Why Autistics Don't Respond Well to the Puzzle Piece

You know that guy. She holds up a sign (to describe being autistic) saying, "I'm not a puzzle. I'm a person." with a red circle and line through a puzzle piece. He puts the word "Aspie" against a rainbow background for his cover photo. Basically, the point is, she does not like the puzzle piece being used as a symbol for autism. But where does this disdain come from. I'd like to point out that first of all, it isn't just the idea that we autistics have a missing piece to us that needs to be found, but the idea that we need to be put together for us to be whole when in fact we were never broken. We do need help sometimes, yes, but that help should be aimed at trying to fix how society and culture accommodate autistic needs on par with our neurotypical counterparts, and not us. A second point I want to make is that the puzzle in fact makes it look like the different pieces of the autistic communities are these separate, fixed categories that do not change over time, the idea of an autism spectrum, but instead of being a linear spectrum of black and white, autism is more of a cyclical spectrum and a continuum of every shade in the color wheel, that a person can cross from one side to the other, with no beginning and no end. Third, there is the idea that the autistic community needs to be "put" together, when, in fact, we already fit together not like a mismatched jigsaw puzzle, but like a rainbow. Rather than being some shattered mass, we are actually a singular matter that cannot be broken. And yes, the autism puzzle piece is a fairly familiar symbol that people associate with autism, just as the Chief's native American feather mascot is a fairly well-known symbol people associate with Native Americans, but like with the puzzle, that does not make this symbol a force for empowerment of its subjects rather than archaic, decontextualized, stereotypical way of thinking about outsiders. Rather than using the puzzle piece, we need to start using more empowering symbols for the continually maturing autistic youth population. Perhaps a rainbow infinite, or a rainbow septagram like the Autistic Self-Advocacy Network uses as their logo. I like the idea of a porcupine, which is small but can defend itself against larger predators without being aggressive, just as while the autistic community are a minority, we can together look after ourselves with the help of our allies. Truthfully, no one symbol can fully unite the autistic community, but I think choosing an alternative to the puzzle piece would in fact change the tide of autistics from a tone of fear and pity to a tone of empowerment, respect, and dignity.

 

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

Helping a Friend Come Out of the Autism Closet

For months I have wished to support a friend I have known for over two years

who may need to “come out of the autism closet,”

and who is also one of the kindest, bravest, strongest, most selfless human being,

more than any neurotypical person I have known;

someone whose selflessness I could only compare to some of my friends and allies at the Autistic Self-Advocacy Network or the Autism Women’s Network.

This may be a shock for her, and if she is upset with me for that, I understand.

Autistic people naturally feel low self-esteem and self-loathing, not because there is something wrong with autism,

but because of years of discrimination and inequality. 

If she is upset for me for breaking the news, I understand.

It is a lot to ask of anyone, and something you should be able to expect someone you trust not to hoist upon you.

Now when I say help her come out of the autism closet, let me explain what I mean:

I do not mean that I plan to gain recognition for letting her know she is diseased or needs to be fixed. 

I do not mean that I wish to have her read books by professionals who call her emotions or character flat or immature or treat her like some person who can’t “get it together.”

I do not mean to treat her as if she or her chances of getting where she was in life can be measured by some autistic who I consider to be a basket case.

I do not mean that I need to treat her like someone whose unique idiosyncrasies I need to constantly remind her of or patronize her for.

I do not mean treat her like she is a punching bag for me as a person who is against things like vaccines, Monsanto, lead poisoning, non-organic milk, abortion, or homosexuality.

I do not mean that she is someone I have to consistently point out or blame for her past struggles with going to Burger King, keeping up in school, following teacher’s instructions, or tolerating fluorescent lights.

I do not mean that I am going to strut around wearing autism awareness on my sleeve, making her feel like some complete freak show or charity case. 

I mean to treat her like someone who has the same right as any other person to have their individual needs to grow to her greatest potential met without debating over whether it is due to being diseased or treating her like I’m doing her a favor, no ifs, and, or buts, and no excuses, hidden agendas, whatsoever.

