Autism Awareness is Not Enough: Here’s How to Change the World

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"The Structure of Flame" by Jessy Park

"The Structure of Flame" by autistic artist Jessica Park. Courtesy of Pure Vision Arts: http://purevisionarts.org

In 2007, the United Nations passed a resolution declaring April 2 World Autism Awareness Day — an annual opportunity for fundraising organizations to bring public attention to a condition considered rare just a decade ago.

Now society is coming to understand that the broad spectrum of autism — as it’s currently defined, which will change next year with the publication of the DSM-5 – isn’t rare after all. In fact, “autism is common,” said Thomas Frieden, Director of the U.S. Centers for Disease Control and Prevention, last week in a press conference. The subject of the conference was a new CDC report, based on 2008 data, that raised the official estimate of autism prevalence among children in the United States from 1 in 110 to 1 in 88.

The CDC’s announcement brought out the usual range of conflicting responses and disputes about causes and cures. Mark Roithmayr, president of the fundraising organization Autism Speaks, immediately branded the report proof of an “epidemic,” though Frieden and other experts were careful to point out that the apparent increase was likely “the result of better detection,” rather than a true spike in the population of autistic kids.

That theory is bolstered by two recent studies in South Korea and the United Kingdom, which suggest that autism prevalence has always been much higher than the estimated 1-in-10,000 when the diagnostic criteria were much more narrow and exclusionary. What’s changed now is that — in addition to the radical broadening of the spectrum following the introduction of diagnostic subcategories like Asperger’s syndrome and PDD-NOS – clinicians, teachers, and parents have gotten much better at recognizing autism, particularly in very young children. That’s actually good news, because by identifying a child early, parents can engage the supports, therapies, modes of learning, and assistive technology that can help a kid express the fullest potential of their unique atypical mind.

No matter where you stand on the rising numbers, there is one undeniably shocking thing about them. Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes.

On March 6, a handsome, friendly, 22-year-old athlete in Sunnyvale, California named George Hodgins was shot by his mother Elizabeth, who then turned the gun on herself. The bodies were found by George’s father Lester, a Bay Area park ranger. The horrific crime became a cause célèbre in the media and the special-needs blogosphere — one that focused primarily on speculation about the kind of suffering that could have driven a mother to such a desperate act. George was posthumously diagnosed in the news as “low functioning and high maintenance,” and sometimes his name wasn’t even mentioned in the ensuing discussion, as if the young man was a bystander at his own murder.

Vigil for George Hodgins

Vigil for George Hodgins, Sunnyvale CA

In response, an autistic self-advocate in California named Zoe Gross organized a vigil on March 16 for disabled victims of family violence like George. Holding candles aloft under a tent pitched at Sunnyvale City Hall, autistic men and women of all ages — along with parents and allies from the disability-rights community — read the names of those who had been killed, with a poignant eulogy for the disabled victims of the Nazi eugenics campaigns that paved the way for the Holocaust. As drizzling rain fell around the warmly-lit tent, George’s former teachers at the Morgan Autism Center shared vivid memories of an energetic boy who loved listening to music and getting in the pool to swim. Instead of painting him as little more than a source of anguish and grief for his mother, who was struggling with her own psychological issues, they recalled him as a sweet, cheerful, engaged, and enthusiastic student who used assistive technology to communicate.

For autistic activists like Gross and Paula C. Durbin-Westby, a professional book indexer and choirmaster at her Episcopal church in Virginia, Autism Awareness Day is not a cause for celebration. In their eyes, the dire messaging designed to frighten wealthy donors into opening their wallets every April 2 — such as the infamous 2009 ”I Am Autism” video, which framed the condition as a terminator of marriages that works “faster than pediatric AIDS, cancer, and diabetes combined” – reinforces dangerous negative stereotypes and increases the stigma faced by autistic adults, most of whom don’t wake up in the morning yearning for a cure or wishing that their peers on the spectrum had never been born. Instead, members of groups like the Autistic Self-Advocacy Network look forward to an era when their community no longer faces violence at home or discrimination in the workplace, in housing, in education, in the legal system, in health care, and in society at large.

