All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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02 November 2010

Autistics Speaking Day 2010

The past month has been busy for me on the advocacy front. I attended the 2010 SABE Conference in Kansas City, Missouri. While at the conference, representatives from organizations such as Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) interviewed hundreds of people with disabilities on the subject of institutions. And boy did they have a lot to say.

Though the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act (ADA), and other legislative acts, decisions, and rules exist to serve people with disabilities, reality shows that many individuals who receive home and community based assistance do not experience genuine community environments or lifestyles.

When I interviewed conference attendees about what they think of when they hear the word community, I received responses such as: access, choices, equality, inclusion, people making contributions, living and working, and a place where you are allowed to come and go as you please.

When I asked interviewees to describe what they think of upon hearing the word institution, I received responses such as: bad, bossed around, disrespected, electric shock, forgotten, jail, lonely, limited choices, never visited, rejected, sad, segregation, and unworthy.

When I asked interviewees (a percentage of whom live in group homes or institutions) to share what they wish they could change about their lives, I received statements such as:
  • "I wish I could touch my own food first--before someone else does--and prepare what I want to eat for once in my life."
  • "I wish I had the freedom to fail. I wish I could make my own decisions, even if they are not always right."
  • "I wish I had a job that really means something to me."
  • "I wish I could get married and have children."
  • "I wish I could make mistakes without having the people in charge take my checkbook away from me as punishment."
  • "I wish I could come and go as I pleased."
  • "I wish I could choose my own friends."
  • "I wish my friends could come visit me whenever I ask them to come visit me."
  • "I wish people understood that people with disabilities can be of help and support to others. Just because someone uses a wheelchair, or just because someone might need help with toileting, does not mean that person cannot be of support to someone else."
  • "I wish I had real friends; friends that are not paid to be with me. I appreciate my support person, but they are paid to be my friend."
  • "I wish I could decide when I want to use the telephone. I have to ask permission like I am a baby or something."
  • "I wish I could have an iPod."
  • "I wish my group home did not have a sign on it. I think it scares people away. They see that and they keep on walking. They don't stop to chat like they do with our neighbors. I wish someone would stop and chat with me if they see me. I am different, but I don't bite."
The information we collected from interviewees will be shared with policymakers. After reading what we pooled and presented, I don't see how policymakers cannot be swayed in favor of closing down institutions and integrating people with disabilities into society. After all, it's the right thing to do. Community integration should be available to all people with disabilities regardless of where they live. And any standards applied must reach all community-based services and settings.

Kansas City wasn't my only stop. Dora Raymaker and I just returned from the Primary Care Research for People with Intellectual and Developmental Disabilities Workshop in Hershey, Pennsylvania.

After scampering back and forth through our connected rooms with big eyes and utter delight, holding hands and jumping up and down in our plush Hershey Hotel robes, admiring our chocolate-scented bubble bath solutions, ordering room service, (and--ahem--running round the outdoor flower gardens and ponds using false British accents pretending we were firing this gardener and that gardener--off with their heads!) we put on our professional hats to speak about Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Our presentation encompassed Community Based Participatory Research and how AASPIRE has employed this approach in its Healthcare study. Here's an excerpt from what I shared when it came time to explain how I felt as a community member being part of CBPR:

"At first, I found our internal emails to be too convoluted with scientific jargon to make any sense of them. I panicked thinking about how I was in deep water if my university degree and work experience combined was not enough to help me stay afloat in the world of CBPR. I possessed no inner resources to pull from in order to decipher the emails. Feeling shamefaced and unworthy, I dove under the table, knees shaking, nails bitten down. A week later, I peeked up from beneath the table and noticed the Principal Investigators of AASPIRE had emailed to ask how I was doing. I swallowed the lump in my throat and took this as a cue to come clean and explain I was an imposter, and that they should fire me and relegate me to the fringes of society where I belong. "No, no, no!" they said. "This is CBPR! We need you! We really need you."

When I heard the sincerity in their voices, I knew what I had to do: I had to confront them about their jargon. I had to confront them about the convoluted scientific email structures that made no sense to me. And to make a long story short, my suggestions ended up revolutionizing the way AASPIRE continued with the CBPR process."

In summary, the emails are now broken down and delivered in a format using the caps below with the answers plugged in beneath each one:

CBPR acknowledges the communities it works with as a unit of identity (something an individual *belongs* to), and builds upon strengths and resources of community stakeholders. It facilitates collaborative equitable partnership--never tokenship--in all phases of research. It encourages co-learning and capacity building among all partners, as well as focuses on community relevance of all research. The community itself defines relevance of the research, and the research conducted benefits the community and the researchers. For further information about CBPR, click here.

The catalyst for the development of CBPR was to address and solve the issues minorities faced in research. Many researchers tend to connect minorities in research with ethnic and racial minorities. However, the Autistic community is also a valid minority. Autistics are a small group facing challenges such as discrimination, marginalization, mistreatment in research, and underrepresentation. Having our own Autistic culture, language that belongs to our community [I am not a fan of this term, but for the sake of example, "Aspie"], social spaces, and events such as Autistic Pride Day and Autistics Speaking Day defines us as a legitimate community. To learn more, check out Jim Sinclair's description by reading about the History of Autism Network International.

In his work, Phil Schwarz has pointed out that members of the Autistic community, like members of the GLBT community, can be born into families who have no other autistic members. Family members who do not identify with the Autistic community may be at odds with the wishes of the Autistic community by taking part in advocating for cures, or pushing for normalization of individuals on the spectrum. CBPR gives the Autistic community a direct platform for dictating research agendas that are in line with the community's culture, goals, and values. Nothing About Us Without Us! CBPR gives the Autistic community a chance to have a say in research and science about us. It's designed to ensure that all research is beneficial to both the community and researchers. And, most importantly, CBPR is designed to give something positive and useful back to the community's it targets for research (e.g. it is not positive and useful for researchers to claim we have no imagination without consulting, as the the contrary is true). CBPR facilitates the very idea of Autistics Speaking.

Autistics are asking for acceptance, accommodations, equal civil rights, and services to help ALL individuals on the autistic spectrum in the here and now.

