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Emily Willingham: Autism, empathy, and violence: One of these things doesn’t belong here

16 Dec

Parent, editor of the Thinking Person’s Guide to Autism, biologist and science writer has written about the Newtown  Connecticut, Sandy Hook Elementary shooting in
Autism, empathy, and violence: One of these things doesn’t belong here

Some news coverage in the last 24 hours has mentioned autism in the context of the tragedy in Connecticut, particularly referencing Aspergers or “high-functioning” autism. Talking heads have brought up the “empathy” factor when discussing autism, and I’d like to set some of the record on that straight.

She does a great job “setting the record straight”. The rest of the article is available at: Autism, empathy, and violence: One of these things doesn’t belong here

The autism communities–autistics, parents and more– are shocked and offer sympathy and empathy to the communities involved in the shooting.
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By Matt Carey

Autism Rights Watch Grieves for the Families after Newtown, CT Shootings

16 Dec

Autism Rights Watch has offered a statement of support for the families and communities of Newtown Connecticut:

Autism Rights Watch Grieves for the Families after Newtown, CT Shootings

ARW starts with:

Autism Rights Watch grieves for the families of the Sandy Hook Elementary School and the community of Newtown, CT. We are devastated. Our wishes and condolences go to the many families affected. Our thoughts also go to the first responders who faced this horrific scene.

The full statement can be found at the link above, but let me pull one more paragraph. It is very difficult to address a side issue to such a horrific event, but AWR, like other autism orgs who have offered similar messages, does so with respect, informing the media of the need to include autism accurately:

The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being “autistic”, “odd”, “awkward”, “camera shy”, a “nerd” and “uncomfortable with others” does not cause a person to become a mass murderer. Autistic persons are more likely to be victims, rather than perpetrators of violence. Autism Rights Watch urges the public and the media outlets not to stigmatize the autistic persons and their families. They already are facing segregation and prejudices on a daily basis.

Autism Rights Watch bills itself thus:

Note: Autism Rights Watch is an independent non-partisan, non-sectarian international non-profit organization dedicated to the rights and the inclusion of the persons on the autism spectrum and with other special needs. Our 501c3 status is pending. ARW is an American based NGO with significant activities in France and in Florida. It participates as an NGO to the informal network against school segregation at the Council of Europe.

Media inquiries shall be directed to contact@autismrightswatch.org

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By Matt Carey
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By Matt Carey

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

15 Dec

Autistic Adult Rachel Cohen-Rottenberg has written about the Newtown shooting at Sandy Hook Elementary in:

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat
December 15th, 2012 by Rachel Cohen-Rottenberg

Yesterday morning in Newtown, Connecticut, a young man murdered 20 children at the Sandy Hook Elementary School, along with six adults, having already killed his own mother. When I saw the news, I broke down and cried. All I could say, over and over, was Why would anyone kill little children? How could anyone do such evil?

Given the speculation that the killer was autistic, it is important that autistic voices be heard, autism community voices be heard.

The full article at When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

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By Matt Carey

AWN’s Appeal to Media Sources Covering Newtown, CT

15 Dec

The Autism Women’s Network (AWN) ha issued an appeal to media sources covering the Newtown shooting story.

AWN’s Appeal to Media Sources Covering Newtown, CT
There is no evidence linking planned criminal violence to autism.
With the tragic events unfolding regarding the recent school shooting at Sandy Hook Elementary, we here at Autism Women’s Network send our heartfelt condolences to all the families. It is unimaginable what they are going through at this time. The loss of so many innocent lives is unspeakable and heartbreaking.

With a few media sources reporting that the shooter is on the autism spectrum, we want to make an appeal that reporters and news outlets tread carefully in this regard. First, nothing has been confirmed about any possible diagnosis the shooter may have had.

Secondly, there is zero evidence linking planned crimes to autism. It cannot be stressed enough that autistic people, as well as all people with disabilities, are more likely to become victims of violence and crime rather than the perpetrators of such: Crime Victims with Developmental Disabilities.

Please remember that attempts to link a population of people to a particular crime is stigmatizing and damaging. The lasting affects cause incomparable harm and hurts autistic people. We appeal to all media and news agencies to use great care in reporting the facts as well as how the facts are framed. We ask that you practice responsibility in your media coverage. Any insinuation that autism is the cause of planned criminal violence is wholly inaccurate, as there is no evidence to support this assumption.

At this time, our attention is focused on those who lost their lives and their families. We extend our deepest sympathies and continued thoughts of comfort.

Respectfully,

AWN Board of Directors: Sharon daVanport, President — Corina Becker, Vice President — Mara Fritts, Secretary & Treasurer — Lori Berkowitz, Director of Web Development

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By Matt Carey

Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims

15 Dec

Paula C. Durbin-Westby is an autistic adult who has offered some views as an autistic (Asperger syndrome), as a parent and as an autistic parent on the shooting in Connecticut in Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

It begins:

Today, December 14, 2012, I got a text about four minutes before I walked into my son’s school to play the piano for a winter program. The text said that 18 (then up to 20) children had been killed at an elementary school, not unlike my son’s. Children the age of the children I would be making music with in a few minutes. I was in shock. The texts I was receiving came from my dear brother, who has small children of his own. Since I was not online or near any media sources, he wrote to me what I was seeing on breaking news, and we texted together, as parents, about how horrible, how unthinkable, this heinous act was. His children were with him; mine was in school, and I had to resist an overwhelming impulse to sign him out and leave.

