Service dog comforts woman with Asperger's Syndrome

Danielle Jacobs, a 24-year-old woman from Tempe, AZ, posted this video on YouTube to show what it's like to have Asperger's Syndrome. It shows her service dog comforting her during a meltdown.

From BuzzFeed News :

Danielle said that she got Samson, a 4-year-old rottweiler, from HALO animal rescue in Phoenix after several evaluations and assessments.

She said: “I immediately began training him for service work for Asperger’s syndrome, PTSD, TBI, and anxiety disorder. He alerts to meltdowns, anger, depressive episodes, flashbacks and nightmares, stimming, provides balance and counterbalance, and alerts to panic attacks.”

"The Day 'Autism' Died" - a parent's frustration with the language of autism

The Autism Society San Francisco Bay Area blog has a post from a parent who felt the extreme frustration that many others felt when Jerry Seinfeld mentioned in an interview recently that he just might be on the autism spectrum.  Here are excerpts from the blog post:
 
The Day "Autism" Died
by Jill Escher, president of the Autism Society San Francisco Bay Area
11/10/2014
 
The word "autism" died last week, it ceased to retain any power to create a shared understanding, which is, after all, the very purpose of language.

I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism"….

….absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care…

…It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face...

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Read more from the Autism Society San Francisco Bay Area Website and Blog:

• Supported Housing for Adults with DD 
• California must allow full range of housing options for people with autism
• On the future of day programs for people with severe forms of autism

Overview of housing possiblities for people with autism

I received a comment on my recent blog post on the CMS proposed regulations for HCBS waivers. Not only is the comment insightful, but it includes a link to a report on housing possibilities for people with autism that anyone interested in this issue should look at.

Here is the comment:

It appears to me that the proposed change is a hatchet rather than scalpel approach as it relates to HCBS Settings. The risk is that a very narrow interpretation of what "community" and "appropriate to their needs" mean will prevent development of specialized group homes or small, campus like developments in non-urban areas. The elimination of these choices will particularly fall hard on adults on the autism spectrum disorders who, any of the too few existing providers will tell you, very often require lower staffing ratios, higher degrees of support, and very specialized, highly structured programs and facilities. There is an acute need to create more housing stock and programming for adults with autism and this proposed reg looks like it'll kill development. For more on what the autism community actually wants, please take a look at the "Opening Doors" report: http://www.autismcenter.org/documents/openingdoorsprint.pdf

I briefly looked over the Opening Doors report from the Southwest Autism Research & Resource Center (SARRC). The report is packed with information on a full range of housing alternatives, funding sources, model programs, diverse living arrangements, considerations for design of housing and living spaces, and much more. Any individual or organization thinking about developing housing and living arrangements for people with autism or any other disability, for that matter, should take a look at this.

Thank you, anonymous, for taking the time to share this information.

Open house: Ann Arbor High School for students with high-functioning autism

This is from the March 2011 issue of A Different Path, a newsletter for families with school-age special needs children in Washtenaw County.

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Veritas Christi's Open House

Could Veritas Christi H.S. be right for a child you know?

If your child or a child you know struggles with distractions at typical schools, has trouble connecting with teachers in a large classroom or for whom social issues detract from their learning, then VCHS may be worth a look. Matthew Landrum, chair of the English department, says that currently no class has more than 5  students, and the school maximum is 8 per class.

He says the school has students diagnosed with Asperger's and others for whom the stress of a hundred kids in the hallway between classes was deterring their academics. He says there is more teacher attention, teachers stay after school and most students finish their home-work at school..

The Open House is 

March 20th (Sunday) and March 27th (Sunday) 

from 11 a.m. - 3 p.m.
410 S. Maple Rd., Ann Arbor, MI

The school is always open to visitors and more information can be found at the Veritas Christi Website.  

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More on A Different Path: This is a newsletter that includes heartfelt articles by and for parents, siblings, and friends of people with disabilities. It also includes announcements of events and other valuable information. If you want to receive your own copy of this newsletter by e-mail attachment, contact beestange@comcast.net. 

This is all done by volunteers. Donations are always welcome. Send to:

Different Path
P.O. Box 8276
Ann Arbor, MI 48107-8276

Think Summer

Autism groups clash over National Council on Disability nominee

President Obama nominated eight people to serve on the National Council on Disability. All but one have been confirmed by the U.S. Senate. Ari Ne'eman, a 22-year old man with Asperger's Syndrome, has stirred up enough controversy that his appointment has been blocked by one or more Senators.

Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.

Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.

Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.

In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.

What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out of institutions:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).

Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.

The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.

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For more information on this controversy, see:

• Erasing Autism? from Newsweek, May 16, 2009
• Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, from the NY Times, March 27, 2010
• See numerous interviews with Ari Ne'eman on YouTube.com
• Life on the other end of the autism spectrum: Planet Autism from Salon.com, September 27, 2003
• Letter to President Obama from groups opposing Ne'eman's appointment
• VOR Olmstead Resources
• New Jersey Choice press conference video of Robin Sims, parent of NJ ICF/MR resident and President of VOR: introduction and extended remarks