ASAN’s letter regarding under-representation of autistic people on IACC:

Filed Under (Activism, Autistic Self Advocacy, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 29-10-2014

I am adding this press release as the founder and director of The Autism Acceptance Project and critical disability scholar who supports autistic-driven agency and political mandates for autism. I would like our Canadian agencies to consider the same and question how we might also urge our politicians to mandate autism agencies to do the same. Please share:

FOR IMMEDIATE RELEASE

October 29, 2014

Autistic Self Advocacy Network applauds letter from Congressional champions urging increased representation of autistic adults in Autism CARES Act funded programs.

WASHINGTON, D.C.—The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%).

“HHS should take the opportunity posed by the Autism CARES legislation to address long-standing inequities in federal autism policy,” said Ari Ne’eman, President of the Autistic Self Advocacy Network. “We applaud Rep. Schakowsky and the other signatories to this letter for their leadership in urging real inclusion of autistic people in federal autism policymaking.”

The signatories to the letter recommended increasing representation of autistic people and organizations run by them on the IACC, ensuring that autistic people participate in training programs funded through the law and other measures designed to enhance participation of autistic people in programs designed to serve them.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.

A New Kind of Autism Lobby: A Proposal

Filed Under (Ableism, Acceptance, Activism, Advocacy, autism, Autism and Intelligence, Autism and Learning, Charity, Communication, Community, Critical Disability Studies, Language, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 09-05-2013

I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.

I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.

Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?

Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.

I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?

We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.

As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.

Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?

Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:

“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)

Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:

This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)

Sarrett further states that,

“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses ‘sphere’ instead of ‘spectrum’ which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”

She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.

Reference:

Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.

Repost from 2007: A Review of Autreat

Filed Under (Acceptance, Advocacy, Organizations/Events) by Estee on 13-08-2010

Last weekend, I attended my first conference in over two years. It was the Blogher Conference in New York City where I met up with fellow autism-mom bloggers. I remarked on how I noticed the positive attitudes towards autism among parents that wasn’t so prominent a few years ago.

In response, I got a comment stating that I should attend Autreat. Well, I had in 2007. Back in my earlier days, because the climate among parent communities was so negative, I sought out autistic individuals who shaped my view of autism and assisted Adam and I on our journey. I thought instead of having people sort through 800 pages of archived Joy of Autism blog (on the right margin), I’d dig this up. It’s a copy and paste job, so  I apologize in advance if the formatting appears off. No matter how I tried to fix it, it just kept reverting into a mess.

I called this post:

Are We Listening?


The audience waved their hands in the air – the deaf sign for waving. There were others who

rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in

the front and squealed in acknowledgment when the speaker said, “just because you

don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to

process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other

setting, this highly intelligent, non verbal autistic eleven-year-old may have been

asked to leave, or others might have stared, thinking that he didn’t

think of anything at all. Yet Drake kept doing this. He sat longer

than any other eleven-year-old I’ve ever met and made his noises

in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter, a keyboard with a small

screen that speaks for him after he types his sentence.

I sat in the room and wished Adam was with me, his soft fiveyear-

old hair brushing my jaw, snuggling up to me as he always

does, and then taking breaks to jump up and down. Yet, I felt

comforted in knowing that he would be there next year, and the

year after that. I felt comforted that all of these people are him

years from now, and how privileged I felt that they were paving

the way, for it is a tough way, like swimming up a rapid flowing

stream.

It is rare to sit in a room with so many other autistic people, some

walking back and forth in the lunch room humming to themselves

in a heightened perhaps even ecstatic state, where I can only

imagine in other less accepting settings, would be frowned upon.

When I came to squeeze into the small space where this young

man hummed to deposit my lunch tray, he politely moved away to

make room for me, extremely aware despite the fact that some people

might believe otherwise.

When I saw him next time in the leisure area, he was asking others

to play a board game with him. Other autistic kids were hanging

out together, and sprawled themselves out on couches in front of

the TV, not unlike other teenagers. Around the grounds, people

wore badges that indicated if they wanted to talk, if they would

only talk to people they knew, or if they did not wish to talk at all.

