Internet Resources
The self-determination movement was founded on four basic American principles: Freedom, Authority, Support, Responsibility
National Program on Self-Determination
Advocacy effort focused on the UK Government's intention to change the Code of Practice on special educational needs and the Regulations.
People in the Asperger's community are not saying their disorder neatly explains the killings. In fact, some are upset that Freund's crime is being linked to Asperger's. "What bothers me is the implication that there's something about Asperger's syndrome that causes people to do this kind of thing -- kind of, 'Look out for the dangerous Asperger people,' " said Jerry Newport, 57, who founded a Los Angeles support group for people with autism and Asperger's in 1993. He now lives in Tucson and travels frequently to speak on the topic. "The only connection you can make between Asperger's and what happened is that his Asperger's syndrome may have set him up for ridicule as a child," Newport said.
Rosie Mestel, Los Angeles Times
The first section of the chapter looks at the concept of 'disability', and discusses the ways in which the words 'disability', 'impairment' and 'handicap' are used. The second section of the chapter looks at attitudes to disability. It considers attitudes over history and across cultures, as well as some contemporary attitudes in Australian culture. The third section of the chapter provides some statistics about people with disabilities, and some information about their situation in Australian society.
Disability Action Incorporated
Discusses how strong, informed, persistent public advocacy by parents on behalf of young children with autism was instrumental in bringing about a total system change in special education services in Howard County, Maryland.
First off, I do not regard myself as disabled in any way. I'm very much aware of the cognitive differences between myself and the majority - I've been coping with them for as long as I can remember - and I see no evidence of disability on my part at all. I shall speak plainly about how things look from my point of view in what follows. I think this is only fair, since some others are so forward as to call me a disease, and assert that I must be "cured" - i.e. exterminated - and expect to be applauded for this.
Alan G. Carter, Dan Olmsted, UPI
Unlike deaf culture or blind culture, autistic culture has only become possible in the age of the Internet. The Internet and its many chat groups and lists dedicated to people diagnosed with an ASD have encouraged the rapid growth of a thriving community.
I'm a person with Aspergers Syndrome and want to help others with Aspergers Syndrome establish online communities and informational sites relating to A.S. I want to provide these hosting services for Free to qualifying websites already established or that are new projects.
Assertive parents express themselves clearly, directly and without guilt; are not intimidated; prepare for meetings; stay together; are informed; keep records; collaborate; effectively communicate; demonstrate self-confidence; advocate effectively; are self-reliant and independent; persist; analyze problems; organize to effect change; are positive and strong; have pride; encourage others and hold people accountable.
Auties.org is a website to promote the entrepreneurial (self employment) skills of people diagnosed on the Autistic Spectrum world-wide and to provide links to Autie-Friendly businesses of various kinds. Auties.org is run by a small committee of people formally diagnosed as being on the Autistic Spectrum and those who diagnosed members deem to be 'Autie-Friendly' with a view to: * Promoting public awareness of the wide range of employable skills of ALL people on the Autistic Spectrum at all levels of functioning and ability. * Provide the possibility for people on the Autistic Spectrum to advertise their skills directly to potential hirers. * Provide listings of goods/skills/services which are believed to be particularly 'Autie-Friendly' * Provide potential peers/mentors to those interested in learning similar skills from someone who is, themselves, on the Autistic Spectrum. * Provide a model of self-determination for those on the Autistic Spectrum outside the control of non-Autistic professionals and their Agencies, especially where those services are, for various reasons, lacking. * If necessary, provide an affordable Autie-run, Autie friendly consultancy service to help newcomers in understanding the basics of employable skills, self employment, dealing with the public, keeping safe and self promotion necessary to getting paid work.
Redefining Ability and Quality of Life
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
Derogatory labeling and panic-ridden descriptions of autism do nothing to enable autistic citizens to function and communicate more effectively; rather, they dehumanize and incite fear towards members of cognitive minorities, in the same way that racist language demeans, dehumanizes and incites fear towards racial minorities.
Kathleen Seidel, neurodiversity.net
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
An exchange of correspondence with Dr. Thomas Insel, Director of the National Institute of Mental Health, concerning the manner in which autistic citizens are frequently described in autism awareness and fundraising campaigns.
Kathleen Seidel, neurodiversity.net
What's good, and what's not good, in the world of autism treatment and research?
What is good and bad in media coverage of autism and the lives of autistics?
Autism Diva rates it.
"I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world looks at me and go, 'God! I wish I could do that.' No, I am not changing anything."
"I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world looks at me and go, 'God! I wish I could do that.' No, I am not changing anything."
Joseph Shapiro, National Public Radio
Overall, I'm left with an overwhelming feeling that the pro-cure camp are getting increasingly desperate. Just about every statement on that site is incorrect either factually or by omission. Its in fact so bad that I started to wonder if it was indeed misinformation as I originally thought � maybe it was just simple ignorance? I'm still undecided but I hope that if you've found this site (I doubt I'll get a link back somehow!) that your eyes are open to the dangers of such wilful misleading of people in such a shabby, grubby and underhand way.
This is the only autism advocacy organization dedicated to Social Justice for All Citizens with Autism through a shared vision and a commitment to positive approaches.
An autistic-run self-help and advocacy organization for autistic people. The best advocates for autistic people are autistic people themselves. Autistic lives are meaningful and worthwhile lives.
Many autistic people have at least some language skills, and have started to speak and/or write for themselves about their experience. Along with neurotypical allies, they have started the autism rights movement to advocate the rights of autistic people. The use of the Internet has made it possible for autistics to present their perspective when they do not have the communication skills to do so offline.
It is generally well accepted that autistics have their own culture, and unique style of communicating. Communication differences are one the main criteria for a diagnosis of autism. Those who are non-verbal or semi-verbal, and are able to use a computer, can join other members of the community in online forums and chat rooms to socialise, for many this is the only social contact that is not stressful. Regarding unequal treatment, and less power, there are many barriers to full-time employment for autistics and this significantly reduces life opportunities, financial independence, and security. Autism is present from birth, so therefore it is certainly involuntary membership in the group.
