Response to the Interagency Autism Coordinating Committee · Jan 15, 12:00 PM

15 January 2007

To the Members of the Committee,

I am mother to two young adults, one with an Asperger Syndrome diagnosis, and have other family members with autistic spectrum diagnoses and traits. I am also proprietor of the nonprofit website Neurodiversity.com, a collection of resources and writings on autism, disability rights and related matters. I am responding to the Interagency Autism Coordinating Committee’s request for public comments on the draft report, Evaluating Progress on the IACC Autism Research Matrix.

The IACC appears to have no autistic citizens in its membership. This oversight should be corrected. In expanding public membership on the IACC, it should be recognized that a variety of perspectives exists regarding appropriate priorities in autism research and service provision, and that the perspective of individuals who are themselves autistic is often significantly different from that of clinical researchers or non-autistic parents. It should not be assumed that autistic citizens are either unwilling or incapable of offering insight into their own needs. Autistic citizens who wish to participate in the deliberations of the IACC should be assisted to do so if necessary, and their special needs should be accommodated. A number of autistic citizens should be appointed to the committee in order to avoid tokenism, and so that a variety of perspectives can be represented.

The draft report refers to “biomarkers of disease and disease progression” and “disease etiology or expression” (p. 15), and recommends “consideration of autism as a multi-organ disease” (p. 14). Some autistic individuals experience impairment in language acquisition and speech production; some have seizure disorders, motor problems or other physical issues. All of these phenomena deserve attention, just as their occurrence in non-autistic individuals deserves attention, so that disabling handicaps can be mitigated. However, to my knowledge, no research exists to support the assertion that the development of autistic cognitive traits results from a progressive, degenerative disease process. This is an unwarranted and harmful assumption. The United Cerebral Palsy Association warns that cerebral palsy “is not a disease and should not be referred to as such.” The National Dissemination Center for Children with Disabilities similarly advises that “mental retardation is not a disease.” In the interest of scientific accuracy, and in recognition of the potential for social harm inherent in the identification of developmental disability and cognitive difference as “disease,” scientists and policymakers should exercise similar restraint in their descriptions of autism.

I concur with the Committee’s assessment that development of appropriate services deserves additional emphasis in the Autism Research Matrix (p. 35), and that increased attention should be paid to meeting the needs of autistic adolescents and adults (pp. 32-34). The draft report states, “There is mixed support for the feasibility and utility of efforts to determine autism prevalence before 1985. The ability to obtain these types of data is diminishing and some Panel members were skeptical that a methodology for conducting such a study could be developed that would allow valid comparison with contemporary prevalence estimates. An alternative method may be to follow-up with individuals identified in early prevalence studies” (page 15). I agree with the skeptics on the Panel. Absent a reliable and efficient means of time travel or resurrection of the dead, it would be impossible to recreate the pre-1985 social and clinical context. Follow-up with individuals identified in early prevalence studies would yield information only about individuals who met the more restrictive diagnostic criteria in effect at the time the studies were conducted. Additionally, undiagnosed autistic spectrum adults are not obliged to present themselves to researchers to be evaluated and counted. However, it should not be necessary to obtain scientifically-rigorous pre-1985 prevalence estimates to affirm the likelihood that the percentage of adults who meet diagnostic criteria for autism, Asperger Syndrome or PDD-NOS, or who might have met such criteria in childhood, is similar to contemporary prevalence estimates for children, or to affirm the need to increase understanding of autism in adults.

The draft report’s minimal emphasis on research that might enhance autistic adults’ quality of life stands in disturbing contrast to its numerous references to the need to acquire autistic citizens’ post-mortem brain tissue (pp. 2, 17, 19, 20). This gives the impression that autistic adults are more highly valued by the IACC when they are dead than when they are alive. One can hardly expect autistic-spectrum adults or their family members to be willing to donate their brains for scientific study after death if researchers pay little attention to their needs and opinions during the (hopefully) longest portion of their lives – adulthood – and if autistic citizens are marginalized in decision-making regarding the direction of autism research and public policy.

