More on RFK, Jr. and the "Holocaust" Reference

At CNN, David M. Perry writes about RFK Jr.'s recent apology for likening autism to the Holocaust:

Robert Kennedy Jr. has apologized for the wrong things.

First and foremost, vaccines do not cause autism. The two have nothing to do with each other.

Second, he seems to think people with autism are "gone," their lives "destroyed" and their families "shattered." Autism is not a death sentence. People with autism are not missing or destroyed. They are everywhere, trying to live their lives in a society that too often demeans them as subhuman, missing or worthless.

Kennedy's rhetoric is a problem, even beyond the fraudulent basis for his claims about vaccines. People who believe autism is an environmental disease try to cure kids with quack treatments like giving them bleach-based enemas. Others, believing autism functions as a death sentence, even kill their children.

I am worried about the effect of having such a powerful, high-profile member of our political class endorse this demeaning depiction of life with autism.

I reached out to a number of autistic activists for comment. Ari Ne'eman, president of the Autistic Self-Advocacy Network, wrote, "Robert Kennedy Jr, who has engaged with autism only to spread lies, misinformation and dehumanizing rhetoric, has never meaningfully engaged in efforts to improve the lives of autistic Americans. While his father, uncle and many others in the Kennedy-Shriver family championed the rights of people with disabilities, he has instead cast his lot with those who use pseudo-science to question our humanity."

These are harsh words, but try to see the situation through Ne'eman's eyes. Not only is Kennedy perpetuating a discredited theory, but he's also suggesting that it's better to let your children get preventable and sometimes fatal diseases than risk becoming autistic

CARA Controversy

Elise Viebeck reports at The Hill:

House lawmakers took a step toward moving a landmark autism-fighting law following a government investigation found that most federal autism research has the potential to be duplicative.

The Energy and Commerce Subcommittee on Health approved an amendment Wednesday that would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services.

The official would help coordinate anti-autism activities across federal agencies and ensure the projects "are not unnecessarily duplicative," according to the amendment.

The language comes after the Government Accountability Office found last year that 84 percent of autism research projects under current law have the potential to cover each other's ground.

Lawmakers from both parties praised the amendment and predicted it would improve existing programs.

Last week, she reported on  opposition from the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.

"[The rise in autism] is nothing short of astronomical, and I would say, cataclysmic," said Craig Snyder, a longtime autism lobbyist and chief spokesman for the APRC.

...
Snyder’s group is taking a hard line, arguing it would be better for lawmakers to let the autism act expire on Sept. 30 rather than continuing it in its current form.

"We believe it is better for the country to face the end of these programs and to have a serious dialogue about what went wrong than to put another seal of approval on bad policy," Snyder said.

Legislation from Menendez and Enzi is expected to include several of the reform coalition’s top priorities, Snyder said.

First, Snyder’s group wants to centralize federal autism research within a new office at the NIH modeled on the Office of AIDS Research.

The office would have its own budget and direct scientific work about autism in line with a strategic plan, shifting away from the current model of organic studies funded out of general NIH accounts.

Snyder argued that federal research on autism is overly concerned with genetics at the expense of exploring possible environmental risk factors and ways of treating patients.

Other agencies would also see big changes under the APRC plan.

The CDC, for example, would be required to revamp its autism prevalence survey and conduct it every year instead of every two years.

The Health Resources and Services Administration would be tasked with creating clinical guidelines to ensure that the appropriate clinician treats someone with severe autism during a medical emergency.

And finally, the APRC would create a new body to coordinate autism policy across federal agencies, similar to the White House Office of National Drug Control Policy.