I mean to treat her as a member of a group of people who frequently don’t need to use small talk about weather or the price of gas to avoid topics I am too uncomfortable to honestly talk about,

who don’t need someone with a grocery cart to make more room between themselves and the sliding doors to get through when there’s ten times as much room in the gap on the other side,

as someone who doesn’t need to hear or see something at the next table and automatically assume it involves them,

who does not let themselves be judged by the presence or the state of her things,

who have the courage and tenacity to follow their dreams into fruition whatever the cost,

and probably included the cofounder of the Constitution, the United States, and one of the best Universities in the world and the smartest man who ever lived.

I mean to treat her as someone whose shortcomings are not more severe rather than more tolerated.

If anyone wants to help a friend come out of the autism closet, I suggest you follow my lead.

The Friend of Autism Pledge

I pledge:

-to never victimize, abuse, discriminate, or defame a person for having autism.

-to see the entire person when looking at an autistic person, rather than merely their disability.

-to be cautious of the picture today’s media paints of autistic individuals, knowing that they are often exaggerated or only half-true.

-to do thorough research on autism organizations before investing, donating, or working for them, such as learning how much of their money raised actually goes to autism services, how much autistic people are represented among them, and how they represent people with autism and help others do the same.

-to be aware of what autistic people may experience from other people due to their disability.

-to respect both the challenges and strengths that autistic people have on account of their disability and learn to see themselves from their own eyes.

-to honestly strive to never help an autistic person in a way that takes away their dignity.

-to help any person with I know or suspect might be autistic when I see them struggling with a situation with my own discretion.

-to recognize that if a person with autism is involved in an interpersonal or social crisis or accused of something that seems unlikely to remember that they often might have trouble presenting their side of the story and to help them if I can to bring it to the people in charge of dealing with these situations.

-that when I read anything or view anything mentioning autistic people, to pay attention to the tone that the author or maker on autistic people.

-to speak the honest, entire truth to the best of my knowledge whenever I talk about autism.

-to not turn a blind eye when I see an autistic person in a crisis involving other people due to misunderstanding on account of their disability and bring the issue to the attention of someone who would be an appropriate and likely candidate to help them.

-to not deliberately misrepresent an autistic person’s voice on their disability for my own or someone else’s reasons, whether they be selfish reasons or otherwise.

-to reevaluate any mistaken first impression I may have of an autistic person due to behavior of theirs as a result of their disability.

-to find a way stand up for myself when and if I am pressured by other people into doing something reprehensible to an autistic person on account of their disability.

-to be aware of the feelings of autistic people when responding to or talking about their disability and anything related to that.

-to value the opinions of autistic people on matters about themselves.

-to judge the ideas, actions, and other effects of autistic people by their inherent qualities, not the person’s disability.

-to show empathy and support for autistic people I encounter who are going through pain on account of things related to their disability.

-to talk about autistic individuals as with respect to their diversity, avoiding terms such as “suffers from autism,” or using broad generalizations or mentioning an autistic person’s disability when not relevant to the discussion.  I pledge to recognize that people with autism, like everyone else, seek food, water, physical support, free self-exploration, and love.

Please put your name in the comment section if you agree with these principles.

