Report From Autism Acceptance Month So Far

by Ari Ne’eman

It’s the middle of April, which means it’s time to pause to reflect not merely on what we’ve been doing for Autism Acceptance Month but why this campaign is so critical for our community. The history of autism is one riddled with rhetoric that has at various times painted autistic people as possessed by demons, cursed for their sins or those of their parents, devastating tragedies for their families, burdens on society, or pitiful wretches in need of a fix or cure. The dominant voices in the national conversation about autism are largely those of non-autistic people advocating for awareness, a concept that means very little for those of us who are actually autistic.

For us, “autism awareness” means fear-mongering, pity-based public marketing campaigns designed to paint autism as something dark and scary, and autistic people as mysterious and broken. Autism awareness means conversations about autism without autistic people.

The concept of autism acceptance seeks instead to replace the woefully misguided campaign for autism awareness with an active movement spearheaded by autistic people and our allies to promote understanding and support of autistic people across the lifespan throughout the community. We have joined an increasing tide of autistic people and allies in launching our Autism Acceptance Month website, in the hopes of beginning to change the conversations about autism away from fear and pity and toward meaningful acceptance.

On our website, we’ve asked visitors to pledge not to support or attend events about autism that exclude autistic voices, which has received hundreds of signatures since launch. We’ve provided fact sheets for autistic people, parents, educators, and those new to the community, as well as entire pages of resources for your perusal. We’ve had the privilege of hosting essays for the Autism Acceptance Month blog written by some of the most important voices in the Autistic community, as well as partnering with several organizations dedicated to empowering and supporting people with disabilities to present our campaign.

This is the second year of our partnership with online retailer ThinkGeek to raise funds for our policy and programming work through the sales of neurodiversity-themed t-shirts. We’re also offering an entire line of autism acceptance-themed products with our logo through CafePress. ASAN’s chapters across the country are hosting panels, socials, and other events to celebrate Autism Acceptance Month and educate their communities, and we’ve highlighted each of those events on our site. In the national capital, we’re hosting public screenings of autism-positive documentaries Citizen Autistic, Loving Lampposts, and Wretches and Jabberers as a way to stimulate conversation about what acceptance can actually look like.

Never before has our community had such a broad-reaching campaign for autism acceptance led by autistic people, and I am excited to be part of it. The status quo omits autistic people from conversations about us, but we can begin to change that in our neighborhoods and communities across the United States. We can be part of the change. Ten years ago, this was unthinkable. Today, this is reality.

Gaps In Our Communities

by Savannah Nicole Logsdon-Breakstone

It’s April, and therefore Autism Acceptance Month. We talk about how acceptance of and even respect for people’s Autisticness is important, not just for Autistics ourselves but for our communities. People have varied support needs, and respecting that and supporting access to having those needs met is an essential part of what we mean when we talk about acceptance. Community services and supports are for everyone, even though they can look very different for each of us.

A lot of the supports that non-disabled people need are already present (barring other forms of discrimination) just in how our communities are laid out. Not all of us have access to that though. We have further needs that will need met, or perhaps different ones, in order to make aspects of our communities accessible to us.

In my state, there is something called the Autism Waiver, designed to provide supports to people who might not be able to be integrated into their communities should they not receive supports. Because my state has an Intellectual Disability system instead of a Developmental Disability system, people like me have few options for receiving funded supports and services. This is one of the ways, and I’ve applied this year.

Last fall, after a few months living in my place, it started to become obvious that I needed supports. My mother has her own disabilities, yet once a month she has to come and help me clean my house, without pay, to keep my living environment safe. I don’t have the time sense or executive functioning to understand when different tasks need done, and I often need another person present to keep me on task or remind me what comes next when it comes to taking care of my house. This is doubly true when there are changes or interruptions- in those cases, it is all over with. Inevitably it reaches the point where I’m too overwhelmed to know how start on anything on my own, and I end up feeling trapped by it. At some point I stop being able to follow through on personal hygiene, too overwhelmed to do anything until my environment is re-stabilized. This process is one that has led to major medical issues on my past attempts at independent living. All this for want of just 4 hours a week support.

