It would be remiss of me not to share what is happening on the world stage with regard to the organization Autism Speaks and its most recent alarming contributions to autism stigma. As such this post is dedicated to concerns regarding the ability of Autism Speaks to speak on behalf of people with autism.
According to their website, Autism Speaks is the “world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals and their families”.
I do not like to discredit people or organizations when their intent is for good, but Autism Speaks appears to have disregarded the pertinent advice of adults with autism, on many occasions, regarding more inclusive language and practices and as such is deserving of being called out for their errors of judgment.
Unfortunately, Autism Speaks has many times created substantial negative publicity towards people with autism, which is not in line with the evolving understanding of autism and they are facing a backlash from many members of the autism community.
Recently, Autism Speaks put out a ‘call to action’ that offended many members of the autism community. In fact, it offended author, speaker and educator and autism consultant John Elder Robison, so much that he resigned from his Science and Treatment Boards at Autism Speaks.
Autism Speaks ‘call to action’ was a generalized series of negative portrayals of children with an Autism Spectrum Disorder (ASD) and their families. In their ‘call to action’, Autism Speaks refer to the “autism crisis” and repeatedly and emphatically state what they believe ASD is. Specifically, they asserted that:
“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future”
“We’ve let families split up, go broke and struggle through their days and years”
“These families are not living”
“Don’t our families deserve it? American has always been about its great people”
People with an ASD are among our great people, my family is living and I am not in despair.
Of course, some people may view their lives and challenges like Autism Speaks suggests, but as the world’s largest autism science and advocacy organization how could they possibly not see how prejudiced and fear mongering their messages are towards ASD and hence people with an ASD.
Lydia Brown a disability rights activist, scholar and writer, exposed an even more alarming development in her blog of an alliance between the Judge Rotenberg Center (JRC) and Autism Speaks. The JRC is the only facility in the United States that makes extensive use of aversives, including electric shock and withholding of food in its treatment and behavioural interventions for students with special needs.
What we are also grappling with here is the dichotomy of disability discourse. The Medical Model of Disability determines disability as the result of impairment in the individual. No account of the effect of the environment is taken into consideration1. The Social Model of Disability determines the disadvantage or restriction of activity is caused by a contemporary social organization which does not take into account people with impairments and thus excludes them from mainstream social activities2. Social stigma then contributes to further health inequities through affecting availability of resources, social relationships, psychological and behavioral responses and stress3.
In a sobering article by Reindal (2000), on the ethics of gene therapy with regard to disability, Reindal argues that social models of disability and the views of the individuals with impairments should be given greater priority in academic discussions1. A major concern with the dependence on the medical model of disability is that it leads to value judgments by the unimpaired resulting in the consideration that the lives of those with an impairment as less worthy1. Reindal (2000) also argues that as a consequence of the medical model, resources are directed into impairment-related research and intervention in lieu of social change for the inclusion of people with impairments1. Autism Speaks is a prime example of this in action.
In his analysis of the social model of disability with regard to ‘learning disabilities’ as opposed to physical disabilities, Goodley (2010) outlines important considerations including embracing notions of distributed competence, ability, intelligence, capacity and ‘differently articulate’, sensitivity to the social nature of all human beings (and their abilities) and recognizing the social and cultural formations of (in)ability2. Autism Speaks is failing in this regard.
Autism Speaks does not even have one openly autistic person serving on the Board of Directors or working in a leadership role as an executive or administrator so how could they possibly speak for people with autism?
You can read more about the Autism Speaks controversy at the following sites:
- Reindal, S.M. Disability, gene therapy and eugenics – a challenge to John Harris. Journal of Medical Ethics 2000; 26:89-94
- Goodley, D. ‘Learning difficulties’, the social model of disability and impairment: Challenging epistemologies. Diability & Society 2001; 16(2): 207-231
- Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health 2013; 103(5):813-821