Two years ago, Durbin-Westby proposed that autistic people and their families and friends recast April 2 as an occasion for promoting acceptance and understanding rather than vague “awareness,” and reclaim the day as an annual opportunity to celebrate their community’s diversity and vitality. ”I started Autism Acceptance Day as a corrective to the ubiquitous negative images we see every April,” she recalls. “The first World Autism Awareness Day referred to autism as an ‘equal destroyer.’ From videos that talk about autism as some sort of soul-sucking demonic persona, to 150 empty strollers signifying that autism has robbed parents of their toddlers, navigating April for many Autistics has been like walking through a field of (stroller-shaped) land mines. No more! Autism Acceptance Day takes back April and puts it where it belongs — into the hands of Autistic people, supportive family members, friends, and communities.”

Durbin-Westby’s notion of rebranding April 2 in a more positive and proactive light is catching on with local autism advocacy groups worldwide. The Autism Society of Northern Virginia recently declared April to be Autism Acceptance Month, and other groups are getting onboard via social networks like Facebook and Twitter.

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  – now, starting today?

That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents to read after their son or daughter’s diagnosis.

The ideas generously offered here — from outlines for education and public-policy reform, to calls for more 24-hour businesses and innovative assistive technology, to persuasive arguments from the trenches for transformations of attitude — are a road map to a more equitable neurodiverse society that will help all 88 out of 88 kids to maximize their creative potential.

Lydia Brown

Lydia Brown

Lydia Brown is an Autistic student at Georgetown University who interns for the Autistic Self Advocacy Network. She blogs at Autistic Hoya.

1. Accept us. Autism is a part of who we are. As sure as skin color or sexual orientation, we cannot change being Autistic. Acceptance starts by understanding that we are not broken, defective, or diseased. We do not need to be fixed or cured. There is nothing wrong with us. Yes, autism is a disability, and yes, some Autistic people are very severely disabled. Accepting our autism does not mean ignoring or denying disability; it means accepting us for who we are, as we are.

2. Respect us. We are people, fellow human beings. We deserve to be treated with the same respect afforded to our non-Autistic peers. Respect starts by understanding that we are full and complete human beings, with individual personalities, life experiences, goals, and preferences. We deserve an education, access to communication, and a place in society as we become adults. We deserve to live without fear of being abused, manipulated, or hurt. We are not less than.

3. Support us. Because we are disabled in varying degrees and in multiple ways, we need support, services, and accommodations to successfully navigate a world not made for us. Supporting us starts by understanding that we are usually the people who can best define what types of support and services we need, especially once we become adults. Some of us may need services throughout school and or higher education. Some of us need help with seeking and keeping employment. Some of us need help with living independently or semi-independently, or with activities of daily life. Without appropriate supports, we will not have equal access and opportunity.

4. Include us. We deserve equal access and opportunity throughout the community and throughout our lifespans. Inclusion starts by understanding that we are part of the community and deserve to be included in it. As children, we may not be ready immediately for full inclusion, but full inclusion should be the ultimate goal for every Autistic child. Full integration into the community means living outside institutional or segregated settings and working outside a segregated setting. If we need accommodations or support to fully participate in the community, then provide those accommodations. We need to belong.

5. Listen to us. Too many conversations about us and issues that affect our lives take place without any of us present. Listening starts by recognizing that we have valid, legitimate, and important things to say about our lives and about the issues that affect us collectively. Like any group of people, we are not homogeneous in opinion or ideology, and this diversity is part of the Autistic community. Yet we must be included in any conversation about us, because decisions made by policymakers, school administrators, and grant reviewers often impact our daily lives and our future outlook. We can speak (or write or sign or type) for ourselves, and it’s time to listen.

Shannon and Leo Rosa

Shannon and Leo Rosa

Shannon Des Roches Rosa is the mother of an autistic son and an editor of Thinking Person’s Guide to Autism. She blogs at Squidalicious.

1. Watch movies about real autistic people. We need to uproot and replace the Rain Man as a cultural stereotype. Most autistics are not savants — and most autistics are not like most other autistics. I recommend Todd Drezner’s Loving Lampposts as the autism movie that everyone should see; it showcases the wide-ranging and complex abilities of people on the autism spectrum.