1. What is a diagnosis, a historical perspective? 2. The history of Autism as a medical term. 3. Current understandings of Autism. 4. My personal understanding of Autism.
Our aim is to portray some of the realities of living with autism. (NOTE: To gain the full meaning and benefit from this site, please devote the time to read from beginning to end.)
Their move mirrors that of some campaigners for the deaf who recently complained about 'oralist' attitudes that victimise deaf people. Paddy Ladd, the deaf writer and campaigner expressed frustration in his 2002 book Understanding Deaf Culture that deaf people were treated not as a 'linguistic minority' but as group of people needing to be 'cured'.
David Harrison, Tony Freinburg
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
There is an increasing number of autistic adults empowered by technology�computers, access to the Internet, assistive technology such as text-to-speech synthesizers, and so on�who are writing and speaking and providing much needed perspective on what helps and what does not, and calling attention to areas of struggle in day-to-day living that need much more attention and funding than they get, relative to the attention and funding dedicated to searching for a �cure� for autism.
Kathleen Seidel, Phil Schwarz, neurodiversity.net
Autistic Pride Day is a day that adult autistics chose to commemorate the fact of their autism and the fact that they were proud to be autistic. It should not be confused with Autism Awareness which is a campaign set up and managed mostly by parents and carers of autistics to highlight what they see as the tragic blight of autism.
June 18th is Autistic Pride day around the world. The day is for positive events relating to autism spectrum conditions, for people on the spectrum and their families and friends. The autism spectrum includes autism, asperger's, hyperlexia, PDD-nos and dyspraxia.
One of the saddest, most chilling aspects of reading the words of those who claim autism is solely mercury poisoning is the cheapening of the word 'autistic' to reflect illness, negativity, inhuman, uncaring, amorality. To those who would rob my daughter of the identity she has I would like to ask: why? So your children may be ill. Your children may have been misdiagnosed as autistic and your children may be in pain. None of that gives you the right to denigrate the person that my daughter and thousands of other autistics is/are. Imagine the public outcry if we suddenly decided that a dark skin was a 'treatable illness' and that we could 'reclaim our dark-skinned children'. If your children had dark skin as, for example, a result of being burnt in a fire, then no-one would deny them medical treatment. But would it be right to categorise all dark skinned children in this way? Of course not.
I've been very critical on this blog of a book called Evidence of Harm and its author David Kirby. The book claims to offer 'evidence of harm' in that American children have been systematically poisoned over the last few decades and 'made' autistic. Aside from the many factual errors in the book and aside from the poor science used to underpin it there are larger issues to do with making assumptions about autism and autistic people that this book doesn't just use but actually swallows wholesale.
Plans are already being made for this years Autistic Pride Day on June 18th. If you are a member of the autism community, or autism parents community, you might already be making your own plans for Autistic Pride Day. This years theme is "Celebrate Neurodiversity". Autistic Pride Day is held on June 18th each year and is a celebration of the unique qualities of children and adults with autism and asperger''s, and their families.
Amy Nelson, Aspies for Freedom
The autism industry's greatest crime against families is that it intentionally seeks to destroy parents' joy and pride in their young children. To ensure a steady supply of new customers, autism is described in the most negative terms imaginable, with the goal of convincing parents that their child is a pathetic, defective sufferer whose birth has blighted the family. The success of this propaganda is measured in how thoroughly all semblance of a happy family life has been extinguished.
Autistic awareness, to me, is a movement for (neurotypical) parents of autistic children. it centers on bringing understanding of autism to the general public, and while this is a laudable aim, I do feel that parts of it have gone sadly awry. In some circles 'Awareness' seems to have become confused with 'hatred', opinion and personal disappointment presented as information and fact and compassion has been replaced with self indulgent pity. In an attempt to become all things to all people, awareness seems to be more about the parent's struggles than the child's humanity. Awareness is about people who are broken. 'Awareness' just isn't doing it for my son.
Beth Clark, Silver Cuckoo Special Needs
In a newer lower court case, the Wynberg case, it would appear that autistics are worthless and really not human at all unless they get the extensive, intensive and expensive therapy. It appears that the ABA/IBI parents don't care that diabetic children and children with cancer and/or other disabilities will have to go without truly medically necessary treatment if the government gives them their "caviar" level of special education desires.
...As for "operationalizing" it makes me queasy. I mean -- it smacks so much of the "superior" white anthropologist observing the exotic and primitive, naked savage and making notes on his supposed motivations.
This year of our Lord 2005, toward the end of July a most remarkable event occurred that I want to tell you about. It was called Autscape and marks a first in the UK, the first genuine retreat for autistic people in the UK. Something we did for ourselves, and something I think we did very well. Whilst not the first event of its kind in the world, we had a lot of support from those who have organised Autreats, in the states before, it was a big happening in this country. For me the big thing was to show those parent and professional run organisations for Autistics that they do not own Autism, we do.
Try to maintain a good working relationship with the doctors, therapists, and teachers who work with your child. I have heard many stories of parents who are at an impasse with their child's teacher or school administrator. It is heartbreaking to hear of a child who is unable to receive services due to a breakdown of communication. At times such as these, tempers flair, and drastic measures are often employed. Although there may be occasions when legal action should be taken, it is always wise and in everyone's best interests to try to maintain a good working relationship with your child's service providers. Remember to encourage them, and to thank them for a job well done. Remember that they are people too; a kind word, smile, or friendly handshake can go a long way toward healing damaged relationships, or even preventing breakdowns from occurring. This does not mean that you should "sugar-coat" everything you say to others; in fact, it is best to tell the truth, even when that is difficult. However, remaining respectful and professional even when there are tough issues to be dealt with, can prevent a multitude of problems and ensure that a mutually supportive environment is maintained.
