Autistic Involvement in Research

I'm reposting the following announcement from AASPIRE, a research initiative that seeks to involve autistic people as equals and to take into account the views of the autistic community when making decisions about projects. AASPIRE is conducting a new study about healthcare inequities. More details below.


Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults. The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

*encourage the inclusion of autistic adults in matters which directly affect them;

*include autistic adults as equal partners in research about autism;

*answer research questions that are considered relevant by the autistic community;

*use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can:

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.


OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

IACC Season Again

Otherwise known as the season when good patriotic folks go hunting for ignorant anti-autistic prejudice in the US government, armed (figuratively, of course) with everything from bows and arrows to Thelma's shotgun. For those who have been wondering, I am not an author of that blog, but it does crack me up.

The dates for IACC comments are not actually the same each year, or even in the same season. I still haven't figured out if the committee members are just hopelessly disorganized or if it's some nefarious plot to confuse the auties. Anyway, I've reposted the commenting notice below. As usual, I hope my readers will make it crystal-clear to the IACC that there will be Nothing About Us Without Us.

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the National Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act. The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members. The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders. The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?
II. How can I understand what is happening?
III. What caused this to happen and can this be prevented?
IV. Which treatments and interventions will help?
V. Where can I turn for services?
VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record. You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

Empathy and Autism/Asperger Research

As part of the ongoing effort to debunk the damaging myth that autistics lack empathy, I'm posting a citation to a research study that addressed the issue: Rogers K, Dziobek I, Hassenstab J, Wolf OT, Convit A. Who cares? Revisiting empathy in Asperger syndrome. J Autism Dev Disord. 2007 Apr; 37(4):709-15.

This is not a new study, as can be seen from the date of the citation, but I don't recall having read any articles on the neurodiversity blogs discussing it. (If anyone wrote a blog entry that I overlooked, feel free to post a link to it in my comments.) The abstract describes the study's findings as follows:


Abstract A deficit in empathy has consistently been cited as a central characteristic of Asperger syndrome (AS), but previous research on adults has predominantly focused on cognitive empathy, effectively ignoring the role of affective empathy. We administered the Interpersonal Reactivity Index (IRI), a multi-dimensional measure of empathy, and the Strange Stories test to 21 adults with AS and 21 matched controls. Our data show that while the AS group scored lower on the measures of cognitive empathy and theory of mind, they were no different from controls on one affective empathy scale of the IRI (empathic concern), and scored higher than controls on the other (personal distress). Therefore, we propose that the issue of empathy in AS should be revisited.


The authors explain that "cognitive empathy" refers to the process of understanding another person's perspective, while "affective empathy" is an observer's emotional response to the affective state of others.

In other words, the autistic participants in the study displayed less understanding of others' perspectives than the control group; they showed about the same amount of sympathy and compassion toward others; and they experienced higher levels of personal distress when observing others in distressing situations.

As I have mentioned in previous posts on this blog, tests measuring cognitive empathy and theory of mind are both culturally and linguistically dependent. That is to say, in order to understand others' perspectives accurately, it is first necessary to share common cultural points of reference and to have a sufficiently similar understanding of the words used. The more that a minority community diverges from the majority in its culture and its use of language, the lower its members will score on such tests.

I rather suspect that if anyone were to conduct a research study measuring the ability to understand perspectives that are commonly found in the autistic community, the autistic participants in the study would show more understanding than the non-autistic participants.

Researchers Identify Autism Biomarker

A study presented at a meeting of the Radiological Society of North America indicates that it may be possible to accurately identify autistic children at a very early age by measuring brain wave patterns to determine if a child has a significant lag in auditory processing. As reported in an Associated Press article:


The brain wave study used noninvasive technology called magnetoencephalography, MEG for short. It measures magnetic fields generated by electrical currents in brain nerve cells, and records brain activity in real time.

Researchers at Children's Hospital of Philadelphia had 64 autistic children ages 6 to 15 listen through headphones to a series of rapid beeps while under the helmet-like device, which recorded the brain's response to the sounds. Those brain waves, shown as highlighted areas on an imaging screen, were compared with responses in a group of non-autistic children.

In autistic children, response to each sound was delayed by one-fiftieth of a second.

"We tend to speak at four syllables per second," said Timothy Roberts, the study's lead author and the hospital's vice chairman of research. If an autistic brain "is slow in processing a change in a syllable ... it could easily get to the point of being overloaded."


Although the study did not include younger children, the researchers believe that it may be possible to use the same method of brain wave measurement for diagnostic purposes in very young children.

The reporter suggested that the benefit of using this biomarker for diagnosis would be that "it could mean behavior treatment much sooner." But as I see it, a diagnostic biomarker would be valuable for precisely the opposite reason—because it would take autism out of the subjective realm of behavioral observations and define the condition, for the first time, in terms of hard science. Autistic children would receive more of the services that they need from speech and language professionals, instead of spending large amounts of time in intensive behavioral programs that lack solid research to support their practices.