2. Be a role model of autism understanding in everyday life. Autistic behaviors like flapping and humming may not make sense to strangers, but they almost always have a function for an autistic person. If you see a person like my son behaving quirkily in a public place, it’s OK to smile and nod — especially to model that understanding and acceptance for kids. (We will move on if our behaviors become disruptive!)

3. Welcome us. Many autistics and autism families feel isolated, even within their extended families and immediate communities. If you aren’t sure what we need or how to include us, ask! We would so much rather be asked — even if we need special arrangements, even if we might have to leave early, even if we have to say no — than never get included at all.

4. Seek autism-friendly autism education resources. When looking for autism education resources, ask yourself: does this agency, book, or website support and respect autistic people and their families? If the answer is “no,” then go elsewhere — no matter how well-established, funded, reviewed, or popular the resource is. I direct people to The Autistic Self-Advocacy Network, Rethinking Autism, Wrong Planet, and Thinking Person’s Guide to Autism as starting points.

5. Demand support for autistic adults transitioning out of school. Autistic people, like anyone else, deserve the best possible quality of life — yet there is no comprehensive infrastructure to support their transition out of school and into the real world; not at my home state of California’s level, not at the federal level. The transition can be especially harrowing for autistics who need significant day-to-day support. My son and his peers deserve better.

Carol and Arren Greenburg

Carol and Arren Greenburg

Carol Greenburg is an autistic self-advocate, a consultant for families of kids with special needs, and mother of an autistic son.

1. Respectful autism awareness cards widely available commercially so I don’t have to keep reinventing this wheel for the material I hand people introducing my son or myself. Nothing long-winded or rude, but a teaching moment should not have to start with an apology for autistic behavior.

2. Whatever your own neurostatus, put yourself on a 30-second pause before you react to somebody whose public behavior you find off-putting.

3. Require autism awareness training with the input of autistic self-advocates for every single educator in the US, not just special Ed teachers. I’ve heard this is done in Japan, why can’t other countries follow suit?

4. More retailer sensitivity toward customers with sensory issues. It would be nice if the staff in restaurants and stores would show greater willingness to dim lights and turn down music. Sensory seekers like my son can find loud environments and control their personal music volume. Sensory avoiders like me can’t go inside many public venues.

Paula C. Durbin-Westby

Paula C. Durbin-Westby, founder of Autism Acceptance Day

Paula C. Durbin-Westby is an autistic self-advocate who blogs at paulacdurbinwestbyautisticblog.blogspot.com.

1. Think of autism as a disability and a difference, not a depersonalized “disorder.” When a person has a disability, that person is still a human being. That person with a disability has a body, a mind, interests, dreams, and goals, even if you can’t discern them. Only people have rights under the Developmental Disabilities Act and other protective legislation.  A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner (including questionable goals, treatments, or interventions) that researchers and others see fit.  A person with a disability has the right to be who they are and to be accepted for who they are, without the need for a “fix” or “cure.”

2. Realize that not all behavior is intentional communication. What we call “behavior” is what can be observed. Many behaviors cannot be observed; they are internal, and are as important as any outward activity. Do not assume you know the reason for or function of a behavior, especially if you are making the assumption based on why you think a non-autistic person would be doing that same behavior. Behaviors are tied to ways of navigating the world. Where behaviors are simply “odd” or different, there is no need to expend energy on doing anything other than supporting the person and working to end discrimination based on harmless behavioral characteristics. Education should focus on the strengths of Autistic people, not on making us “indistinguishable from our peers.” By the way, our peers are other Autistic people.

3. Augmentative and alternative communication for all! Communication takes more than one person. A communication device is not communication. Research priorities and dollars should refocus on communication needs. A variety of communication systems may be needed, even for a single individual, depending on circumstances. AAC can benefit Autistics who do have speaking capability as well as those who do not use speech to communicate.

4. Eliminate the use of restraints and aversives.  Not every “challenging behavior” needs a take-down response. Consult Autistic adults, who have insights into strategies that can be used to replace the dangerous and trauma-inducing use of these aggressive techniques. Do not automatically restrain people who are self-injuring — use pillows or other soft objects to deflect self-injurious movements. Learn de-escalation techniques. Do not automatically restrain someone who is kicking a piece of furniture. Let them calm down. Help them calm down. Find something for them to kick that is cheaper or less concerning. Restraint is meeting aggression with aggression. What does it teach? Think about that.