People who know something about autistic adults and their advocacy efforts know how individualistic and non-organized it is. In fact there is no "autistic underground" as an organization. It is a state of mind, mostly... The reason for "Mind the Gap", seems obvious to Autism Diva. but perhaps it isn't for others. There is a major communication gap and cultural gap between the average autism spectrum person and the average non-autism spectrum person (or, neurotypical), though some of us communicate with those of the other group quite well. Usually, there is a serious power gap between the average autistic and the average non-autistic, with autism spectrum people being on the lower end of the power scale.
Thankfully, the blog is an equalizer of humans, serving the autism community well at this point in time. It is a universe, a "sphere" without rules, without barriers -- faceless, sometimes nameless. It transcends some physical and attitudinal barriers and in this realm, one cannot judge another based on appearance or so-called levels of "functioning."... When writing, an autistic person can experience inertia. Blogs enable time to pass without further handicapping the autistic person to communicate when the will to do so is fluid... Blogging and email communication are invisible, fluid highways to change the face of rights and acceptance of autistic people as thinking, vital human beings and further, raises issues about how we treat disabled members of society as a whole.
This is a story about two parent advocacy groups, two programs focused on genetics research on the autistic spectrum disorders, and the production of material, informational, and institutional resources.
We want others to recognize that we are competent people who do make our own decisions about our lives in our own way ~ and we will work together to overcome other people's ideas about what we can and cannot do.
This is written primarily for those I meet face to face, or at least in real life. It is a list of suggestions, intended to make our time together easier and more enjoyable, hopefully for the both of us... This is not a generic guide to interacting with autistic people; it's a specific guide to interacting with me. Some of these points apply to many, in some cases even a majority of autistic people, but you won't know which ones unless you ask them. In fact, the most important point in this document is that it's much better to ask than to assume you know.
What is most relavant to the claims is the claims themselves, not the person making them. However, this doesn't mean that it isn't relavant to point out that the knowledge used to form a claim was acquired though either experience or academics...
The guidelines in the recent government white paper Valuing People not only encourage consultation with people who uses serviceson all levels but also create barriers through restrictive deadlines to meaningful involvement being achieved.
People with autism should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism.
National non-profit organization based in Washington, DC that works to assure children meaningful and continuing contact with both their parents and extended family regardless of the parents' marital status.
Because I do not fit the publicly and strategically declared definition of autism, my views are excluded from organisations which claim to represent me.
To this day, I hate puppet shows. I hate those who want to control my movements and tell me what to say. Moreover, I hate almost anything that comes with strings attached... Until the self advocacy movement began, people with developmental disabilities were the only minority not to lead their own movement. The self advocacy movement was to put an end to this inequity. Unfortunately, it didn't. It hasn't. It can't. Not the way things stand now.
To those who disagree with our stance on political issues, we welcome peaceful dialogue, difference of opinion, and free exchange of ideas. We can build a nonviolent world that is home to all, but first, we must raise the level of discourse to include respect and civility. Effective peace-making leaves no room for name-calling, which only perpetuates violence and reactionary outcomes.
Sabrina Sideris, Carla Friedli, Colorado Daily
Whatever disagreements I have with what Sue Rubin has to say, I think it's significant that she has been enabled to say it, that she has chosen to say it, and that she has said it to such a wide audience. To do so she's had to get access to technology and training so that she can say it in the first place; she's had to get enough support that she doesn't need to spend all her time just trying to manage the basics of life or even the basics of college life but has time to say it; she's had to organize the assistance of other people to make a documentary; and she's had to ensure that those other people didn't take the documentary over and narrate the same old "Hear Our Silence" stuff that many neurotypicals seem to think is the only story that can be told about autism.
The goal of the Delphi technique is to lead a targeted group of people to a predetermined outcome, while giving the illusion of taking public input and under the pretext of being accountable to the public.
The instituting of training and management practices within day centres, group homes and institutions for the intellectually disabled are a consequence of the perception that intellectually disabled people have no capacity for sociality as they are.
I hope this guide serves as a resource for those interested in affecting public policy that fosters the independence, inclusion and empowerment of persons with disabilities and their families.
Many able people with Autism feel deliberately excluded by the community; especially by the mistaken portrayal of autistic people as always preferring to withdraw into 'their own little world.'
Self-advocacy is a life-long endeavor, and the teen years offer a particularly fruitful moment for cultivating self-awareness, self-monitoring, and deeper exploration of what it means to be autistic, by way of peer discussion groups.
"We want respect for our way of being," said Camille Clark... "Some of us will talk too long about washing machines or square numbers, but you don't have to hate us for it."
Having children who are "different" is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one... Organizations that seek to fund this �difficult and mysterious disorder,� to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren't they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?
I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.
Rantings and musings from your Ragged Edge Online editor.
A disability policy change agent's ultimate goal is to develop a long-term advisory relationship with key policy-makers so that when important decisions are made, the policy-makers rely on this individual for advice, counsel and support.
Ivey and French have formed a group called Justice for Autism with Community and Kindness (J.A.C.K). The group's goal is to establish a residential facility in Hancock County for the treatment and education of children with autism.
Shannon Chisholm, Ellsworth (ME) American
Some places talk about 'empowerment' when they really mean just putting clients in pseudo-staff roles and letting the exact same power structure continue. And of course the group I attended that was supposedly run by disabled people, where the entirety of what the 'leader' said was whispered into her ear by the non-disabled 'advisor' and the same 'advisor' exercised a lot of non-verbal control over what other disabled people did and did not say, was one of the best examples of 'empowerment' gone wrong that I've ever seen.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
For every parent eager to "recover" their child and "lose the diagnosis," there are autistic citizens who will always have the diagnosis and will always wear the label, and who are affected by the manner in which that label is bandied about by those who hate what it represents to them.