The draft report contains little discussion of the need to develop educational strategies and services to enhance parental well-being. Given the strong heritability of autistic spectrum conditions, it should be anticipated that a significant proportion of parents of autistic children are themselves “on the spectrum” or its periphery, and face or have faced cognitive and communication challenges similar to those of their children. That being said, “problems of parent mental health” (p. 29) do not reside solely within the person, but are often linked to economic status and inadequate medical, educational, community and family support.

The draft report also contains no discussion of the need to develop and facilitate access to assistive technology, which is essential for many individuals whose communication problems render reliance on speech impractical.

The draft report recommends that a twin resource registry could set as an initial target the inclusion of data derived from 100 twin pairs, with one or both individuals meeting diagnostic criteria for autism (p. 10). It is not clear whether the term “autism” is intended to include all pervasive developmental disorders, or is a specific reference to Autistic Disorder. Since much of the recent increase in the incidence of autism diagnosis is attributable to broadening of diagnostic criteria and the subsequent identification of individuals whose autistic traits would not have been recognized under previous, more restrictive criteria, it would seem appropriate that one or both twins included in the registry should meet diagnostic criteria for any pervasive developmental disorder. Study of twin pairs in which one child experiences language delay and the other does not, for example, could enable identification of factors influencing communication development in autistic children, and could give birth to appropriate techniques to facilitate communication skills.

The draft report includes numerous references to development of pharmaceutical treatments targeted to the needs of autistic individuals (28-31, 35). The past decade has seen an extraordinary proliferation of de facto pharmaceutical experimentation on autistic children by private practitioners who characterize the FDA-regulated drugs they administer as “medically necessary.” These drugs include chelating agents, antibiotics, antifungals, antivirals, steroids, GnRH agonists, anti-androgens, intravenous immune globulin, secretin, and antipsychotics; many of these substances have significant side effects, and many are administered for a much longer duration than recommended by the manufacturer. No matter how much pressure is brought to bear on policymakers and researchers to approve and conduct studies to test such treatments, their prevalence does not justify subjecting children to research risk if it is unlikely that the research subjects will obtain any immediate benefit. Although one might assume that an Institutional Review Board (IRB) would reject any protocol that exposes disabled children to unnecessary risk with little expectation of benefit, that an IRB would insist upon sufficient scientific rationale for that research, and that an IRB would insist upon the provision of accurate information about treatments, this is not always the case. For example, in a description of her current chelation study, IACC member Dr. Susan Swedo states that “DMSA is commonly used to treat autism,” calls for administration of DMSA to children who demonstrate detectable but non-toxic levels of mercury or lead in their blood, and cites Sallie Bernard et al’s paper, Autism: A Novel Form of Mercury Poisoning (Med Hypotheses. 2001 Apr;56(4):462-71) to justify the study. In fact, DMSA chelation is not a treatment in common use; it is administered to autistic children by a small (albeit assertive) subset of medical professionals and parents who subscribe to the unproven hypothesis that autism is a consequence of “heavy metal toxicity.” The only FDA-approved pediatric indication for the use of DMSA is acute lead toxicity; testing DMSA for the treatment of autism in children is sufficiently different from the labeled indications to require submission of an FDA Investigational New Drug application. The majority of co-authors of the Bernard paper are non-scientists who are directly or indirectly involved in litigation against vaccine manufacturers. Their thesis that symptoms of autism are comparable to those of mercury poisoning has been rebutted by scientists such as Karin B. Nelson and Margaret Bauman (see Thimerosal and Autism?, Pediatrics, Vol. 111 No. 3 March 2003, pp. 674-679). Although Dr. Swedo refers to “single-case reports of benefits with chelation with DMSA,” she provides no citations to those reports. The potential for long-term harm to research participants is suggested by a recent study which demonstrated that non-lead-exposed rats treated with DMSA showed declines in learning and behavior comparable to those suffered by lead-exposed rats (SA Beaudin et al, Succimer chelation normalizes reactivity to reward omission and errors in lead-exposed rats, Neurotoxicol Teratol. 2006 Nov 18). In spite of the potential for harm to participants, the chelation study’s consent form indicates that no money is available to compensate participants who suffer research-related injuries.