A friend told me I probably won’t get the waiver money, first based on his (incorrect) perception of how I am doing, then on the fact that there is a long list of interest with people in much more critical situations. He’s right about my chances on this second point. The Autism waiver is a smaller waiver, and there isn’t enough in the larger Office of Developmental Services budget right now to get all the people on the Intellectual Disability wait list the services they need. There isn’t money to re-appropriate, and expanding the budget for the Autism Waiver would require more funding for the Bureau of Autism services and for the ID services. So the “list of interest-” or as some of my friends call it, “the not-wait list list-” is long, and grows longer.

Some of the services and supports others are seeking under the waiver are certainly more extensive than mine. Some folks need one-on-one supports to be out in the community. Some people need assistive tech, including AAC, that they are able to have with them, rather than only in therapy or only at school. Some people even need the basic habilitative services already offered to people on my state’s intellectual disability waivers, but which their IQ score bars them from eligibility for.

My needs fall under informal respite. In addition to what I’ve already discussed, it could mean having someone who could go to the grocery store and other errands with me so that they can be completed even on my less focused or high anxiety days where sending me into the store alone is not productive. I also can’t transport myself, which presents further barriers. These things are different from habilitative in that they are skills I have but need support to follow through on them, whereas habilitative is seen as skills that need learned.

Under this waiver, in my state, I’d be allowed to hire family members who might not have been able to afford to provide these supports. This is a big deal, as family members do hit burn out like any other person who provides services. By treating them like any other provider of services in this respect, we can establish limits with our families because we don’t owe them everything for our supports. Obviously they will still have limits to what they can do, but the efforts they put forward can be balanced by this type of hire.

If I don’t get the waiver, I’m lucky enough that my sister needs child care and is open to bartering. It’s not as effective on making sure she’s reliable, though. It also presents a problem: I’m completely out of luck if I want to move someplace with more general community resources, be it a (in my case) synagogue or better public transit, if my sister doesn’t want to move to the same area. I might want very much to live in Pittsburgh or Harrisburg, PA, but because I’m currently reliant on unpaid support from family I am unable to do so. In turn, I’m further denied access to things that would provide accessible community involvement.

This is something many people, whatever support needs they have, deal with if they are entirely or primarily reliant on unpaid supports. You are, unfortunately, too often stuck living not where you want, but where those supports find convenient. While many people with paid supports are pressured into similar situations, there is at least a recourse process for them. But when your supports aren’t paid, and your level of support is such that you need a certain amount, the alternatives are not having meaningful access to the community at all.

Can we get on this, as communities? Can we work, together, to accept and ensure access to meaningful community inclusion, and the supports, formal and informal, that allow for that?

There are things, real, concrete things that we can do here. There are efforts out there already that just need our communities to back them, efforts on things like wait lists and funding freezes. Efforts that allow people with disabilities to pay their families or friends for their hard work as support staff. Efforts to ensure that our communities, friends, and families are taught not only what truly meaningful inclusion is, but also what is out there about how to do that.

We have steps we, as communities, can take to ensure this side of inclusion becomes a reality for all citizens. Let’s get to work.

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Listen Up!

by Henry Frost

Henry smiling on steps of Capital building

Airplane to Washington DC for secret commercial for Acceptance. Heroes, leaders all around. Autistic people all around. Acceptance all around. I am all around.

Henry goes to DC

Fun energy times. Full of hope. Full of ready. Ready for change. Ready to stop waiting for the right to be. Ready for acceptance.

Henry on the steps of the Capital building

Acceptance and equality is for all people. All people. Autistic people are people.

Henry_4

Henry_5

Henry_6

April has changed. Everything has.

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Be the Very Best YOU, You Can Be!

by Ariane Zurcher

There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”. I actually prefer the words “embracing” and “celebrating”, as acceptance can too easily be seen as passive. My evolving understanding of acceptance is anything but passive! Embracing and celebrating all that each of us is, without trying to mold ourselves to be something we aren’t, are better words to describe what I believe and try to practice on a daily basis. This concept applies to parenting, but also to my own goals as an individual. What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be?