Why Non-Verbal Autistics are also Intelligent

                When many people hear “lower-functioning” autistic or “severely autistic” they think of someone who is not right in the head, like someone who is mentally insane with no control over their selves. They think that they are simply out of touch with reality. They believe they are not intelligent beings. They see them and see someone flapping their arms or spinning in circles. They recognize that they are people who cannot speak or take care of themselves, or if they speak through facilitated speech, they don’t consider that a valid form of communication. However, it is not necessarily that way. Many deaf people cannot speak and use sign language, expressing their thoughts, feelings and information in a different way just as people using facilitated speech do. Many non-autistic people with other disabilities cannot take care of themselves, such as the Nobel Prize-winning author and astrophysicist Stephen Hawking. Yet many non-autistic people assume “severely” autistic people to be out of touch with reality because they have repetitive behaviors such as hand-flapping or rocking that our society just doesn’t tolerate. They think “they don’t think like we do.” Yet simply because they don’t speak like you do doesn’t mean they don’t feel like you do. When someone hurts them, they feel pain. When someone loves them they feel joy. Just because they do not like to be hugged does not mean they do not wish to be loved by their mother, or brother, or father, or anyone else. It may be that their senses work differently as so many autistic people’s do to. Autistic people, according to autism expert Lisa Jo Rudy, do stimming behaviors, such as flapping arms, because it helps relieve stress and anxiety, just as biting one’s nails tends to do. The only difference is that biting one’s nails is much more acceptable. Some stimming can be addressed by helping relieve autistics anxiety, such as through medication. Several intelligent accomplished people with lower-functioning autism include Amanda Baggs, SueRubin, Birger Sellin, and Amy Sequenzia, who all communicate through facilitated speech. Yet when many neurotypicals hear this said, they think of some lower-functioning autistics who have no type-speech ability, whether real or presumed. Therefore they tend to think of them as unintelligent, but that is not automatically the case. These autistics have never had the chance to communicate what they know or can do in their minds because they do not have the communications skills to do so. According to psychiatrist Dr. Laurent Mottron, that IQ tests deem many non-verbal autistics unintelligent due to lack of speech. He says, “A blind person has a disability and needs accommodation, but you wouldn’t give a blind person a test based on vision.” Other’s may point out that for some lower-functioning autistics, they can’t understand what other people are saying, or can’t respond. But I know as an autistic that I and many other autistic people tend to think about things more visually and don’t respond so much to the word. One of the hallmarks of autism is lack of recognition of abstract concepts. For a lot of us, I know, when we see something like “keys,” we don’t think so much about “keys,” but that particular set of keys, so often times we have trouble understanding this visually. When I think of the keys to my dorm, I think “my keys.” When I think of the keys to get inside my house, I think “the keys to my house.” When I think of the keys to my mom’s car, I think “Mom’s car keys.” I do this to help me identify concrete things because that is how I think, yet it doesn’t mean I or any other autistics are less intelligent than you or any other intelligent people you may know. To learn more about how severely autistics learn, you might check out Ellen Notbahm’s Ten Things Every Child with Autism Wishes You Knew.

Five Reasons Autistic Adults Are Top Advocates for Children

The fact is this: we all want the best possible life and the same is something we would want for our children. For some children this may involve a para, speech therapy, individual counseling, and other services. Unfortunately, many children are not given what they need from society to develop to these heights the way others are and when that happens, parents feel they need to be involved and often people with the conditions of the children they advocate for our not heard. Many parents of autistic people and their supporters have said that autistic adults are not good advocates for autistic children. Some say they do not have the same issues facing them that children do, can’t speak for the diversity of everyone on the spectrum, that parents are better advocates as they care most about their children, or that children wouldn’t understand their own situation or that it won’t be relevant to their lives when they grow up. Yet if were honest, the clear picture is that parents have been advocating for their children with autistics being almost completely excluded in the process for over twenty years, and in all this time, very little has changed in the availability of autism services for the autism community as a whole. History, meanwhile, has shown that people affected most by a particular issue have the power to change their situation. Black Americans have succeeded very significantly in reversing segregation laws throughout America. Women have gained the rights to vote, own property, and hold careers, while people with disabilities have been given universal services and the Americans with Disability Act. Autistics similarly, can do the same thing for themselves, for they have five advantages that (most) parents with autism can make them a unique asset to (non-autistic) parents of autistic children.