Autism Diva has already awarded the crumpled tiara to the MIND institute for the 'Cold Hard Facts" campaign. Autism Diva will now cast a cold hard look at MIND institute's directors for allowing this abuse of Jorge and Brianna (or "Jorge" and "Brianna") to take place in public with their apparent communal blessing.
There was a time when it was considered perfectly proper to keep blacks in their ghettoes, gays in the closet, wheelchair users hidden from view... women in the kitchen. Just so that those who were uncomfortable with those groups didn't have to deal with them. All of that was the easy way to deal with the problem, but it wasn't the right way to deal with the problem. The right way -- which, unfortunately, was also the much more difficult way -- was to change the society, to liberate those who were being oppressed for no reason.
Women have had their turn; gays have had their turn; paraplegics have had their turn; minorities have had their turn. True, their work isn't done yet, but things are a damn sight better for them now than they used to be. It's time autistics had their turn. Autistic Liberation Now!
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
Patricia E. Clark died this morning of complications from a stroke. She was Recording Secretary for the Autism Society of America, Georgia Chapter, and a contributor to the book, Women from Another Planet, an anthology of writings by women on the autistic spectrum. I will miss her, and I will miss her insights. Here are some of those insights, culled from newsgroup posts she made over the past few months.
Kathleen Seidel, neurodiversity.net
This past year, I organized a film series at the Asperger's Association of New
England for my peers on the autism spectrum, and their family, friends, and supporters... The goal was more than simply getting people together to socialize. The films were chosen because they highlight issues impacting critical aspects of living fully as a person on the autism spectrum: identity and self-esteem, membership in a community with a history and culture, and the realities and possibilities of interaction with the majority non-autistic population. After screening each film, we opened the floor for discussion of the film and the issues it touched upon. This paper will illustrate the ideas behind the film series and the process and some highlights of the group discussions through exploration of the four films we screened this first season... (I)t is a narrative of the purpose, process, and outcome of the choice of the films for the series and the screening and discussion of the films that took place.
On the Congressional hearings
I don't consider my life to be blighted because my son has unusual body language and sometimes does not speak as clearly as others. I can understand him just fine. What gives me cause for worry is that, some day, he is likely to be rejected when applying for a job for which he is well qualified, just because of the interviewer's prejudices. Our entire world is blighted when millions of intelligent, competent people are shut out of the workplace for no other reason than because they look and sound different.
Stephen Shore has recently finished his second book that focuses on helping those with autism and Asperger's syndrome become better advocates for themselves. Shore says better education and self-advocacy are the keys to many problems faced by people with disabilities and their communities.
Bridget Samburg, Boston Globe
The conference addressed different aspects of the developmental disorder and its effect on autistic persons and their families, and was sponsored by the Francis and Ann Curran Center for American Catholic Studies. The event's benefactors included John Tognino, chairman of the Fordham Board of Trustees, and his wife, Norma Tognino. More than 200 people, including educators, activists and parents of autistic children, attended three sessions involving clergy, academics and advocates.
Binary thinking, perhaps even from a marketing model, is widespread when it comes to interpreting, packaging, and sorting autistics into groups. If you are autistic, you are not normal; if you are normal, you are not autistic. Normal is good; abnormal is bad. Normal is complete; autistic is deficient. Parents with children newly diagnosed with autism are usually sucked into the hype that surrounds autism. Again, the benchmarks of such hype are (1) false dichotomy, (2) discontentment, and (3) loyalty to the author of the hype.
To reform our conservatorship laws to prevent
conservatees and wards such as Nancy from becoming exclusive property and chattel of their conservators and becoming unnecessary wards of the state in spite
of constitutional family rights,
There is a need for people to get involved in the policy-making process (disability policy change agents) to ensure that our laws foster the inclusion, independence and empowerment of people with disabilities and their families.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
The individuals who conceived and produced and seek to profit from this campaign clearly assumed that �adults living with autism� might not care that an organization claiming to advocate for their needs characterizes their lives as �cold and lonely,� and would be so dismissive of the potential and value of their lives as autistic people, to the point of describing their survival to adulthood as �devastating.� In fact, it is �devastating� that a public education and fundraising initiative launched by an organization formerly known for its embrace of autistic citizens of all ages and all levels of functioning, should so blatantly pander to the emotions and to stereotypes of autism held by those who are not themselves autistic.
Kathleen Seidel, neurodiversity.net
Hate and the resulting violence are always protections against feeling the fear of believing, in a deep, unconscious place within the wounded self, that we are unworthy.
Mental illness is often viewed as an individual disease rather than as a category of oppression. In the United States and many other Western countries, it is usually explained and interpreted by medical and psychiatric 'experts.'
Equitable relationships cannot be built on a foundation of pity. Instead, we must build on the shared experiences, the shared stories between us to create a sense of empathy, a sense of 'I know what you mean.'
Emma Van der Klift, Norman Kunc
Self-advocacy is realizing what one needs in order to maximize functioning in life and knowing how to arrange the environment or obtain accommodations to do so. Or put another way, it is being literate about one's own needs.
On hierarchies and false categories.
...a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder
in need of curing.
Amy Harmon, New York Times
The author wishes to emphasize that this was written as humor, not as actual encouragement to do these things -- though this does seem to be the formula most Autism Experts use.
The business of the cognitive elite is to help people fit into society on the basis of their proper place in the I.Q. hierarchy�
Human growth is not just a physiological process. It expresses itself in many different areas of human life. Traditionally, one of the most basic impediments in the life of retarded persons has been a persistent effort to deny this growth process.
I am not an object.... a child... an extension of your ego... a project... a robot... (insert famous autistic)... worthless... a criminal... a monster... an experiment... defective... a puzzle... I am a person.
We often have enough to deal with living a world which is not designed for us and having to deal with people who think that they understand autism for us to deal with role of pioneer.
