What does it mean to lose an autism diagnosis?

Some children—-like Preston Brown, according to an ABC News story today—-lose their diagnosis of autism. According to the article:

……a dropped diagnosis is not the same as a cure, and it doesn’t happen in most children because the origins of their autism are different

Not having an autism diagnosis does not mean one doesn’t have autism……

Sarah Palin Interview: Comments on Special Needs

From the October 23rd The Swamp, the Chicago Tribune’s Washington Bureau, is the transcript of an interview with Sarah Palin, the Republican nominee for vice president. Here’s some of what she said about families of children with special needs (Palin is to give a speech today in Pittsburgh—her first on policy—about special needs children):

“the federal government can play a very appropriate role in making this country a more welcoming country to those children with special needs to really make manifest our commitment to these children to provide them with equal opportunity with education, equal opportunity as they grow up to good employment and a chance to contribute and be quite productive and fulfill, and I think we can do a better job than where we’ve been.”

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“Out of $3 trillion I’m sure there are efficiencies we can find all over the place and allow that reprioritization that I believe needs to take place. And it needs to take place again so we can make manifest that commitment that we have to provide opportunities to special needs children and special needs adults also. That is what I want to usher into Washington, DC, that spirit of inclusion in our society and recognizing that these children are not a problem, they’re a priority. Ushering in that good heart of America. One way to do that is by prioritizing budget.

“But it’s not all about the money, it’s not all about budgets, it’s about that spirit of acceptance and embracing that diversity that is in the world with children who are special, they’re a little bit different from the norm, and that diversity is good and for us it’s exciting and it’s a joyful challenge.”

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“…when he was 2 and a half, [Palin's nephew] Karcher was diagnosed with autism. It’s been near and dear to our heart, trying to do all that we could. As governor, I was able to secure additional assistance of funding for our students with special needs in Alaska. It was a good boost that we gave there. But Todd and I have always had this mission within us to reach out and to try to help our families who had special needs. And then when Trig came along, it was Ok, now, even more of that connection that we have to these families. These families are coming to these rallies and it’s such a great appreciation that they’re showing to someone who is promising that they will have this friend and advocate in the White House who will help them.”

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“When Karcher was first diagnosed, Heather knew that for Heather and Kurt, her son Karcher was going to be her life.

“She’s kind of put her career aside – she still works full time – she’ss kind of put career aside so she can nurture and teach and help Karcher. But she has asked to, I remember she asked with tears in her eyes, she says, what happens when Kurt and I, though, are elderly, then what happens to Karcher? Because he is autistic, his story, this is the story of millions of Americans right now, because of the prevalence of autism. I relate it to my own personal life, but I see it all around America. With more and more children being born with autism, this generation so affected, what does happen now when their parents can no longer take care of them. Collectively, as humanitarians, that is where we do unite.

“And government can play an appropriate role in that assistance. So that’s what I want to work on, also. Especially with autism. We need to strengthen the National Institute of Health. There needs to be funding there. If reprioritizing it is the answer, we’ll do that, reprioritizing funds to make sure we’re researching everything about autism and trying to find out what it’s cause is and what we can do to help these children and then again, its humanitarian, how we can help these families.”

Many kindly sentiments expressed here, though not much mention of specifics about legislation (like IDEA). It seems that Palin is seeking more funding for special needs—-research? education? services? this is not clarified—-by calling for already-existing funds to be reallocated and reprioritized. Regarding how much the NIH has devoted to research about autism spectrum disorders, see here.

According to the October 23rd Chicago Tribune, Palin’s Friday speech will

……..lay out the campaign’s plans to fully fund the Individuals with Disabilities Education Act, boost funding for special-needs children from birth to age 3 and allow parents to choose whether federal money for their child is used in a public, private, religious or secular school without navigating a cumbersome administrative process.

The federal government originally committed in 1975 to paying 40 percent of the cost of educating children with special needs, with the states paying the rest. But that has never happened; full funding would require approximately $26 billion a year, and the federal government currently shells out $10.9 billion.

The McCain campaign plans to phase in that money with an extra $3 billion a year over five years. McCain has called for a domestic discretionary spending freeze, but programs for disabled people would be exempt.

Stay tuned………

“They are here, autism is here”—-Virginia Bovill

Heralding an October 22nd lecture entitled “Are we ambitious enough about autism?” to be delivered by Autism Speaks co-found Bob Wright at the Treehouse charity in the UK Telegraph asks “Should we want to cure autism?”

