This month is dually known as Autism Acceptance Month (by Autistics and our allies) and Autism Awareness Month (spearheaded by Autism Speaks, a cure-centric organization with little support from the Autistic community). Whichever you prefer to recognize, you have probably seen Light It Up Blue or a similar campaign by Autism Speaks, or read a news article about the “staggering” number of Autistics, and how our lives our so difficult.
You might even have been inspired by one or another of these campaigns, either this year or before, to consider altering your career path to do something to help “people with autism.”
We, the below signed members of the Stanford Autistic community, would ask you to reconsider.
Many Allistics (people with an Allistic neurology; that is, people who are not Autistic) believe that they can help us through researching how to find “cures” or how to “mediate” the symptoms of Autism. Many will want to find the confluence of factors that causes a kid to become Autistic. Still others will be determined that they can further differentiate Autism (and Autistics) into a multitude of categories, in the hopes that more labels will somehow make us more self-aware.
We would ask: What does this work actually accomplish?
We do not need more labels. We do not need to know why we have a different neurology than you. And we certainly don’t need to know how to fix something that isn’t broken.
This and similar types of research achieve nothing but the continued marginalization of Autistics, and the perpetuation of stereotypes and myths about our “disorders.”
We are not disordered. We have a different neurology than you do, that can be fixed no more than yours can.
If you want to help Autistics, we encourage you to go into careers that will actually benefit us instead of trying to “cure,” “mitigate” or “eradicate” something we, along with many of our family members and our allies, consider a beautiful variation of human existence.
Go into researching the needs of Autistics at different ages, and how those needs can be met and accommodated as the person grows and enters school, college, the workforce and retirement homes. Develop classroom strategies that work in harmony with Autistics’ strengths and needs, which empower us to stim, instead of making us feel ashamed for being who we are. Build cheaper and more accessible alternative and augmentative communication (AAC) devices for non-speaking or minimally speaking Autistics, to help translate their communication to others around them. Help parents understand that there is nothing wrong with them or their child, and teach them how to raise their child in an environment that is supportive, loving and nurturing to the child’s whole, Autistic self.
Autism Speaks, the main autism organization in the world, is nearly universally disliked and resisted by Autistics, in large part because so little of the research actually benefits Autistics. Most goes towards finding cures and preventive care, something some parents might want, but Autistics do not. Additionally, the Autistic Self-Advocacy Network, an Autistic-run and supported advocacy group, demonstrates that “According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.”
Whatever you do, listen to us. Not just the three of us. We represent a minute fraction of the millions of Autistics alive. Pay attention to what Autistics are asking of you and what it is we actually need.
We would like to quickly note that many consider us three Autistic signers to be out of touch with what actual Autistics needs. Our critics are not Autistics, but often family of Autistics (or people with autism), who suggest that our intellect and achievement somehow disqualify us from experiencing “real” Autism.
To this, we have two things to contend. We have experienced our fair share of ableism, harassment and abuse. Though they come in different forms, and we have largely overcome them, high collegiate and intellectual achievement does not negate the many challenges we have faced due to our different neurology.
At the same time, we acknowledge that there are many Autistics with more limitations than we have, who are more disabled by society than we are. But we also feel that many Allistics use more obviously disabled Autistics as a way to combat less obviously disabled Autistics, without actually caring about either, and that the divisions of high-, mid- and low-functioning that Allistics have created for us do little more than divide and hurt us. As Amy Sequenzia, a non-speaking, diagnosed “low-functioning” Autistic, wrote, “there are many of us trying to be heard. We did not put the “low” in “low-functioning” and we are speaking out.”
If you feel called to help us, don’t work for an organization the vast majority of us condemn, an organization that considers us an epidemic, a burden and a tragedy. Don’t perpetuate the notion that we need to be fixed, or that our lives are somehow worth less than others’. Don’t ignore our critiques, or insulate yourself from actual Autistics.
Instead, use your power and privilege to help us make the institutional and social changes we need to live happier, healthier and more fulfilled lives.
Autistic Stanford students
Erika Lynn Abigail Persephone Joanna Kreeger ’16
Olivia Montoya ’15
Contact Erika Lynn Abigail Persephone Joanna Kreeger at ekreeger ‘at’ stanford.edu and Olivia Montoya at omontoya ‘at’ stanford.edu.