Unlike these other diseases, autism is not fatal. Nor is it degenerative. Nor is it a disorder of a specific set of bodily functions, something essentially separable from the individual that the individual can be rid of with appropriate treatment and healing. It is a set of neurological differences in brain and central nervous system architecture that has pervasive effects upon cognition, sensory processing, experience and expression of emotion, communication, personality, and identity. These pervasive effects are not separable from the individual.
The role of the case manager, in particular, is being redefined to more effectively support people to assume control over decisions that affect their lives.
For Those With Autism Spectrum Disorders-
A place for autistic people, others with similar disabilities, and allies to learn activist techniques.
Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.
International autism self-advocacy organisation with its base on the Internet
One of the current trends on autism boards, even boards where a large number of participants are themselves autistic, is what parents call "venting". The people doing the venting often claim that it is an emotional release, essential to the well-being of their family. But is it really?
The biggest group of people with disabilities are the developmentally neurodiverse. A minimum of 5% of the entire population are severely affected by these. They tend to overlap, more often than not.
The concerned friends and family of Danny Muller, a thirty year old autistic adult, are presenting a petition to the Canadian Government for a better care of all autistics and in special of the adults. We must ensure that our autistic children live a life free of diagnoses of psychiatric disorders that they don't have and a life free of psychiatric drugs that they don't need, instead emphasis should be put on communication.
One of the most obvious things about any child is that they grow up. They grow up and develop a sense of who they are and like any person affiliate themselves to particular viewpoints and opinions (politics, football teams, human rights etc). As they do this who are we to decide that who they are is something we as non-autistics are entitled to cure? I've spoken to a lot of autistics both in person and online and I can honestly say I have never met any who wish to be 'cured'. The wish for a cure seems to be the sole province of non-autistics.
You have to hand it to Mr Schafer. As a dealer in misinformation and alarmist tactics he's second to none. Oh sure, he occasionaly lapses into a more open view of what he really thinks of people with autism. But most of the time he's actually very good at how he spins his misinformation. If Alistair Campbell or Karl Rove ever need a stand in, I'd be happy to write Mr Schafer a glowing recommendation.
Mr Schafer's continuing campaign to drive a wedge between classic (Kanners) autism and Aspergers Syndrome continues apace. However, those of us who are afficionado's of Mr Schafers note an increasing use of modified language coupled with more disingenuous ploys.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
Every family has its challenges and every family is unique. Every family has a different attitude towards disability. It is only destructive and divisive to make assumptions about anyone's experience based on a diagnostic label, or on the extent of a parent's willingness to portray their parenting experience in the most devastating terms.
Kathleen Seidel, neurodiversity.net
I shouldn't have to convince anyone that autistic people are human beings, so I'm not going to write a long essay on why it would be wrong to kill us off. Anyway, William Shakespeare said it best, 400 years ago, in Shylock's speech in The Merchant of Venice: "I am a Jew. Hath not a Jew eyes? Hath not a Jew hands, organs, dimensions, senses, affections, passions, fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?" Substitute the word 'Autistic' for 'Jew' and think about it the next time some bigot tries to tell you that autistic people have no feelings and no humanity.
Some autistic children become so severely depressed that they attempt suicide or become unable to function. Others develop such extreme anxiety that they self-injure or are terrified to leave the house. Psychiatrists blame the autism for all of these problems and blithely prescribe more meds, never considering the obvious fact that the incidence of depression and anxiety is likely to be significantly higher in any minority group that is systematically abused, excluded, and stigmatized.
...when some of us do type that we indeed cannot do some or all of those things, and that typing didn't change anything, people utterly ignore us and go on saying the same nonsense versions of our lives. It appears that typing involves a fair bit of glamour-magic that parents in particular are susceptible to deception by. This deception teaches them that no matter what we say, we're still who they think we are, not who we actually are, and our skill profile is very different than it actually is.
I borrow from postmodernism the de-centered model of knowledge and knowledge-making as well as the related concept of indeterminacy, and from post-colonialism the demand of subjects to speak for themselves rather than being spoken for.
It isn't just Hollywood that is guilty of wrapping autism in a mantle of talent and virtue. There is such a dearth of anything remotely close to real life when it comes to autism on the screen, that the recent Nightline episode �A Place in the World� was met with acclaim even among autism self-advocates and parent advocates, including myself. We were all applauding the way the show was handled, but many of us failed to detect what for me is now the all-too-predictable set-up: Autistic subjects of documentaries also need to have a trick to perform. Otherwise, who will watch it? How will the show make money off of its advertisers?
Self-advocacy has been and is still often labeled intransigence, non-compliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, game-playing, attention-seeking, bad attitude, bad influence, babbling nonsense, self-injurious behavior, inappropriate behavior, disrespect, disruption of the milieu, catatonic behavior, social withdrawal, delusions, septal rage syndrome, and even seizures or reflex activity.
Freedom to design a life plan, authority to control some targeted amount of resources, support that is organized in highly individual ways and responsibility for wise use of public dollars and the civic obligation to contribute to one's community.
If people in authority refuse to see, or merely don't see, how many autistic adults there are in the US, and the rest of the world, who have very good minds and well reasoned opinions, even though some might seem to be merely "patients" because they might need more than the usual amount of help to function in life, then how are these people in authority ever going to understand autism?
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
If you consider the cause of the anti-thimerosal crusaders, I urge you to also consider three basic principles: Parents respond in many different ways to a family member's disability, to chronic health problems, to stress, and to the unfolding of their autistic children's development. People who are themselves disabled often have a very different perspective on their own disability than parents of children with the same disability. The maxim "Nothing about us without us" is no less applicable to autism advocacy than it is to advocacy for the needs of people with any other disability.
Kathleen Seidel, neurodiversity.net
The way I see it is like this � I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking for, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT's know better than other autistics?
Created by a group of people with disabilities and people who care for people with disabilities that wanted a change in the political system.