24 October 2010

World Autism Interviews: Aspie Teacher/Pennsylvania

Aspie Teacher is a woman diagnosed with Aspergers and wife of what she coins a "spectrumy" husband. She has a Bachelor's degree in Psychology and a Masters in Education. Aspie Teacher is a Community Outreach Director for the Autism Women's Network. Check out her blog, Aspie Teacher. She is passionate about sensory solutions and making the world sensory-friendly because she has several conditions that affect her sensory processing. In her free time she enjoys categorizing dog breeds and cooking.

E: In many communities, autism and disability are stigmatized. Do you feel autism is a stigma or taboo subject in Korean culture? If so, why?

Aspie Teacher: Autism definitely carries a stigma in Korean culture. The culture emphasizes conformity, so there's no place in the culture for anyone who is perceived as different. But it's not enough to be like everyone else; parents are obsessed with their child being the best. Everything an individual does is believed to reflect on their family, so if a child is perceived as weak or flawed in any way it would cause shame for the whole family, especially the mother who made raising that child her entire world.

Many Koreans think nothing of using hurtful slurs to describe anyone different. I've grown up hearing "animal" and the R-word being thrown around to refer to myself and others on the spectrum. That's what they say if they talk about it at all. It's seriously easier for families to withdraw from society than to risk hearing reactions like that.

E: What has been most frustrating to you in regards to how you might be perceived by other Koreans?

Aspie Teacher: Despite having grown up immersed in Korean-American society, I've always struggled to grasp and adhere to the culture's social rules. Because I don't do what's expected of me (such as following the crowd and trying hard to please people), I'm generally seen as too "independent" or just plain bizarre. (And despite what many people think, a fair amount of eye contact is expected in Asian cultures. I feel they can tell right away if someone is "off.") 

I've been in situations where because I didn't say the right things or react with the right social graces, other Koreans told me I didn't act Korean enough, or specifically, not enough like a Korean girl should. It was really more about my being a girl with an ASD and thus not knowing the subtleties of socially appropriate behavior, but the culture tends to describe unacceptable behavior as "acting white" because they have no other frame of reference. Like forgetting to say hello and goodbye has anything to do with race!

The irony is that when non-Asian people don't understand anything about me (such as when I pause before responding because of my auditory processing disorder or if I make a social mistake), they attribute it to my Asian heritage. When you're non-white, people automatically assume race explains individual differences.

E: Do you feel like you have to cover up, hide, or overcompensate for being on the spectrum around other Asians or Koreans? If so, how does this make you feel?

Aspie Teacher: When I was younger, I felt like even if I was giving 500%, it was painfully obvious I was always the person falling over my own feet socially and physically in any group of Koreans. Eventually, I started using a weird fake voice when speaking Korean, except I wasn't aware of it until someone I knew well pointed it out to me. And then I realized that I wanted so badly to fit in that I was overcompensating.

At some point it hit me that there was nothing I could do to cover up my autistic traits in order to fit in with other Asians. That was when I learned I could just be happy celebrating Korean heritage in my own life and that culture didn't have to mean fitting into some clique. I don't have to put on "the act" anymore, but that doesn't make me any less Korean.

E: Do you know of anyone else who is Asian and also has a diagnosis of ASD? If so, have they expressed any of the same cultural struggles as you?

Aspie Teacher: Yes, and the most commonly expressed concern is not being able to talk about their experiences openly within the culture. They mention feeling alone and misunderstood within the culture. Not everyone who is Asian with ASD mentions feeling completely excluded from the culture, however.

E: In general, do you feel most Korean parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice non-standard development? 

Aspie Teacher: While it's changing among some more informed parents, there are still plenty of Asian parents who refuse testing despite strong suspicions that their child has a developmental disorder. They'll even secretly admit that the child needs help yet refuse testing because they don't want the label to stigmatize their family. Beyond that, many parents will choose to focus on potential giftedness (if it exists) because that's all they want to see. And then they hope that any developmental or social skills issues will disappear or be overshadowed by achievement.

I've also noticed teachers failing to identify Asian students with potential ASDs. Teachers tend to stereotype Asian students as quiet and antisocial so they dismiss possible autistic traits as cultural differences. And because many Asian parents are hesitant to challenge authority and less likely to have accurate information within the community, they're less likely to speak up about testing if they have any suspicions and a teacher or doctor does not mention it.

E: Do you feel accepted and understood by the Autistic community, regardless of your cultural background?

Aspie Teacher: Race and cultural background haven't been obstacles to being accepted or understood by the Autistic community, although sometimes I wish I knew more people who've been through similar experiences with both autism and race.

17 October 2010

World Autism Interviews: Socialworks/Toronto, Ontario

Socialworks is a single mother of one child. She has a Bachelor's in Social Work with a minor in Public Administration, as well as a Master's in Social Work. She spends her time in community advocacy, namely accommodations and housing education. Socialworks is the Organizer for the Toronto Autistic Adult Network self-advocacy group, which started up in 2009. She enjoys cars, chess, home renovation projects, listening to all kinds of music, mechanics, and soccer. She's also a Star Trek fan (except for the most recent series).

E: How old were you when you received a diagnosis, and how did your family respond to the news?

Socialworks: I was 29 years old when I received a diagnosis. I was treated for depression and anxiety, and after being put through a bunch of medications that did more harm than good, I was assessed as having bipolar disorder. I did nothing with the diagnosis because it meant nothing to me. I was unable to see the mood swings that were supposedly evident in my vague generalizable answers. When I joined a local bipolar group and heard the stories and difficulties people lived with, it was then I knew I was not bipolar.

After having a 'meltdown' that landed me in the hospital, it was almost impossible to get professionals to listen to me because I was a "person with bipolar disorder." When asked what I needed at the hospital, I mentioned that I could not go home. They never asked me why. They didn't ask what I was reacting to. I was simply "bipolar."

I was put on medications again. But my routine was interrupted when the pharmacy fixed an error in the dosage and didn't tell me. I was functioning at a basic level, and with that medication change, I ended up in the hospital again a week later. I knew it was a medication switch, but no one was listening to me. In retrospect, I could have died because I was being given medications intended for individuals who are bipolar. Instead, I was autistic and didn't know.

Since I live alone, my family had no idea what was going on.

Months later, I decided to examine the root causes of my issues and the things I have difficulty with. I had to identify social norms and redefine the obstacles I was facing. It was then that I found my issues to be sensory related and went on to seek non-medicated ways of addressing the issues.