After raising my son Charlie for these past 11 years, my answer is that (in the words of a friend) curing autism is “neither possible nor desirable.” Autism is lifelong; it’s neither something that you catch or that you can be cured from, and focusing too much on trying to cure autism can distract from the pressing realities of teaching, supporting, taking care of, and being with people who are autistic. As I wrote in a March 2007 post, Acceptance vs. Cure:

Is autism a difference, a manifestation of human diversity and variation—-or is it autism a disease that one “suffers” from? Is autism something that has always been with us, or is something completely new?

The Telegraph article quotes Treehouse founder Virginia Bovill, who is

….currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?’”

“‘They are here, autism is here’”: I just had to reiterate that.

Kristina Chew Reacts To John McCain’s Talk About Autism

Kristina Chew is something like our local celebrity here at b5media’s Health & Wellness Channel. Just last June she appeared on Good Morning America to talk about autism, research for “cures,” and acceptance, and now, she’s landed herself right smack in the middle of a Newsweek interview – discussing John McCain’s stance on autism, no less.

I am so envious proud of her (OK, yes, I’m envious too!) – Kristina is a true advocate who gets her voice heard!

Read the interview at: Spotlight on Autism: The mother of an autistic son reacts to John McCain’s recent pledge to help families like hers. Was it just rhetoric?, and be sure to let Kristina know what you think!

Image: PicApp

Last Week’s Top Posts

We began the week with Monday in Manhattan and ended it with dinner and a walk across the Hudson River. Inbetween:

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• Simon Baron-Cohen on “Disorder,” “Cure,” and Autism
  Says Baron-Cohen: “The word ‘disorder’ is too negative. I use the word “condition” – autism can be disabling, but not all of its features involve disability. Some of them are strengths.”
• Autistic Defendants Often Misunderstood In Criminal Justice System
  A 20-year-old man stabs his mother in Florida.
• And when we were wrong, we promptly admitted it
  In recognition of National Alcohol and Drug Addiction Recovery Month, b5media bloggers on the Health and Wellness Channel are blogging about the 12 step program of Alcoholics Anonymous.
• Deconstructing the Vaccine-Autism Scare
  Dr. Rahul Parikh reviews Autism’s False Prophets by Dr. Paul Offit.
• The Vaccine Doctor and the Autism Mom Heroine
  In this script, Jenny and her following of David(a)s are poised, too-good non-toxicness products in their hands, to take on the evil Goliath of the Medical Establishment, Big Pharma, the dreaded CDC.
• Confessions of a Former Warrior Mom
  In which I announce that I’ve retired from this Warrior mom business.
• Acceptance and Surrender, says Jenny
  Yes, these words were said by Mother Warrior Jenny McCarthy on Oprah.
• A “Master Switch” for Synapses, Npas4
  Neuroscientists at Children’s Hospital Boston have identified what is being called a “master switch” that organizes the functioning of inhibitory synapses.
• A Method to Predict the “Severity” of Autism?
  A study published in the Archives of General Psychiatry has found that determining whether a toddler focuses on another person’s mouth or eyes can predict the level of disability in the child.
• The Adolescence Factor
  About “the adolescence factor,” which seems to have become the new reigning phrase in our household to explain tense, tough moments.
• David Kirby (and the supposed vaccine-autism link) deconstructed, yet again
  Dr. Rahul K. Parikh deconstructs David Kirby’s Powerpoint to congressional staffers.

Obama and McCain on Autism

Both Senators Barack Obama and John McCain have statements on their websites about autism. Obama’s is in a section on healthcare and is entitled Support Americans with Autism; he also has a plan on Autism Spectrum Disorders in his section on disabilities. McCain’s statement is also in a section on health care, with a statement about Combating Autism in America on a separate webpage.

Back in November, Senator Hillary Clinton’s website was the comprehensive about autism issues. Obama’s current two-paragraph statement on autism is the same as it was in November, as was his plan to empower Americans with disabilities. McCain’s website did not yet contain a section on autism. McCain made his entrance into autism politics with a February reference to thimerosal and the rise in the incidence of autism. In April, Obama was quoted at a Pennsylvania rally as saying that evidence linking vaccines and autism was “inconclusive” and that further research is needed.