Promoting freedom, authority, support and responsibility for individuals with disabilities.
We the people, who are neurologically divergent (autistic spectrum disorders, specific learning difficulties, adhd, tourettes, epilepsy etc.) assert our right to speak for ourselves in determining our rights to education, work, welfare and the right to be who we want to be.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
It's been a little over a year now since I launched neurodiversity.net. The site started as a way to share with the world an ever-growing database of links, and has evolved into an all-consuming journey into the world of disability rights. For this first entry, I'd like to offer a history of the year's events.
Kathleen Seidel, neurodiversity.net
A collection of articles and letters pertaining to discrimination against and abuse of autistic persons in Canada and throughout the world.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
Whether "mad child disease" was a premeditated acronym or a moment's inspiration, whether Professor Haley's concerns might be legitimate or his intentions noble, there is no excuse for his dissemination of degrading terms to describe autistic citizens.
Kathleen Seidel, neurodiversity.net
Asperger's Syndrome rescues Nerds from their position at the bottom of the human pecking order and recasts them as Disabled People with Human Rights issues to pursue.
The only sort of autism awareness that I want to see from the media is an awareness that they are talking about human beings. But it looks as if I'll have to wait a long time before I see any of that.
They call us "low-functioning" when they want to do stuff to us against our will, "high-functioning" or "Asperger's" or "autistic-like" when they want to discredit our viewpoints.
The Nth Degree is about turning light bulbs on. We are about helping folks to recognize that there is no such thing as 'Us and Them', just one big 'Us'.
Autism Speaks did wrong. NAAR and Autism Speaks continue to do wrong because they continue to exclude the autistic population from its mandate and research. This is why, as former corporate chair of NAAR Toronto, I withdrew my support and sponsorship. Any organization that uses language against the desires of a culture, race, or type of people who have identified themselves as a culture, is immoral. We have learned to be careful about semantics where race and religion are concerned. Why is there so much problem in understanding the inhumanitarian treatment against the autistic?
Respect for the individual, not for the group, should be the basic value in society. The individual, not the group, would have to be the centre around which an autistic society is organised. We should look to non-hierarchical ways of organization.
We, the undersigned, neither agree with Ms. Murphy's conception of autism nor appreciate Ms. Murphy's claim to be speaking for "those of us." We do not believe that we are akin to "calves born in Texas with defects," that we are "victims" of autism, and that our families were "taken hostage" by autism.
In her essay "My Name is Autism," Marty Murphy, a 41 year-old "high functioning" autistic woman describes what autism means to her... We find these statements to be dangerous, sensationalist and false. We believe these statements demean and devalue the lives of all autistics. These statements resonate with similar historical efforts to incite fear and hatred against identifiable groups of people, with the goal of restricting then eliminating the existence of these people.
Just imagine if there were "femaleness support groups" where women were taught to cope with employment discrimination and other "impairments" of their gender by learning to behave more like men. Or "blackness support groups" where people of color were advised to deal with their "social problems" by learning how to bleach their skin and how to sound white in a conversation.
Maryann Cottrell bounds out of her car door, tiny camera in hand, to snap photos of two vehicles parked in the handicapped spaces at a used car dealership. She's gleeful to add to her tally of nearly 300 motorists she's reported for parking in handicapped spaces without proper permits. She's nabbed two Philadelphia Eagles players, mail trucks and so many college students that Rowan University has barred her from campus. Cottrell, 53, is an activist, not a police officer. Under New Jersey law, she's allowed to report handicapped parking violators, and police and prosecutors are required to take them to court.
Geoff Mulvihill, Associated Press
Here is our real message to parents: Please work with us, respect us, and listen to us, so our past doesn't become your children's present or future.
Prima Donnas and the miserly, two variants in the human landscape are around to be sure, but there is nothing in the literature that says that these are more common in the Asperger's population than in the general run of humanity. It is quite amazing that Brottman should make such a logically fallacious argument. Just because two former colleagues had what she interprets as personality problems, and it should be noted that we have only Brottman's version of events here, does not mean that those same foibles belong to Asperger's as a class, a classic error of inductive reasoning. That the Chronicles failed to edit that out is indeed 'peddling prejudice'.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
We refuse to listen silently as autistic children are described as "mad," and compared to diseased animals, by opportunistic speakers and journalists who seek to inflame public emotions at autistic citizens' expense in their eager pursuit of political agendas and research funding.
Kathleen Seidel, neurodiversity.net
In all likelihood when the Society was set up forty years ago no one considered that there were articulate and intelligent people on the autistic spectrum who had a sufficient degree of self-awareness to take an interest in the affairs of the society.
The protest was held to show that many of those with autism do not wish to find a cure, believing that acceptance is more important. There are advantages to have a neurological difference, and this neurodiversity can be welcomed and appreciated.
The very first question after a violent episode should be, "Why was this person's communication prior to violence ineffective at getting his message across, and what can we do to make sure that his prior communication does get the message across next time?" It might involve teaching communication skills. But, equally, it might involve teaching listening skills to others. It certainly doesn't involve a zero tolerance policy.
Frustrated and angry at what they say is inadequate and unequal access to treatment, a number of groups including Autism, Asperger's Advocacy Australia (A4), the Autism Council of Australia and the Autism Family Support Association are lobbying the federal Government to create a co-ordinated national approach. Recently they took their case to Canberra, where the first national forum for autism was held at Parliament House on June 16.
Lynette Hoffman, The Australian
We have different and unique characteristics. Often we are silent, or nearly so. Our bodies are unusually shaped. We are often fragile and frail. We live in intimate connection with other people's bodies, minds and hearts. Our ways are not inferior.
Red Disability is a website for disabled people which promotes disability issues from a left-wing working-class viewpoint. It has the following long-term aims: to inform disabled people about the nature of our oppression and what to do about it, to promote a positive image of disability by promoting disabled people who have contributed to society and culture, and to provide a source of links to disabled self-help groups (both political and non-political).
