Autistic Advocacy Group Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell

12 Jan

Peter Bell of Autism Speaks has been appointed to the President’s Committee for People with Intellectual Disabilities. As I read about the appointment I felt that there would be some reaction. Perhaps even a strong reaction. And, as you will see, I was correct. The Autistic Self Advocacy Network (ASAN) has issued a press release condemning the appointment.

Here is the press release:

FOR IMMEDIATE RELEASE

PRESS CONTACT:
Melody Latimer
Autistic Self Advocacy Network
Phone: 202-630-7477
mlatimer@autisticadvocacy.org

AUTISTIC ADVOCACY GROUP CONDEMNS PRESIDENTIAL APPOINTMENT OF ANTI-VACCINE ACTIVIST PETER BELL

Recent appointee Peter Bell has a long history of supporting fringe, anti-vaccine positions widely discredited in the scientific community

Washington, DC – January 12, 2012 – The Autistic Self Advocacy Network, the nation’s leading advocacy group run by and for Autistic adults, today expressed concern and disappointment over President Obama’s announcement Tuesday of his intent to appoint anti-vaccine activist Peter H. Bell as a member of the President’s Committee for People with Intellectual Disabilities.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

“The link between Autism and vaccines has long been discredited, and so an appointment placing an anti-vaccine leader in a position to influence a greater audience and re-open the issue is disappointing and ill-advised. We respect and appreciate the Obama Administration’s commitment to autism issues, but hope they will vet their appointees more carefully going forward,” Latimer noted.

Autism Speaks, Bell’s employer, has a checkered and controversial history. In 2009, Autism Speaks lashed out at the Department of Health and Human Services for refusing to incorporate research objectives connecting autism to vaccines in the Inter-Agency Autism Coordinating Committee’s Strategic Plan for Autism Research. In response to Autism Speaks’ disconnect from mainstream science on this question, several senior executives resigned from the organization in protest.

Autism Speaks has also been viewed with substantial controversy by Autistic people themselves, in large part due to the organization’s failure to meaningfully include individuals with the disability on their board of directors or in more than token roles in their senior leadership. Other criticisms of the organization include the low percentage of funds Autism Speaks invests in services, abnormally high executive salaries and what many have interpreted as deeply offensive advertising utilizing fear and pity to raise money. In 2009, the organization debuted its much-ridiculed video “I Am Autism” at the United Nations in New York City, presenting autism as an anthropomorphic force aiming to steal children. After widespread protests from Autistic adults across the country and criticisms from other disability organizations, Autism Speaks eventually pulled the promotional film.

The Autistic Self Advocacy Network (ASAN) is the nation’s leading advocacy organization run entirely by and for Autistic adults and youth. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization’s activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.

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18 Responses to “Autistic Advocacy Group Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell”

  1. Marc Rosen January 13, 2012 at 05:32 #

    A petition has been started on Change.org urging the President to NOT appoint Bell to the committee. Here’s the link: http://www.change.org/petitions/the-president-of-the-united-states-dont-give-peter-bell-a-federal-appointment

  2. RAJ January 13, 2012 at 12:29 #

    Ari Ne’man the founder of ASAN was already appointed by the President as an advisor and he now objects to Peter Bell? Ari Nee’man and ASAN has for years been trivializing a profoundly handicapping disorder. As Dr. Alan Francis, the editor of DSM-IV, has correctly stated, the field trials of DSM-IV failed to predict the false epidemics of autism, attentional disorders and bi-polar disorders. Ari Nee’man and the members of ASAN, many of them self-diagnosed Aspies, under DSM-III diagnostic criteria would have most likely met diagnostic criteria for Schizoid Personality Disorder, a diagnosis that is not meaningless and requires agressive treatment, but hasn’t very much to do with autism at all, a profoundly handicapping disorder. Thank goodness the framers of DSM-5 intend to drop Asperger Syndrome from the ASD’s.

    Here’s my recommendation for a Presidential appointment to the President’s commission and Ari Nee’man should be required to sit next to this young man at every meeting of the Commission:

    • Sullivan January 13, 2012 at 21:54 #

      Ari Ne’man the founder of ASAN was already appointed by the President as an advisor and he now objects to Peter Bell?

      More accurately, the organization which he founded is condemning the choice. Mr. Ne’eman is not all of ASAN and is not mentioned in the press release.

      Ari Nee’man and ASAN has for years been trivializing a profoundly handicapping disorder.

      Interesting opinion presented without supporting evidence. Runs counter to my experiences and observations.