And now it’s the end of August. Obama’s given his acceptance speech and McCain has chosen the Governor of Alaska and the mother of a young son with Down Syndrome, Sarah Palin, as his running mate. Here’s a closer look at what each candidate’s position on autism is.

On McCain’s website is a statement entitled, again, Combating Autism in America; the statement highlights the Senator’s concerns about finding out why the incidence of autism has risen in recent years. (Emphases in italics are mind.)

Combating Autism in America

John McCain is very concerned about the rising incidence of autism among America’s children and has continually supported research into its causes and treatment. He has heard countless stories about families’ hardships obtaining a diagnosis for their children’s autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.

Early screening, better options for treatment, and doing what can be done to enable autistic children to “reach their full potential; important and essential. McCain’s autism webpage does not specifically refer to services or education (and special education, IDEA, and autism are not mentioned on his page on education issues).

Again, Obama’s plan on Autism Spectrum Disorders is in his section on disabilities. Here’s the plan in full (again with some points highlighted in italics by me):

BARACK OBAMA: SUPPORTING AMERICANS WITH AUTISM SPECTRUM DISORDERS

More than one million Americans have Autism Spectrum Disorders (ASD), a complex condition that impacts communication, socialization, and behavior. And more cases of ASD are being recognized across the country at an alarming pace. Barack Obama believes that we must do more to help support Americans with ASD, their families, and their communities. Throughout his career, Barack Obama has worked with families affected by ASD to raise awareness and to provide support to parents and families living with ASD. As president, Obama will build on these many years of advocacy and ensure that his administration prioritizes ASD research, public awareness, and lifelong support services. Obama will seek to increase federal ASD funding for research, treatment, screenings, public awareness, and support services to $1 billion annually by the end of his first term in office. Obama will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD.

Record of Leadership on ASD Research and Care: As an Illinois state senator, Barack Obama sponsored legislation that became law to create an ASD diagnosis education program, an initiative designed to promote the implementation of evidence-based practices. The goal of the project is to offer educational opportunities at all levels of care, including physicians, early intervention (EI) specialists, psychologists, teachers, day care providers, parents, respite workers, and speech and language therapists. Obama has personally worked side-by-side with Illinois families affected by ASD to support efforts to build the Therapeutic School and Center for Autism Research. This school and research center will bring together education, academic research, early intervention programs, and training to prepare its students for independent living.

In the U.S. Senate, Obama is a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families affected by ASD. Obama will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, Obama will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.

Fully Fund the Combating Autism Act and Federal Autism Research Initiatives: Barack Obama supported the Combating Autism Act of 2006, which was signed into law in December 2006. The Combating Autism Act authorizes increased federal funding for ASD research and efforts to boost public awareness and early diagnosis of ASD. Since the bill has been enacted, however, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act. As a U.S. Senator, Obama has worked to fully fund the Combating Autism Act and as president, he will ensure that his administration addresses the growing impact of ASD and other special needs on American families. President Obama will fully fund the Combating Autism Act, which provides nearly $1 billion in autism-related funding over 5 years, and work with Congress, parents and ASD experts to determine how to further improve federal and state programs.

Support Special Needs Education for Children with ASD: Barack Obama understands that children with special needs – students with visual, hearing, physical, sensory, and mental impairments – require meaningful resources to succeed both inside and outside the classroom. Obama is a strong supporter of the Individuals with Disabilities Education Act (IDEA) and supports full federal funding of the law to truly ensure that no child is left behind. The current underfunding of IDEA causes school districts throughout the country to deny necessary services to students with ASD and other special needs. Obama will also work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the
support they need.

Support Universal Screening: While roughly 90 percent of infants in the United States are currently screened for various potentially disabling or life-threatening conditions, fewer than half the states screen all infants for the full recommended panel of 29 disorders. Many of these conditions, if caught early, can be treated before they result in permanent impairments or even death. Barack Obama believes we should screen all infants, and also that we must set a national goal to provide re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Part of Obama’s early childhood intervention plan will be directed at coordinating fragmented community programs to help provide all children access to screening for disabilities as infants and again as two-year olds. Achieving universal screening is essential so that disabilities can be identified early enough for those children and families to get the special supports and resources they need.

Work Together: As part of his commitment to open the doors of our government to the American people, Barack Obama is committed to facilitating open dialogue among Americans with special needs and their families, federal and state agencies, regional centers, resource centers, research institutions, school districts, first responders, and community members.