Revolutionary Advocacy: Using the Internet; My Own Revolution; In Search of: Medicine On-line Dr. Len Leshin's Corner;
Netiquette: Helpful Hints; Your First Computer? A Collection of Internet Resources
There is one aspect of the modern world that has the power to transform the lives of many people diagnosed with autism: the computer. Using a keyboard avoids many of the problems associated with face-to-face communication; there are children in autism-friendly surroundings who communicate via a keyboard before they learn to talk; older autistics who never mastered speech have taken to putting their words on screen with a vengeance. The internet has been inseparable from the rise of the autistic activists and dozens of websites now describe their inner worlds and set out their demands. Autistic people are at home in the virtual world, which is why much of the research for this article was conducted online.
Education on criminal justice issues, advocacy for community supports for people with developmental disabilities.
Working As A TEAM of Journalists; Lessons From the Experts; Newsletters for Self-Advocates; Feeling Included; Getting Ready; Taking Extra Steps; Volunteer Opportunities; Helpful Hints While Your Children Grow; Promoting Community Service
Examined thes self-advocacy of people with the label of 'learning difficulties' as enacted within self-advocacy groups and accounted for in personal narratives. This process illuminated concerns re doing of disability research by disabled researchers,
Dan Goodley, Derrick Armstrong
Self-determination is supposed to be about disabled people making decisions in our own lives, both significant decisions and (seemingly) insignificant ones. For instance, I can choose what kind of place I want to live in (within reason -- I suspect I wouldn't be able to choose a mansion without the means to buy one), I can choose my friends, and I can also choose what to eat for dinner tonight. For people who have a difficult time communicating in standard ways, experiencing self-determination can depend a lot on how carefully other people are paying attention, but it can still happen. So... on to some staffish mangling of this word.
Self-determination is supposed to be about disabled people making decisions in our own lives, both significant decisions and (seemingly) insignificant ones. For instance, I can choose what kind of place I want to live in (within reason -- I suspect I wouldn't be able to choose a mansion without the means to buy one), I can choose my friends, and I can also choose what to eat for dinner tonight. For people who have a difficult time communicating in standard ways, experiencing self-determination can depend a lot on how carefully other people are paying attention, but it can still happen. So... on to some staffish mangling of this word.
Coined by autistic activist Jim Sinclair, this term made its first Usenet appearance in 1994. It describes the position autistic people find ourselves in within most autism organizations, mailing lists, support groups, and even one-on-one interactions with parents of autistic children or curious professionals. "We're expected to speak only when spoken to by neurologically typical people, and only for the purpose of providing informative data for others' purposes, like self-narrating zoo exhibits." One of the most common reactions to an autistic person is to ask questions about autism, including extremely personal questions. While most of us understand this reaction, we also perceive it as treating an autistic person not as a person but as a dehumanized information source or a "walking autie textbook."
Seven times seven, and more to come I hope, so that I can show that there is more to life than autism alone and more to autism than no life. I got where I am because I worked at it, but I did not get here by abandoning my responsibilities to my mission, to create a better world for all people disadvantaged by what the world labels as disability.
Parliament as a whole has a responsibility to counter intolerant and hateful views of autistics now common in the media and in judicial proceedings, which views have the purpose of scaring the public and legislators into funding programs that will ensure autistic differences -- our traits and abilities -- are pathologized and presumed to require eradication.
Michelle Dawson, jypsy (janet norman-bain),
Ralph Smith
If the arguments, comments and viewpoint of a person with AS can be discounted simply through that identification, there will be a temptation to employ this as a tactic where high levels of conflict are present (for whatever reason).
I've finally been able to put into words an unpleasant undercurrent running through the movie Autism Is A World. This is, all but a few (perhaps all) of the non-autistic people in the movie were visibly uncomfortable with the autistic people in the movie. But they were making a big show of trying to hide their discomfort. I've seen this before. It's almost a social sleight of hand: "Maybe if I wave my hands around enough, you won't see how scared/embarrassed/distressed I am about people like you." I have seen it especially prevalent (or maybe especially striking) in my interactions with advocates of inclusion, people whose primary experience of autism is with people who can't speak (but who promote FC or aug comm), and people who promote the self-advocacy movement among people with developmental and intellectual disabilities. I've also for that matter seen it in all manner of liberals.
It seems that many people expect everyone to just have problems of "feelings" that can be resolved by moving "feelings" around, and also to only care about themselves. The idea that problems exist beyond emotion, that emotion is in fact not the only (or even main) component of trying to talk about or change such problems, and that the problem is not in the emotions of those who complain about it... that seems lost on a lot of people. Easier, I suppose, to reduce everything down to nice individual emotional problems with nice individual emotional solutions. Especially easier for people with power.
PLEASE don't try to make us 'normal'. We'd much rather be functional. It's hard to be functional when you have to spend all your time and energy focusing on making eye contact and not tapping your feet...
Jennifer McIlwee Myers, Aspie-at-Large
There is little chance for self-advocacy and self-representation of people with such disorders if autistics and their many correlatives accept the extensive labelling with which the medical discourse attempts to distinguish one disorder from an other.
List of National autism/PDD organizations; Online support groups; Related conditions; General special needs; Legal advocacy
An international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm.
Sam Riches, of Cartmel Gardens, Morden, is badgering bus company London General to get air conditioning in drivers' cabs. The 13-year-old said: "I was talking to the driver on the 164 about the heat. I thought how hot it must be for them cooped up in their cabs - it must be dreadful. "Some bus companies have air conditioning for the drivers but the 164 doesn't seem to. It could cause strikes." The 164 route is run by London General and at the moment the majority of the buses are without air conditioning.