Although reasonable people can differ on the issue of whether some autistic children may be helped by behavioral therapies, it is a fact that behavioral practitioners are not trained or licensed to provide speech therapy or related services. If autism is to be defined in terms of auditory processing differences, then I believe the logical conclusion is that services for autistic children should be provided primarily by, or under the direction of, speech and language professionals.

Reminder: IACC Comments Due

Today is the last day to submit comments to the Services Subcommittee of the Inter-Agency Autism Coordinating Committee on issues relating to services for the autistic population. The official notice can be found at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html, and comments should be sent to iaccservices@mail.nih.gov.

The fact that the committee is requesting comments on services is a direct consequence of all the pressure it has gotten from neurodiversity activists. When it was first established in 2006, the IACC was basically Curebie Central, focused entirely on cure and prevention research. It is now showing much more willingness to pay attention to the needs and concerns of autistic people. We need to take advantage of this opportunity and get as many comments submitted as we reasonably can.

The Autistic Self Advocacy Network has prepared a list of talking points to help with putting together last-minute comments on service-related issues. Responses should be limited to one page and should contain NOT-MH-08-016 in the subject line.

Changing Priorities

In the United States, the Interagency Autism Coordinating Committee (IACC) sets the priorities for spending on autism-related issues by the federal government. It holds meetings periodically, which members of the public can attend; and about once a year, it requests written comments from the public on its plans and activities.

The IACC was originally conceived not as a disability services agency, but as a means of enabling more efficient medical research on a condition that was widely seen as a genetic disease, with the goal of identifying autism genes for purposes of "prevention." Its first major contact with neurodiversity advocates came in late 2006, when Kevin Leitch collected signatures for a petition asking for respectful language in describing autistic people. Large numbers of pro-neurodiversity comments were submitted the next year, asking that the funds be directed toward research and services that would help the autistic population, rather than toward eugenic purposes.

This year, a significant change in tone can be seen in the IACC's notices requesting public comments. Most noticeably, there is now a subcommittee that is separately requesting public comments on services, in contrast to previous years when services were not even mentioned. Although there are still a few places in this year's Draft Strategic Plan where the word "prevention" appears, the committee is now being very careful to explain that it is referring to prevention of difficulties or challenges by means of early childhood services and therapies. It also expressly includes autistics as "stakeholders" from whom it seeks comments.

Those who submitted comments to the IACC over the past two years explaining the neurodiversity point of view, and who took the time to attend the public meetings and speak out about their opinions, deserve the credit for this change. Let's keep up the good work and send even more comments this year!


On behalf of the IACC, the National Institute of Mental Health has issued two Requests for Information (RFI):

Response Due 9/30/08: IACC Draft Strategic Plan for ASD Research is Available for Comment. The purpose of this time-sensitive RFI is to seek comments on the draft Strategic Plan from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. Please see the official RFI notice NOT-MH-08-021 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html for more information and instructions for responding by the deadline of September 30, 2008. Responses should be directed to iacc@mail.nih.gov. Please note: The draft Strategic Plan does not include cost estimates for implementation. However, the IACC has formed a workgroup to advise the IACC about the budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008.

Response Due 9/19/08 : Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. Please see the official RFI notice NOT-MH-08-016 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html for more information and instructions for responding by the deadline of September 19, 2008. Responses should be directed to iaccservices@mail.nih.gov

For more information about the IACC, please see http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml

Researchers Discover Happy Autism Parents

Earlier this week, the mainstream media reported on a study that showed higher rates of various neurological conditions, including schizophrenia, in parents of autistic children. The study focused on families in Sweden whose children were born between 1977 and 2003, and the sample included 1,227 autistic children and 30,693 non-autistic children. (Daniels et al., "Parental Psychiatric Disorders Associated with Autism Spectrum Disorders in the Offspring," Pediatrics, May 2008.)

The popular reporting on this study gave the misleading impression that large numbers of parents of autistic children had been diagnosed with some sort of psychiatric disorder. In fact, very few of the parents had any diagnosis at all. Schizophrenia, although it had a statistically significant association, was found in only 0.6% of the mothers and 0.7% of the fathers of autistic children, as compared to 0.2% of the parents in the control group.

There's a confounding historical factor to consider here: Prior to the modern use of DSM and ICD classifications for autism spectrum conditions, many autistic children were misdiagnosed as schizophrenic. In his book Unstrange Minds, Roy Richard Grinker describes the history of autism and child psychiatry, including the confusion between autism and schizophrenia (page 105):


During the 1960s and 1970s the only mention of autism in the American Psychiatric Association guidelines was the adjective "autistic" in the criteria for "Schizophrenia, Childhood Type." In other words, if you were going to use the official categories, a diagnosis of autism was, de facto, a diagnosis of schizophrenia.


