New Organization on Severe Autism

Autism is not one of the disabilities that my two adult sons have had to deal with. My awareness of autism goes back to the late 1970’s and the struggle to get schools to fulfill their obligation to make available a “Free and Appropriate Public Education” (FAPE) to every disabled child. Autism was not an official category defined by federal regulations at the time, but most children with autism fit under one or another of the categories listed and because of their disabilities needed special education. 

I knew families whose children had been diagnosed with autism and other related disabilities that would fit the definition of autism as it is now understood. The difference is that forty years ago, I never heard anyone talk about “high-functioning” autism or any of its milder forms. The manifestation of the disability was almost always severe and was often combined with intellectual disability, severe language impairment, and behaviors that interfered with education in regular classrooms and sometimes caused self-injuries or injury to other family members.

As a non-expert, I do not pretend to know enough to explain the explosion in autism diagnosis, but cases of severe autism have not abated. The needs of this population are growing, especially with the aging of family caregivers and the tendency for some advocacy groups to turn their backs on people with the most severe disabilities in favor of presenting an optimistic and more palatable image to the public and policy makers. If I had to rely on presenting a “positive” image of my children now and in the future to justify spending on services for them, I would be sabotaging the prospect of them receiving services that are both appropriate to their needs and effective in preventing harm.

A new organization called the National Council on Severe Autism (NCSA) has been launched “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.” 

This from a press release on 1/10/19:

“…The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.

“‘Autism is often romanticized and sugar-coated in the media and social media,’ said Jill Escher, NCSA President. ‘In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.’….”

The organization has gotten off to a good start with a Website that presents their reason for being, policy statements, and an active blog .

From the NCSA blog:

If you wish to Share your story, the NCSA wants to hear from you:

Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:

• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being

Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time...

Amy Lutz, a parent of an adult with severe autism, writes about the organization on the Inspectrum blog from Psychology Today: "National Council on Severe Autism (NCSA) Launches; New organization will advocate 'for those who cannot speak for themselves.'", 1/14/19.

************************ 

For more information: 

Website: ncsautism.org
Email: info@ncsautism.org
Facebook: https://www.facebook.com/ncsautism/
Twitter: @ncsautismorg

Mail:

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Michigan 2019: Tackling water contamination

An article from Mlive.com, "State employees required to report health, safety threats in Gov. Whitmer’s first executive directive" by Emily Lawler, 1/2/19, reports on the new Governor's first executive directive of her administration that begins to tackle the problem of water contamination in Michigan.

Governor Gretchen Whitmer signed her first executive order on 1/2/19 establishing a chain of command for state employees to report threats to public health and safety. 

"'The people of Michigan deserve to know that their government is working for them, and our government employees deserve to know that they can speak up when they see threats to Michigan’s health and safety,' Whitmer said before signing her first executive order."

The order was in part a response to the Flint water crisis where a state-appointed emergency manager failed to act to protect the city against lead contamination of its water supply. 

Another worrisome source of water contamination in Michigan was covered by Garrett Ellison on Mlive.com, "Major warning about Michigan PFAS crisis came 6 years ago" on 7/12/18. PFAS (Per- and polyfluoroalkyl substances) have been found in Michigan waterways and drinking water supplies. Robert Delaney, a veteran geologist at the Department of Environmental Quality “..took his concerns about per- and polyfluoroalkyl substances, or PFAS, to state environmental leaders more than six years ago in a prophetic report that called for decisive action on a looming health crisis…His alarm bell was largely ignored.” 

“‘Communities with fire training facilities, other Department of Defense (DOD) bases, metal platers, other major airports, major transportation corridors, and other industrialized areas all could have extensive contamination by (PFAS),’ Delaney wrote.”

“…nearly six years after Delaney's warning about the dangers and potential ubiquity of PFAS, his predictions are coming true. Numerous sites around Michigan have known PFAS plumes and the list keeps growing as testing and attention escalates. So far, the number is 31 and counting across 15 communities, where neighbors are questioning whether contaminated water is to blame for chronic diseases.” 

A few months ago we began seeing signs along our beloved Huron River warning us not to eat the fish. And that white foam that we see on the banks from time to time may be related to PFAs.

Among the sources of contamination are fire retardents, food packaging materials, numerous household products, and drinking water.

“Following an October 2010 presentation on PFAS to the EPA, Department of Defense and an interstate regulatory group, Delaney wrote that his talk was 'well received, if you consider stunned silence a good reception.'" 

There is more information on PFAS from the US Environmental Protection Agency (EPA) Website :

“…Studies indicate that PFOA and PFOS can cause reproductive and developmental, liver and kidney, and immunological effects in laboratory animals. Both chemicals have caused tumors in animals. The most consistent findings are increased cholesterol levels among exposed populations, with more limited findings related to:

• low infant birth weights, 
• effects on the immune system, 
• cancer (for PFOA), and 
• thyroid hormone disruption (for PFOS). "

Finding and reporting on sites of contamination are the first step in protecting citizens against the effects of PFAS. This is especially important in light of the apparent attempt to suppress Delaney's 2012 report and restricting Delaney's access to news media:

"Although Delaney has been a regularly accessible expert on PFAS contamination in Michigan, his freedom to speak with news media was curtailed at DEQ last fall [2017] after he talked about the report on the radio. The agency would not make him available for this story despite multiple requests over several months.

Requiring state officials to warn the public about risks to health and safety should have gone without saying, but the Governor’s first executive directive removes any ambiguity on this issue.