      . As Dr. Alan Francis, the editor of DSM-IV, has correctly stated, the field trials of DSM-IV failed to predict the false epidemics of autism, attentional disorders and bi-polar disorders.

      Which has nothing to do with the press release, Mr. Ne’eman or ASAN.

      Ari Nee’man and the members of ASAN, many of them self-diagnosed Aspies, under DSM-III diagnostic criteria would have most likely met diagnostic criteria for Schizoid Personality Disorder, a diagnosis that is not meaningless and requires agressive treatment, but hasn’t very much to do with autism at all, a profoundly handicapping disorder.

      As noted, the previous statement has nothing to do with the discussion. This sentence, however, is where you go completely off the rails and demonstrate ignorant and insulting behavior.

      Thank goodness the framers of DSM-5 intend to drop Asperger Syndrome from the ASD’s.

      What is your point? Autistics who are currently diagnosed with Asperger syndrome will continue to be diagnosed as autistic. I doubt this is the point you are trying to make. Rather you are continuing on your attack against people who have disabilities.

      Here’s my recommendation for a Presidential appointment to the President’s commission and Ari Nee’man should be required to sit next to this young man at every meeting of the Commission:

      I would chose that gentleman any day (and twice on Sunday) to represent the autism community over you, RAJ. If for no other reason that the way you use him in this manner is insulting to him. Not Ari Ne’eman, but the gentleman in the video.

  3. Julian Frost January 13, 2012 at 18:41 #

    Firstly RAJ, the “Vaccines cause Autism” lie has set back the Autism Community not only in wasted time and effort, but also in opportunity costs as money that could have been used to research assistive technologies and training methods for autistics was instead wasted checking vaccines. Vaccines are a dead end in autism research. Secondly, anti-vaccination propaganda has eroded vaccination levels to the point where lives have been lost.
    I am pleased that ASAN is not prepared to let Bell’s appointment pass unchallenged. As to the rest of your septic tirade: obvious troll is obvious.

  4. Parent January 13, 2012 at 22:17 #

    Autism Speaks is clearly not anti-vaccine. They “strongly encourage parents to have their children vaccinated.”

    You can read their official policy statement on their website: http://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism

  5. Science Mom January 14, 2012 at 00:34 #

    Funny how “pharma shill” doesn’t enter the vocabulary of the anti-vaxxers when cheering Peter Bell on: http://thautcast.com/drupal5/content/peter-bell-autism-speaks-disappointing-predictable-appointment

    He’s an anti-vaxxer and promotes the agenda of the vaccines-causes-autism crowd even if he has been reigned in by his handlers. And that is only one of his offences and reason to block this appointment.

    • Sullivan January 14, 2012 at 02:05 #

      Parent,

      What I find very interesting about the ASAN press release is the focus on vaccines and the term “anti-vaccine”. ASAN has not focused heavily on the vaccine discussion in the past. A very quick search of their site I did found only one page mentioning the word vaccine. Perhaps my efforts were not strong enough, but this seems a departure from previous

      I have not followed Peter Bell that closely. I do recall that he was keen to have a web page on the Autism Speaks site written about by David Kirby (whose efforts at the Huffington Post were extremely irresponsible in my view, promoting vaccine causation and fear with any level of weak or incredibly poor evidence). For some reason, Mr. Bell was keen to keep his involvement secret. Mr. Kirby did not oblige, posting the exchange to a yahoo group: https://leftbrainrightbrain.co.uk/2009/02/the-kirby-autism-speaks-connection/

  6. RAJ January 14, 2012 at 13:36 #

    ASAN is the Jehovah Witnesses of psychiatry. Many parents support the agenda of Autism Speaks which is to discover causes, prevention, treratment and cures. The agenda of ASAN is there’s nothing wrong with a 20 year old in diapers has never spoken a word and engages in severe self-injurious behavior and condemns any parent who who doesn’t think their child is perfect just the way he or she is.

    You need to cut out the sanctimoneus baloney.

    • Sullivan January 14, 2012 at 15:24 #

      RAJ,

      I would encourage you to read your comments with an eye towards phrases that are “sanctimonious bullshit” and, in the future, take your own advice.

  7. Marc Rosen January 14, 2012 at 14:43 #

    And at one time, the civil rights movement was considered a series of terrorist riots. What’s your point?

  8. The Bard January 14, 2012 at 18:24 #

    “ASAN is the Jehovah Witnesses of psychiatry”

    What the hell is this comment? Why are you turning religious belief that holds significant meaning to thousands of people into an insult?