5. Teach children to respect and accept differences, including disability. This suggestion has ramifications far beyond the disability world. A general acceptance of others who are different from us is a necessity in a world that is becoming more globalized. Disabilities are no exception. Pretending to have a disability for a day is not enough. Children without disabilities need to meet and engage with those who have disabilities, with someone acting as a facilitator of those encounters where necessary. Children (and all people) need to learn that people with disabilities are both very different from and very similar to them. Find common ground as well as nurturing and appreciating differences, even differences that are considered “difficult.”

Emily Willingham

Emily Willingham

Emily Willingham is a writer, scientist, partner, and parent. She manages the Double X Science site and blogs at The Biology Files.

“Life is easy to chronicle but bewildering to practice.” — E.M. Forster, novelist

1. Practice perspective taking. It’s ironic that autistic people are expected to have trouble with insight into others when so many people have trouble with insight into autistics. Everyone should try on the other person’s shoes and walk around in them for a while.

2. Practice not judging. It’s hard not to judge. We make countless judgments big and small, every day. But before you judge another person, remind yourself that behavior is communication. Rather than judging, ask yourself, “What is that person’s behavior saying that will help me understand better?”

3. Practice compassion. It’s a corollary to the first two, and it’s not easy. That’s why it takes practice.

4. Practice being yourself. The best possible way to understand how hard anyone’s personal battles can be is to understand how much you fight yours every day. What are your obstacles to just being You? Everyone has them. Behind every social facade is the deeper reality of who we are as individuals. If you find yourself in there and accept that person, you may find it more natural to accept the deeper reality of others, as well.

5. Practice courage. It takes courage to do any of these things. Being the one who takes perspective, works not to judge, practices compassion, and embraces personal individuality is a courageous act that can separate you from social norms and make you stand out, sometimes uncomfortably. Autistic people do it every day, purposely or otherwise. You can, too. Bring your courage, and acceptance easily follows.

Kassiane Sibley

Kassiane Sibley

Kassiane Sibley is an autistic activist and gymnastics coach. She blogs at Time to Listen.

1. Stop killing us, and stop glorifying our killers. Every time an autistic person is murdered, people fall over themselves to feel sorry for the killer. That’s pretty terrifying if, like me, you are actually autistic right this minute. Stop. You are not supposed to side with killers, empathy does not work that way.

2. 24-hour EVERYTHING. A lot of us hate crowds. A lot of us are stuck with mass transit. A lot of us are just not daytime people. If things were open 24 hours, not only would we create jobs, but those of us who are at our worst during normal business hours would have the energy to get way more done for ourselves.

3. Turn the volume and the lights down. Just in general. Nothing needs to be as loud or as bright as it is. Save some energy — and save everyone’s processing energy, not just mine.

4. Listen and look more for substance than style. Sometimes it’s hard enough to make what we mean clear, especially if we struggle with language. Please take what I say as what I meant, rather than deciding that I am mean or rude or inconsiderate or whatever for not wrapping it in bubble wrap first. What I said is far more important to comprehension than how I said it — I promise.

5. Tolerance and awareness are nowhere near enough. Teach acceptance, early and often. Little kids take their cues from the adults around them, mostly. Teach them, from a very young age, that some people are not like them and this is AWESOME. Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.” That rocks. Make that the norm.

Jennifer Myers and her son

Jennifer Myers and her son Jack

Jennifer Byde Myers is co-founder of Thinking Person’s Guide to Autism and director of the Myers-Rosa Foundation.

1. Change the word “talk” to “communicate.” When my son was younger, therapists just wanted him to talk. They still call it speech therapy. Talking is overrated. We don’t care if he “talks” we want him to be able to communicate his needs effectively so he can lead the life he wants to live, not the one we think he wants to live.

2. Invest in education. Train the aides that work with people with autism. Fund the supports that are federally mandated in the schools yet remain unfunded by the feds. And invest in the education of every American so we can have a future with people who are knowledgeable and able to teach, provide professional services and lead our country in a way that encourages inclusion and equality.

