Autism Speaks is the largest autism charity in the world. Based in the U.S. and founded in 2005, Autism Speaks (modestly) describes its organization as one that has "grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism."
Autism Speaks hosted a "Call For Action" in Washington in November 2013. Prior to the big event, co-founder Suzanne Wright wrote a piece on the "urgent need for a national plan" to cure the "autism crisis." Given the historical evidence, when there is a government intervention to "solve" a population of people labeled as a "problem," it makes sense that the piece is nothing but the rhetoric of fear. If you're in a good mood and want it ruined, you can read it here.
My personal highlight is how, according to Wright, the families of those with autism "are not living. They are existing." We are still sleeping, eating and breathing -- but, according to Wright, we do this whilst living in desperation and fear. (We're pretty good multi-taskers.)
As a sibling of autism, it is safe to assume that Wright is talking about me, and in response, I will say that yes, the challenges of autism are real. But so are the joys. Because autism is part of who my brother Jake is, it is a little part of everything he does -- from his artwork to his gentle nature -- and I wouldn't change him for anything. I have loved Jake totally from the moment he was born.
The reaction to this piece from the ASD community is full of anger and indignation but also sadness and hurt. All involved were quite offended by the message that either they or their sons, daughters, sisters or brothers' mere existence requires a national emergency. The responses are heartening: "I am not ill, nor am I missing," "I am not broken, nor am I lost,"
and "you are not speaking for me" are just some out of more than 700 comments on Wright's piece. There are many blogs from concerned parents denouncing their support of Autism Speaks and a petition to terminate financial support for the organization. The most significant response came from John Elder Robison, one of only three autistic people associated with the organization, who resigned from the Science and Treatment boards at Autism Speaks.
When an organization as large as Autism Speaks portrays autism in such a negative way, it adversely affects: people with autism, who now consider themselves a burden on their families and society in general; the parents and carers of those with autism; new parents of recently-diagnosed children; and people who know nothing about autism now believing autism is simply something to be feared or pitied.
As a carer and service user, there is a certain element of tacit complicity to being included in the marketing narrative of a charity's work. For a charity to explain what they do for their service users to the public, you, as said service user, become part of the public story -- even if not in a personally-identifiable way. The majority of the time, the trade-off is worth it -- you want to help in any way you can to support a service that you rely on.
Marketing in the third sector is arguably one of the most difficult sectors to market in -- I have worked in the marketing department of a small charity myself. People don't like to see their donations spent on advertising, and that is probably why the "sympathy sells" approach has plagued charities for so many years. The paper of the appeal can't be too thick, the freebies can't be too new and the advertorials can't be timed too close together, in case it all looks too expensive. This is obviously a warped concept -- consumer goods advertise the benefit of their goods all the time but, apparently, charities can't do the same.
This type of narrative is what we have now come to expect -- we feel confident enough in its normality to mock it- - but is it falling on deaf ears? And if it is, are we going to be subjected to more voices like Suzanne's -- hyperbole marketing-speak at the expense of the people the charity is supposed to serve?
Many other organizations have worked so hard to dispel the stigma associated with mental disabilities -- Mencap is a fine example. Through a lot of hard work done by a lot of people, we have managed to move away from words like "spastic" and moved forward from the idea that these people need to be separated and locked away from society. We are working hard to make it possible for those on the spectrum to live in the community, because these people are important and talented members of society. The regressive narratives created by organizations like Autism Speaks take these initiatives 10 steps backwards.
Autism Speaks is looking for a medical cure for autism -- but this still doesn't exist. So whilst it doesn't, the cure today is understanding, acceptance and help on an individual basis. Whilst the largest autism organization in the world might want you to think otherwise, I can assure you, the autism community does not want to be feared and resented. Autism Speaks is not speaking for, or listening to, those with autism.
Follow Katie Chodosh on Twitter: www.twitter.com/katiechodosh