On the morning of May 24, 2010, I arose at approximately 6:30 am to wake my son for school.  I discovered that my son was not in his room.  I did not immediately worry because I know that he loves to go for walks.  A few hours later at approximately 10:30 I called the police station when he had not returned.  I was told that he was in custody and was currently being questioned but I was not told why. I immediately told them that my son was Autistic. Although I told them this, they still refused to offer me any information.   I told them the to ensure he got his phone call.  Once he called me, I could barely hear him because his speech was very low.  The only thing I could make out was that he was attacked by the police and he didn’t mean for any of this to happen.  I still had no idea what he was talking about.

Read the rest of the story at A Voice for Neli.

Lord, I ask You to protect this young man.  Keep him whole in mind, body and spirit through this ordeal.  I ask that You shed Your light and truth on this situation.  Reveal the truth for the world and the authorities to see.  Give no quarter to those who would hide in the darkness to sacrifice justice.  Let the truth out and let this family be whole once more.

So I pray, in the name of Jesus Christ, Amen.

* * *

I read these stories of how society reacts to autistics “loose” in the community, and I worry.

Things have to change.

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
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.)

Sincerely

Access Living
ADAPT
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
TASH
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

References:
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

[Cross-posted with permission]

While, generally speaking I am a conservative independent voter who enjoys seeing incumbents ousted from office—I’m the former Secretary on the Board of Directors for VOID, after all—I can’t offer the least bit of support for Ms. Emken.

Ms. Emken is using her business experience at IBM and her government relations experience through Autism Speaks to assert her qualifications for Congress.  Usually, I would consider both to be quality means of gaining experience to represent constituents on a national level.  But the political implications of Autism Speaks’ eugenic agenda are profound.  Supporting eugenics, even merely in theory, on a national level is a danger our country has already lived through.  Let’s not go back there!

If you live in California’s 11^th Congressional district, please elect your representative carefully and consider the full implications of a candidate who proudly associates with an organization that promotes eugenics.

Autism treatments: Risky alternative therapies have little basis in science

Alternative therapies amount to uncontrolled experimentation on children, investigation finds

The article starts with a little boy whose parents are currently involved in a bitter custody battle.  One parent, the mother, is subjecting the boy to a “complex treatment regimen” that involves the child taking many pills, being injected with vitamin B12, receiving intravenous infusions of a drug used to leach mercury and other metals from the body, as well as taking megadoses of vitamin C, a hormone and a drug that suppresses testosterone.  The father opposes these treatments.

Unfortunately, this little boy is not alone.

But after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, the Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on scientific research that is flawed, preliminary or misconstrued. (Tsouderos & Callahan)

And here’s where the kudos comes in.  Sure, as a parent of three children on the spectrum, I’ve heard about all of this.  I know these therapies are opportunistic bunk.  Yet, I still read articles in otherwise respectable periodicals promoting all this bunk.  And here is the Chicago Tribune devoting precious reporting time and significant space in their newspaper to debunking the bunk.  To say I’m impressed is, well, an understatement.  They just might get a subscription out of this!

Also noteworthy:  This article links to these FAQs which states, among other things, that while researchers at John Hopkins have noted neuroinflammation in their studies of autistic brains that this should not be used as a reason for treating people with autism with anti-inflammatory medications, which the researchers fear might happen.

Read this to find out more:

Autism treatment: Science hijacked to support alternative therapies

Researchers' fears about misuse of their work come true

So, I’m pleased with the reporting going on at The Chicago Tribune at the moment, which I find particularly pleasing because this newspaper seems to have close ties to the graduate school I intend to attend.

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.

Perhaps it’s just that I am politically conservative, but I rarely read the Huffington Post.  This particular periodical seems outrageously biased and logically lax to me.  Imagine how surprised I was when I found an opinion piece advocating neurodiversity published in the Huffington Post!  Perhaps my surprise has nothing to do with my political leanings and everything to do with the consistent ravings about the vaccine-autism link seen at HuffPo.  I just didn’t think these two positions could fit together in the same paper.

Over all, I’d have to say I support what Anthony Collins has to say in this piece:

• He applies neurodiversity to a broad sub-set of human characteristics.
• He acknowledges that neurodiversity is beneficial to people with severe disabilities.
• He highlights examples of prejudice that can’t hold up to scrutiny but are rarely scrutinized.
• He highlights the place that language has in shaping our culture and the way we interact.
• He highlights the power and importance of genuine acceptance and equality.
• He points out flaws with our medicinal-solution strategies.
• He addresses the inadequacies of governmental responses to inequalities.

So, why does the piece turn me off?  It could be this description of the author:  “While managing the newspaper at a Florida university, Anthony was a major proponent for Barack Obama’s election campaign, stem cell research, right-to-die laws, ethical euthanasia, medical marijuana and self-autonomy.”  (Self-autonomy is the only one of those causes I can agree with.)  But that’s probably not it, since I didn’t read that until later.

No, it’s not what he said, but how he said it that bothers me.  I try to stay away from the more caustic tones in my writing.  Even as a fellow supporter of neurodiversity I found Anthony Collins’ tone a bit grating.  Then again, I tend to write essays, otherwise known as literary nonfiction, not opinion pieces.  According to Susan Shapiro’s article in Writer’s Digest, an opinion piece is the supposed to be very opinionated—or, to put it another way, to get published one should “avoid being mild-mannered, tactful or diplomatic.”  So, this tone was definitely publishable.  But is that caustic, grating tone really beneficial?