The draft report includes numerous references to the development of animal models for autism (pp. 12, 14-15, 18, 29, 35). Researchers should exercise caution when attempting to correlate animal behavior to human behavior and animal brains to human brains. Special care should also be taken to ensure that any research involving animals conforms to the highest ethical standards. The need for such precaution is exemplified by a Columbia University study reported in the paper, Neurotoxic effects of postnatal thimerosal are mouse strain dependent, by Dr. Mady Hornig, Dr. David Chian and IACC member Dr. W. Ian Lipkin (Molecular Psychiatry 2004 Sep;9(9):833-45). In this study, the investigators used the SJL/J strain of mice; the males from this strain are known to become violently aggressive when co-housed beyond eight weeks, and female breeders are known to bite their own wounds. The investigators administered thimerosal to these mice, sacrificed three of them at five weeks for brain dissection, and observed the rest for a period of over six months. Ultimately, many of the thimerosal-injected mice began to self-mutilate, and one eventually groomed through the skull of another. The investigators did not separate the mice, but filmed the incident, and filmed another mouse while it groomed itself self-destructively. This aspect of the study was not reported in the published paper, but the film was described by principal investigator Dr. Mady Hornig at a February 2004 meeting of the Institute of Medicine, and shown at another meeting held the following May. The film depicts:

“...an animal that is frantically self-grooming. Its partner here – we have tail biters. About 40 percent of the animals after 6 months become self-mutilatory. He bites his tail. He grooms excessively. But he also grooms his partner… this animal, who wildly self-grooms, not only takes care of his partner… but he also grooms. He has groomed through the skull, and eventually destroys his partner.”
(Testimony of Dr. Mady Hornig, Immunization Safety Review Committee meeting on Vaccines and Autism, February 9, 2004; see also Dan Olmsted, The Age of Autism: Mercury Ascending for a report on Dr. Hornig’s May 2004 presentation to CDC Director Dr. Julie Gerberding.)

Dr. Hornig suggested that this behavior could be attributed to thimerosal, and suggested that such behavior was similar to that of autistic children, but failed to disclose the predisposition of SJL/J mice to engage in aggression and self-mutilation, regardless of whether thimerosal is injected into them. Researchers should not be allowed to create ghastly photo opportunities for the manipulation of public opinion by provoking experimental animals to violence and suffering. It is my understanding that allegations of animal mistreatment regarding this study are under review by Columbia University’s Institutional Animal Care and Use Committee.

The Committee should also be aware of a recent controversy provoked by IACC member and Autism Speaks Executive Director Mrs. Alison Tepper Singer. In the widely-distributed film, Autism Every Day, Mrs. Singer describes an incident in which she was tempted to kill herself and her autistic daughter, openly stating that she refrained from doing so only out of concern for the welfare of her presumably non-autistic child. Although raising an autistic child often entails significant stress, and although one could not fault Mrs. Singer for discussing this incident in a counseling session or a private conversation, it is self-indulgent and insensitive to exploit it for fundraising purposes, and particularly unconscionable that Mrs. Singer confessed her murderous and suicidal impulses before the camera, with her autistic child visible and within earshot. To date, over 650 individuals worldwide have signed the Autism Speaks: Don’t Speak for Us petition protesting the devaluation and distortion of the lives of autistic individuals and their families promulgated by this film. To date, Mrs. Singer has failed to respond to this petition. Her apparent lack of concern for the negative impact of Autism Every Day upon autistic citizens and their families is particularly unseemly for a member of a federally-mandated committee responsible for determining priorities in autism research.

The Panel suggests that in time and with proper educational support, a subset of autistic children may no longer meet autism diagnostic criteria (p. 25). However, it is likely that even after resolution of problems that negatively affect their functioning, autistic children will retain autistic traits into maturity, regardless of their diagnostic status. These traits encompass both vulnerabilities and strengths. I am one of over 400 signatories to a community response to IACC’s request for public comment on the draft report to be delivered to the IACC under separate cover, calling for increased support for research designed to identify autistic cognitive strengths and to enable autistic citizens to achieve their fullest potential, free of the unrealistic, burdensome and invidious assumption that they must become non-autistic in order to do so.

I urge the members of the IACC to consider the words of Mr. Phil Schwarz, an adult diagnosed with Asperger Syndrome who is father of an autistic teenager and serves as Vice-President of the Asperger’s Association of New England:

“The handicaps and impairments associated with autism are not the sum total of autism. To parents and family of severely handicapped autistic people, it may seem so. But that is because the handicaps – whether they are lack of means of communication, lack of impulse control, lack of ability to perform self-care tasks, maladaptive behavior developed as the only available means to mitigate sources of distress or to attempt communication of needs and desires, or any combination of these things – are so consuming of attention and time and energy and often financial resources, that they totally mask anything else that could be present.