This site is unique for a few reasons. One, moderation always considered free speech to be the most important freedom granted to each individual that chooses to become a member. Second, we have the space and bandwidth to grow. Third but not the least it is the goal of this site to bring together people with Aspergers Syndrome world-wide.
The Autism Society of America, one of those big get-rid-of-autism groups, has begun billing itself as The Voice of Autism (uh-oh!). The group has a new "Getting The Word Out" campaign underwritten by CocaCola, MetLife, Janssen Pharmaceuticals (??), Harley-Davidson, Enterprise Car Rental.... a long list, anyhow. The campaign's centerpiece is the website www.gettingthewordout.org. It's a pretty scary site, and I don't mean that exactly in the way the design firm intended, I'm sure. And then there's www.gettingthetruthout.org which is... the same thing? Or something else entirely? Check it out and decide for yourself. I'd love to get your comments on these two websites.
Often, autistics who speak out about how autistics are treated face criticism that they are only representative of a fraction of autistics. The exact fraction varies depending on who is doing the criticism, but usually it implies that the abuse/ treatment/ program/ whatever the autistics are talking about may not be a good idea for those autistics in that fraction, but there are other autistics, ones that these "high functioning autistics," "internet autistic," "Asperger's persons," or whatever else, don't know anything about.
Wrong planet, my ass. Excuuuuuse me if I'm interfering with your melodramatic fantasy of being a misunderstood space traveler, but this is my damn planet, too. Guess what � autistic people are citizens of Earth just like anyone else. And excuuuuuse me again for stating the obvious, but we didn't take a wrong turn at Alpha Centauri and end up in the galactic slums, even though it may feel like that sometimes.
I recently got a question I haven't heard in a long time. Someone innocently asked, "...so you don't find that institutions helped you?" I'm trying to remember the last time, if ever, that I thought of help when I thought of those places. I can't figure out what is supposed to be helpful to an abused and distressed autistic person about being thrown in a building with a bunch of other people, put on assorted reward and punishment programs, tied down on a regular basis, put on an assortment of drugs that just kept rotating as they seemed to think one would "work" (to do what I don't know), and all the other things that go on in institutions.
Often, autistics are expected to follow certain rules and regulations, and fit properly within their stereotype. As a humorous attempt to make it easier to "enforce" these stereotypes, the following ticket may be used to let an autistic person know that they were "out of line." Feel free to give one to your autistic friend when they show a violation of a stereotype!
Why do some people want to deny that Asperger's syndrome is a form of autism? Why would they say that there is no such thing as "high functioning" autism.
What's at stake here?
If you're going to study us, study us. But keep in mind you're dealing, from the lowest to the highest functioning, with sentient beings, with an extraordinary capability for knowing what is important and what is unimportant, in our lives.
Now don't just sit there all quiet in a corner rockin' and lookin' like a poster child. Help yourself to a Voice :-) We're offering free blog hosting to any autistic. Sign up here, then e-mail us your login name and let us know you want to blog.
I recently received a flyer inviting me to the annual meeting of a local center for independent living (sometimes called a "CIL"). Under "Access Accommodations" is the information that it will be held in a location that is inaccessible to me because of the fluorescent lighting. There are places at which it could have been held that are -- to the best of my knowledge -- accessible to everyone whose access needs were met by the chosen location and also a large number of us with atypical neurologies for whom fluorescent lights are a barrier. Holding the meeting in, say, the CIL's own meeting room, which the executive director says has been made fluorescent-free, would cost the same amount of money or less.
When I talk about knowing about autism here, I don't mean being able to regurgitate what experts have hypothesized, but actually having a working idea of how autistic people (plural, not extrapolated from one person) develop and experience the world. Having a relative who is disabled doesn't give you automatic insight into disability politics, and having a relative who is autistic doesn't give you automatic understanding of autism no matter how well you know them or think you know them.
We seek to empower people on the autistic spectrum through developing advocacy efforts, educating the public about autism, and bringing autistic people in touch with each other via cyberspace or other means.
A cartoon lampooning the hubris of organizations that presume to speak for those who presumably need a voice.
I want autistics to always have access to the information that they are not the only one like them in the world. I want autistics to be raised to be proud and confident that who they are is unique and beautiful.
One ability is not another ability, no matter how closely related (or identical) they seem in abstract stereotype-land. Period. The appearance of an ability does not mean the ability is there. Period. One ability some of the time is not one ability all of the time. Period. Political views on curation, institutions, or anything else like that, do not indicate kind or level of ability in any particular area. Period. All of those are true when inverted, too, appearance of obliviousness doesn't mean obliviousness for example. Those of us who know this will not shut up about it, and people who don't had better learn what's at stake when they trivialize what is happening to us.
People look at my life, and the fact that I'm an autistic, and say, "You are doing so well," or "You can't possibly be autistic." After all, I have a good job. I drive my own car. I can express some of my thoughts. I do so many things other autistics can't do. I even like myself and my autism. Bt my disability can't be judged that way. You can't look at me and say, "Oh, he does (A), (B), and (C), which most autistics don't do. Therefore he must be only mildly disabled." You can't say, "Your disability doesn't really affect you the way it affects others. You wouldn't be glad you were autistic if it caused you real problems." Frankly, I'm sick of being judged this way. This judgment has made it hard for me to seek and receive the support I need to survive.
This is written to expose the real message behind the words of some of the patronizing and controlling people -- mostly non-disabled 'advisors' -- I have met in my experiences with 'self-advocacy'.
Do you want to make sure some other autistic isn't allowed to contradict what you say about autism? Do you want to feel proud of yourself while "recognizing" that there are people who have nothing to be proud of? Do you believe there are certain people who should be locked in institutions (but of course not the people like you)? Do you have a pet theory about autism that can be easily dismissed if someone shows you an autistic that doesn't fit it? Have hope! There are ways to prove that these others are not really autistic (or, if you prefer, Asperger's - if you like that label better), but are something else. Something that can and should be treated differently!
|