IACC Comments, November 10, 2009

November 10, 2009

Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.

My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.

I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:

Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.

Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”

“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.

Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.

Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.

Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.

The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.

I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.

I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:

“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”

In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”

I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.

NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.

Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.

Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

IACC Comments, October 23, 2009

October 23, 2009

http://www.youtube.com/watch?v=IMg0SwYOthw

Thank you for permitting me to address this meeting of the Interagency Autism Coordinating Committee. I am representing the Autistic Self Advocacy Network.

I appreciate having had the opportunity to represent ASAN at the recent Scientific Workshop. The meeting offered many opportunities to make changes as the Strategic Plan is updated for 2010.

Inclusion of an objective to study ethical issues related to “the assessment and communication of genetic, environmental, and clinical risk for autism” was one of the recommendations from Panel 1, the panel I participated in. This objective does not go far enough in that it only addresses assessment and communication of risk. It does not address other ethical issues which we believe to be important. Therefore we strongly urge an objective that would address ethical, legal, and social issues related to all aspects of research, not just the communication of risk, although that is a critical area, given recent developments in identifying prenatal risk factors.

Another area for concern about ethics is early intervention, as interventions are initiated at earlier and earlier ages . Ideas about what early interventions will work are generally based on assumptions of non-autistic people about what “the reasons for autistic behaviors” might be, with little to no input from autistic adults, who can inform and guide research.

A concerted effort is being made to increase acquisition of biological materials, such as skin fibroblasts, brains, and other tissue types. There is an ethical concern with collecting biologic samples from young children, who are not capable of giving permission. Potentially, children might not want to contribute biological material, if one of the purposes was for developing a prenatal test aimed at selecting people like themselves out of the gene pool. Although there are many reasons for collection of biological materials, this concern must be addressed. People on the autism spectrum who can communicate,* (see below) and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.

In general, recommendations of many of the panelists to include adults in many sections of the Strategic Plan are a step in the right direction.

Although the IACC does not fund research, presumably it has some influence on research priorities, or it would not bother to come up with budget recommendations. Here are some figures from the 2009 Strategic Plan.

Recommended budget for diagnosis and assessment: $133,600,000
For biology and risk factor research, $179,000,000. For causes and prevention, $216,400,000 [almost 28% of the IACC recommended budget]. Treatment and intervention gets $190,100,000.

For “Where Can I Turn For Services?” Where, indeed? Not to the IACC recommended budget, which suggests a grand total of $25,330,000 [3.27%]. If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to questions about needed services and supports. Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports.

Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues. The National Health Service has released a study of autistic adults, indicating that prevalence of autism in adults in the UK is one in a hundred, similar to the recent figure here of 1 in 91 children. Interestingly, the NHS report avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition, initiatives such as the “Don’t Write Me Off” employment campaign and “Supporting people with autism through adulthood” can make a real difference in the lives of autistics, especially and young people who are transitioning out of school settings. Sadly, the United States is falling behind on crucial issues related to services and lifespan issues and is failing autistic adults, families and communities.

Currently the Strategic Plan does not address communication differences and disabilities at all. This is a surprising omission, since one of the criteria for an autism diagnosis is communication disability. Although panel 4, on treatments and interventions, mentioned communication as an emerging tool, specific mention of communication research should be incorporated into the 2010 Strategic Plan.

*[Note: The comment "people on the spectrum who can communicate is NOT intended to mean that there are autistic people who cannot communicate. Everyone communicates. It's an error I wish I had caught before I delivered the comments, but I am posting the comments as I delivered them.]

*[I explained more carefully what I intended to say, in my November 10, 2009 IACC testimony:

Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.]

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network