National Day of Mourning Post 1: Nine Steps We Can Take to Make Autistic Lives More Valued in Our Culture

Today, March 1, 2015, is the Autistic and Disabled Communities National Day of Mourning. It is usually a day to hold candlelight vigils in honor of disabled people who have been murdered by their caregivers. When this happens, the parents and caregivers often receive lighter sentences by the courts, if any at all, based on the idea that parents should not be given the same sentence for murdering a disabled child as they would a non-disabled child, and the media portrays the murders as a justified act claiming their child was a burden on the lives of their caregivers.  In the past year, more and more autistic children have been murdered by their parents including 6-year old London McCabe and 8-year old Jude Mirra. The local Kansas City chapter of the Autistic Self-Advocacy Network that I belong to was planning to hold a vigil this day that I was going to come home for, though due to technical issues, they had to cancel it, but I want everyone to know that just because this vigil has been cancelled, that does not mean that this day has lost its meaning to me.

                Today is also the day that two students on my campus, 20-year Erin Hook and 19-year old Jennifer Reeder, were killed in a car wreck. When we lose someone we love, or whose lives were important to us, we want their lives to be respected by those around us. Therefore, I realize we as individuals need to take steps to alleviating the notion of autistic people as burdens, and see them as people who should be respected for their inherent merit and character without needing to be changed to the same respect we ourselves enjoy, and who are all able to contribute to our society. We can make that change in perception by changing the way we speak, treat, and view autistics. I believe by following nine basic steps in treating autistic people, we can change the way their lives are valued and how people treat them, and these steps are:

1.       Exchange the term “Autism Awareness” for “Acceptance,” “Inclusion,” or “Rights.” Autistic people are not burdened by the fact that so few people know about our weaknesses or the trouble we are said to give to others, but by them not knowing our value to society and abilities. Awareness tends to paint a picture of children causing their families stress by their needs rather than people of all ages who can give a lot to society if given the appropriate opportunity to do so.

2.       Let’s stop using terms like “high” and “low-functioning.” We need to stop grading autistic people based on their ability to get good grades, go to college, and live independently. They have a lot more to offer than that.  Everything that an autistic can give should be valued and we need to judge them by the individual merit of their actions and not their abilities.

3.       Let’s move away from therapies such as Applied Behavior Analysis. ABA has cost thousands of dollars and hours of therapy trying to rid autistics of behaviors that should be accepted such as stimming and avoiding eye contact. Eye contact has been shown to not be essential to communication (how would blind people communicate then), while dozens of autistic activists have pointed out that stimming helps them self-regulate, express emotion, and tune out distractions. Amy Sequenzia once said, “If it helps them, it’s not ABA.” Let’s stop treating autistic people as if they need to be changed to be accepted.

4.       Let’s use identity-first language instead of person-first language. Identity-first language (autistic person), as opposed to person-first language (person with autism) implies that autism is a part of themselves and not some part you can get rid of. We need to stop thinking we can do that when autistic people do not please us. It also implies autism and personhood are mutually compatible. We wouldn’t say “person with blackness” or “person with Buddhism.” If an autistic person you are talking to would prefer you use person-first language, as some do, then you should use it, and you can ask them which they prefer, but it depends on the person.

5.       Let’s stop using the puzzle piece to represent autism. As many of us have pointed out, the puzzle piece implies that autistic people are to be put together, rather than already whole themselves. It suggests that their diversity of abilities is linear and that they fit together separately when in fact, our range of abilities is more cyclical, where one person can go from the other end at any time, and that we fit together naturally like a rainbow, making one complete picture. More empowering symbols include the rainbow infinity, a butterfly with “hidden” wings, a pie chart, rainbow stars, and an infinity on a heart with wings. No one symbol can unite all the autistic community, but as we get older, we need symbols that are more empowering and less infantilizing. 

6.       Let’s stop portraying autism as a medical disaster that causes havoc on societies and families. The idea that autism is more prevalent now than ever before only makes sense when one ignores the increase in professionals able to diagnose autism, the increased number of parents and teachers aware of and looking out for autistic signs, the more individuals and families willing to admit to autism in surveys, the increasing number of adults being diagnosed with autism, and the increased criteria for autism diagnosis. There is no science to it whatsoever. 

The idea that more boys are autistic than girls only holds up when one ignores that girls are frequently undiagnosed because autism manifests itself less in ways that stick out in girls. Girls have learned to blend in naturally perhaps partly due to the media and television Such as House Bunny, Mean Girls, and Legally Blonde) telling them what girls “are supposed to be like,” whether a beauty queen, popular girl, cheerleader, Greek sorority girl, and so on.