3. Stop electing bigots. If a political entity is willing to say that gays, or single mothers, or people of color are less valuable to society, or are less worthy to receive respect and fair treatment under the law, how likely is it that a minority that is as diverse as the autism community will receive respect and needed services. Vote for the changes you want to see.

4. Put fences around parks, or at least part of the park. It’s not that I am too lazy to keep an eye on my son, but really, if I mess up for even a minute, he could end up as a hood ornament. I do not take him to parks that don’t have at least three sides blocked from traffic, and consequently he has missed out on a lot of parks. Recreation should be enjoyable for everyone on the outing, and safety is paramount.

5. Create an Autism Corps, like the Peace Corps. Train a generation of young men and women to work with autistics who need support with daily living skills like grocery shopping, or getting to work. Give parents and caretakers respite by providing free or very reduced rate childcare. A trained support network could provide an infrastructure for autistics to lead more independent and fulfilling lives.

Stephen Shore and Leo Rosa

Stephen Shore and Leo Rosa

Stephen Shore is an autistic self advocate, author of Beyond the Wall and Understanding Autism for Dummies, and professor at Adelphi University.

1. Move the conversation from tolerance and acceptance of individuals on the autism spectrum to understanding and appreciation. (“Tolerance and acceptance” give a sense of putting up with something, whereas “understanding and appreciation” suggests valuing the contributions that individuals with autism bring to humanity.)

2. Know that if everyone were the same, the world would be a very boring place.

3. Understand that often the most important thing to a person on the autism spectrum about employment is making sure the job is done right. (Suggests that quality of workmanship is often the primary motivator of completing a task.)

4. Recognize that autism is. (Autism is neither good nor bad. It just exists, and it’s up to us to make as much good from the condition as possible).

5. Empower others to lead fulfilling and productive lives. That’s the greatest gift we can give to an individual on the autism spectrum, and to the rest of humanity (That way, the individual on the autism spectrum will be fulfilled and productive, and society will receive the great benefits of that person reaching their highest potential.)

Garret Westlake

Garret Westlake

Garret Westlake is the Director of the Disability Resource Center at Arizona State University’s Polytechnic campus.  He is also the CEO and Founder of STEM Force Technology, a company that provides coaching and employment services for individuals on the autism spectrum.

1.  Hire someone with autism.  You don’t need to look very far to find exceptional people with exceptional talents.

2.  Learn from someone with autism. You might learn a new skill, a joke, or a fact, but you will definitely gain perspective, understanding, and appreciation for how someone else sees the world.

3.  Abolish average education.  Why do we strive for broad mediocrity in education? Encourage outliers. Create access and accountability in education for student strengths — not weaknesses.

4. Understand autism as diversity. If we still struggle with issues of race, gender, and sexual identity, where are we with accepting disability?  Disability is diversity too.

5.  Laugh.  Everyone needs more of it. We can all do it together.

Ari Ne'eman

Ari Ne'eman

Ari Ne’eman is the President and co-founder of the Autistic Self Advocacy Network. He currently serves as Policy & Program Evaluation Committee Chair for the National Council on Disability.

It has often been said that the United States lacks a national disability policy — instead, we have dozens of different disability policies, each developed for a different part and level of government and often conflicting with each other. The story of US disability policy is one of the slow development of different laws, programs and infrastructures, many of which still operate based on outdated and obsolete assumptions regarding the degree to which disabled Americans could be included in society. This reality significantly hinders the full realization of the civil and human rights of Autistic people and other people with disabilities. What would a national disability policy look like if it was aligned with the goals of the Americans with Disabilities Act?

1. Values-Based Policymaking: Research and science have always played a large role in disability policymaking, in large part due to a history of disability being viewed mainly as a public health issue. But while science can tell us much about how the world is, it falls to values to tell us how the world should be. When assessing the quality of different forms of service-provision, we should think about both efficacy and ethics.

2. De-Medicalization: Over the course of the last forty years, the de-institutionalization movement has made tremendous progress in closing large residential facilities which segregated disabled people from society, shifting funds into more individualized supports in  local communities. Although this is an important first step, ensuring that people with disabilities have access to choice and self-determination requires more than just moving from larger to smaller housing. It also requires a real sea change in how we approach disability services. We require a shift from the expectations of institutional life — which presumes a hospital environment, in which medical experts make decisions about patients — to the expectations of home life — where staff providing support to a person with a disability are working for the person and the pursuit of their goals and judgement.

