program."

It is difficult to see how Dr. Holden, despite her expertise, will be able to remain detached and objective in her conduct of the study given that she has already publicly endorsed the program which she is using in the study. Technology is glamorous and we live in an era when information technology increasingly dominates our lives and decision making. This blog site itself would have been unimaginable a few short years ago. Maybe Autism Pro will provide real solutions to autistic children. I am sure that there will be tremendous pressure exerted on government to provide more funding to Autism Pro than it has already received from organizations such as the New Brunswick Innovation Foundation. Since resources are not unlimited choices will be made about which options receive funding, to what extent, and which do not. Hopefully the decisions will be made carefully and not on the basis of trendiness, glamour or high pressured PR campaign. Autism Pro press realeases constantly tout parental support for the program. As a parent my experience makes me much more cautious. My experience tells me that autism intervention is a very personal face to face matter.

For now, anyway, this parent is not convinced - I am still not Pro Autism Pro.

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