So how do I do this with my wonderfully talented daughter? By recognizing what she’s good at, for starters.  One of my brothers is an astrophysicist and the other is a microbiologist.  My mother was a chemist, my father a financial advisor. I don’t have any interest in either science or finance. Had someone said to me ~ your most successful same age peers all love and excel at these two things, therefore you should too ~ and I was then forced to take classes in science and economics, I would have been miserable. Had I then been shamed for my interests in art, design, literature and writing, I would have been more than miserable, I would have been despondent and heart broken.

I don’t want to spend my life crunching numbers and peering through microscopes. Hand me a book on quantum physics and I fall asleep. The only good that comes from giving me books like that to read, is the money I save on unfilled Ambien prescriptions.  I will never be, nor do I want to be, a scientist or economist. I accept this fact.  I don’t feel ashamed.  I don’t feel the need to feign interest in.  I have other interests and talents; I focus on those and am very happy.  That’s what we all do.  We avoid the things we aren’t great at, and have little interest in, and focus on what does interest us.  If we were lucky, we also had parents who encouraged, supported and cheered us on in pursuing those interests.

Why should any of this be different for either of my children? I want Emma to be the very best “Emma” she can be.  Which means I need to support her interests and find the best way for her to communicate, because without a means to communicate, she will be limited by what she can pursue.  Since verbal language is tough for her and typing seems to access a part of her brain verbal language cannot, we do all we can to support her typing.  How she communicates is not as important as that she be able to.

Emma loves to perform and sing. We have a variety of microphones and an amp for her to use.  She loves books. In between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live and how they spin webs.  Spiders are actually fascinating. Even though Emma loves her Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, emotions, pretend and real, not to mention drama, theatre and playwriting.

Last night Emma wanted to watch a really bad movie that she’d seen her brother Nic watching, about a two-headed shark that attacks a group of teenagers.  And despite my misgivings about the content (and just awful quality of the movie in general – the acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful.  There was a great deal of emoting and blood curdling screams, which Emma thought hilarious.  She kept giggling and saying, “Watch out, the shark is going to come and eat you!  Oh no!  He’s going to bite your arm off!”  Then she pretended to bite me.  Bad movie, great time had by all and I now have another topic (sharks) for a lesson plan I intend to create. Just as my daughter is showing a certain fascination with sharks, her mother has a similar fascination with zombies!

Be the very best YOU, you can be.  Now that is something I can embrace and celebrate!

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For Want of a Nail

by Meg Evans

We often don’t realize how much our ability to do our work depends on the workplace environment, rather than simply the nature of the work itself.  For those of us who spend our days sitting at a computer, a good chair is essential, of course.  We also need adequate lighting and a monitor of reasonable size and quality.  Other factors, such as whether the work area is quiet and free from distractions, also affect our productivity and comfort level.

To make my workspace more pleasant, I keep a potted plant on top of the file cabinet and some cheerful decorations on the desk.  I use a mouse pad with a wrist rest, and I have a pair of eyeglasses prescribed specifically for the distance to the monitor.  I’m careful not to let old papers or other distracting junk pile up on top of the desk.

Admittedly, I haven’t always been as diligent about organizing the desk drawer; but I gave it a thorough cleaning last spring, around the same time that my employer issued me a new laptop computer to replace my old desktop model.  Because I don’t travel much, the laptop just sits on the desk.  I’ve been using its screen as an extra monitor, mainly when I copy and paste from an Excel spreadsheet into another document, which I do a few times a day.  The laptop sits to the right of my monitor, and a few inches behind it.

I have a routine of going out for a midday jog two or three times a week.  It’s good to get some fresh air and break up a sedentary workday with a little activity.  Last fall, when my feet started getting sore, I thought it was because I needed new running shoes.  Replacing the shoes didn’t cure the problem, however.  My feet felt better over the holidays, but they got sore again in January; and then my left knee started bothering me, too.

By February, when I sat in my desk chair, I felt pain along the back of my left thigh.  At that point, I realized that I had developed symptoms of sciatica, which is an inflammation of the sciatic nerve.  Where it had come from was a mystery, though.  I’ve never had any back problems, and my desk chair appeared to be in good condition.

I asked my husband if he thought a new ergonomic desk chair would help.  He said, “No, the chair is fine.  The problem is your posture.  I’ve noticed that you have been leaning forward when you sit at the computer.”