We also need to stop saying that an autistic child makes his/her parents more likely to get divorced. Former Autism Speaks executive Alison Tepper Singer claimed on The Oprah Winfrey Show that if you have an autistic child, you are twice as likely to get divorced (You can figure that one out). A study done in junction with the Autism Society of America and Easter Seals concluded that divorce rates of parents with autistic children were around the same to slightly lower to those of parents without autistic children. Connecting autism to divorce is simply a scare tactic by groups such as Autism Speaks, the National Autism Association, and the Autism Research Institute to raise money for biomedical research, executive salaries and expenses, and advertising with little going to services to help autistics who need it this very moment. 

Let’s also stop using face value number statistics such as “the cost of taking care of an autistic person over his/her lifetime is $3,200,000.” This may seem like a lot, but when divided over eighty years, it is about $40,000 per year, about the cost of a non-autistic person.”

We need to also stop portraying autistic people as criminals. Reports of Elliot Rodgers and Adam Lanza have shown that there was no correlation to their actions at Santa Barbara and Sandy Hook respectively, and statistics indicate that autistic people are less likely to commit crime. We might also point out that nearly all the world’s mass murderers-Hitler, Stalin, Mao, Pol Pot, Idi Amin, and Mengistu-were neurotypical, so perhaps we should connect that to genocide.

7.       Let’s stop expressing sympathy towards parents who murder their autistic children. If mothers like Julian McCabe think it would be harder to see her son London not live up to conventional measures of success than it would for her to be able to see her son London again, then I don’t think she cares about him very much. I know of several parents of non-verbal autistic children who don’t murder them who never have sympathy expressed for how they are willing to give their child the best possible life at any cost. I also know several parents who have lost a child, and their lot is not an easy one. Many never recover, and some have even contemplated suicide. Julian McCabe, on the other hand, was willing to go to jail, albeit shorter than she should have been in it, in order to rid this world of her son. No evidence has been found for her to be mentally insane, apart from Dr. Phil’s “armchair diagnosis,” which did not excuse Elliot Rodgers and Adam Lanza from their actions, and in any case, most insane people do not commit murder. 

8.       Let’s listen to the opinions of autistic voices. All of them. Unedited. Acting on their own behalf. In their own context. The whole variety. Verbal and non-verbal. Autistic adults have been the ones making awareness of the fact that autistic people can feel empathy, have careers, get married, and be a part of society. They are frequently inspirations to autistic children and have as much, if not perhaps more so, to offer than the so-called licensed professionals. Autistics such as Temple Grandin, John Elder Robison, Dawn Prince-Hughes, Naoki Higashida, Amanda Baggs, and Daniel Tammet have all helped us immensely to understand how the autistic mind works, and other younger-generation and not-so-famous autistics can give us the same insight to. It’s time to really listen.

9.       Let’s be careful of the “Autism” groups we invest in. More than we like to admit it, so-called Autism organizations really are acting for themselves. Autism Speaks is the only autism organization that could have no autistic members on their board, provide most of their money to executive expenses, genetic research, and advertising instead of autistic services, compare autism to a car wreck, being struck by lightning, or cancer, AIDS, and diabetes combined, support dangerous fringe movements such as the anti-vaccine movement and the Judge Rotenberg Center, fire a mother for claiming her autistic son wasn’t given on the job accommodations, block legislation to lessen the gap in autism services for girls and minorities, divide autistics using labels like “high-“ and “low-functioning,” and call themselves the voice of autism. This group is now sponsored and promoted by groups, celebrities, and businesses wanting to look like they are doing good such as Home Depot, Dollar General, Yoko Ono, Alpha Xi Delta, and others. Instead of being the grassroots organization most people associate it to be, co-founder Bob Wright used his media and business connections to reach all these groups, but it didn’t just happen in a vacuum. The public jumped on the bandwagon, donating and pledging tons of money to AS, which its sponsors took as good incentive.  By turning away from groups like these, we send their sponsors a message. Even liking them on Facebook should be avoided because it sends the message to do-gooders that Autism Speaks is doing good. On the smaller educational-youth culture level, students looking for publicity and fame slap the name “autism awareness” to step up campaigns to get elected to student positions using autistics low status for their own, when in fact their records will show that they haven’t done anything constructive for the autism community, and their campaigns will give know information apart from their popularity, while grassroot autistic student initiatives go undervalued as people think they’ve done their part. 

If you want to know what is going on with these, you can look at Facebook pages such as Boycott Autism Speaks and their website boycottautismspeaks.com, who will keep you up to date on their list of sponsors and actions you can take to mitigate their effect. My basic message: be aware of who you’re giving to and express your intentions in a constructive, well-thought out way, making autistic’s representatives accountable for their deeds. These steps may not get rid of all murders of autistics to come, but I guarantee they will honor the autistics who have gone and the loved ones we know who would have suffered the same thing in another parent’s hand. This is how the autistic world will remember you. Listen to me, and together we can solve the real puzzle of why courageous, honest, hard-working, decent individuals go underemployed, undertrained, underutilized, and undervalued.  We must act righteously, speak righteously, or be destroyed righteously.  Will you all take this challenge?  Will you be a champion?

Peace,

Ben Edwards