16 March 2012

Include Us in the Conversation: What "Nothing About Us Without Us" Means

Edit (October 2013): There are portions of this post with which I no longer agree, though I still stand by its overall message. 

In early December (2011), a friend told me that the Psychology Department and Psi Chi Psychology Honors Society at Georgetown were hosting a panel called "Multiple Perspectives on the Autism 'Epidemic.'" At the time, there were three panelists: Roy Grinker, a medical anthropologist whose daughter is Autistic; Matt Biel, a clinician at Georgetown's Clinic for Autism and Communication Disorders; and Anne Gibbons from Autism Speaks, who also has an Autistic child. Three people with very different perspectives and ideas, but despite the title of "Multiple Perspectives," one perspective in particular was sorely lacking -- that of an Autistic person. None of the panelists on that list are Autistic.

Particularly for a panel called "Multiple Perspectives," it seemed an egregious omission to exclude an Autistic person from participating on the panel, particularly when there are Autistic adults with backgrounds in research or psychology. We were not included in the conversation. There was going to be Something About Us Without Us. I wrote to the panel organizers and met with the professor who advises the Psi Chi Honors Society to express my concerns about holding any panel about autism, but particularly one advertising "multiple perspectives," without any Autistic speakers. Thankfully, the event planners were receptive, and they issued an invitation to Scott Robertson, an Autistic activist and a Ph.D. candidate researching disability studies and assistive technologies in the College of Information Sciences and Technology at Penn State University. The panel's name was later changed to "Multiple Perspectives on Autism Research," and ultimately featured five panelists.

But the problem with what the event planners did lies with the mindset that allowed them to go about planning an event intended to feature multiple perspectives on autism without thinking to include an Autistic person as a panelist. While I was told that the panel was drawn together primarily by the students involved reaching out to their own connections (and there's nothing wrong with that in itself), that's still no excuse for not realizing that a panel about autism with multiple perspectives must have at least one Autistic perspective.

Unfortunately, this is normal behavior.

Last year, one of the fifty states' autism commissions was originally supposed to have a few Autistic self-advocates serving as members of the commission, but when it was decided that there were too many people on the panel, the first people to be cut were the Autistics. At a recent disability related conference, a woman with an Autistic son spoke about issues affecting Autistic people, despite the fact that her sixteen year old son could speak perfectly well for himself. This week, a high school hosted a speaker to talk about autism. The speaker is the parent of an Autistic child.

If we were talking about people in wheelchairs, Blind or Deaf people, people with cerebral palsy, or people with learning disabilities, it would be unthinkable to hold a panel or an event about those people without at least one of them included meaningfully. If we were talking about Black or African American people, Jews, Lesbians or Gays, Women, or Muslims, it would be considered insulting (at the very least) to exclude a member of that group, and absolutely unconscionable at the worst. Yes, caregivers of people in wheelchairs have valuable ideas and opinions about issues facing people in wheelchairs. Yes, White or Caucasian spouses of Blacks or African Americans have valuable ideas and opinions about issues facing Blacks and African Americans. Yes, non-Muslim scholars of Islamic Studies have valuable ideas and opinions about issues facing Muslims.

But those people cannot speak for members of a group to which they do not belong. A non-Muslim scholar of Islamic Studies might be very educated about various aspects of Islamic theology, jurisprudence, and political history, but a Muslim, by nature of being Muslim, will understand far more about what it means to be Muslim than any non-Muslim. Every Muslim in the world does not share the exact same experiences, level of piety, or beliefs as every other Muslim, but they do share one thing that no non-Muslim will have -- the characteristic of being Muslim.

This is true of Autistics as well. You cannot discount an Autistic person because he or she can't possibly speak for every single other Autistic person. No two Autistic people are going to have the exact same experiences, abilities, or challenges. But any Autistic person will automatically, by nature of being Autistic, understand far more about what it means to be Autistic than any non-Autistic. If you exclude an Autistic person because he or she does not represent in every possible way the experiences of every other Autistic person, then you make it impossible to logically include any Autistic people in any conversation about autism.

Nothing About Us Without Us has been a foundational principle of the disability rights movement since its inception in the latter half of the twentieth century. It's very simple. Nothing About Us Without Us means that whenever there is a conversation about us or about issues that directly impact us, we must be included at the table and given equal voice as the other participants.

While it has become standard practice to have conversations about autism and Autistic people without Autistic people, this is a practice that must change. Autistic people and our allies have routinely criticized events and conversations about us without us. Now it's time for the public to realize that this repeated fallacy represents a failure of society to change its attitudes about us. We can speak (or type or write or sign) for ourselves, and it's time to listen. It's past time to include us in the conversation.


  1. Hi Lydia! I must say I can relate to this issue so well. In November 2010, Irish Autism Action, which is Ireland's largest autism charity, organised the European Autism Conference. When the conference was first advertised in September 2010, the website indicated admission categories for "Parents/Carers", "Professionals" and "Students" only. There was no specific admission category for autistic adults who would like to attend.
    Another autistic adult, who called herself "Lady Asperger" and I made a number of comments on the Irish Autism Action blog: http://irishautismaction.blogspot.com/2010/09/european-autism-conference-dublin.html
    Initially, when I pointed out there was no specific category for autistic adults - the lady who writes the blog, who is also the mother of young autistic boy, merely suggested "I apply as a student, a parent or a carer, as I see fit". Never seemed to occur to her that most autistic adults are not students, parents or carers.
    I also pointed out that many autistic people are very literal-minded and have problems understanding indirect communication - ie: if a notice says "You are not welcome here", most autistic adults will believe this, and not challenge it in any way. We do not have a strong, independent autistic self-advocacy movement here in Ireland.
    Myself, along with a couple of other autistic self-advocates also emailed the organisers, and pointed out that if autistic people did not exist, there would be no need for a conference about autism. After a couple of weeks, autistic adults were added to the list of admission categories, but it was rather disappointing to know that we weren't even considered in the first place.
    There was a time in England when it was OK for employers and landlords to hang posters saying "No blacks, No dogs, No Irish". Such signs would be met with disgust and outrage nowadays. I sincerely hope that some day, when the organisers of an autism conference or discussion panel purposefully exclude autistic adults from speaking at or attending these events, that it would be met with a similar response.

  2. We have the same problem in my country but here we don't have any material created by Autistic people or for Autistic people. I am thinking of doing something in my language to help with this since many can't find anything. We don't have anything about Autism and Self-Advocacy that I could find.

    1. What country are you from, and what language is spoken?

    2. I'm from Brazil, we speak Brazilian Portuguese. I have been looking for Autistic adults on my country and for professionals that know anything about Autism and adults but it's hard to find anything.

    3. I speak Spanish, but I understand Brazilian Portuguese perfectly fine, especially in writing. Are there any particular materials you would like to see translated? I might be able to help with that; I have a peculiar talent for languages.


Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.