This news came as a surprise—I hadn’t realized that there was anything wrong with my posture.  But sure enough, when I paid more attention to it, I caught myself leaning forward several times.  To keep myself sitting up straight, I put a small throw pillow on the floor under my desk and rested my feet on it.  All of the soreness in my feet and legs soon vanished.  Evidently, my husband was correct that I had been leaning forward and putting weight on my feet, without being aware that I was doing so.

But why would my posture have changed last year?  That question puzzled me for several days before it dawned on me what had happened.  When I started using the new laptop’s screen to copy and paste from Excel, I didn’t increase the size of the Excel spreadsheet to compensate for the additional distance from my eyes.  Although I could still read it and therefore didn’t realize an adjustment was needed, the spreadsheet was just a little bit blurry; and so I had started leaning forward to see it more clearly, without conscious awareness.  Put simply, I could have avoided all of my foot and leg problems if I’d had the good sense to click ‘Zoom’ in Excel when I first got the laptop.

“For want of a nail the shoe was lost; for want of a shoe the horse was lost; for want of a horse the rider was lost; for want of a rider the message was lost; for want of a message the battle was lost; for want of a battle the kingdom was lost; and all for the want of a horseshoe nail.”  –English proverb

Many people struggle with discomfort of one sort or another in the workplace, not because they have a condition that can’t be readily accommodated, but just because they don’t have a clear idea of what accommodations they need.  Often it’s a simple matter of rearranging items in the work area or using something that is available at little or no cost.  Perhaps all they need is a built-in feature of a mainstream product, as with the accessibility setting that I needed to use in Excel.  But our culture historically hasn’t put much emphasis on teaching us to identify and correct problems in the work environment, and we may not know how to go about it.

With regard to autism, finding out what’s going on with workplace difficulties can be a challenging task.  Problems in the work environment tend to cause generalized anxiety and depression, rather than specific, observable physical symptoms.  Putting our feelings of discomfort into words can be a further obstacle, both when we’re trying to identify possible causes and when we’re seeking advice from others.  Is the work area too noisy, too bright, or too crowded?  Is the task poorly defined?  Are there too many interruptions?  What needs to be changed to make it better?

Professional service providers such as behavior analysts and job coaches have experience assessing behavior and creating plans for improvement.  Sometimes they can be helpful in pointing out issues that might otherwise have gone unnoticed.  But their main focus is on adjusting the person’s behavior to the work environment, rather than on modifying the work environment to better suit the person’s needs. Although they can suggest ways of coping with an anxiety-provoking situation, they can’t get inside a client’s head and trace the anxiety back to its root cause.  For that, we need to learn how to do our own detective work—identifying what things are essential in our environment, as well as knowing when they’re missing and what to do about it.

This is where self-advocacy programs come in.  They teach people how to recognize and address accessibility issues, thus filling the gap left by the schools’ lack of instruction on that subject.  Employers, however well-intentioned, can’t be expected to provide accommodations that they do not know are needed.  It’s the responsibility of the employee to identify where a problem exists and to find a reasonable solution to it.  When self-advocacy programs teach effective strategies for doing this, everybody wins—the employee gets a more comfortable work environment, and the employer gets a more productive worker.

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Acceptance Is Equality

by Allison Wohl

Over the past several years, there has been a fundamental shift in the disability rights movement toward increased self-advocacy: the idea that people with disabilities must be at the table, rather than have others make decisions on their behalf. This shift in perception also heralds a significant change in public policy beyond acceptance and toward true self-determination. Autism Awareness month celebrates, among other things, “presuming competence”, “real jobs for real pay”, and “autistic rights as human rights”.

Developed in the 1950’s and 60’s, our current system of public supports that now increasingly allows citizens with disabilities to live in their communities is an antiquated patchwork of funding streams and programs that actually prohibits beneficiaries from working and saving. Supplemental Security Income (SSI) is the gateway to this system; Medicaid is the delivery vehicle; this program was never designed to support impoverished elderly people with dementia, poor single mothers, children with Autism, and adults with developmental disabilities all in one program.