I was diagnosed during a three-session Cognitive Behavioural Therapy assessment for anxiety and depression.

Unfortunately, I had to struggle with the doctor to get the diagnosis because the doctor felt that labeling me wouldn't do much, and that there wasn't really much support for adults with Asperger's. I didn't care. I wanted the formal diagnosis so I could decide for myself what it was I wanted to do with it.

My family has been neutral about the issue. They have little to say and don't seem to be too interested in understanding. I don't think they believe me because I have been able to accomplish many things. Autism is apparent with other family members who either have persevered and have not experienced systemic difficulties that would force them to take a second look, or they live in environments where autism is never discussed.

I have also been bullied by relatives who don't understand Asperger's, and likely never will because I have chosen not to disclose to them for my own safety.

E: In many communities, autism and disability are stigmatized. As an African-Canadian woman, do you feel autism is a stigma or taboo in your family? If so, why?

Socialworks: It is definitely considered taboo in African and West Indian-Canadian cultures. Many times, children with developmental disabilities are ignored, and when you are raised like that, 'coming out' to family is an uphill battle. Oftentimes, adults are mocked, ridiculed, or belittled. And the more we speak, the more familial disdain becomes apparent. You're not just outing yourself, you're also outing your family. There are few spaces to talk about disabilities in the African-Canadian community.

Although I have autistic members in my family, I wouldn't consider autism open for discussion. There are fears of labeling yourself or being labeled by others that, historically, we as a community have tried to get away from. It just is what it is...hidden.

E: Have you ever felt misunderstood by family members or friends who expect you to behave in certain ways?

Socialworks: In my family, being seen as a strong individual has oftentimes made it difficult to be heard. Subjectivity plays a huge part in how my family understands my difficulties. I tend to keep it to myself instead of trying to get them to understand. I can speak, but speaking is not my first method of communication, as it is quite tiring. Add in the emotional piece that exists (even if you can't tell) and the whole experience can leave me unable to function afterward.

In regards to being misunderstood, I find that the old "You don't act autistic" attitude exists within my family. Sometimes my autism is hard to see. I've also focused a lot of energy over the years trying to fit in. I lived with a belief that such challenges (of fitting in) was a skill that would be beneficial to have as I moved forward. It got much harder as I got older.

My family doesn't see me when I not 'on' for the most part. They don't understand why I spend so much time at home alone, and why I don't react positively to spur of the moment invitations outside of the home, or to invitations to most social gatherings. My family never asks, and only recently did I know what was really going on myself. I grew up being called antisocial, selfish, narcissistic, "having emotional issues," strange, weird, etc.

My behaviour is what has been misunderstood for most of my life.
My family doesn't understand why I won't go certain places, why I can't work in certain spaces, why I'm a picky eater, why I feel cold most of the time, why I don't speak much in groups, why I carry all of my heavy grocery bags at once, why I go grocery shopping rarely--and only during the wee hours of the morning, why no one really visits me, why I've worn dark coloured clothing most of my life, why my walls are virtually bare, and why I seem to avoid most things others find appealing.

They do not understand, and I no longer see much of a benefit to them gaining an understanding. It's important to be understood to a degree, but it's more important to understand yourself. It is only then that you can decide for yourself who you want to be. Anything less (i.e. being defined by what other people tell you you are) tends to hurt the self-esteem.

E: What has been most frustrating to you in regards to how you might be perceived by others who share the same cultural heritage (do you feel you have to cover up, hide, or overcompensate for being on the spectrum)?

Socialworks: I think the fact that attitudes and assumptions are the same, if not more, by others who share my cultural heritage. It is frustrating to try and share a part of your identity when doing so sometimes closes the doors to being seen as a human being, or "more than just [this or that]..."

I will say that I have been in various spaces where, based on discussions--which had little to do with ASD--it was clear that I was not in a safe place to be open about myself. Hostile discussions around gender roles, sexuality, race, cultures, education, and the reinforcement of linear thought around these issues have repeatedly told me that if I speak out on any of these topics, my social location alone would set me up for a battle I can't say I am always up to fight.

For the most part, I feel neutral about it all. The only times I get heated is when my apparent neutrality makes it difficult for others to believe me when I say I am experiencing some sort of emotional difficulty. Then I feel frustrated. It is then, and only then, that I wish I could better communicate my feelings so as to avoid the doubts of others.

E: Do you know anyone else of color, on the spectrum, who has also expressed similar cultural struggles?

Socialworks: Yes, I have met other people of colour who have a diagnosis of ASD, and we share similar struggles. Our age differences, access to opportunities, and general life experience may play a role in how we internalize societal pressures to hide or fit in, but the issues are the same.

E: In general, do you feel a healthy percentage of African-Canadian parents are likely to look into further diagnostic testing if either they or others (e.g teachers) notice non-standard development?

Socialworks: The scars of black children being labeled in the school system and streamed are still there, so many parents are hesitant to seek a formal diagnosis for their child, and when they decide to, service providers rarely approach assessments with a deeper understanding of the complexities around disability within culturally specific groups.

It can be tough for any parent to accept that their child could be having difficulties. I do not believe that more parents will look into further testing without community outreach. If parents seek services through the school, they have to keep in mind that schools are not necessarily eager to swallow the costs of assessments. In addition, once a child has been assessed, the school must take action. Add the fears of the parents, and the fears of the school being seen as labeling another black child and/or labeling too early in the child's development, and nothing meaningful really happens.

E: Do you feel accepted and understood by the Autistic community, regardless of your cultural heritage?

Socialworks: I do know that I have not felt rejected by the Autistic community because of my cultural background. At the same time, I don't feel included. I see it has another dimension to the third person perspective I find myself in most of the time as an Autistic adult.

E: Is there anything I have not asked, you would like to share?

Socialworks: The most frustrating thing is that people rarely ask why. If we begin to ask why, and if we value the lived experience of individual persons at least as much as we do those who perceive, we could dispel a lot of misconceptions. We need to take into account some of the cultural attitudes we have around autism and disabilities, as well as open up spaces for understanding and change. We need to help others fight for and access needed services in ways that protect the dignity of individuals, as well as their families and communities.