Special education and universal screening for autism in young children are specifically mentioned in Obama’s plan, as well as support for lifelong services. There’s an understanding of autism as an “autism spectrum,” and that individuals at different ends of the autism spectrumm and their families, all alike require—in varying ways—-supports and services.

Dark and Light and Something Of Both

A glass half-full or half-empty?

A big awful mess of a mess on the carpet as yet another episode in the comedy of one’s life, or further evidence of the tragedy of life with autism?

Mirth or melancholy? (To put it a little more poetically.)

Mamma Mia! or Dark Knight—-the one (as characterized in the July 27th New York Times) a “sing-along cinematic travel brochure that set a box-office record last weekend for the opening of a musical” full of many a “peppy Abba song” in which heroine gets guy in the end, and the other a “bomb-a-minute postmodern comic-book spectacle from the Batman franchise” that can be described as “dysphoric” and rife with many a “malign word that [issuing] from that smeary rictus on the face of Batman’s nemesis.”

The title of the New York Times op-ed is Pick Your Poison, Dark or Light; the op-ed is about two hit summer movies which project decidedly different world views.

And often it seems that depictions of life raising an autistic child, of being autistic, and of autism itself fall into one “camp” or other. It’s terrible awful, a nightmare without end, and you wish to cure the living daylights out of a child. Or: There’s a world of things one would never have known had one not had such a lovely, different child, and learned to accept this different, unexpected life.

It’s not easy living with autism, not easy being disabled. Parents can’t help but to worry about their children, but when your child is disabled and will very likely not be able to be “independent” in so many ways, the fear can set in and things can look, can be, really really dark.

Just last night Jim was speaking to an old friend, who said something to the effect of, so was there a chance that Charlie might snap out of it. “It,” being autism. “Charlie’s Charlie,” Jim responded: This friend and his wife saw Charlie in the, yes, dark days when Charlie’ just been diagnosed. They had come to visit us at the beach and Charlie had just woken up from a nap and ran up and down the deck screaming, looking through the slats of the railing. That was an agonizing vacation in which family and friends showed up with a kind of dutifulness and sighed and spoke nervously, and after which one dear friend (who’d tried everything he could think of to get Charlie to play and engage with him) went home and to see his mother and wept.

We went down again to that beach on Sunday. While it was sunny and warm on Saturday, and Charlie looked ready to swim up and down the shore for quite a long time if he had to, on Sunday the sky was gray and black; rain came down in buckets and hail; puddles were mini-lagoons. We had gone down to see friends and Charlie insisted on staying in their driveway, eyes on the ocean a short walk away. At first we stood in the car port and talked and then, when it was only sprinkling a little, a small party ventured out, Charlie leading the way.

It was windy and wet and the sand felt like gritty clay. Charlie took off his blue sweatshirt and shirt and hovered beside the water, and everyone started smiling. Our friends had been sitting in their rented house for most of the day, sad that the storms kept them from enjoying the beach and unsure of venturing out in the rain. And while the beach under a dark sky is not a spot to bask and loll, it’s still something to see and be in, and we were all happier and energized as we walked back, and they thanked us for getting them out.

Both dark and light; not just dark and not just light; but some deeply, richly hued mix.

Independence – Dependence?

The Health and Wellness Channel is writing about independence for our theme day and, as I read through the wonderful synopsis by Kendra I found myself thinking “Couldn’t all these folks apply this one same principle to each one of their challenges?”

And, from personal experience, I’d love to tell them that this one will work and work well! It assuredly does for us alkies

Let Go and Let God

“Made a decision to turn our will and our lives over to the care of God as we understand Him.”

From A.A.’s 12&12;

Read more

What’s Going to Happen After I’m Gone?

Writer Ann Bauer’s adult son is autistic and, in an article in today’s Washington Post, she writes about the question that are always just under the surface of my conscious thoughts:

What happens to Charlie after Jim and I are not here?

Bauer, the author of the novel A World Ride Up the Cupboards, has described a terrifying episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, she’s gotten the message that Autistics Need Not Apply. But the struggles are also because of the world we live in, a world that talks about “raising awareness” but has yet to provide sufficient (or even adequate) and appropriate services not only for autistic children of school age, but for autistic adults. Writes Bauer:

My son is flailing in a system that doesn’t know how to deal with him. I admit I’m of little help. He doesn’t look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he’s been placed in a series of group homes for people with mental retardation or psychosis. None has been right.