If you’re goal is to get published, then I suppose so.  If your goal is to be persuasive, then I suspect not.  Most people are swayed by a mix of emotional and logical triggers—alienation is not one of these triggers and the caustic, grating tone often alienates readers, even while it entertains them.

You can get others who already agree with you riled up by grating on raw nerves, but anyone sitting on the fence is either going to stay on the fence—or worse, they’re going to turn away because the behavior is too untoward for them to want to associate themselves with or too offensive to generate empathy and support.

Perhaps a HuffPo reader wouldn’t find this piece so grating.  Perhaps they’re so used to this grating tone it slides right off of them.  They’re almost certainly amused and entertained by the tone, which is why they’re HuffPo readers.  But, that doesn’t mean they’re convinced or will even seriously consider the topic passed the last paragraph.  Effective communication requires so much more than just hot words shot off in quick, biting fashion.

But now I need to rant.  My son, Ben, may or may not have swine flu.  However his symptoms may parallel the e-mail that’s been circulating around, however his symptoms may incite worries of swine flu from a particularly qualified family member with medical training, the fact is his symptoms don’t make it swine flu.  The particular virus—which would have to be tested and identified by a microbiologist or similarly qualified individual with a sample of my son’s blood—makes it swine flu.  Not every sore throat is strep, not every nasty little flu bug going around in swine flu.

For most of my adult life, I’ve heard the news media scream and rave about the coming epidemic.  I remember when HIV was going to leave us with death camps that left infected people cordoned off in their own area away from “clean” people.  This wasn’t a science fiction doomsday scenario or posted on a conspiracy theorists’ blog.  I read this theory in a newspaper.

In grade school, in junior high, and in high school I remember journalism being described as an unbiased medium for informing our democratic nation.  Hooey!  Whoever said that either had an agenda or never read the guidelines for some of our top newspapers.  Unbiased?  Hardly!  They call it slant, but a slant is a bias – and slants/biases are required for publication.  News anchors face a similar fate.

So, once it was HIV – the great and terrible epidemic.  A few years ago it was avian flu.  I know there were some others between, but they left such an indelible impression that I cannot, for the life of me, recall their names.  Last year the new “devastating epidemic” was swine flu and it’s still raging, coursing through the papers more rapidly than its coursing through our nation.

What all these incidents have in common is two-fold:  First, the dangers of the virus are real.  Secondly, the news media overstates and exaggerates these real dangers for effect.

The effect they’re looking for is called “market share” which leads to revenues.  The more people watch or read the news, particularly their newspaper or television station, the more they can demand in ad revenues.  News media is a business.  Because news media is a business, the news that is reported is biased by the need for the news to “sell.”  Sensational news sells.  Mundane news doesn’t.  Stories sell.  Dry facts don’t.  Death tolls sell.  Recovery rates don’t.  Panic sells.  Common sense doesn’t.  This creates a very real and very bad bias in news reporting.

Perhaps my family faces swine flu.  Perhaps not.  The facts are that Ben is sick.  He’s been sick for days.  He’s fever goes up and it goes down.  He’s not drinking enough and is barely eating.  He’s coughing.  He needs prayers and he needs TLC.  He may need medical intervention.  Willy is sick again, too.  His seems like a different flu strain, which isn’t much of a consolation.  Alex is coughing, but not feverish.  I’m fighting it all off with a little bit of wooziness and lots of interrupted sleep.  Mark’s robust immune system seems to be staving it all off with little apparent effort.

We need your prayers.  We need real information on when and if to seek advanced medical help (good thing we have that qualified family member).  What we don’t need is panic.  We don’t need an ineffectual “national emergency.”  We certainly don’t need the news media’s biased reporting.  Swine flu is real and it’s dangerous.  It’s so much harder to protect ourselves when the news media is too busy selling its hype to report the facts.

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11^th.

We invite you, your friends and family to log-on to www.chicagomarathon.com/footprint and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9^th!

“The two-year project will measure the effect of telemedicine support on parents’ ability to provide PRT to improve functional verbal communication in their children with ASD.”  It compares parent treatment with and without telemedicine support after the same initial training program.  If telemedicine support proves effective it may provide a cost-effective means of helping families provide effective learning environments for their autistic children that facilitate the development of readily recognized social communication skills.  In many areas, cost and shortage of services result in long waiting lists and limited service options, therefore if this procedure proves effective it will increase access to timely treatment options.

As a side note:  “PRT is an evidence-based model that uses both a developmental approach and the science of applied behavior analysis (ABA) procedures to target areas that underlie the core symptoms of autism, including impairments in social interaction, communications, and repetitive/ restrictive behaviors.”  The value of the “evidence-based model” may seem questionable after reading Michelle’s post.  However, OAR states:  “Among the myriad interventions that claim some degree of effectiveness with individuals with autism, interventions based upon the principles of applied behavior analysis (ABA) have the most comprehensive and sophisticated research base by far.”  That, admittedly, offers little reassurance in the face Michelle’s report.