11 October 2010

2010 ASAN - OHIO Protest Against Autism Speaks

ASAN - OHIO had a successful protest against Autism Speaks in Columbus, Ohio at Ohio State University. The four-hour protest attracted media attention, in addition to independent reporters. Protesters raised the same points as other ASAN chapters:
  • Autism Speaks funnels only 4% percent of solicited monies back toward the families and communities it drains.
  • Autism Speaks fails to include autistic people--other than in token ways--in their decision-making.
  • Autism Speaks puts monies toward eugenics.
Autism Speaks' walkers addressed ASAN - OHIO protesters with:
  • "Autism Speaks can't have autistic leaders or board members because autistic people are incapable of making important decisions."
  • "Are you all stupid? You're all stupid!"
  • "Go home! You suck!"
  • "You're a bunch of idiots!"
  • "How do you sleep at night?"
ASAN - OHIO responded with slogans such as, "Nothing About Us Without Us!" "Autism Speaks needs to listen!" and "2, 4, 6, 8, Autism Speaks discriminates!"

State Representative, Ted Celeste, stopped by to listen to, as well as applaud ASAN - OHIO for their message. "You're all heroes," he commented. 

Benzion, an autistic person in support of ASAN - OHIO, said, "Autism Speaks is focusing on curing autism...not being able to live with, not integrating autistics. Two years ago, I very naively came to Autism Speaks to walk for autism, until I learned I was a disease that needed to be cured."

To view footage of ASAN - OHIO's protest, click here. To view their blog, click here. To view the ABC news report, click here.

09 October 2010

Yay, Terrariums!

Once a month, my dear friend Dora and I make time for a play date. And not just some slop-shod-devil-may-care date. We compose an agenda and approve it before we get together (through trial and error, we have come to realize that our agenda must be created and emailed--by either one of us--at least two days before our rendezvous.) No agenda, no date.

Today's agenda:
  1. Meet at Dora's house.
  2. Drive to Blossoming Lotus for lunch.
  3. Drive to Wonderful Terrarium Place in SE Portland.
  4. Head back to Dora's house and gleefully take pictures of our terrariums in Dora's art studio, sit down and talk about our computers (Dora just got a new business Mac that Elesia is so very jealous of), and then talk about either our recent business trips or current writing projects until we run out of communication bandwidth.
Now, I'd like to know who's behind those myths out there that say autistics aren't capable of making friends.

05 October 2010

World Autism Interviews: Mei Ye/Portland, Oregon

Mei Ye is the mother of an autistic son, and the wife of a self-diagnosed autistic husband. She is trained in multiple engineering fields, and works as a system software engineer for the computer industry. Mei grew up in what she describes as the ascetic pre-industrial era of the 70s and 80s in China. She has spent most of her adulthood in the States as an observer and thinker.

E: Autism is often stigmatized in American culture. Do you feel autism is a stigma or taboo in Chinese culture? If so, why?

Mei: Yes, most Chinese have little knowledge of autism. They most likely consider it as a mental disorder. Family pride is deep-rooted in Chinese culture.

E: Have you ever felt misunderstood by family members or friends who expect your son to behave in a specific (or traditional) way?

Mei: Yes. Years ago, a Chinese woman scolded my son--who was then four years old--for not sharing with her two-year-old at a party.

E: How did this make you feel?

Mei: I forgave her ignorance. I discussed autism with her. She is an understanding person. Years later, I heard that her son was diagnosed with autism too. The rate of autism occurrence is indeed astonishing.

E: Is there anything that frustrates you in regards to how your son might be perceived by other Chinese people?

Mei: I am a person who does not care about other people's perceptions. I have jumped many hurdles in my life. I am always learning, thinking, and looking for my spiritual and intellectual allies.

E: Does anyone else in your family have a diagnosis of Autism Spectrum Condition? If so, have they expressed similar cultural struggles?

Mei: My cousin in China observed autistic behaviors in her two-year-old. Her family is in dismay and denial. There are very few specialists in China who can diagnose autism.

E: In general, do you feel most Chinese parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice atypical development in their child?

Mei: Chinese care deeply about the wellness of their offspring. Chinese people are good followers. If one of their respected relatives or friends sets a good example, they will follow. So it is very important for families like mine to be open and honest on this issue.

E: Is there anything else you would like to share?

Mei: I am passionate in finding the best education model to grow and harvest the giftedness part of autism.   

Survey News

Got an extra 15 - 20 minutes? The survey posted below received full ethical approval from the Institutional Review Board and contains consents. It examines the relationship between the autism spectrum and Internet use, identity (including language use and neurodiversity), and visual perception. Scores are completely anonymous, and it's for any adult--or child of at least 7 years in age--who is diagnosed on, and/OR who self-identifies as on, the autism spectrum. Participants may receive help if needed.

Click here to reach the survey.

Steven Kapp
PhD student, Psychological Studies in Education
UCLA Graduate School of Education & Information Studies
Co-Director, Autistic Self Advocacy Network - UCLA/LA Area

29 September 2010

2010 ASAN-PDX Protest Against Autism Speaks

[A special thank you to Kassiane Sibley, who led the protest in my absence, as I was at the Self Advocates Becoming Empowered (SABE) conference in Kansas City. Founded in 1990, SABE works for the full inclusion of people with developmental disabilities throughout the States.]

Autistic Self Advocacy Network (ASAN) aims to advance the principles of the disability rights movement, as well as to ensure equal access, opportunities, and rights in society for individuals on the autistic spectrum. The 2010 ASAN-PDX protest against Autism Speaks in Portland, Oregon comes on the heels of larger advocacy efforts being undertaken by Autistic people and cross-disability allies throughout the nation. In addition to the Portland protest, further protests are being organized for Saturday, October 23 in Dallas/Fort Worth, as well as Saturday, November 6 in Washington, D.C.

ASAN-PDX asserts that Autistic adults will not be bullied, and that they will raise their voices. If Autism Speaks is to continue speaking for autistic individuals, they must include them in their leadership, and not only in token ways. They have zero Board members who are on the spectrum. And it is unfortunate that only one autistic is in an advisory position with their organization. Allowing only one autistic person in an upper-level position is simply another form of exclusion. Autism Speaks solicits monies from communities and puts little back in. Only four cents of every dollar goes toward services to help autistic people in the here and now.