Once a young adult turns 21, he or she exits the youth system and is encouraged to apply for SSI—a means-tested program with income and asset limits–which will force him or her into poverty for the rest of his or her life. This person cannot have assets totaling more than $2,000 over a lifetime. In the current system, he’ll need Medicaid in order to be insured medically but he’ll also need it to get housing, job coaching, and aides to help him live independently.

More importantly, the system does not serve those who rely on it for their very survival. It does not serve families who want their children to live a life like those of others without disabilities. In part, this is because there are thousands of providers making millions of dollars on the backs of the disabled by paying them subminimum wage and segregating them in sheltered workshops. We literally have a class of people who are denied the opportunity to work and save. Isn’t that what being an American is all about? There ARE answers and solutions.

Most parents hope and assume that their children will go on to work, save, and live their lives as they see fit. So imagine having a child who will need some sort of government assistance (perhaps even a substantial amount) for the rest of his life. Should that person be prevented from earning and saving as well? The Social Security Administration—applying current policies–thinks so. But this doesn’t make any sense.

The government spends approximately $357 billion dollars per year on services for citizens with disabilities. About 41% of it goes to income maintenance (welfare cash payments), 55% goes to healthcare, 3% to housing food assistance and only 1% goes to education, employment and training (http://content.healthaffairs.org/content/30/9/1664.abstract). What if those percentages could be altered so that there would be substantially less of a need for income supports?

The vast majority of people with disabilities receiving supports from their state and federal governments would love to work. Employment is what gives people independence, dignity, self-sufficiency. Families fear having their adult children with disabilities work; they live in fear of their child losing benefits, which would mean no health insurance, no one to assist them activities of daily living, laundry, paying bills. For those families living in abject poverty, a disabled family member’s SSI income is often the sole means for supporting the family. Hardly enough to survive, monthly SSI payments are only $668 per month or $8,376 annually. The federal poverty level is $10,890 for a single person. So we’ve forced these already vulnerable citizens into poverty; their only other option is institutionalization.

I am the Executive Director of a coalition of 18 national disability groups—the Collaboration to Promote Self Determination (CPSD)–whose focus is the modernization of this antiquated system of public supports that serves neither families nor its beneficiaries. Our current system promotes the segregation of citizens with disabilities and codifies discrimination against this population. A key partner of our collaboration is the Autistic Self-Advocacy Network, whose motto is “Nothing About Us Without Us”. Run by and for Autistic people, ASAN’s mission is to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism.

A new social contract is possible. CPSD, along with ASAN, believes that the dismal employment statistics for people with disabilities can be reversed. Through legislative action, Congress could enable young people with significant disabilities to benefit from more rigorous preparation for employment and paid work experience in special education so that they don’t become employed at sub- minimum wage after leaving school.  Congress could place an Employment First presumption in law to ensure that public resources are marshaled to place individuals with disabilities in jobs and maintain them in these jobs.  A tax-exempt savings account could be created in law so that individuals with disabilities and their families could save for the health, education, housing and other expenses they will have in a lifetime.

Please join with us in this struggle for equality. Resolve to add your voice to the groundswell of voices demanding modernization to the existing outdated system of government supports and services for adults with disabilities while ensuring that a strong social safety net is maintained.

Resolve to be part of creating a system that results in work, savings and independent living and autonomy. Because autistic rights are human rights. And autism acceptance is about centering the voices of autistic people in the conversation about autistic people.

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We Want YOU

We are looking for first-person and family perspectives on autism and autism acceptance to include in our “What Is Autism” section. We are looking for brief descriptions of what autism is like from the perspective of autistic people of all ages, and brief discussions from autistic people or their families about what autism acceptance looks like in action day-to-day and why it is important.

Submissions can be written (500 words or less) or video (5 minutes or less, in .MOV, .MPEG4, .AVI, .WMV, .MPEGPS, .FLV, 3GPP, or WebM format.) Submissions should be sent to acceptance@autisticadvocacy.org.

Some possible questions to get you started:

Tell us a little bit about yourself/your family

Tell us a little bit about your autism

Do you like being autistic?

What does autism acceptance mean to you? For society as a whole?

What does autism acceptance look like day to day for you/your family?

Why is autism acceptance important? To you? To the world?