ASAN opposes the bill:

1) H.R. 4631 continues to use language offensive to Autistic people and our allies. We don’t want to be “combated” – we want to be supported and respected. Despite numerous complaints by the Autistic community, the legislation continues to use disrespectful and offensive language. This has to change.
2) H.R. 4631 adds four congressionally appointed members to the Inter-Agency Autism Coordinating Committee, politicizing the IACC instead of letting it focus on analyzing autism research and policy from an objective perspective.
3) H.R. 4631 fails to require additional self-advocate representation on the IACC. Shouldn’t a government advisory committee about autism require more than one autistic representative on the committee? Tell Congress that they shouldn’t be acting about us, without us.

Deaths in Santa Ana

The Daily Mail reports:

A suicidal mother has been charged with murder for killing both her children before a failed suicide attempt Saturday morning.

Marilyn Edge, 42, of Scottsdale, AZ., tried taking her own life in a car accident in Costa Mesa, CA before telling responding cops they would be able to find her 13-year-old autistic son Jaelen Edge and 10-year-old daughter Faith in a nearby hotel room. The young childrens' bodies were discovered just after 8:30am at a Hampton Inn in Santa Ana.

The cause of death for both children has not yet been made public, nor have their causes of death. Their identities have been revealed by MailOnline. Ms Edge previously sued the federal government alleging her son developed autism after a vaccination.

Many autism activists may object to the next line, about what may have "driven" the suspect.

It is not clear what brought the doomed trio to the California town, about 40 miles south of Los Angeles, but a review of court records by MailOnline is starting to piece together part of what may have driven Ms Edge to Saturday's tragic events.

The doting mother sued the Secretary of Health and Human Services in 2004, alleging a vaccination gave her son autism, court records showed. The case was dismissed only last year.

Citing a lack of medical records supporting Ms Edge's claim, and the lack of a valid medical opinion to further bolster it, Chief Special Master Patricia Campbell-Smith dismissed the suit for 'insufficient proof.'

Ms Edge was awarded a judgement in the amount of $7,692 to settle legal fees owed for the suit. It is not clear if or when she ever received that money.

From The Kalamazoo Gazette:

"I think there certainly is a divide, and there has been for some time," said Ari Ne'eman, president of the Autistic Self Advocacy Network in Washington, D.C. “The picture of autism that has been presented in the public eye is not consistent with how we see ourselves."

He said recent murder and attempted murder of autistic children “are the quintessential example of that.”

Autistic people deserve the same protection under law, he said, and “we are profoundly concerned when groups try to present murder as justified or understandable on the basis of the victim’s disability.”

Further Coverage of the Optimal Outcome Study

Time has a misleading headline -- "New Study Suggests Autism Can be ‘Outgrown’" -- but some useful content:

But while the research suggests that some children do extremely well, it’s also important not to give false hope or add to the guilt felt by some parents over their children’s prognosis, the researchers stress. “This is generally a lifelong disability,” says Fein. “I’ve seen thousands of children who had the best possible interventions continue to have significant intellectual disability and severe language deficits and we don’t know how to remediate those things.”

Autism advocates have other serious concerns about the research. “We don’t think the idea that people ‘outgrow’ autism—or can be made through treatment to become non-autistic— is accurate,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. Instead, he says study participants are likely “passing,” or acting non-autistic in order to fit in. Inside, they may be experiencing the same urges to engage in repetitive behavior and endlessly talk about their obsessions, but they have learned to channel their intense drives into repressing this and behaving the way normal people expect.

The Wall Street Journal, while also using the o-word, includes a note of caution:

Based on previous studies, Dr. Fein estimates 10% to 20% of children who were diagnosed with autism may achieve optimal outcomes.

Some experts caution that even people who no longer meet diagnostic criteria for autism may have subtle, residual idiosyncrasies.

Fred Volkmar, director of the Child Study Center at the Yale University School of Medicine, who wasn't involved in the recent study, described one former patient who has a master's degree, goes to work and lives on his own, but every night he eats the same meal, canned fish, reads on the computer about software and then goes to bed.

In many ways he could be considered as having an optimal outcome, said Dr. Volkmar. At the same time, the man wants to have a girlfriend but doesn't know how to talk about subjects outside of his one narrow interest, and he serves canned fish to anyone he has over.