Autistic children in Europe also were frequently misdiagnosed as schizophrenic. Because many of the parents in Daniels' study were growing up during this time period, it seems quite probable that some of those who received a schizophrenia diagnosis could in fact have been autistic. In other words, the study merely confirms the obvious: if you are autistic, your children have a higher likelihood of being autistic too. No surprise there.

What may surprise some folks, however, is that the study found very little depression among parents of autistic children. No association was found between depression and being a father of an autistic child. Although mothers of autistic children were more likely to be diagnosed with depression than mothers in the control group, the percentages were still very small (1.8% mothers of autistic children; 0.8% mothers of non-autistic children).

To put it another way: Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression. These parents weren't wishing that their child would drown or fantasizing about driving off a bridge with their child. They were going through their everyday lives just like the rest of the world.

Some mainstream publications have been presenting a more reasonable view of the lives of families with autistic children. The Autism Hub's very own Kristina Chew is featured in an article in the May 2008 issue of Working Mother, which interviews mothers of special-needs children and shows a respectful attitude toward people with developmental disabilities. The article quotes a disability consultant, who himself has cerebral palsy, on the importance of parents taking pride in their children's positive attributes and making time to enjoy their lives. Kudos to both Kristina and Working Mother; it's good to see a more realistic and accepting perspective starting to take hold in society.

Rock the IACC

Yo, I'll tell you what I want,
What I really really want...

— Spice Girls


Last year, when the Interagency Autism Coordinating Committee (IACC) solicited public comments on federally funded autism research, many of us signed a petition created by Kevin Leitch that asked for respectful language to be used in all discussion of autism. That was a good start toward making the American government aware of our concerns, and it led to some improvement of the language and to more representation of the neurodiversity point of view. But as we've seen in the past two weeks with the quick victory against the Ransom Notes advertising campaign, our community has grown much stronger—when we stand together, we have the power not only to accomplish small successes, but to bring about far-reaching change. This year, we should be sending thousands of e-mails to the IACC demanding not only a respectful tone, but actual, substantive reforms in autism research.

The current request for comments, reposted in the Neurodiversity Weblog, was issued by the National Institute of Mental Health (NIMH) and has a response deadline of January 4, 2008. Comments, which have a two-page limit, should be sent to iacc@mail.nih.gov with this identifying code in the subject line: NOT-MH-08-103.

As one might expect of anything from NIMH, the focus is on psychological and mental issues, and this limitation needs to be kept in mind when composing comments. We can't, for instance, get more funding for special education services through this process because that is outside NIMH's jurisdiction. However, we can tell NIMH to put more research money into the areas of cognitive and educational psychology, in order to determine what kinds of school environments and programs are most useful for autistic children.

Here are some examples of studies I'd like to see funded:

Self-image in autistic children: I have in mind something similar to the psychological studies cited at the U.S. Supreme Court in the 1954 case of Brown v. Board of Education to demonstrate the harmful effects of racial segregation. If autistic children are shown videos of autistic and non-autistic people, which will they prefer? If they are asked which of these people are good or bad—and why—what will they say? How will they react when they are asked which of these people are like them?

Stigma and autism-awareness advertising: Get a large random sample of non-autistic people who have no autistic family members. Survey them regarding their exposure to autism-awareness media campaigns, also ask some questions as to how they'd feel about having an autistic neighbor or co-worker or employee, and see what sort of correlations show up.

Role models: Find three schools that have similar autism programs and are comparable in other ways. In one of the schools, have a positive Autism Month event (along the lines of Black History Month) that focuses on the accomplishments of notable autistic scientists, musicians, etc., and that brings in successful autistics from the community to speak to the students. In the second school, put up Autism Awareness Month posters and teach basic information about diagnostic criteria and prevalence. The third school is the control group and gets no special events. How will the autistic kids view themselves afterward? Will there be any significant differences in how the autistic and non-autistic children interact in each of the schools? What about the mental health of the autistic kids—any differences in anxiety, depression, and other such issues among these three groups?

These are just a few ideas off the top of my head; I'm sure y'all can think of many more. What's important is to send as many e-mails as possible from the neurodiversity point of view. Keep in mind that the budget available for autism research is a fixed amount, so every study that is funded in response to our comments reduces the amount of money that might otherwise be spent on eugenics research or on unethical and potentially child-endangering studies of chelation and other quackery. Our kids are not lab rats, and we need to make it crystal clear that we won't stand for any more shoddy science, biased assumptions, and damaging rhetoric.

Let's get our comments written, everyone!