Tuesday, April 26, 2011

Blog Closed

The ASAN Southwest Ohio chapter is currently inactive. As a result, there will be no further entries to this blog. If/when we have a local group in this area again, it will most likely use Meetup, which many ASAN chapters are now using.

Saturday, November 20, 2010

True Confessions

By Meg Evans.

I've been foiled at every turn by clever bloggers who have unearthed the deepest darkest secrets of my nefarious plots. My scheme for world domination is no more! Amidst the shattered wreckage of my best-laid plans, there's nothing to be done but to admit the scandalous truth:

I am Bonnie Offit.

More seriously, I have to confess that I've been neglecting both this blog and the ASAN Southwest Ohio chapter. I don't have any good excuses for it; I just got busy with other things and didn't put enough time into keeping them going. Look for more chapter activities to get underway in the new year. In the meanwhile, I'm turning on comment moderation to keep the blog free of spammers and trolls.

Happy holidays to all!

Tuesday, July 27, 2010

IACC Public Comment Reminder

The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC's reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC's proceedings.

From: NIMH IACCPublicInquiries (NIH/NIMH)
Date: Mon, Jul 26, 2010 at 3:20 PM
Subject: The IACC RFI Closes This Week!

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until this Friday, July 30, 2010.

Wednesday, June 23, 2010

NCD Appointment of Ari Ne'eman Confirmed

The Autistic Self Advocacy Network would like to thank President Obama and the U.S. Senate for the nomination and confirmation of ASAN President Ari Ne'eman to serve as a member of the National Council on Disability (NCD). He will be the first Autistic person to serve as a member of NCD. An independent federal agency, NCD makes recommendations to the President and Congress on issues of importance to Americans with disabilities. To learn more about NCD, go to http://www.ncd.gov

An article about the confirmation can be found on Disability Scoop:


Thursday, June 10, 2010

Disability Representation in Health Care Reform

In light of the significant barriers faced by people with disabilities with regard to health care access, ASAN has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website and is reposted below.

June 9, 2010


Kathleen Sebelius
Health and Human Services

Mary Wakefield
Health Resources and Services Administration

Pam Hyde, JD
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)


Access Living
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Wednesday, June 2, 2010

Book Review: Aspergirls by Rudy Simone

The subtitle of this book is "Empowering Females with Asperger Syndrome," and it is written in a pleasant, conversational style that mixes interview quotes with the author's observations and advice on a wide variety of issues. Rudy Simone expresses a desire to help women on the spectrum feel validated, overcome depression, and become better understood. Most of the chapters, after discussing a specific issue relevant to autistic females, end with advice for "Aspergirls" and for their parents on that issue.

After stating that a love for information is an autistic trait, Simone observes that school often can be difficult because of bullying and loneliness, and that it is important to take action when this happens. She advises dealing with stress and sensory overload as related issues, which can be improved by taking good care of oneself through exercise, a healthy diet, avoiding situations that are likely to be stressful or overloading, and self-calming activities such as rocking and spinning that help to relieve stress.

Females on the spectrum tend to internalize a lot of guilt as a result of misunderstandings, Simone writes, and to feel uncomfortable with gender roles. Puberty brings many challenges, from its physical aspects to the issues of dating and socializing, and can be an age when selective mutism is triggered by increased social anxiety.

University students may tend to push themselves too hard and try to accomplish too much at once. Simone stresses the importance of setting aside enough time to rest and decompress, as well as seeking out disability services and counseling to the extent needed. Getting a degree can make it possible to have a satisfying career in one's field of interest, rather than a stressful and low-paying job. She urges young women to get whatever help they need to make it through college and not to give up.

She identifies self-awareness as crucial in making decisions about marriage and children. Rather than drifting into a conventional family life because of social expectations, the first step should be for a woman to consider carefully what she wants and needs. Finding a compatible partner and knowing what to expect as a mother should not be taken for granted.

Rituals, blunt speech, and differences in expressing emotion often result in misunderstandings. It is not unusual for women on the spectrum to be misdiagnosed and given inappropriate medications. Simone makes clear that she is not opposed to the use of medications by those who find them helpful, but she urges careful evaluation of how well they are working and of whether the benefits outweigh the risks.

Depression involves feeling powerless, she writes, and often can be helped by getting into a better environment and learning more effective coping skills. A more pleasant environment also can help with issues of controlling one's temper. She discusses aging and health concerns, recommending natural foods and supplements while also pointing out that autistics can be very sensitive to dietary changes and that excessive amounts of supplements can cause problems.

The book has a noticeable New Age flavor, mentioning such topics as karma, blocked chi, and psychic powers. Those who enjoy such digressions will probably find it entertaining. Simone has a tendency to overgeneralize at times by discussing particular traits as if they applied uniformly to all women on the spectrum; but this style of writing helps her to build an empathetic rapport with readers who share those traits, and she is being more careful to avoid stereotyping than she has been in the past. Overall, this is an ambitious effort, touching on many different aspects of life as a woman on the autism spectrum, and providing advice that is likely to be helpful for many readers.

Monday, May 3, 2010

Research Study on Healthcare Inequities

Guest post by Elesia Ashkenazy, ASAN Board Member and Portland, Oregon Chapter Coordinator.

Finally, something about Autistics done with Autistics that might actually help us out!

• Participate in research, not just about Autistics, but with Autistics!
• Have your voice included in research!
• The Gateway Project is recruiting adults over the age of 18 to participate in online studies.
• AASPIRE is conducting a new Gateway study about healthcare inequities.
• Participants may win a $25 Amazon.com gift certificate
• To learn more, visit http://www.aaspire.org/projects/healthcare1.html
• Please share this invitation to participate in research widely!

AASPIRE is currently working on a project called the Gateway Project. Our project serves as a gateway to research that is committed to inclusion, respect, accessibility, and relevance to the community of autistic adults. The Gateway Project includes a series of online studies on topics such as healthcare access and quality, online sense of community and identity, and problem solving. The project is open to individuals with and without disabilities, as well as to individuals on the autistic spectrum.

I have appended our flier for your convenience.


Elesia Ashkenazy

ASAN, Board member & Chapter Coordinator

AASPIRE, Community Partner & Community Council Chair

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 AASPIRE 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