Common Experiences

                What people ignore about autistic adults is that they have had similar experiences as children. They have experienced segregated education aversive therapies, bullying, etc. Many like me can remember what they had trouble with in elementary school, where adequate supports were not available to me. I remember better than anyone what teachers and paras did, or tried to do for me, because I was there, and I like many other autistic adults, who have for some reason or another, been in segregated education for the reasons that we were unable to keep up with our non-autistic peers on account of our different abilities. I have heard parents comment, through social media and other forms, on how autistic people from autistic-run organizations such as the Autistic Self-Advocacy Network, the Autism Women’s Network, the Global and Regional Asperger Syndrome Partnership, and the Aspergers Association of New England, have been instrumental in giving parents information on autism that they are able to use to help their children’s progress and argue with legislators for adequate supports for their children.

Common Needs

                As an autistic person, I know what is stressful for me and what makes certain tasks difficult to perform. As autistic people, we know that being socially active can be difficult because the planning can be stressful, whereas most neurotypical people I know would simply assume I don’t want to get out and be social. We can also stress over changes in routine because we like predictability, yet most people I know used to say autistic people were simply rigid because they have not heard things from an autistic person’s point of view, but rather professionals, who may be honest and trained, but do not experience life from the point of view of someone who is wired as we are. This has changed somewhat, but a lot of society still has yet to accept our perspectives. Autistics know on some level what distracts or unnerves them, but often times do not know how to communicate it to others.

Common Future Projections

                Disproportionate numbers of autistic adults experience underemployment (or unemployment), divorce, substance abuse, crime, and poverty, all of which could be prevented with early services and interventions. Autistic people are the ones most affected by discrimination, and autistic adults, many with aging parents and with their understanding of their unique needs and condition, are aware of what future struggles today’s autistic children could experience with the right supports. Many have learned to compensate for their differences and have unique perspectives on what autistic children can do and can be taught to help live the best possible live

Common Social Networks

                Autistic people are commonly parents of autistic children. Autistic adults such as John Elder Robison, Sharon daVanport, Jennifer O’Toole, and Bec Oakley have autistic children. Several of them are authors, bloggers, executives, secretaries, and treasurers for material on and resources providing information and services for people with autism. They have the same interest in their children as one would hope for parents to have and the same insider’s view of autism that autistic adults, with or without autistic children have.

Common Identity

                Frequently used rhetoric by autistic self-advocates is that one wouldn’t trust a civil rights organization run entirely by white people or a feminist organization run entirely by men. Autistic people like me don’t just want to be tolerated but celebrated to for our unique contributions to society, such as the inventions of Thomas Edison or the discoveries of Albert Einstein, both of whom were suspected to have autism. Autism is more than just a medical condition for us, but an essential part of who we are just like being Jewish or Greek. We do have to get services from our legislators by pity, which is something that degrades and dehumanizes us all. We understand the need for supports because autism is part of who we are, and it is not just about struggles but also strengths, which autistic people have in fact, been telling the public about for years. Autism supports, just like accommodations for people with learning disabilities, help people like me work to the best of our abilities, not our disabilities, so we can contribute to society in the unique ways that others have before, something that autistics like me have always identified with, what's more making autistic adults great leaders in advocating for autistic children.

What We Mean When We Say We Are Our Best Voice

The Seven Deadly Sins in the World of Autism

There is often talk about the fact that autistic people are the best advocates for themselves. However, some people seem to generate some confusion about what that actually means. What "autistic people are the best advocates for themselves" does not mean:

-Having a token autistic spokesperson.
-Listening to one person with autism before deciding to speak for all of them
-Speaking on behalf of all people with autism or any person with autism no matter how well you know them
-Taking what an autistic person says to try and justify your own agenda on autism
-Using a person with autism to advance the agenda of a predominantly non-autistic group
-Saying your view of the issue (e.g. cure all people with autism) instead of an autistic person's view (give me the services I need to thrive in the world) because you believe you and he are saying the same thing
-Simply quoting someone with autism when you try to speak for all autistic people

What real autistic representation means is: having autistic people be the predominant group speaking their own entire platform exactly as it is for themselves without it being used for one person or groups advantage directly to the people they want to communicate with for their own purposes in whatever venues they choose to express themselves through. Anything else, no matter how well-intended, is an affront to our right to speak for ourselves.