His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells — they’re all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.

Bauer describes a family down the street—60-ish father, adult son with Down Syndrome—who, as she says, she envies, because they’ve “figured out a cohesive, workable system of support.” She writes:

…..while I wouldn’t trade [my son] — the person to whom I gave birth — for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we’re flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance.

Last year, New York Times ran an article about prenatal testing—about 90 percent of women who learn that they will have a Down syndrome child have chosen abortion—and the “dwindling” population of those with Down Syndrome. Parents of children with Down Syndrome are advocating to get a positive message out there about their children and life with them. As Bauer writes in today’s Washington Post, it’s more than possible to create a good life for an adult child with disabilities and it’s more than worth it. In the autism community, even as debate “splinters” (as Bauer writes) over “philosophical issues—-”cure and acceptance“—it’s the concrete issues of where our kids will live, how will they spend their days, who will care for them, that cause the sleepless nights and are, to some extent, behind wishes for “recovering” a child, as if that would ensure that a child would be able to take care of him or herself.

It’s not been easy for Charlie for me to be gone for two nights (though I’ll be back in New Jersey in less than 24 hours). I went because I feel he’s ready to handle it. Jim’s taking Charlie to the beach this afternoon and I’m grateful as ever for technology—the basic cell phone—-so we can talk about any “situations” that ensue. Charlie now has the right supports around him, a teacher who knew why he was crying and gave him words to describe it, a speech therapist who rearranged her schedule so she could come on Friday.

It’s taken us years to get the right school placement for Charlie. One of the most heartening things about his school is that more of the aides and teachers I’ve met have talked about wanting (yes, wanting) to work with older autistic kids, with teenagers and adults. With the right supports, understanding, and the belief that they can do it, our disabled children who will (all too soon; sigh; onward) be disabled adults can go very very far. Very.

MANA editorial regarding “AMA Seeks to Deny Women Choices in Childbirth”

In mid-June, I posted on how Ricki Lake was being taken to task by the American Medical Association (AMA) about her stance on home birth (Tsk, tsk Ricki Lake).

Meredith, our resident doula (Womb Within has its very own doula) sent me this “President’s editorial” fro the Midwives Alliance of North America (MANA). I am publishing it with permission. It’s a very interesting answer to the AMA’s close-minded point of view.

AMA Seeks to Deny Women Choices in Childbirth

*President’s Editorial *

July 11, 2008

Geradine Simkins
president@mana.org
888-923-MANA (6262)
info@mana.org
http://www.mana.org

One wonders what process the American Medical Association (AMA) House of Delegates used to determine that *”Resolution 205 on Home Deliveries”* was a prudent and reasonable proposal to adopt. AMA Resolution 205 attempts to outlaw a woman’s choice to birth at home or in a freestanding birth center by calling for legislation to establish hospitals and hospital-based birth centers as the safest place for labor, delivery and postpartum recovery. Further, Resolution 205 seeks to establish that hospital-based midwives who work under the control of physicians are the only safe midwifery practitioners.

The Midwives Alliance of North America, which has represented the profession of midwifery since 1982 and whose members are specialists in homebirth, finds AMA’s Resolution 205 to be arrogant, patronizing and self-serving. We have three major objections to Resolution 2005. First, Resolution 205 patently ignores the vast body of scientific evidence that has documented homebirth to be a safe, cost-effective and satisfying option for women who prefer this alternative to hospital birth. Second, AMA Resolution 205 is seriously out-of-step with the ethical concept of patient autonomy in health care (encompassing both informed consent and informed refusal), which has gained widespread acceptance in the medical community. And third, Resolution 205 distracts from other critical issues in maternity care to which healthcare professionals should be giving substantial attention, including increasing access to care, improving perinatal outcomes, reducing health disparities and fostering client satisfaction. AMA
Resolution 205 is anti-homebirth, anti-midwife, anti-choice and is unsupported by scientific evidence.