There were many times I wanted to flip my own badge that

indicated the latter – as I am a person who likes to absorb and

observe, yet have been taught to socialize and be diplomatic and

suffer from a compulsion to keep that impression going. Although

it’s a skill I’ve acquired, I still find it exhausting. I wished that

those badges existed at the many functions I have attended,

where most people pretend to be something that they’re not, or

interested in things that others say that they actually have no

interest in at all. I consider all the wasted time I’ve had to spend

doing “small talk.” and all the time I spend in explaining life as we

know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by

trees. My hair unkempt and my skin moist from the humidity, I

unraveled. I could do what I needed to, to think. We were free to

lie down during lectures, or roll up and be comfortable on the

otherwise uncomfortable frayed wool couches — remnants from

the 1970’s. No lights were on in the summer heat, the hardworking

garbled hum of old air conditioners tilting precariously in

the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried

to figure out how to manage all the issues confronting autistic

people today, how to give another message to parents that there

are more options than they are aware of – because they don’t hear

it when all they hear about is ABA (in Canada specifically). The

atmosphere was welcoming, where fear and confrontation were

strangely absent. Strange because it is a sad reality of autism

politics these days – where some non autistic people never get

exposed to disabled people to hear the real views and issues. It

was strange as it was relieving. This was autism, and it was

comfortable. I didn’t have to be appropriate, I could say when I

had to leave without a guilty fuss. No one will judge me here. And

no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced

before, and I will want Adam to come again so he too can be

fortified. Adam’s fortification is what’s tantamount here, as I try to

raise him so that he knows who he is with autism, amidst a world

that doesn’t understand it or explains it inappropriately. It is

important that he understand himself as not a defect, but as a

person. It is why we as parents cannot accept misery rhetoric,

because no matter what level of “functioning” (that term means

nothing as it has no bearing on either intelligence or awareness), no

autistic child should have to grow up in an inhospitable

environment that threatens their self-worth. Inhospitable and

unsafe environments are those in which we seek to normalize and

reward normal responses to tasks where the autistic response is

never acknowledged, rewarded or accepted, thus valued. By never

rewarding an autistic person for being autistic, we threaten their

self-esteem and identity. Most will grow up being confused

because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand

autism – because most of them currently do not. They do not yet

understand how an autistic person learns. They turn to

operationalized methods that all seek at this time to make the child

not autistic, without valuing the autism. DRI and RDI are also

designed to “create a mind,” or have a child “play normally” to

which the autistic audience gasped in disgust. What are those

“gurus” implying? That the autistic people who could sit and listen,

and contribute, either verbally or in writing need to re-create their

minds in a fashion that suits the rest of the so-called “normal”

population?

I surmised that many parents are and are reluctant to give up

ABA becasue they may not understand that there ARE so many

options and so many opportunities to educate and for a great

quality of life. The latter is what hopefully unites us. What

disunites us is the definition of what that quality of life entails – a

life with or without autism. I seek the former because I have seen

that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car,

but rather, what you make of your life, and your attitude. Autistic

people are capable, and how can we express to parents who only

see — particularly those whose children who are more profoundly

affected by the disabling aspects of autism – sensory issues,

anxiety, no spoken communication – that their children are there

and aware.

How can we express that the most important thing – our

children’s right – is to be who they are, but to provide AC

(augmentative communication) in the absence of speech, instead of

trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must

learn how an autistic person learns, and not expect a typical

response that can render an autistic person a robot. (All an autistic

person ends up learning is to respond the way the instructor wants

so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a

way that is not natural – for our benefit so WE can feel satisfied

that the child has responded – that the child may in the future as a

result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept

your autistic child for who they are because this will allow

them to know themselves. Pave the way for acceptance and yes,

teach. But learn first. Learn how an autistic person learns and keep

trying to adapt until you find the method that clicks with your

child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project,

but rather, treat them and raise them as a child. Model actions so

that a child can learn. Do not expect typical answers to “what is

this?” and other typical questions. Find out ways to pull out what

the autistic child does know. Do they know and answer better on

the computer? Then use that. Accept all forms of communication,

for they are valid and real. We are all obligated as parents to find

the AC that works best for our children. That is their right to have

over and above all those other therapies and monies wasted on

“behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to

understand their sensory needs. Do not offer artificial

reinforcements, like “good talking!.” They are fake and the child

will know it. Accept echolalia as sometimes the only language a

child can retrieve, particularly in moments when they are

overwhelmed, and then listen to what their body language and

faces are telling you.

Most parents want the best their our children. The difference is in

how we regard autism – a medical disease, which it is not, or a

disability with social implications, in other words, we have to deal

with the societal barriers that obstruct the opportunities for our

children. We cannot accept the latter. We must accept autism and

move on with the real barriers – the attitudes that will continue to

proliferate segregation.

We need to be advocating for inclusion in the school system and for

the accommodations that need to be made to acquire that. We

need to educate others as to the value of doing this – for all

children, not just the disabled ones – in cultivating sensitivity and

understanding. We need to teach our children how to advocate for

themselves – yes, even the non verbal ones. And for those who are

more profoundly affected by the more disabling aspects of autism,

we can seek the help of other autistic individuals to be mentors

and to advocate for the services that do not degrade and oppress

others.

The one thing we must do is to make other parents aware that

there are so many options about which they hear little or are

belittled by an ABA movement that continues to espouse

inaccurate facts about ABA under the guise of false scientific

“proof.”

We need to stop participating in genetic research studies which

determines only “prenatal risk” and threatens the existence of

autistic people. This research is done under the guise of providing

“better and earlier interventions,” which are non existent. What

babies need is love, support and engagement like any other baby.

The only purpose of this research is to determine genetic risk

factors. We do not hear about research that seeks to help autistic

people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more

disabling aspects of autism) with respect (respecting the autistic

person’s right to exist) and realize that there is life beyond an

over-simplified “cure.” Further, helping the more disabling aspects

of autism (anxiety, sensory issues) can exist outside of a “cure” for

autism.

I urge every parent (but for those who visit this blog, I bet I’m

preaching to the choir), to actively seek out the alternatives and

become proactive in not accepting strategies that change your

child to “appear normal” because they will ultimately be very

damaging to their self-image as teenagers and adults, and we will

have greater problems to contend with later. There are options

outside of ABA which takes time from you to actively watch and

listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least

dangerous assumptions” about your child. Or as Douglas Biklen

said, “presume competence.”

“The least dangerous assumption states that in the

absence of absolute evidence, it is essential to make the s

assumption that , if proven to be false, would be the least

dangerous to the individual.” (Zach Rosetti and Carol Tashie

from the Communicator, Autism National Committee Newsletter,

Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not

look you in the eye are “not there” or “not aware,” or “cannot

speak for themselves” is an extremely dangerous assumption. All

people can speak for themselves in many different ways.

Are we listening?

PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 6/29/2007 09:20:00 AM

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.