The full article is at Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

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By Matt Carey

Autism Speaks: Statement on Newtown, Connecticut

15 Dec

Autism Speaks has issued the following statement on the Coonecticut school shooting yesterday:

Statement on Newtown, Connecticut

Statement on Newtown, Connecticut

Our hearts go out to the families and town of Newtown, Connecticut in the wake of this heartbreaking event. Several media outlets are reporting that the shooter might have had an autism spectrum disorder. Some have also inaccurately reported that there is a linkage between autism and planned violence. We ask that blame not be placed on people with disabilities or disorders in the midst of these types of tragedies and that everyone keep the families of Newtown in their prayers.

Elizabeth Feld
President, Autism Speaks

Edit to add: I posted this statement in full without asking permission of Autism Speaks. It is short enough to make it difficult to pull sections out for a discussion. I greatly appreciate Autism Speaks making this statement. I am not associated with Autism Speaks (or any autism organization).

Autism Society: No Linkage Between Autism and Planned Violence

15 Dec

The Autism Society of America issued a statement yesterday on the Connecticut school shootings: Autism Society: No Linkage Between Autism and Planned Violence

Autism Society: No Linkage Between Autism and Planned Violence

December 15, 2012
By Autism Society

Yesterday, 26 people lost their lives through the acts of a single person. These 26 people were children, teachers, husbands, wives, mothers, fathers, brothers, and sisters.  Today, their families are experiencing grief that can’t be described.  Our thoughts and prayers are with all those impacted by yesterday’s tragic shooting.

 The statement notes that many news outlets are reporting the speculation that the shooter was autistic and that “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence. ”

The statement goes on to state:

Please do not judge any individual with autism based on what is being said about a killer of innocent children and teachers.  Rather, our nation’s attention must be focused on being there for the children and teachers whose lives were lost yesterday

The full statement can be found at: Autism Society: No Linkage Between Autism and Planned Violence

(Note: I originally posted the statement in full. I did not request permission to do so, so I have edited this article)
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By Matt Carey

ASAN Statement on Media Reports Regarding Newtown, CT Shooting

15 Dec

The Autistic Self Advocacy Network (ASAN) has issued a statement on the school shooting in Connecticut yesterday:

ASAN

Statement on Media Reports Regarding Newtown, CT Shooting

December 14, 2012
In response to recent media reports that the perpetrator of today’s shooting in Newtown, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newtown, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.

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By Matt Carey

FDA issues warning letter: The Judge Rotenberg Educational Center 12/6/12

14 Dec

The Judge Rotenberg Center in Massachusetts is the focus of much criticism for their use of electric shocks as aversives for behavior modification.  FDA approval is required for the shock devices (GED). Apparently JRC has changed the design but not sought FDA approval.

Here is the letter:

VIA UPS Next Day Air
December 6, 2012
Glenda Crookes
Executive Director
The Judge Rotenberg Educational Center
240 Turnpike Street
Canton, Massachusetts 02021-2359

Dear Ms. Crookes:

On October 3, 2012, through October 17, 2012, an investigator from the United States Food and Drug Administration (FDA) inspected your facility located at 250 Turnpike Street, Canton, Massachusetts.  As a result of this inspection, we observed the Graduated Electronic Decelerators (GED) 3A and GED4 devices at your facility.  Our inspection revealed that your firm has an inventory of (b)(4) GED3A devices and (b)(4) GED4 devices, for a total of (b)(4) GED devices.  Furthermore, our inspection revealed that use of the GED devices has been authorized for (b)(4) students through the Massachusetts Probate Court.
In a letter dated May 23, 2011, FDA notified your facility that the changes and modifications to the originally-cleared GED device require a new premarket notification under 21 CFR 807.81(a)(3).  As a result, the GED3A and GED4 devices violate the Federal Food, Drug, and Cosmetic Act (Act) because your facility has failed to obtain FDA clearance or approval.  Specifically, the devices are adulterated under section 501(f)(1)(B) of the Act, 21 U.S.C. § 351(f)(1)(B), because your facility does not have an approved application for premarket approval in effect, pursuant to section 515(a) of the Act, 21 U.S.C. § 360e(a), or an approved application for an investigational device exemption under section 520(g) of the Act, 21 U.S.C. § 360j(g).
In a letter dated June 29, 2012, FDA again notified your facility that the GED3A and GED4 devices are adulterated and require the submission of a premarket notification.  In responses to the letters dated May 23, 2011, and June 29, 2012, your facility stated that it is planning to make a submission under section 510(k) of the Act, 21 U.S.C. § 360(k), for changes and modifications to the GED3A and GED4 devices by December 2012.  We still have not received any submission from your facility.
Your facility should take prompt action to correct the violations addressed in this letter.  Failure to promptly correct these violations may result in regulatory action being initiated by the FDA without further notice.  These actions include, but are not limited to, seizure, injunction, and civil money penalties.  Also, federal agencies may be advised of the issuance of Warning Letters about devices so that they may take this information into account when considering the award of contracts. 
Please notify this office in writing within fifteen business days from the date you receive this letter of the specific steps your firm has taken to correct the noted violations, as well as an explanation of how your firm plans to prevent these violations, or similar violations, from occurring again.  Include documentation of the corrections and/or corrective actions (including any systemic corrective actions) that your firm has taken.  If your firm’s planned corrections and/or corrective actions will occur over time, please include a timetable for implementation of those activities.  If corrections and/or corrective actions cannot be completed within fifteen business days, state the reason for the delay and the time within which these activities will be completed.  Your firm’s response should be comprehensive and address all violations included in this Warning Letter.
Your facility’s response to this letter should be sent to:  Karen Archdeacon, Compliance Officer, Food and Drug Administration, One Montvale Avenue, 4th Floor, Stoneham, Massachusetts 02180.  If you have any questions about the content of this letter, please contact Ms. Archdeacon at (781) 587-7491.
In addition, we have scheduled a meeting at the FDA campus in Silver Spring, Maryland, Building 66 on Wednesday, January 9, 2013, to discuss the contents of this letter and to discuss your proposed 510(k) submission.  The purpose of this meeting will be to discuss an appropriate transition period, as of the date of the meeting, to discontinue use of the violative GED3A and GED4 devices.  Use of violative devices after this transition period may subject those devices and responsible persons at your facility to enforcement action, including product seizure, without further notice.  Please contact Ms. Archdeacon, at the above number to confirm this date or to reschedule a mutually convenient time.

Finally, you should know that this letter is not intended to be an all-inclusive list of the violations at your facility.  It is your facility’s responsibility to ensure compliance with applicable laws and regulations administered by FDA.
Your facility should investigate and determine the causes of the violations noted in this letter, in the Inspectional Observations, Form FDA 483 (FDA 483), issued at the close of the inspection, and in the letters dated May 23, 2011, and June 29, 2012.
Sincerely yours,
/S/
Mutahar S. Shamsi
District Director
New England District

I have to admit, this move reminds me of the US Government bringing All Capone to court for tax evasion.

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By Matt Carey

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

13 Dec

A recent paper addresses an issue I personally have considered very important and understudied: health care delivery for autistics. The current paper is: Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership (pubmed link, full paper at AASPIRE).

From the AASPIRE press release:

AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, “As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum. However, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”

While it is not surprising, it is sad that the healthcare system is not adequately serving autistic adults. Most of the survey respondents (68%) identified as having Asperger syndrome. Also, half (50%) identified as having disability in the areas of learning/remembering.

One side point, but an important one of this study: the involvement of AASPIRE and of autistic adults in the study. AASPIRE stands for the “Academic Autistic Spectrum Partnership In Research and Education (AASPIRE)”.

Autistic adult and AASPIRE Co-Director Dora Raymaker is also quoted in the press release:

AASPIRE’s community Co-Director, Dora Raymaker, noted “While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.”

I’ve already discussed the participation of AASPIRE, but it is worth noting the author list and affiliations:

Christina Nicolaidis, MD, MPH1, Dora Raymaker, MS1,2, Katherine McDonald, PhD3, Sebastian Dern4, W. Cody Boisclair, PhD4, Elesia Ashkenazy2, and Amanda Baggs4

1Departments of Medicine and Public Health & Preventive Medicine, Oregon Health & Science University, Portland, OR, USA; 2Autistic Self Advocacy Network, Washington, DC, USA; 3Department of Public Health, Food Studies & Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY, USA; 4AASPIRE Community Partner at Large, Portland, USA.

The names that jumped out at me right away were Dora Raymaker and Amanda Baggs. Autistic adults and some of the best people I know discussing rights and ethics of autism.

Here is a press release from Syracuse:

Katherine McDonald, Falk College of Sport and Human Dynamics associate professor and BBI faculty fellow, and other researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) have found that autistic adults report significantly worse health care experiences than their non-autistic peers.

The article, Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership, is published in the Journal of General Internal Medicine.

AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Syracuse University, Portland State University, and University of Indiana.

Read AASPIRE’s news release about the study

The AASPIRE press release is also available on the Thinking Person’s Guide to Autism.

Here is the abstract:

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.

OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.

RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).

CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

I would love to see more work on this, and solutions to these issues. I would love to see more work on how the medical system as it stands disincentivises doctors from taking on developmentally disabled patients. I would love to see work on how best to serve the medical needs of individuals with communication and sensory issues which make it much more difficult to perform a standard office visit. I would love to see solutions to problems that almost certainly exist.

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By Matt Carey

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