“But as the severely disabling factors are mitigated or accommodated, you begin to encounter subtler differences that are clearly associated with the individual’s autism that are not in and of themselves disabling, but only so because they are not accepted or granted value and validity by the surrounding non-autistic society. For example: preferences for sameness, predictability, sensory comfort and internal aesthetic integrity as much more important than style or poise or popularity, solitude or small groups rather than crowds, relationships based on shared interests rather than shared emotion... the list goes on. None of these things should be intrinsically disabling; the extent to which they are is very much a function of the larger society’s intolerance and devaluation of them… [I]t is those subtler, not-intrinsically-disabling aspects of autism that people in all regions of the spectrum share; they are the real core of autism, not the gross handicaps and impairments.

“You may claim that ‘autism is 100% a bad thing, as surely as the sky is blue!’ But the sky is not really blue. It is black and starry. It only appears blue when the sun is up and its intensity floods everything else out. The grossly disabling handicaps and impairments associated with autism are like that: they blind us to the subtler aspects. But when the sun goes down, the stars begin to shine through, and a whole universe begins to open up. And that is like what happens when the grossly disabling handicaps are properly mitigated or accommodated: we begin to see those subtler aspects of autism, and they begin to matter more.”
(Phil Schwarz, Response to the National Post, October 2006)

Many thanks to the members of the Interagency Autism Coordinating Committee for your efforts to address the needs of autistic citizens, and for your consideration of my concerns.

Sincerely,

Kathleen Seidel
Peterborough, New Hampshire
http://www.neurodiversity.com

Comments


  1. Very clear message. Hard to argue with anything you stated, Kathleen. I hope they give it proper consideration.

    Regarding prevalence of autism in adults, I do think this is something that can be done and should be done. There will always be references to the “hidden horde” until this is done. It can be done by coming up with a representative sampling of adults, screening instruments and interviews. They should do that in institutions as well. (Similar things have been done in the past, but they were not that specific).

    — Joseph    Jan 15, 03:02 PM    #

  2. Thanks, Joseph. I probably should have been more precise in my comments about adult studies. Whereas I don't think it would be all that fruitful to try to determine historical autism prevalence figures to an extreme degree of accuracy, efforts to determine accurate current prevalence estimates would be totally appropriate.

    — Kathleen Seidel    Jan 15, 05:19 PM    #

  3. This was very good Kathleen. I’m so glad you included what Phil wrote on the subject or I may have missed it otherwise.

    As always, THANK YOU for everything you do.

    — Not Mercury    Jan 15, 06:34 PM    #

  4. “Kathleen Seidel
    Peterborough, New Hampshire”

    A voice of reason in that part of New England!

    — David N. Andrews MEd (Distinction)    Jan 15, 07:04 PM    #

  5. (applauds)
    )*( )*( )*( )*(

    — Ms Clark    Jan 15, 08:50 PM    #

  6. Wonderfully thorough and convincing, as usual.

    It seems to me that attempts to develop “animal models” of autism are obviously doomed: autism is primarily a disorder of communicative faculties which themselves appear to be unique to humans. Thus it can’t appear in other animals; it’s a disorder defined by unusual (trying to avoid loaded words like “abnormal”, although I suppose if I’ve already used “disorder” that’s a bit of a lost cause) functioning of a system they simply don’t have. You might as well try to develop a reptile model for menstruation, or an arthropod model for spinal cord injuries.

    I suppose it’s possible that some of our closest relatives might have a similar system and condition, but unless autism has already been found in those species, attempts to create it will likely be futile (especially when the causes of autism in humans are not even known, which is why all the animal studies to date have been by the mercury quacks who think they do know how to induce it). I’m sure 100% of their experiment subjects demonstrated a total inability to speak, but how useful is that result really?

    — Chris    Jan 16, 11:18 AM    #

  7. Tremendous thanks to you Kathleen. Thanks much for everything you do and for who you are.

    — hj    Jan 17, 07:59 PM    #