Is there anything else you’d like people to know about autism and autism acceptance?

We look forward to hearing from you!

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Study, Love, Acts of Justice

by Clarissa Kripke

Medical school didn’t prepare me for parenthood. It did train me to respect scientific limitations. I declined genetic screening because I didn’t want to risk my pregnancy. When I look at my son’s baby pictures, I realize he was as squishy and wrinkled as any newborn. But to me, he’s beautiful. Extraordinarily and uniquely so. Like most mothers, I fell in love.

When our community welcomed him, like generations before, we prayed for a life of Torah, Ketubah, Tzedakah— study, love, acts of justice. We weren’t thinking about conformity; achieving independence; or mastering developmental milestones. We enjoyed his pre-diagnosis years. I am grateful that people hushed their worries. My son developed in the ways that are important, at his own pace, along his own trajectory. Study, love, acts of justice. They left us alone. We knew he was different, but it wasn’t a problem. He taught himself the Hebrew alphabet and to read single words. And he was cuddly. I carried him everywhere in a backpack. He peered over my shoulder at the world– wonderfully observant. He helped me notice things– patterns of leaves in wind and sparkles in warm sand.

By the time my son was three, we needed help. We couldn’t get him to do anything he didn’t want to do including staying on the sidewalk. He cried a lot. We were tired. He was labeling things, but his speech was hard to understand and didn’t use it to communicate. The most painful thing about receiving an autism diagnosis was the message that professionals who control access to services don’t love our son. The psychologist compared the methods she recommended to training rats. The rationale was, “Do what is required to get him to do things typical children do. This is how typically developing children learn. Therefore, if your son does them, he will become typically developing.” This never made sense. We tried it. It didn’t work. My son doesn’t learn like typical kids.

We tried a lot of strategies. A few were very helpful. We observed different people work with my son. Early intervention was traumatic. It damaged our relationship for a couple years. He lost his passion for letters and numbers. But we learned to use picture icons, to manage dangerous behavior and to teach skills that aren’t motivating. We also learned how to make bureaucrats do things. And a lot about the importance of our country’s safety net—a system I never thought my family would depend upon.

The most important thing we learned was how to identify helpful people. It isn’t training that makes someone good. It is a personal characteristic—the ability to see my son for who he is instead of who he is expected to be. My son has to interview a person for the connection to become apparent. His interviews are wordless. Most young children can connect. Most people lose the ability as they learn to rely more on ideas than observation. People who study child development and behavior intervention have particularly strong stereotypes that are difficult to challenge. The key to building inclusive community is to provide opportunities for infants and very young children to play with Autistics without interference.

Some early educators lost track of the goal–study, love, acts of justice. My son’s contribution isn’t going to resemble that of others. Like Moses, my son is not a man of words. He may need a partner with a different set of gifts—someone like Aaron. That is ok. G-d creates people for a purpose. We make each other better. Activities of daily living and academics are important, but mundane. My son’s skills in those areas are still rudimentary, but slowly progressing. His gift to me is sacred, a window to Awe, Wonder, Joy and Pride. My son can be observed, but he can’t be tested. Perhaps that is best. Comparing him to a standard distracts from his gifts. Standardized tests don’t help him discover or achieve his potential.

Through the internet, I found Autistic community. The best support and advice has been from Autistic adults. Their insight has been invaluable. Since my son’s diagnosis, I haven’t sent out a holiday card. We have happy news to share. But sharing happy things triggers two responses: “You are such great parents!” or “He must be high functioning.” What they mean is “Thank goodness you sound like you are thriving. I don’t want to be helpful. If you talk about struggle, then I feel guilty.” The Autistic community creates spaces where I don’t have to rant about challenges for others to understand that we need help. Our family needs a lot of it. The help we receive is a blessing. Many parents feel threatened when asked to speak positively about their family. The reason may be fear of losing help.

Resources developed by Autistics help parents appreciate their children. Autistic community has fostered understanding of those who struggle to speak for themselves. I am deeply grateful to the Autistics who have demanded justice by living openly, honestly and unapologetically. It has paved the way for my family to do the same. I am also grateful for practical help and good company. I am especially grateful for the leadership of Duke Crestfield, Ari Ne’eman, Dora Raymaker, Jim Sinclair, Karla Fisher, Landon Bryce, and Ian Ford.