"I share ASAN's concerns around the use of biomedical research to eradicate autism," says Dominic Le Fave in a blog post which includes a photo of the protest, "...the eugenic potential of genetics research is something that has already outstripped the capacity of our current ethics." To read more, click here.

When Wired.com asked ASAN President, Ari Ne'eman, what non-autistic people can do to become effective allies of the Autistic community, Ne'eman replied: At the political level, watch where your money is going. There are a lot of well-meaning people who think they're helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities, and ask tough questions like, "Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?" To catch the full article, click here.

Autism Speaks' booing of ASAN-PDX supporters ceased when Jim Sinclair's Don't Mourn For Us was recited in a dramatic reading. People began to ask for copies of the article, and tension dissipated.

Hecklers who yelled, "You aren't a parent, you have no right to say that," take note that three of ASAN's Board members, as well as several ASAN supporters are Autistic individuals who also happen to be parents of autistic children. And those who uttered such statements as, "This is why we need a cure," and "You aren't really autistic," please refer to A Handbook for Disempowering Advocates. When your autistic children grow up and decide to become self-advocates themselves, will you seek to disempower them too?

A few Autism Speaks allies brought cookies and water bottles to protesting ASAN-PDXers. THANK YOU. Thank you!

Last year's local protest coverage:

Protest Against Autism Speaks

14 September 2010

World Autism Interviews: Susan Golubock/Arizona

Sue lives in Sun Lakes, Arizona. In addition to providing consult services to adults on the spectrum, and to parents of autistic children, she presents at conferences through her business, Making Sense of Autism. She has been an active participant at Autreat for the past ten years and is in hopes of launching a similar autistic conference/retreat program on the west side of the States. For relaxation, Sue plays tennis, and has recently joined a Mah Jongg group (stating that it's easier to socialize with a game to focus on). She is a Star Trek The Original Series fan who also enjoys books about forensic science.

Elesia: Employment issues are a huge topic in the Autistic community. As a mature adult on the spectrum, please share your experiences in the work force.

Sue: For me, burnout started in my 40s, almost 10 years prior to my self-discovery and diagnosis. I was a school-based occupational therapist. I championed getting out of the medical model of pull-out services and getting into the functional environment (the classroom) to work with students. Unfortunately, I worked myself out of a job. I discovered I couldn't function in other people's environments. I went back for a master's degree in assistive technology, thinking this would get me into an environment I could handle--a computer environment. I cut back to part-time employment to handle working on my degree.

When I finished, I accepted a part-time position at a university, thinking the small class size and quiet of a university setting would work for me. It was then I self-discovered why I was struggling so much with employment despite my years of previous success in my field. I started "coming out" to a therapist who worked with autistic children. At this time, my well-hidden--due to vigilance--autism-related characteristics started coming out. And I ended up losing my job without really understanding what happened until much later when I went back into school-based practice (this time asking for places where I could "escape" in the schools, though I phrased it as needing places to assess students and write reports). Later in life, I left school-based practice and ended up in clinic-based practice where I was guaranteed my own space.

Elesia: When you received a diagnosis, did you choose to share it with others?

Sue: I outed myself to anyone and everyone who would listen. I was desperate to learn what it is I did not know about other people, but was pretending to know so I could fit in. There was no way to ask people without disclosing my status on the spectrum.

Elesia: How did revealing your diagnosis affect you at work?

Sue: I focused my work on autistic clients. For a time, this combination of private practice in an autistic setting helped to keep me working full-time. By my mid-50s, I could no longer handle the pace and demands of full-time work. I dropped back my hours to less than 20 per week.

Every few years, I've redefined what I am willing and able to do (fortunately, I have a supportive boss) in order to find my remaining niche in my profession.

Elesia: You are still working now. Has anything changed? Do you have new struggles to face?

Sue: I'm now 64 and have reached another crisis, as I cannot deal with the energy and time demands of creating written reports, even though what I produce is excellent! Despite my constant effort to find a more efficient method, it just takes so long to convert what I know into words. I'm justified in retiring, but there is much more I still want to do. But I can no longer work in conventional ways. I've also found I no longer have the energy to keep up the image my husband, family, and friends have of me as a person who remains emotionally calm and able to handle life's little bumps (despite sharing my diagnosis with them). Interestingly, with each "letting go" of the person I never was, I am enjoying the person I am as I discover the pleasures of living life rather than just surviving it.

Elesia: Do you have advice for younger people on the spectrum who are entering the work force?

Sue: You are doing yourself and those who live and work with you a disservice by constantly working to compensate for the person you are by trying to "fit in." The energy required is neither recognized nor appreciated by others who assume you are Doing Your Best Without Knocking Yourself Out (like many people). As you get older, it only gets harder, and you'll find you are missing enjoying the pleasures in life. I gave up a lot to achieve what I have. And I would do anything to have back the enjoyment I felt in those years when I was a child and I was being the person I was born to be.

11 September 2010

World Autism Interviews: Rachel Cohen-Rottenberg/ Vermont

Rachel Cohen-Rottenberg publishes the blog, Journeys with Autism. She is a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).

At the age of 50, she awoke to her place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. Her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurdiversity section of the ASAN website.

28 August 2010

Is Adaptation Bittersweet?

I was recently asked, "Would you consider adaptation more difficult, and thus more exhausting, as an aspect of the social challenges of autism? Or is that something you would disagree with?"

Yes, I do often consider adaptation to be difficult and exhausting.

Imagine being relocated to an unknown planet. To gain the civility and respect of the inhabitants, you must adapt by submitting to strange painful shoes that alter your feet so you can walk on their terrain how they see fit. In addition to the shoes, the natives have decided they do not like the human quality of your voice, and so--to fit in better--you must use a voice modifying contraption. (Your voice is intelligible without the modifier, but it is viewed as atypical, ugly, and as something that must be corrected.)

The natives have decided lots of things for you, and they neither ask nor care for your input. They collect monies to open leading research centers to push for solutions for your kind. Scientists conduct studies without consulting you or your people. The natives talk about you without you. Even worse, they see to it you do not forget your human eyes fail to capture what their perfect ideal eyes do, and that though you can see, your eyes are deemed substandard and in need of a cure. If the natives are not discussing your defective eyes, then it is your appalling feet, your eccentric voice, or your odd human mannerisms and traits.