    Seriously?

  9. Kassiane January 14, 2012 at 19:36 #

    *sigh*

    I don’t know what organization people are confusing with ASAN, but none of these things are the ASAN I know. Anti cure and anti progress are /not the same thing/.

  10. Roger Kulp January 15, 2012 at 05:41 #

    Um RAJ,Don’t get all Harold Doherty on us.

    No I apologize to Harold.You are sinking to a level of ignorance more like John Best,or some of the trolls that pester Orac,over at RI.I’m sure you know Asperger’s didn’t “go away”,it was just folded in to the autism spectrum.Autism is not the only genetic disorder now recognized to have a spectrum.Countless diseases like cystic fibrosis,and schizophrenia do too.

    Autism and Schizotypal Personality Disorder are very often comorbid conditions.One is a behavioural diagnosis,the other is a psychiatric one.You say you never heard of anybody who has both?Right here (raises hand).I also have Nonverbal Learning Disorder.Yep,a real trifecta.My diagnosis was Atypical Autism,though.Nonetheless it was of such a severity that the developmental psychologist at the time,wanted to put me in a group home.Only my mother stepping in,kept me out.I have ridiculous number of medical problems,too,and am very close to a diagnosis of 22q11.2 deletion syndrome.Autism effects about half of those with 22q,and usually it is NOT classic autism,with intellectual disability.

    As for Schizotypal Personality Disorder and autism being comrbid,there is a LOT of documentation for this.Omitting duplicate results,here are just a few of what our our friends st Google give us

    Schizophr Res. 2011 Mar;126(1-3):231-6. Epub 2010 Oct 8.
    Overlap of autistic and schizotypal traits in adolescents with Autism Spectrum Disorders.
    Barneveld PS, Pieterse J, de Sonneville L, van Rijn S, Lahuis B, van Engeland H, Swaab H.
    Source

    Leiden University, Department of Clinical Child and Adolescent Studies, PO Box 9555, 2300 RB Leiden, The Netherlands.
    Abstract

    This study addresses the unraveling of the relationship between autism spectrum and schizophrenia spectrum traits in a population of adolescents with Autism Spectrum Disorders (ASD). Recent studies comparing isolated symptoms of both spectrum disorders as well as diagnostic criteria for each (DSM-IV-TR) suggest resemblances in the clinical phenotype. A group of 27 adolescents with ASD (11 to 18 years) and 30 typically developing adolescents, matched for age and gender, participated in this study. Within the ASD group 11 adolescents satisfied DSM-IV-TR criteria for schizotypal personality disorders. Autistic and schizotypal traits were identified by means of well validated questionnaires (Autism Questionnaire, AQ and Schizotypal Personality Questionnaire-Revised, SPQ). Significantly more schizotypal traits in adolescents with ASD were found than in typically developing controls. Besides high levels of negative symptoms, adolescents with ASD also displayed high levels of positive and disorganized symptoms. There appeared to be a relationship between the mean level of autistic symptoms and schizotypal traits, as well as specific associations between autistic symptoms and negative, disorganized and positive schizotypal symptoms within individuals. Schizotypal symptomatology in all sub dimensions that are reflected by the SPQ scores, was most prominently associated with attention switching problems of the autism symptoms from the AQ. These findings indicate that patients diagnosed with an ASD show schizophrenia spectrum traits in adolescence. Although other studies have provided empirical support for this overlap in diagnostic criteria between both spectrum disorders, the present findings add to the literature that behavioral overlap is not limited to negative schizotypal symptoms, but extends to disorganized and positive symptoms as well.

    Copyright © 2010 Elsevier B.V. All rights reserved.

    http://www.ncbi.nlm.nih.gov/pubmed/20933368

    Schizoid personality in childhood (DSM-IV)

    Schizoid personality in childhood is defined by solitariness, lack of empathy, emotional detachment, increased sensitivity, at times paranoid ideation, and single-minded pursuit of special interests. All these features are seen in Asperger syndrome, and comorbid issues (depression or behaviour problems in particular) are likewise similar for both conditions. On the basis of evidence presented in Wolff’s (1998) discussion of schizoid personality in childhood, we have concluded that there is significant overlap between schizoid personality in childhood and Asperger syndrome.
    Schizotypal personality disorder (DSM–IV)