3. Equal Protection of Law: Many of the worst injustices faced by people with disabilities would be considered illegal and the source of considerable public outrage were they to occur to a non-disabled person. Federal law allows for people with disabilities to be paid less than minimum wage. States with bans on corporal punishment nonetheless allow the use of “aversive interventions” — the inflicting of pain as a means of behavior modification for children and adults with disabilities — despite the fact that the two are indistinguishable from each other. When disabled people are killed by family members and caregivers, public sympathy is often with the killer, who will frequently receive a more lenient sentence than if they had murdered a non-disabled person. Only when labor laws, protections from abuse and torture, and other relevant legal rights are applied equally for people with and without disabilities will we move forward as a society.

4. High Expectations: Much of our disability policy is predicated on low expectations that can often become self-fulfilling prophecies. Students with disabilities who take the alternative assessment rather than the standard means of assessing student achievement are more likely to be segregated from the general education classroom, less likely to have received any literacy instruction, and frequently lack access to Augmentative and Alternative Communication supports that could help them better perform at their full potential. People on Social Security’s two disability income support programs (Supplemental Security Income and Social Security Disability Insurance) face a maze of bureaucratic regulations that often discourage or prevent attempts to return to the workforce or to save in order to develop assets. Changing the expectations our society has for people with disabilities was one of the main goals of the ADA. Now it is past time for the rest of our country’s disability policy infrastructure to catch up.

5. Disability as Diversity: There is a long history of both the public and private sector working to try to encourage diversity in education, the workforce and elsewhere in society. Unfortunately, people with disabilities are often excluded from these efforts. For example, much of the recent push on the part of the federal government to close disparities in health care outcomes on the basis of race, ethnicity, gender and sexual orientation excluded people with disabilities as yet another important under-served population. Many private sector affirmative action programs forget to or deliberately do not include disability, a failure that exists in higher education as well. Fortunately, some progress has been made in this sector, with the Obama Administration making the employment of people with disabilities within the federal workforce and among federal contractors a major priority. More work needs to be done to ensure that whenever we talk about addressing the needs of underserved populations or creating more diverse classrooms and workplaces, people with disabilities are not left out.

Liz Ditz and her grandson

Liz Ditz and her grandson

Liz Ditz blogs at I Speak of Dreams.

1. Universal acceptance of the idea that “human abilities are a constellation, not a linear spectrum.” Universal acceptance of the big idea that different brains come with different strengths and weaknesses, and societies need all kinds of minds to be robustly healthy.  This is big-picture neurodiversity, embracing not only autism, but ADHD and other neurodivergencies now called dyslexia, dyscalculia, and so on.

2. Radical restructuring of the American pre-K-12 model along these lines: Make early childhood education a highly-valued, trained, and compensated profession (right now, early-childhood teachers make poverty wages and have little training in elements of recognizing neurodiversity and providing appropriate supports to kids who struggle.)

3. Make high-quality universal early education available to all, including specialized services and remediation, without having to qualify by testing. We know that there are areas in which autistic people (and other neurodiverse people) struggle, and these areas are often evident in very early childhood.  But getting help now requires going through testing, evaluation, and qualifying and continuing to qualify for “services.”  If we had a highly trained cadre of early childhood educators, some if not all of the helpful services would be available as a matter of course to students who needed them.

4. Make pre-K-8 teaching a highly valued, highly trained, and highly compensated profession, adopting some proven elements of the Finnish model:

All teachers have undergraduate degrees in a field of study other than education.

All teachers have graduate degrees in education.

Entry into teacher-training graduate programs is highly selective.

Teachers have several years of post-graduate mentoring with gradually increasing responsibility (as do physicians, with the progression of medical school > internship > residency before independent practice model.) As a result, teaching is a high-status and high-prestige profession, with a great deal of expertise gathered over years, and with continued professional development over time.

5. Eliminate the “wait to fail” and medical model for children experiencing school difficulties. Step in when pupils start to lag behind.