Autism Public Service Announcements

Self-Advocates and Parents

Autistic self-advocates and parents of autistic kids do not always make eye contact (autism in-joke). Jean Winegardner writes at The Washington Times:

All too often, self-advocates*—individuals with autism themselves—feel that parents of children with autism don't want to hear what they have to say. "There is a saying amongst developmentally disabled activists," writes one such activist in a recent blog post. "It goes like this: 'Some parents just want disabled children to speak and disabled adults to shut up.'"

These are harsh words, but they are at the heart of a conflict that recently came to a head over this very issue: When it comes to the developmental disability rights movement, who should be leading the way?

The Thinking Person's Guide to Autism, a website devoted to providing information about autism from autistic individuals as well as parents and professionals, saw a conflict unfolding on the internet last month between a parent advocate and a self-advocate and stepped in to offer them a do-over of sorts. The result has been a series of blog posts which have run over the past two weeks, with voices from many corners of the autism community writing, commenting, arguing, and hopefully listening to each other.

This particular dust-up began when parent advocate and author Robert Rummel-Hudson, who blogs at Fighting Monsters with Rubber Swords, wrote a post about a movie that used the words "retarded" and "Downsy." After describing that language as offensive to parents of children with special needs, he came under fire for having left out disabled people themselves.

Blogger and autistic self-advocate Zoe Gross, who blogs at Illusion of Competence, responded with her own post making the point that when writing about offensive language such as this, it is important to talk about the fact that these words are hurtful not just to relatives of disabled people, but to disabled people themselves.

Watching this unfold and spiral into unpleasantness, the editors at Thinking Person's Guide to Autism (TPGA) wanted to open a forum for Robert and Zoe to talk with a fresh start. "We both wanted a do-over," says Zoe, "so we agreed to come on TPGA and have the conversation again, with more people and less shouting, and see if we couldn't make something positive out of it."

Left Brain/Right Brain weighs in:

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

...

That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself—parents of young children with great challenges—should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

...

We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.

Autism and Community Living

Michelle Diament reports at Disability Scoop:

As the public comment period draws to a close on a federal proposal detailing what qualifies as community-based housing for people with disabilities, the issue is sparking controversy.

The proposal from the Centers for Medicare and Medicaid Services was first announced in April and is open for comment through Tuesday.

Under the plan, residences that include “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community” would be excluded from Medicaid home and community-based services waivers.
What’s more, qualifying homes could not be designed exclusively for people with disabilities.
Federal officials say they recommended the rules update after hearing about situations where new housing dubbed “community-based” was being built on the site of existing institutions.

However, some parents and disability advocates are criticizing the changes saying that they would limit options for adults with disabilities who may desire to reside near those like themselves.

Desiree Kameka writes at the Autism Speaks blog:

All can agree that the atrocities of institutionalization must never be repeated, but the NY Times study in March 2011 exposed institutional-like abuses, not done in a large congregate care facilities, but hidden under our noses in urban and suburban group homes with less than 6 residents. One cannot even begin to imagine “community” in the midst of physical, spiritual, and financial abuse. With the advances in affordable security technology, education on self-determination, and person-centered philosophies, the fact that this kind of abuse still occurs is a slap in the face of humanity. If the CMS seriously desires to set standards and expectations of service providers, major initiatives of accountability, continuing education, and incentives of Direct Care Providers are needed!

Thus, the definition of “community” should not in any way be tied to physical size, number of residents, or geographic access to public amenities in unrealistic hopes to avoid institutional-like abuses. Community is synonymous with relationships, and relationships are found between the hearts of those who live, work, and play together. If the CMS desires to identify home and community-based settings, they must evaluate people, not places.

Gene Bensinger reflects on the proposed change here.