Your reward for adaptation and assimilation on this planet means the natives might hold you in higher esteem for making a conscious effort to submit to their conventions. Perhaps they are less likely to look upon you with eyes that scream: Inferior! Opportunities open up and life flows smoother, but only for a lucky few (mostly the token specimens of your kind).

Compliance will lead to consideration, tolerance, and understanding..."I'll keep trying," you tell yourself. But burnout is inevitable because, in spite of your best efforts, the natives still view you as in need of being fixed--or better yet, extinct. And they have no shame in discussing eugenics for your kind. Some go so far as to wish you would drown or be electrocuted by lightning.

You're offered anything from medications, surgeries, and treatment to quackery in order to transform you into an acceptable individual. You watch your people dragged off to asylums and institutions, or relegated to the fringes of society. And there's not a damn thing you can do about it but advocate and raise an army of like-minded individuals to reason with a body of native legislators and service providers who do not have the decency to treat your actions or words with respect. Dear Zaos, what you have to go through to gain an inch of consideration and equality! You search your mind for valid reasons to justify why the natives believe they reign supreme. What is this indispensable planet that dispenses! Is there any hope?

Resentment grows, and when you've had enough of putting up with native ways you find yourself interacting with them only when necessary.

At this point, what a relief it is for you to connect with your own kind. You are beyond joy to find an established community where you can be yourself without anxiety, fear, and ridicule. Concepts of civil rights and pro-diversity are music to your ears. As word spreads, some natives step forward and eagerly assist and support your community. But still, there are those who continue to make fun of you, kick you down, and demand conformity. Natives who deem themselves less barbaric and cruel simply ignore you because they do not understand you; a percentage admit to being too uncomfortable to interact with you. Can you blame them? After all, there are too few models to show them the way.

Adaptation is as difficult and exhausting as it is useful. It is often bittersweet. Home is where we make it, and it should be in our hearts. For some, the only home they have is their community.

The worst sin toward our fellow creatures is not to hate them, but to be indifferent to them: that's the essence of inhumanity. -George Bernard Shaw

11 August 2010

Neurodiversity Tidbits That Make This Blogger Smile

1. Mary and Max! It's a movie about a pen-pal friendship where neurodiversity themes are explored.

2. The National Autistic Society in the United Kingdom has these words on its home page: Accept difference. Not indifference.

3. The London School of Economics recently took action to hire a Neurodiversity Coordinator for their Disability & Well-being Office.

4. President Obama signed an executive order calling for an increase in federal employment of individuals with disabilities. Several disability-related organizations are banding together to ensure its success.

5. Snow Cake was released in 2006, but if you've yet to see it, put this one in your Netflix queue.

18 June 2010

Autistic Pride Day, 18 June 2010

Some supporters of Autistic Self Advocacy Network - Portland (ASAN - PDX) met at the Oregon Museum of Science and Industry, OMSI, for Autistic Pride Day. We wore our "posautive" tees.

Click here to see last year's APD post.

16 June 2010

The Uncharted Path: My Journey with Late-Diagnosed Autism, by Rachel B. Cohen-Rottenberg

In case you don't know this about me, I am an aspiring author (Young Adult paranormal fiction, short stories, and nonfiction) and so it pleases me greatly to compose this post--yay! What a treat!

Congratulations to my friend Rachel Cohen-Rottenberg on her memoir about life, love, struggle, and joy through the eyes of a woman awakening to her place on the autism spectrum!

It was an honor to review this novel (check out the back cover!) Here's what I had to say:

"The Uncharted Path is a journey that moves from lonely beginnings to a meaningful kinship found within the Autistic community. This book is an excellent example of how capable autistic people are at self-growth and acceptance. Readers will gain insight into the determination it takes to move from a three-year-old child's budding realization of the vast chasm of separation between the autistic self and the world to the adult realization of: It's me. It's just me. Rachel puts it well by stating that the key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. A place on my bookshelf has been earned by this memoir, as it is right up there with my personal favorites authored by individuals on the spectrum."

There were many times in reading Rachel's book that she struck a chord of recognition in my own life story. I especially liked how she described what it is like to always be functioning at emergency level (pre-diagnosis). When I look back, it's truly amazing that autistic people like us have survived. Emergency level is definitely not a daily state I ever want to enter again. It takes a strong sense of realization--in addition to an astute competent diagnostician--to move beyond wondering why you are different to knowing and accepting why you are different.

Rachel carries her point forward by writing clear and succinct. I will never forget this sentence: After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense.

This book also provides valuable insight into the things us autistic parents can do. I laughed aloud when Rachel shared her husband's response when, like all mothers, Rachel questions her adeptness: “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

This title will be available as of July 2010. To purchase a copy, click here (be advised that you will need to wait until July, which is just around the corner).

Be sure to check out Rachel's blog, Journeys with Autism.

(Love your book cover, Rachel! And I love you too!)

Related post:

Autistic Aspirations: Do We Have the Same Chances?

10 June 2010

Cross-Disability Letter on Disability Health Disparities

June 9, 2010


Kathleen Sebelius
Health and Human Services

Mary Wakefield
Health Resources and Services Administration

Pam Hyde, JD
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of "Medically Underserved Populations" (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don't want to pay interpreters or "bother" with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, "eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities." Further, "[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care."

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft "A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions " by the HHS Working Group on Multiple Chronic Conditions" (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine "medically underserved populations," HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)


Access Living
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

01 June 2010

World Autism Interviews: Me

Two grad students from Ohio State University (who are Aspitude fans--yay!) asked if they could interview me for their literacy narrative project. I'm always up for an easy blog post, so I've decided to share my answers. 

Students: What does "disability" mean to you?

Elesia: The Americans with Disabilities Act has a basic definition of disability: an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.

There are medical and social models of disability, which may be generalized as one being cure-focused and the other being inclusion-focused.

A lot can be said about the term disability. It is a word that conducts current.

Some people view disability as a negative while others view it as a positive. Disability has been defined many ways: as a way of life, as a burden, or as a gift. In my book, disability has the power to unite communities seeking equality, inclusion, and respect.