“A factor contributing to the success of the Finnish system is the use of early and powerful intervention when a student begins to fall behind. Frequent diagnostic testing (‘formative testing’) at early stages reveals students who need extra help, and the Finns provide it intensively, with one special-needs teacher for every seven special-needs students in some schools. The McKinsey report points out that, in Finland, about a third of students receive remediation.” — Patrick Basset, “The Finnish Model”

6. Replace the “medical model” with the “diversity model.” It turns out that all kids can learn, given good teachers, early and intensive intervention, and a supportive school and peer culture. U.S. schools need to move from a medical model (learning disabilities) to a diversity model (learning differences), and re-orient themselves to identify, value, and use a student’s strengths as “workarounds” and palliatives to weaknesses.

7. Focus on equity rather than competition.

“Since the 1980s, the main driver of Finnish education policy has been the idea that every child should have exactly the same opportunity to learn, regardless of family background, income, or geographic location. Education has been seen first and foremost not as a way to produce star performers, but as an instrument to even out social inequality. In the Finnish view, as Sahlberg describes it, this means that schools should be healthy, safe environments for children. This starts with the basics. Finland offers all pupils free school meals, easy access to health care, psychological counseling, and individualized student guidance.” — Anu Partanenen, What Americans Keep Ignoring about Finland’s School Success, The Atlantic.

Todd and Sam Drezner

Todd and Sam Drezner

Todd Drezner is the father of an autistic son and director of Loving Lampposts: Living Autistic.

1. Anyone who asks “Where are all of the autistic adults?” must make a donation to the Autistic Self Advocacy Network.

2. We should no longer describe autistic people as “high functioning” or “low functioning.” Supreme Court Justice Potter Stewart famously defined pornography by saying “I know it when I see it,” and many of us feel the same way about defining “low functioning” and “high functioning.”  But our instant definitions don’t hold up under scrutiny.

3. Every major autism organization in the country (and every minor one for that matter) should have at least three autistic people on its board.

4. Parents who receive a new autism diagnosis for their child should immediately be issued a copy of Jim Sinclair’s “Don’t Mourn For Us and a list of resources to help them.  These should include websites like The Thinking Person’s Guide to Autism, blogs by autistic adults such as Autistic Hoya, and blogs by parents of autistic children like We Go With Him and Mom-NOS.  Should there be additional room on the list, it might also include a few resources to avoid.

5. Fox should immediately cancel “Touch.”

Nick Walker Sensei

Nick Walker Sensei

Nick Walker is an autistic educator, author, psychologist, activist, parent, and martial arts master. He holds an M.A. in Somatic Psychology from California Institute of Integral Studies, where he currently teaches in the Interdisciplinary Studies program. He is founder and senior instructor of Aikido Shusekai, an aikido dojo in Berkeley, California.

1. De-pathologize autism and autistic people. Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that it’s a disability that can require accommodations. Stop worrying about the latest changes to the DSM criteria, and just remove autism from the DSM entirely, like homosexuality was rightly removed years ago.

2. Use the language of diversity, not the language of pathology. Language matters. The language that is used in talking about autism and autistic people affects how autistic people are perceived — by themselves, by others, by society – and thus how they are treated. In an autistic-friendly world, anyone speaking of autistics would observe the same linguistic conventions that civilized, non-bigoted people observe when speaking of any other social minority group (e.g., African-Americans or gays). You wouldn’t say that an African-American “has negroism” or “suffers from blackness,” so don’t speak of an autistic person as “having” or “suffering from” autism.

3. Forget “normal.” Recognize that when it comes to human diversity — including the diversity of minds — “normal” is a highly subjective, culturally-constructed fiction. Recognize that there is no “normal” mind, and that conformity to the local conception of “normal” is in no way synonymous with health, well-being, or personal fulfillment – and is, in fact, often in direct conflict with those things. A healthy, thriving autistic person looks very different from a healthy, thriving non-autistic person. In nurturing the development of autistic individuals, the goal of parents, educators, therapists, etc. should be to produce healthy, thriving, autistic people, rather than autistic people trained to stifle their true selves in order to pass as “normal.”