The Autistic Self-Advocacy Network says:

We appreciate this opportunity to provide comment on CMS’ proposed rulemaking providing for minimum standards for HCBS settings. The proposed rule would require that HCBS settings must be integrated in the community, must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care, must not be located on the grounds of, or adjacent to, a public institution, and must not be a housing complex designed expressly around an individual’s specific diagnosis or disability. We strongly support these protections. HCBS funds are limited and designed to serve specific purposes, not to be available to any and all settings which operate under the name “community”. By putting in place minimum standards to ensure that Home and Community Based Service are delivered in the community, CMS will be taking an important step towards protecting the civil rights of Americans with Disabilities and in securing the integrity of the Medicaid program. This rule will ensure that HCBS funds are not spent in settings which are congregate in nature or have the characteristics of an institution. We believe that it is imperative that CMS follow through on its proposed rulemaking.

Contrary to concerns raised that such a measure will limit choice, we believe that these minimum standards will enhance choice for people with disabilities and family members. HCBS funds represent one of several funding streams for long term services and supports. Institutional settings possess their own funding streams, and the corruption of HCBS funds for institution-like settings restrict the choices available to individuals and families by forcing a choice between two institutional settings. By putting in place minimum standards, we anticipate this rule will serve as the impetuous to a wave of innovation for supportive housing arrangements that give people both immediate, permanent housing in their own apartments or homes and access to voluntary, supportive HCBS services designed by the individual and provider to ensure success. By ending a state of affairs in which both institutional and HCBS funding streams fund settings which have the qualities of an institution, choice will only be enhanced for individuals with disabilities and family members.

Views of Autism Speaks

Zach at AspieWeb shows video of a protest against Autism Speaks:

I find it very disturbing to watch this video. Here are people who want to be treated equally, who want to be included in society – not research to find a way to selectively abort them and there told the following:

• 2:25 – Are you really that stupid?
• 3:25 – How do you sleep at night?

If your in the Washington DC area November 6th please consider joining the ASAN in protesting Autism Speaks. For more information and coordination ASAN has created a facebook event page – even if your not going to be there please join it and show your support. If your going to be there I have created several items just for occasions such as this – check them out.

At The Huffington Post, Holly Robinson Peete takes a more positive view of the organization:

Parents across the country have banded together and fought to change state insurance laws to end this injustice. In just four years, they have already won the fight in 23 states, and the battle continues (New York's Governor Paterson just vetoed an insurance bill that passed unanimously in the state legislature, making him just the second governor to take this misguided action). They're fighting against some powerful people, including the insurance companies and their lobbyists. They're also fighting against ignorance. You may have read about one notable Senate candidate who mocked the idea of autism coverage -- she used air quotes when she talked about autism. But these parents are smart, they're organized and they're truly inspirational. That's why they're winning.

Autism Speaks has a wonderful advocacy web site, AutismVotes.org (I serve on the organization's board) with information about the insurance reform effort. Check the map and see if your state has done the right thing yet. If not, you'll find out how you can get involved and help make important change happen for people with autism.

Angle Reactions

KVVU reports:

The national Autistic Self Advocacy Network on Friday called for Nevada GOP Senate candidate Sharron Angle to apologize for a statement she made regarding health care and autism treatment.

Video of Angle speaking at a 2009 Tea Party rally surfaced this week. In it the former state legislator slams Democratic health care policies.

“You’re paying for things that you don’t even need, they just passed the latest one is every, everything they want to throw at us now is covered under autism, so that's a mandate that you have to pay for,” she said, making air quotes around the word “autism.”

The Nevada Democratic Party posted a video of the speech on YouTube.

“We’re concerned by the Angle campaign’s claim that individuals and families 'falsely label other symptoms as autism' in order to takte advantage of insurance mandates,” the ASAN said in a statement. “Lack of insurance coverage for habilitative services, such as occupational therapy and speech pathology services, is a barrier to the civil rights of autistic Americans both young and old.”