 

Clarissa Kripke, MD

Associate Clinical Professor

University of California, San Francisco, Department of Family and Community Medicine

http://DevelopmentalMedicine.UCSF.edu

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Acceptance

by Matt Young

The things we’re willing to accept, and the things we refuse to accept, reveal a lot about who we are, as individuals and as a culture.

From a young age, our society strives to indoctrinate us to refuse to accept anything less than perfection and success from ourselves. We are taught to reject any hint of failure, to turn up our noses at the faintest whiff of aberrance or deviance from the socially mandated yardstick of that which is “normal.” Inabilities or disabilities are often dismissed as we are told to simply “try harder”, exhorted not to “give up” and instructed to “accept nothing less than success.”

But not all bodies and minds are created equal, and many of us find ourselves carelessly cast out into a world that has been designed for bodies and minds that are very different from our own. Building a healthy and satisfying life for ourselves in such a world is often an insurmountable task, as we find ourselves confronted by innumerable barriers to access at every turn. Without supports and accommodations to compensate for the disadvantage of living in a world that wasn’t designed for people like us, many of us simply find ourselves adrift, subsisting as best we can on whatever resources we can manage to scrounge up for ourselves.

Meanwhile, society continues to inundate us with the message that our failure to achieve security and stability for ourselves is our own fault, and furthermore that our failure is unacceptable. We are conditioned to refuse to accept our shortcomings, and in the end, we are conditioned to refuse to accept ourselves. We are taught to loathe our differences in ability, taught to blame these natural differences for our failures, rather than holding society accountable for its failure to accommodate a more diverse range of bodies and minds. Trapped in this destructive paradigm, we finish the job society started, cycling through endless loops of shame and self-rejection.

In the specific case of autism, this dynamic is played out in a particularly blatant fashion. For years, the dominant narrative about autism has been anything but accepting. Awareness campaigns funded by alarmist organizations have characterized autism as a mysterious, invisible thief that steals the souls of innocent children, leaving them empty, emotionally disconnected husks. Panicked parents have been conditioned by this fear-mongering to treat autism as the enemy, and to seek out ways to destroy this insidious force that has somehow stolen away the perfect, able-bodied, able-minded children they were “supposed” to have, and replaced them with these pitiable, tragic figures.

The damage that this rhetoric does to the autistic population is, quite frankly, unacceptable. Which is why we are rebranding April, long claimed by the fear-mongers as “Autism Awareness Month” to spread their destructive campaign of awareness of autism as “the enemy.” We refuse to accept this brand of awareness, and have recast April as “Autism Acceptance Month”, a time to celebrate the unique, complex, sublime individuals that we are, to accept our strengths and our challenges, our struggles and our triumphs.

It’s time to accept that autism is here, and it’s not going away. To accept that autistics are here, and we’re not going away. It’s time to accept that autism is a natural part of the diversity of human existence, and that society has a long-neglected responsibility to provide this segment of our population with access to opportunities to succeed, to thrive, to find happiness and fulfillment, safety and security. It’s time to accept autistic mannerisms such as flapping, rocking, walking on tiptoe, and other forms of harmless stimming as the natural self-expressions of autistic bodies, and it’s time to accept our right to express ourselves in these ways, publicly.

It’s time to accept that autism is a broad, complex condition that presents in myriad ways, with endless combinations of strengths and challenges, talents and impairments. It’s time to recognize that all of these diverse combinations are equally valid forms of autism, and that each of us on this vast spectrum is equally autistic, no matter how different from each other we may appear to a given observer at a given moment of our lives. It’s time to accept that our autism is an inextricable part of us, a fundamental part of how we receive and process information, rather than simply a set of unacceptable behaviors to be corrected. It’s time to accept our right to be autistic, to be ourselves, to accept ourselves as we are.