4. Equal protection under the law, broadly interpreted and strongly enforced. Recognize autistic people as a social minority group, grant them the same legal protections that are (or should be) extended to ethnic minorities, interpret those protections as broadly as possible, and rigorously enforce them. When an autistic person is abused for acting autistic, prosecute it as a hate crime. Anytime an ABA “therapist” grabs an autistic child’s hands to stop her from stimming, prosecute it as criminal assault and as a hate crime. Individuals and organizations that speak of autism as a “disease” or “tragedy,” and talk of “curing” it, should be prosecuted for hate speech and incitement to violence, just as if they were advocating a “Final Solution to the Jewish Problem.” Anyone involved in seeking or implementing prenatal tests for autism or any other sort of prenatal prevention of autism should be prosecuted in international court under the Genocide Convention, which classifies as genocide any attempt to prevent births within a targeted group.

5. Work for global peace and economic justice. Many non-autistic parents worry that if they don’t subject their autistic kids to extensive (and expensive) “treatments” to bring them closer to “normal,” the kids will never be able to take care of their own basic survival needs, and will end up in awful institutions or on the streets. This is an entirely legitimate concern. But the reason it’s a concern is that we live in a world in which the forces of global capitalism have replaced the true spirit of community with an artificial sense of competition, isolation, and “every man for himself,” and in which all but the most wealthy are kept in a constant condition of anxiety and fear of scarcity. This is not the natural state of humanity, and not the way the world has to be. Every disabled person in the U.S. could be supported for life on a fraction of the money that our government spends killing people in the Middle East each year – to say nothing of the funds that would be available if we made giant corporations and the wealthiest 1% of Americans pay their fair share of taxes. Instead of working so hard to change autistic people in the name of helping them survive in a cruel world, why not work to make the world less cruel?

Julia Bascom

Julia Bascom

Julia Bascom is an autistic self-advocate who blogs at Just Stimming.

Obviously a lot more than these five things needs to be changed — but without these five, the rest won’t matter.

1. Stop killing us.

2. Stop abusing us.

3. Start recognizing our communication.

4. Slow down. Value us.

5. Stop killing us.

Rachel Cohen Rottenberg

Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg is a wife, mother, writer, and artist on the autism spectrum. She blogs at Journeys with Autism and edits and publishes the site Autism and Empathy.

1. Understand that there are many ways to communicate, and that one is not better than another. I can’t read nonverbal signals. I have auditory delays. I need a little extra time to find the words. Sometimes, my words go up over mountains and down through valleys before I know that I’ve made myself clear. It’s not going to change, and my inability to change should not mean social exclusion. Please remember that I have the same need for connection and inclusion as you do.

2. Slow down when you speak. I need time to process what I hear and to come up with a proper response. Just as an able-bodied person should give space to someone attempting to board a bus in a wheelchair, or a hearing person should take a moment to write back and forth with a Deaf person ordering food in a restaurant, so a non-autistic person should take a moment to listen to and to communicate with an autistic person.

3. Remember that talking with a disabled person is not an heroic act. There is absolutely nothing required in the way of superhuman patience to communicate with a person with a disability, and stopping to listen to someone with atypical communication, far from being a charitable act, is an act of bringing a fellow human being into human community. Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse.

4. Go outside your comfort zone. However uncomfortable, awkward, or annoying it may feel to deal with someone who puts out unexpected nonverbal signals (or none at all), or who speaks in an atypical manner (or not at all), it doesn’t hold a candle to how excruciating it is to go through the world isolated because people just feel too uncomfortable, awkward, or annoyed to deal with you. The discomfort, awkwardness, and annoyance of able-bodied people may only last a minute, or a half hour, or an hour, and then they go back to their regularly scheduled lives. Please imagine how it feels to keep meeting up with a world full of people who turn away, every day, because their discomfort trumps our longing.

5. Put yourself in our shoes. It is vital that able-bodied people consider how soul-wearying it is to keep trying until one finds those people who simply accept the awkwardness — my awkwardness, their awkwardness, our awkwardness — and make a connection. It hurts the heart to keep going out and trying. Ask yourself: What is keeping you from extending a word, a listen, a desire for connection to us? And how does your failure to use your social skills to bring other human beings into community translate into a social disability located in autistic people, rather than in the able-bodied world?

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