Why is the American Medical Association not asking the real questions instead of trying to debunk existing research evidence on the safety and efficacy of homebirth and attempting to corner the market on maternity care? For example, why are midwife-attended births far more likely to have fewer interventions, fewer postpartum infections, more successful breastfeeding rates, healthy infant weight gain and result in more satisfied, empowered mothers ready to embrace their newborns and parenting experiences? Why are so many women across the nation left emotionally traumatized by their childbirth experiences in hospitals and consequently why do rates of postpartum depression, anxiety and post-traumatic stress continue to escalate?

It is ironic that the AMA should have a quarrel with a known safe birth option such as homebirth at the same time when the epidemic rise in coerced or elective cesarean sections puts healthy mothers and infants at greater risk than normal vaginal birth and causes excess strain on the limited resources of our healthcare system. The rate of cesarean sections in the United States is unacceptable—one in three pregnancies end in major abdominal surgery—and the decline in availability of vaginal birth after cesarean (VBAC) is deplorable. It is unethical to expect that women and infants should continue to bear the brunt of increasing medical malpractice risks by over-treating them with obstetric technologies such as c-sections while denying them safe evidence-based options such as VBAC. It is past time that the AMA in collusion against homebirth with the American College of Obstetricians and Gynecologists (ACOG) realizes that women and their partners are choosing to labor and deliver at home and in freestanding birth centers to avoid ethically unsupported obstetric interventions.

Modern medical ethics have evolved to embrace autonomy—patient choices and patient rights—over medical recommendations based on paternalism or physician preference. In almost all areas of modern medicine, except obstetrics, the locus of control rests firmly with the client or patient and not with the medical provider. It is a commonly held principle that it is not appropriate to force medical treatment upon clients or patients against their will, including medications, blood transfusions, chemotherapy or even life-saving surgeries. Informed consent has appropriately become the gold standard in healthcare decision-making.

Why then do the AMA and ACOG believe that they can promote legislative efforts to deny women choices in maternity care providers and childbirth settings? In the 21st century this concept is outdated and absurd.

The AMA and its members might consider using their considerable energy, intelligence and resources to focus on promoting the health and well-being of mothers and babies and devote less time to limiting women’s access to midwifery services. All maternity care providers should band together to reduce the unacceptably high rates of maternal and infant mortality and morbidity in the United States, increase access to maternity care for all women, reduce unnecessary cesarean sections, encourage vaginal birth and VBACs for healthy women, reduce health disparities of women and infants in minority populations, and promote increased breastfeeding. These challenging but attainable goals would improve the health of mothers and babies far more impressively than reducing the rates of homebirth.

The Midwives Alliance joins the other individuals and organizations, including individual AMA and ACOG members, who have grave concerns about the AMA taking the stand articulated in Resolution 205, and calls for the AMA to abandon this resolution. Midwives everywhere honor and respect the numerous friendly physicians with whom we already partner and look to the day when midwives and obstetricians will consistently work collaboratively to support women’s choices in childbirth and provide the best possible and most appropriate range of services for every situation.

If you would like to leave a comment, please do! You can’t comment on this page, but you can on the original one that directed you hear, so just click on this link.

References

1. K.C. Johnson, B.A. Daviss, Outcomes of Planned Home Births with
Certified Professional Midwives: Large Prospective Study in North
America, British Medical Journal 2005; 330: 1416 (18 June).

2. Royal College of Obstetricians and Gynaecologists and Royal
College of Midwives Joint Statement No. 2, April 2007. See
http://www.rcog.org.uk/index.asp?PageID=2023

3. Wiegers TA, Keirse MJ, Van der Zee J, Berghs GA. Outcome of
planned home birth and planned hospital births in low risk
pregnancies: prospective study in midwifery practices in the
Netherlands. BMJ 1996; 313:1309–13.

4. Olsen O. Meta-analysis of the safety of the home birth. Birth
1997; 24:4–13.

5. Ogden J, Shaw A, Zander L. Deciding on a home birth: help and
hindrances. Br J Midwifery 1997;5:212–15.

6. Canadian Institute for Health Research Giving Birth in Canada:
Regional Trends From 2001-2002 to 2005-2006.

http://secure.cihi.ca/cihiweb/en/downloads/Childbirth_AiB_FINAL_E.pdf

7. CMAJ Maternal mortality and severe morbidity associated with low-risk
planned Cesarean delivery versus planned vaginal delivery at term

http://www.cmaj.ca/cgi/reprint/176/4/455.pdf

8. Listening to Mothers II Report (2006.) Childbirth Connections,

http://www.childbirthconnection.org/article

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