There is the neurodiversity movement, which promotes social acceptance of neurological difference as a part of the broad panorama of human diversity. It seeks to bring about a world in which people with disabilities can enjoy the same access, opportunities, and rights as all other citizens. Acceptance of variety is essential to benefiting from and understanding the contributions of everyone in our society.
In a nutshell, disability defines a particular minority group that I'm a part of. Disability is me.

When I think about disability, activist Norman Kunc's words run through my mind. As a keynote speaker at a conference, he said no matter how far technology advances, disability will always be here because it is a normal part of human diversity. Way to go Norman!

Students: What does disability studies mean to you? How would you define it, in your own words?

Elesia: I think of it as an interdisciplinary field that explores disability through numerous mediums. Disability studies should be introduced in preschool and it should continue throughout formal schooling years and beyond.

Students: How do you think your life has been affected by disability studies? Is it more negative or positive, if at all?

Elesia: There is a greater awareness about disability in comparison to when I was born, but I still run into insensitive people.

Students: What does literacy mean to you? How would you define what being "literate" means? Illiterate?

Elesia: The term literacy may be looked up in a dictionary. Assuming you're wanting a bit more than that, I shall move on to the importance of Augmentative and Alternative Communication (AAC), which consists of strategies that assist people with specific communication challenges
to participate more fully in any aspect of life (e.g. education, employment, community activities, care management, volunteerism). The general goal of AAC is to achieve the most effective communication possible for the individual.

To reach maximum literacy potential, a key factor involves the medium through which literacy is obtained. Barriers must be either accommodated or removed.

As for people with disabilities, illiteracy is often an unforgivable result of compromised access to ideal communication.

Students: How has your disability related to your definition of literacy?

Elesia: Empowerment and self-advocacy (especially in regards to gaining access to ideal communication) are important steps toward removing barriers to literacy.

As for my life experience, literacy comes and goes. Sometimes I am very coherent and able to understand whatever is thrown at me. Sometimes I am not. My ability to understand is like a light switch that gets turned on and off. This is a profound realization I have come to in regards to myself, and it is as fascinating as it is frustrating. If a work obligation comes to me when I am in one of my fogs, I will not understand, and that leads me to procrastinate. But when the fog lifts, all is clear and I feel invincible.

Students: What role does blogging play in your life? How does it relate to your disability?

Elesia: I enjoy blogging, as it is a way for me to air my ideas and opinions and receive feedback. Being both Autistic and Deaf, I may have unique experiences or perspectives others may wish to learn or read about. We spoke of disability studies above: my blog is a small speck of color that helps to make up the great collage of disability.

Students: Do you feel like blogging has enabled you to better express your feelings about disability? Inform others?

Elesia: Yes. The best part about blogging is that I can organize my disjointed garbled thoughts in one sitting. In a back and forth conversation, doing so would take me much longer. I enjoy reading a multitude of blogs within the disability community, as I learn so much and come away with new ways to explore how society relates to us. I want to know what people with disabilities think is important for others to know. We blog about things that hit us deeply. For readers, it's a voyeuristic look into our personal worlds.

Students: What do you think blogging has done for disability studies, the disability community?

Elesia: Given a forum, people with disabilities may express, firsthand, what's really on our minds. This reminds me of Community Based Participatory Research, which is an interdisciplinary research methodology in which scientific professionals and members of a specific community work together as equal partners in the development, implementation, and dissemination of research that is relevant to the community.

Recommended books on disability/disability rights:

Claiming Disability: Knowledge and Identity, by Simi Linton

Disability Theory, by Tobin Siebers

No Pity: People with Disabilities Forging a New Civil Rights Movement, by Joseph P. Shapiro

Nothing About Us Without Us: Disability Oppression and Empowerment, by James I. Charlton

12 May 2010

AASPIRE Healthcare Study 1

AASPIRE's new survey compares the healthcare experiences of adults on the autistic spectrum, non-autistic adults who have disabilities, and non-autistic adults without disabilities. There are two main goals for the survey. Goal one is to see if there are differences in how people feel their healthcare needs are being met and how satisfied they are with their care. Goal two is to compare the barriers to healthcare for the three groups to see if there are differences in the types of things that make it hard to get health care.

In the second part of the study, AASPIRE will conduct in-depth interviews with about 30 adults on the autistic spectrum. The main goal is to get an in-depth understanding of autistic adults' experiences and recommendations about healthcare, including examples of what worked or did not work and what they think would help them get better healthcare. If eligible, you can choose to participate in an interview via email, online chat, or telephone.

Participate in a New Gateway Study

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.
Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.
graphic  representation of the preceeding paragraph
To participate in the AASPIRE Healthcare Study and any of the Gateway studies:

  1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org.

  2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.

  3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.

  4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.

  5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.
graphical  representation of the preceeding five steps
If you would like to learn more about AASPIRE or the Gateway Project, you can

04 May 2010

Breaking Boundaries: The Art of Alex Masket

This film has been accepted to the Berkshire International Film Festival. View and vote for this awesome documentary by clicking here (scroll down to Breaking Boundaries)!

Breaking Boundaries spreads a positive message about autism that is free of fear-mongering and pity, a terrific way to raise autism awareness.

Dr. Kathleen Hull of Rutgers University spoke eloquently on the subject of autistic communication, expression, and humanity. She put it well by stating that instead of pathologization of autism, why not explore it and discover how autistic individuals see the world? This idea is fundamental to education. Why not approach autism as a theme and open our minds to ask what it means to be a human being.

As mentioned in the documentary, Alex's nonverbal nature has forced the art community to question standard communication, as his artwork is deeply articulate. Alex's communication and language is visible. And it teaches us that verbal ability is not linked to our intelligence or to our ability to communicate in powerful ways.

Alex's mother made an especially poignant statement by expressing that Alex has spent enough time trying to be who everyone else wants him to be. Now he is showing us who he is, as in: This Is Me.

Elesia gives this film two thumbs up! What a wonderful message. What a wonderful world. What a wonderful way to reinforce the concept of a social model of disability.

Check out Alex on Facebook by clicking here.

You may peruse Alex's Photo Gallery at his website (www.alexmasket.com).

World Autism Interviews: Spacey Hippie/Portland, Oregon

E: You are self-diagnosed as being on the autistic spectrum. What do you feel are the main barriers that prevent self-diagnosed autistic individuals from gaining an assessment if they wish to pursue a formal diagnosis?