It’s time to accept that each of us develops at our own pace, and in our own way. It’s time to accept that some of us will never develop speech, and some of us will speak when we’re good and ready. It’s time to accept that some of us will communicate through typing, or signing, or never use language at all, and to accept that any of these alternatives is okay. It’s time to accept that some of us may never be able to tolerate the social and sensory overwhelm of large crowds, and to accept that it’s okay for us to keep to ourselves if that’s what brings us peace and security. It’s time to accept that some of us may thrive in an employment setting while others of us may never achieve stable financial independence, and to accept that you might not be able to predict which is which from your external observations of us. It’s time to provide us with guarantees of the supports we will need to live safe, happy lives, whichever of these abilities we do or don’t develop.

It’s time to accept autistics as respected members of our communities. It’s time to accept that autistics are suffering from exclusion and deprivation every day as a result of living in a society that was not designed to include us. It’s time to accept responsibility for changing this situation, and it’s time to accept that the solution is to change our society, not to change autistics. It’s time to accept that this change won’t be easy or quick, and it’s time to accept that in the meantime, the autistic people we love will need that much more respect, support, and accommodation, while we work to create a society where we all have the opportunity to participate equally. It’s time to step up, and take care of each other, because the status quo is unacceptable.

It’s time to work toward true Autism Acceptance, every day, because the alternative is to continue to accept a world where 2% of the population is relegated to the margins of society. Is that really a state of affairs that you’re willing to accept?

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Acceptance Is Belonging

by Amy Sequenzia

Autism Acceptance means more than love and understanding. It means belonging.

Belonging to a family, belonging to a school, belonging to a group that shares common interests, belonging to a group of co-workers, belonging to a community, small or large.

Autism Acceptance means belonging to humanity. It means that the world sees us as belonging to the human experience.

I have always been loved by my family. I was not completely understood, for a long time. Even today, with all the knowledge my family has about autism and why I do things the way I do, many of my relatives understand me but don’t really accept me.

To them, I don’t really belong to that place in the family that I would occupy if I were more “like them”. Instead, I am treated like a child, showered with praise, cheers and sadly, pity, but not seen as the adult that I am.

Love and understanding. Not really belonging.

In school I wasn’t really understood. I was constantly reminded that I was very “difficult”, that I had too many “issues”, that I wasn’t trying hard enough. To them, I could never belong anywhere because “who would want to ‘have’ Amy?”.
I was not accepted.

Everybody has something to contribute to the world. We can be part of small changes or big changes. We cannot show how we can make contributions if we don’t belong, if we are not accepted.

I left school and I found some people who truly accepted me. I belong in their lives and they belong in mine. I found my Autistic community (some non-autistic allies included) and I belong. I am accepted.

I am the same person that “nobody would want to ‘have’”. I still need help, I still have impairments, I still am disabled. I did not have to pretend to be “normal” to be accepted by my friends. And not only was I accepted, I was also embraced. I belong in my community.
Autism Acceptance means instead of seeing us as outsiders, broken, the world could embrace our way of being. That does not mean denying that we have needs, that we need accommodations, big and small, that we might need more than a little help. Autistics are trying to be seen as full human beings, because we are – qualities and deficits, like everyone else. And we belong to humanity. We know that. The rest of the world needs to learn. They need to accept us, as we are.

Autism Acceptance means that parents will look at the Autistic child and acknowledge that the child belongs in that family. It means making room for the child, the whole child.

Autism Acceptance means that schools will acknowledge that an Autistic child deserves an inclusive education and that autism is not a set of deficits. All children belong in an educational setting.

Autism Acceptance means that we will be valued for the things we do well and not stigmatized because we do certain things in a non-typical way. We are not typical but this does not mean we are not capable, competent, creative. We belong in the work force, we belong in colleges, as students and professors, we belong in the arts. Accept our unique vision.

Autism Acceptance means that those of us who cannot speak and who might need more time and support to achieve our goals, or who might experience severe anxiety, leading to acts of self-injurious behavior or maybe become violent, will still be respected for who we are, will be given the supports we need, because we all belong to the same group: humans. And we all have the right to dignity.

Autism Acceptance means that our decisions about our lives are heard and respected. It means that our lives is worth living and we decide that. We belong. We are humans. We have the right to our lives.

Autism Acceptance means belonging because the opposite of it would mean that Autistics should not exist. And this would be oppression.

Autism Acceptance is belonging. Accept that – because we are here, we exist, we belong to the human race.

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