    The DSM–IV diagnosis of schizotypal personality disorder depends on odd beliefs or magical thinking, bizarre fantasies or preoccupations, odd thinking and speech, odd, eccentric or peculiar behaviour and appearance, lack of close friends and social anxiety. All of these criteria can also occur in Asperger syndrome, and Wolff (1998) regards “Asperger syndrome and schizoid/schizotypal disorders as interchangeable terms that identify roughly the same group of children”. The conditions do differ in at least three important respects. First, there appears to be an increased rate of develop-ment of schizophrenia in schizotypal personality disorder. Second, schizotypal personality disorder and schizophrenia co-occur in families and appear genetically related. Third, prospective research of children at high risk of schizophrenia (Erlenmeyer-Kimling et al, 2000) suggests that some individuals later diagnosed with schizotypal personality disorder developed without impairments in reciprocal social interaction and communication.
    http://apt.rcpsych.org/content/7/4/310.full

    Can Autism and Schizotypal Personality Disorder Co-Exist?

    The answer to your question is yes it can. To quote a teacher at a specialist school “You’ve got a brain (Autistic or Not) you can get a Mental Health Personality Disorder”. I had this along with Borderline Personality Disorder after a nervous breakdown at work. This Personality Disorder was slowly manifesting over about 2 years before before I left work, it is clear that I have Autism from my early development (Just checkout my early development page) and I can’t see why this “invisible” barrier must come up when dealing with someone who could both have Autism (A Developmental Disorder) and Schziotypal Personality Disorder (A Mental Health Disorder).

    https://sites.google.com/site/paulisaacscouk/home/speaker-events/paul-s-event-comments/autism-bullying/autism-schizotypal-personality-disorder

    You might want to see this too.
    http://blog.donnawilliams.net/2011/05/12/autism-aspergers-and-schizotypal-personality-disorder/

    Childhood and current autistic features in adolescents with schizotypal personality disorder

    Michelle L. Esterbergemail address
    ,
    Hanan D. Trotmanemail address
    ,
    Joy L. Brasfieldemail address
    Abstract

    The diagnostic boundaries between autistic- and schizophrenia-spectrum disorders have varied over the years, and some overlap in diagnostic criteria persists. The present study examined childhood and current signs of autistic disorder (AD) in adolescents with schizotypal personality disorder (SPD) or other personality disorders, as well as healthy controls. A structured interview was administered to rate participants’ current symptoms. Participants’ guardians were interviewed with the Autism Diagnostic Inventory—Revised (ADI-R), a clinical assessment of childhood and current autistic signs. Compared to both the other personality-disordered and healthy groups, adolescents with SPD were rated as having significantly more impairment on childhood and current social functioning, and having more unusual interests and behaviors. For the entire sample, impaired childhood social functioning and unusual interests and behaviors were associated with higher negative symptom scores. Current impairments in social functioning, unusual interests and behaviors, and communication were also linked with greater negative symptoms. However, neither childhood nor current autistic features significantly predicted later conversion to an Axis I psychotic disorder over the course of three years of follow-up. The findings indicate that past and current autistic signs are more common in adolescents with SPD, but neither current nor childhood autistic features are linked with conversion to psychosis.

    http://www.schres-journal.com/article/S0920-9964%2808%2900216-8/abstract

    Schizophr Res. 2011 Mar;126(1-3):231-6. Epub 2010 Oct 8.
    Overlap of autistic and schizotypal traits in adolescents with Autism Spectrum Disorders.
    Barneveld PS, Pieterse J, de Sonneville L, van Rijn S, Lahuis B, van Engeland H, Swaab H.
    Source

    Leiden University, Department of Clinical Child and Adolescent Studies, PO Box 9555, 2300 RB Leiden, The Netherlands.
    Abstract

    This study addresses the unraveling of the relationship between autism spectrum and schizophrenia spectrum traits in a population of adolescents with Autism Spectrum Disorders (ASD). Recent studies comparing isolated symptoms of both spectrum disorders as well as diagnostic criteria for each (DSM-IV-TR) suggest resemblances in the clinical phenotype. A group of 27 adolescents with ASD (11 to 18 years) and 30 typically developing adolescents, matched for age and gender, participated in this study. Within the ASD group 11 adolescents satisfied DSM-IV-TR criteria for schizotypal personality disorders. Autistic and schizotypal traits were identified by means of well validated questionnaires (Autism Questionnaire, AQ and Schizotypal Personality Questionnaire-Revised, SPQ). Significantly more schizotypal traits in adolescents with ASD were found than in typically developing controls. Besides high levels of negative symptoms, adolescents with ASD also displayed high levels of positive and disorganized symptoms. There appeared to be a relationship between the mean level of autistic symptoms and schizotypal traits, as well as specific associations between autistic symptoms and negative, disorganized and positive schizotypal symptoms within individuals. Schizotypal symptomatology in all sub dimensions that are reflected by the SPQ scores, was most prominently associated with attention switching problems of the autism symptoms from the AQ. These findings indicate that patients diagnosed with an ASD show schizophrenia spectrum traits in adolescence. Although other studies have provided empirical support for this overlap in diagnostic criteria between both spectrum disorders, the present findings add to the literature that behavioral overlap is not limited to negative schizotypal symptoms, but extends to disorganized and positive symptoms as well.

    Copyright © 2010 Elsevier B.V. All rights reserved.
    http://www.ncbi.nlm.nih.gov/pubmed/20933368

    Here’s a Powerpoint of a lecture given at The University of Edinburgh.
    http://www.rcpsych.ac.uk/pdf/0945%20stanfeild%20pentland%20tue.pdf

    Want more? It’s out there.

  11. oakfarm January 15, 2012 at 20:37 #

    About self-injury and the video as RAJ posted. Now I “just” have Asperger’s, but when I self-injured it was because I was stressed. Is it not natural to think that many other autistic who self harm, do it when they are stressed? In such cases, isn’t it easier to reduce the stress than to “cure” autism?

    And, not that I want to sound naive and I do not think it is easy to be server autistic, but who say that the “young man” isn’t nice to be around then he isn’t stressed?

  12. Paul Isaacs February 19, 2012 at 17:26 #

    Dear Rodger Kulp

    Thank for putting my comments up with regards to my Autism and Schziotypal Personality Disorder and also the intersting studies and links about the subject.

    I was severely autistic as a child, I didn’t gain funcational speech until I was around 7 or 8 years old, before that it was alot of sounds and noises which I made (later it was receptive and delayed echlalia and echopraxia).

    My Autism consists of (Donna Williams’ Fruit Salad Analogy 1995)

    Alexithymia – problems with self-emotional recogntion
    Social Emotional Agnosia – “blind” to body language
    Visual Agnosia – Problems with “processing” my visual field
    Simultagnosia – Problems with “seeing the bigger picture” I can only see things bit by bit but not in totality
    Semantic Agnosia – As I child I used to mouth,lick,touch things to gain “meaning”
    Visual – Verbal Agnosia – Problems with written words and not getting the meaning behind the words
    Tonal Agnosia – Not picking up inflection or emotional stress in words
    Auditory Agnosia – Haveing a heightened sense of sound pitch and not realising where sounds come from
    Pain Agnosia – Pain processing problems (high pain threshold)
    Meaning Deafness – Language processing disorder (words make not sense and are distorted)
    Echolalia
    Echopraxia
    Palilaia

    These are problems with understand others words, your own words and copying other peoples movements with no meaning.

    From my early development (late walker, late talker) it was clear that from a developmental point of view there was something going on.

    Mental Health Problems (which are inter-link but are SEPERATE from my Autism)

    OCD Obsessive Compulsive Disorder (diagnosed with High Functioning Autism in 2010)

    Schziotypal Personality Disorder (developed in late 2000s)
    Borderline Personality Disorder (developed and went in late 2000s)
    Dissoiative Disorders (developed in early childhood)

    All these are things are tacked on to my autism and “heighten” a lot fo the characteristics of my ASD.

  13. angela June 25, 2012 at 21:29 #

    i am a single parent of a autistic kid who is now 5 years old. He is in an autism program here in a school in south carolina. I was recently falsely accused of abusing my child by the school and have been found unfounded case closed. The lady with DSS told me to continue to keep all documents and dated information as i have been. The actual abuse has been taken place at school and i have reports and my son as proof and i was told to see the school board superintendent. I am having a hard time with anyone wanting to help me. I do not know if others have been treated bad because most the ones that is in his class can not speak as well as my blessed one is overcoming. My character and reputation is looked down on because of this i am in school working toward a degree in the medical field so i can take care of my little one. I feel me and my child has both become a victim and would like some advice on how to handle this. if you can please give me some advice i would appreciate it.
    thank you for your time
    angela

    • Lawrence June 25, 2012 at 23:41 #

      @angela – most school systems have an advocacy program for families with children with disabilities. Their job is to make sure the child receives all the services they require.

      Worst case, you should consult a lawyer.

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