Spacey Hippie: the main barrier is: i don't know who to ask. one of the questions i have is: where should i go, who'd be best? i have the hardest time finding out where to go n how to get there

i've taken a few autism tests online (scored as expected, just over the line) but that's not accredited, it's only a guide: like astrology (colloquially, entertainment only) legally you can't take it to anybody

mostly what i've found is absolute nothing: as if it's all in my head. and that's the real barrier: what you get back from the world is the same as if everybody's like that, cuz no one has the authority to say: yeah, here's what this is, n now we're gonna give ya what ya need (n then knowin whatever that is already as they're worthy of that authority) n often no one wants to speculate on any subject involving empathy so they're either... really for it... or refuse to have an opinion...

n that's if you have health insurance which i do, from being on disability... but if i didn't have that, there'd be no way...or i'd have no clue

the biggest barrier is someone like me is... powerless, uninformed

E: You are diagnosed as agoraphobic. What unique challenges do you face when pursuing assistance and services as a person who is agoraphobic and autistic?

Spacey Hippie: well, first thingy is: people don't believe in it... or they have no sympathy no understanding comprehensive compassion... n don't have to

cuz everybody feels a little social anxiety, n they think that's all it is... n that i just simply refuse to get it... n therefore, i'm bein a big baby... at which point, no respect for me... so it's a form of bigotry... totally... n why am i so nervous all the time? i dunno, yer job requires dispassion?

my brain actually shuts down... i become intellectually disabled, i lose half my IQ: forget how to make change, tell time n then i get taken advantage of easy... so now we know why no one was acknowledging... n now i'm bein paranoid

where my autism kicks in (n it was there from the start) is: i can't deal with corporate... i can't handle a phone call... objection: pressure

n in order to get help with that that's just what i have to do... which i'm no good at... n it damages me, mere attempting... n little thingies, like sitting in the waiting room for 45 minutes filling out forms... dude, i can't handle that... tough, too bad... only option... n then what the appointment or phone call... or runaround turns out to be... (and i knew it)

so there's no avenue set up for me to follow... anyways it... is a fruitless endeavor, no solution possible... but no one will admit they don't have every answer i could ever possibly need initially... n corporate = zero flexibility...

but just that right there: that i can be so easily dismissed... they know i'm a sap, or too silly... so therein is sufficient auto-irony (n society creates its own satirists)... but that system is not designed to target n fell people like me, is it? it's just we're a minority...

i need an in home care worker... n not like an elderly or physically disabled person (i can do my own laundry n dishes) but it's such an abstract concept that people don't hafta understand it if they don't want to... no one's ever heard of such a thing... i go away feelin silly, which is my problem being so alienated...

frustrating, desperation n then i become too absorbed in it n think "man, my life is such a mess" ...and i really need to do something about it, but i can't, or not well enough, so i fail... but there's nothing else to do... if i become unable to do anything, even just watch tv... debilitating... whatever my affliction, i feel like i'm in prison

E: What do you feel is assumed or misunderstood about people who are autistic as well as agoraphobic?

Spacey Hippie: seriously, no one knows what agoraphobia means... it's from the greek... fear of the marketplace... crowds, basically... being around people is associated with...things going badly...

n as for autism... if you think of a savant, you know there's something missing... i think it's confused with Tourettes and such, but society so pushes individuals to excel... n justa fit in... that we forget that the so afflicted are not these like rare anomalies, not like dots on a map... some static on the species, or people missing a circuit... it's more of a gradual thingy n those with it only a little... learn to hide it, compensate... even never know they have it... n those of us who can't do that... that's one of the functions we're missing

n if it's a really super ordinary thing, like agoraphobia... going to the store, going out to check the mail... my friends don't understand... they think i'm... whatever... being silly, extraordinaire...

i'm the guy who can't function without an assistant... who never made enough money to be able to afford one (some people need glasses)... and on needing an assistant: there's a million people on this planet who can solve this problem in 10 minutes, i need to talk to one of them for about 10 minutes

E: What is something you would like people to know about both autism and agoraphobia?

Spacey Hippie: to be without wisdom or reason is both unwise and unreasonable

n here's the part where i say, "we rule," or, "we rock" (n some of us do, back n forth... it's what we do)... n i don't mean that disparagingly... n yes, funny, but in the nicest possible way, that maybe many people really don't even see... we needta be looked after... n more'n jus put inna box, ok?

(on Fraiser, the other day) Freud said "we need 2 things to be happy: work and love" ...translation: something to do n someone to share it with

E: What keeps you going when life overwhelms you?

Spacey Hippie: Dilbert sez: the cure for loneliness is feeling like yer being listened to... getting someone on the phone is usually the highlight of my day... especially someone i know... or someone who can help me

i feel like i'm the only musician in town that doesn't have anybody to jam with (that wants one)... i'm a musician, i jam a little... but ya hafta play well... otherwise it's embarrassing... i should play daily, but it's hard to when yer depressed...

like, what i did just now is: dishes (add house cleaning to accomplishments); and it'd been pilin up for a coupla daze, n my once in awhile scrub out the sink didda good job, hooray... now i feel like jammin...

E: Tell me about your comic Dudeman.

Spacey Hippie: i should pack the whole thing up n label it: "things you tell liars" ...this is what inspires dudeman episodes... all the frustrating things you think of, that need to be said, and often aren't:

wow, you get to be totally be like that n no one stops you?

izzit that you want me to... guess?
izzit that you want me to... guess...incorrectly?
izzit that you want me to... keep...guessing?

E: Thank you for this interview.

Click here to check out Dudeman. Click here to visit Spacey Hippie's website.

01 May 2010

IACC Appoints Ari Ne'eman of ASAN

Interagency Autism Coordinating Committee (IACC)

The Autistic Self Advocacy Network applauds Department of Health and Human Services Secretary Kathleen Sebelius' appointment of Autistic Self Advocacy Network President Ari Ne'eman to the Interagency Autism Coordinating Committee (IACC), which is a Federal advisory committee that coordinates all efforts within the Department of HHS concerning autism. ASAN has given regular public comment at IACC meetings and looks forward to continuing to be an active part of the IACC process.

To learn more about the IACC, visit http://iacc.hhs.gov/

A news release has been posted on the HSS website:

Related articles and blogs: