Disability Coalition Applauds Introduction of Legislation that Protects Students with Disabilities from Abuse

This was sent to me, so I'm thinking that I've been given permission to post this.

For Immediate Release:

December 9, 2009



Disability Coalition Applauds Introduction of Legislation that Protects

Students with Disabilities from Abuse



Seclusion and restraint legislation one of 12 items on Coalition Agenda



(Washington D.C.) -- The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.


"There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints," said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. "The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints."


While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.


"We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school," said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.


Unlike previous attempts to protect students with disabilities, this legislation applies to all students

and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint. "The fact that our children are still subject to abuse is a disgrace," said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. "The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions."


Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.


Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.



About the Justice for All Action Network


Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.


Working as a coalition, JFAAN is committed to accomplishing each item on the coalition's agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.


Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.


For more information, contact Ari Ne-eman, Autistic Self Advocacy Network, (202) 596-1056;

Methinks thou dost Project too Much

Really, I was going to work on other articles, like the review I've been poking at for the past month, or the draft of an article on burnout, but this honestly needs a response from me, because honestly, these people need to get their metaphors straight.

a lovely little exercise

As Orac has put it, Kim Stagliano of the Age of Autism has put up this lovely little gem of projection entitled "Harvard and CNN Report on Lower than Expected H1N1 Vaccine Uptake". (edit: apparently AoA has pulled the post off the net. Too late though). It is, as I see it, a beautiful merging of self-congratulations and self-indulgent, self-proclaimed righteous outrage. It's also a lovely little exercise in dodging responsibility by projecting blame onto someone else, based on one's own grand illusions and paranoid hallucinations. Otherwise known as scapegoating.

Let's take a look, shall we?

First, dear Ms. Stagliano reports the findings on American vaccination rates by Harvard and CNN, and directs this towards Dr. Offit:

Despite your use of ad campaigns, non-profit pharma groups, pretty movies stars, curvy pop singers, NPR, The Chicago Tribune, the LA Times, The New York Times, press releases, a new science-based autism organization, magazines, the book publishing industry, and more, the majority of Americans surveyed by The Harvard School of Public Health are not convinced of the safety or necessity of the H1N1 vaccine:

She then launches into a self-indulgent rant on how Dr. Offit is blaming "anti-vaxxers" (oh, yes they are) for the decline in the vaccination rates, and how it's really Dr. Offit's fault because of his and the government's "strong arm tactics", that are backfiring.

one of the few doctors

Of course, this is based on the assumption that Dr. Offit is the "self-annointed face of public health and vaccination in America", and thus backed by the pharmaceutical companies that make vaccines and the government. This assumption is based on what? The fact that Dr. Offit, a vaccine inventor, is speaking up to advocate for vaccines and against the myth that vaccines cause autism?

Uuuuuummmm, right. Assumptions based on ... very little.

Look, if Dr. Offit is "self-annointed", that means that he's an independent, and thus is not actually employed by anyone to promote vaccines. Dr. Offit, if I remember correctly, and according to his website:

Paul A. Offit, MD is the Chief of the Division of Infectious Diseases and the Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Dr. Offit is also the Maurice R. Hilleman Professor of Vaccinology, and a Professor of Pediatrics at the University of Pennsylvania School of Medicine.

While he WAS (as in, past tense) a member of the Advisory Committee on Immunization Practices to the Centers for Disease Control and Prevention, DOES (present tense) publish books, and HAS (past tense) received awards for his work, he is NOT (negative) employed as a spokesperson, PR staff or any other funding for his advocacy. The reason why he gets a lot of media attention is due to the fact that he's one of the few doctors who is willing to stand up to the self-righteous paranoia of the anti-vax crowd. Given the responses he's had from the anti-vax crowd, I can see why not too many doctors would do what he has done. After all, who wants to receive harassing phone calls and death threats?

a reluctance to be responsible

Moving along though, Ms. Stagliano makes some interesting comparisons, comparing the anti-vax crowd to "ragtag colonials" and the vaccine-advocates as "Red Coats" (makes me wonder who the "natives" would be... hmmm....), and then claims that if a deadly disease was to break out, it would be Dr. Offit's fault:

Here's my real concern. What if there is an anthrax attack on American soil? Or a biological attack that could be thwarted with a vaccine? ... If such an attack happens, will the nation hold you responsible for having diminished the public's trust in vaccines? I think that's entirely possible. And dangerous. What a legacy.

So apparently because of his "strong arm tactics", and not because of a group of people who are convinced that vaccines are more harmful than the diseases, Ms. Stagliano thinks that Dr. Offit should be held responsible if the public distrusts vaccines should a biological attack that could be thwarted with a vaccine, occurs.

... Right.

Have I mentioned that Dr. Offit is an independent when it comes to advocating vaccines? That really, all he's doing is education and awareness? Yet HE is suppose to be responsible because THEY feel that vaccines are dangerous and IF a biological attack completely out of his control happens?

For the record... no. As mature adults, these people are responsible for themselves. So, if they, after reading all the information, decide not to vaccinate themselves or their children, it's THEIR responsibility. Not Offit's.
Thus, Offit would not be blamed. They would. No amount of immature scapegoating and blame shifting is going to change the fact that they consciously made that decision.

Of course, Ms. Stagliano doesn't it that way:

As much as I'd like to think that 28% of the American population reads Age of Autism and visits our sponsors' sites, I can assure you that's not the case. Your message has failed. Think Shakespeare, Dr. Offit. Too much protest.

Yes, Ms. Stagliano, because Age of Autism consists of the entire anti-vax population and all the anti-vax propaganda in the entire country. I'm sorry, but despite your arrogance and self-indulgence, AoA is not the only anti-vax site out on the Internet, or the only outlet for anti-vax stories. As we have seen, the media does love a good story, has been very willing to pick up on tragic stories, and has picked up on anti-vax stories. Sorry, but while you are anti-vax, you are not the only ones. So it's not just you.

And I doubt that Dr. Offit is protesting too much when you're projecting so much. I mean, really. This kind of projecting indicates a reluctance to be responsible for one's own actions, coupled with inflated sense of self-importance that hinges on the delusional.

not very good at paying attention

Lastly, Ms. Stagliano makes a stab at being seen as reasonable:

Your brutal attacks on the the autism community as the source of all your ills is untoward and grossly out of synch with your message of protecting children. Our children are human beings too. Yes, we have raised serious questions about their health as it relates to vaccine injury. And yes, we have questioned your livelihood by doing so. But a pediatrician is supposed to care for all children, not simply the ones whose parents agree to full vaccination sans questions.

Hmm... Dr. Offit isn't attacking the autism community. Dr. Offit is, at worse/best, attacking the anti-vaxxers. How do I know this? Because, I happen to know that there is a good sized group of autistic people and parents of autistics who support Dr. Offit and are not anti-vaxxers.

Also strangely enough, Dr. Offit got into the field of vaccines in order to care for all children, which Ms. Stagliano would know if she bothered to pay attention to any of Dr. Offit's biography.

Here's also a funny thing. Ms. Stagliano claims that autism is a vaccine injury and that "our children", assumedly autistic children, are human beings too, and yet she's not very good at paying attention to the autistic adults who also should be included in the "autism community". And I'm not just talking about dear Craig. She seems to forget the children who are human beings, grow up to be adults who are human beings too.

So, Ms. Stagliano, pay attention to someone who is also one of "[your] children" in the "autism community":

I am an autistic adult who more or less received the same vaccine schedule as children nowadays, including the MMR. By your own theories that vaccines cause autism, I am therefore a person who is "genetically predisposition" to have had my autism caused by vaccines. If you follow the conspiracy theories, then the H1N1 shots are either designed to a) kill me or b) make people autistic, regardless of age.

On October 28, at 10:47am, I received a 0.50ml dosage of Arepanrix H1N1 adjuvanted vaccine. By the toxins myths, this is full of all sorts of toxins and mercury that causes autism, and is one of the "too many" that joins all the "too soon" vaccines apparently still in me.

It's been over a month since the vaccine; still not more autistic.

Nope, just as autistic as I was before.

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Protesting Autism Speaks

ASAN is protesting Autism Speaks in New York right now at 6pm. They are meeting at Seventh Avenue and 57th Street, 154 West 57th Street in New York City at 6 PM to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld.

Given that it's nearly 5pm my time, it's a little late to advertise the protest. However, I realize that not everyone, even if they are available to go to the protest, are able to go, stand on a sidewalk and confront, even non-verbally, complete strangers.

So, what I'm thinking is this; letter campaigning, to celebrities and officials, emails to Autism Speaks itself (since it states that they would LOVE to hear from autistic individuals, email them at contactus@autismspeaks.org.), bookmark campaigns, and meme-ing.

The letter campaigning and it's digital offshoot, emailing, are fairly traditional ways to protest, as well as signing petitions. (which reminds me, the ASAN petition is still available HERE http://www.ipetitions.com/petition/AutismSpeaks/)

But what are bookmark campaigns? Well, it's kind of like handing out flyers, except indirectly. You create/download cards, as in business cards, that can contain a slogan, some information, and a website URL. You print out the cards and then go to either libraries and bookstores, and slip them into books. I recommend related-topic books, such as the autism books, as well as some of the current bestsellers, recommended, new arrivals and speed-reading books. These are books which are most likely to get picked up, and concern the most relevant readers.

EDIT: Here's a card that I made up as an example. I fully give permission for people to use it for bookmark activism :D




As for Meme-ing, well, that's the continuous re-posting of information, whether it'll be quizes, questionnaires, or the chunk of information I'm about to post below, the reasons why ASAN is protesting Autism Speaks.

These are just a FEW of the ways in which we can protest. These aren't the ONLY ways to protest, and no one has to do them all, or any of them. People are certainly able to come with new ideas to protest that accommodates their abilities and what they feel comfortable doing.

If you have any of those ideas, feel free to comment with them. I'd LOVE to hear new ways of protesting.

Finishing up, here's my meme-ing protest, the reasons why ASAN is protesting Autism Speaks (bold is mine).

WHY ARE WE DOING THIS?

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

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Language, Disability, and Injustice

Before I get started, I want to address something. In this piece, I use words such as, well, "words" and "speaking". This does not just apply to vocal communication. I do not limit the concept of speaking to just vocal communication, but in this piece am using the word to apply to all manners of communication: typing, sign language, picture boards, drawing, etc. For too long has speaking been considered the act of communicating vocally. I'm not using it that way here.

Also, all bold emphasis is mine

In my church, we're studying the book of James in the New Testament, in a series we call "When the Rubber Hits the Road". In this series, we're studying how lessons from the past can still be used today, particularly from James, as a majorly practical book. A few weeks ago, we were studying the first part of Chapter 3, in how we speak and even, how we DON'T speak. Now, I'm not going to summarize the whole Christian sermon, because it'll be like I was trying to push my religion on other people, but it got me thinking. The three points where about words that don't match beliefs, words that are used as weapons, and the lack of words. I'm pretty sure we get saying things that don't match what we believe in, but it's the words used as weapons, and just as importantly, when we don't speak up at all that I want to address.

Kowalski pointed out a post by Renee that asks

If a friend or relative makes a racist or homophobic remark, do you tend to confront them or let it slide? Are you more likely to confront them if it offends you directly or someone else who seems reluctant to speak up?

In the discussion, it was brought up that there are times when it takes us a while to fully process the conversation, delaying our ability to react to inappropriate remarks. Shock also tends to still our reactions, as well as uncertain relational standings where it might not feel comfortable or appropriate to approach an individual. Bev referenced Dave Hingsburger, a Canadian disability self-advocate who recently was inducted into the Canadian Disability Hall of Fame, who in 2008 came up with the idea of business cards as a way to educate and address issues such as derogatory comments, without being considered too sensitive and the effect of people just not saying those comments around you.

I think this is a very good idea. (Personally, I'd make the message more personal, in a "would you like it if someone said that to you?" kind of way, but same approach, really) It's a non-confrontational method of addressing the issue without making a big scene and potentially embarrassing not only oneself, but the person being addressed. This way, a person may be more receptive to understanding, which makes a big difference, in my experiences.

However, I believe that this can be taken to a level further. In the sermon I mentioned above, the speaker talked about a Christian's duty to speak up against injustice, that

When it comes to things like injustice and poverty and abuse and hunger and HIV/AIDS and racism, and kids dying from preventable treatable diseases, and environmental destruction, as people of faith, we cannot be silent. We have to speak. We have to put the power of words to work.

I don't think that it's just a Christian's duty to speak up against injustice. I think that it's a human's duty to speak up against injustice and to work to change the way society works in order to reduce the injustice that occurs. This is because injustice occurs that is injustice not only from a Christian's perspective, but from all manner of religions and backgrounds as well. Injustice is not exclusive. It affects everyone, in one way or another.

Injustice, of course, can take many forms, from discrimination, poverty and environmental destruction, to even the simple misuse of words, as addressed above. However, what is injustice in the Disability community? Certainly, discrimination and abuse is the most obvious form, but does it not go much deeper? Is inadequate services and supports also not an injustice? Is attempting to cure and change people to fit a pre-conceived mold that doesn't fit also not abuse and an injustice? Should we not be working to make the changes to stop this?

I think so, and certainly I don't think I'm the only one. A (rather long) excerpt from Kim's blog post No vanilla for me, Another one bites the dust, and Insomnia

[T]here's an element of moral superiority in assigning disability status, an absolute sense that the non-disabled is superior. And I think that's wrong. I do. So, I looked at these sixty plus individuals who attend the center with my son, whom he has known for six years now, who care about him and accept him as he is, and I thought about those people who would push for cures for each of them as if who they were was inadequate, insuffient, insignificant. And I thought of those who would look at these interesting, animated individuals and see them as lacking, as less than, and I was irritated. I think that, when the support is adequate, when the acceptance and appreciation is there, these people who are unable to care independently for themselves can have very good, extremely satisfying lives. Where the support sucks, where the appreciation and respect are not there, I think their lives can by an abysmal hell.

I think that rests squarely on society's shoulders. And I think that organizations that promote the idea of vaccines as the culprit for autism damage their children's future and mine when they engage in their bullying and fear mongering tactics. I think they don't speak for me, for my children, for many of us and it's more than time to make sure that if people in mainstream society hear someone calling themselves a warrior or an autism parent and they aren't in the military and aren't autistic themselves, the mainstream will have a real clue as to the belief structure of the person they are dealing with. These parents haven't put child-centered language first in their advocacy; they've placed themselves first. It's about them. About recovering their American dream of a cushy, easy life in which their children outshine others.

To look at someone with a disability and feel sorry for them is to demean them and their inherent value. It presumes you have an elevated status above them. To look at them and feel empathy for their challenges and respect for how they persevere is to see them as fully human. To work to assist them in creating what they consider meaningful, valuable lives while working to reduce any suffering, to heal illnesses is not noble. It's the right thing to do.

Kim's post reminds me of the message by Dr. Glenn Rampton, C.E.O. of Kerry's Place Autism Services, a service provider in Southern Ontario celebrating 35 years of service:

Recently, we witnessed a monumental achievement in the fulfillment of the Government’s promise to end institutionalization for individuals living with developmental disabilities. The official closing of Huronia, Rideau and Southwestern Regional Centres paved the way for Kerry’s Place Autism Services and its community partners to engage the public in gaining a better understanding of these individuals and their right to live, participate and prosper as valued members of society. The struggle is not over, however, as we must continue to help people in communities throughout Ontario and elsewhere to overcome stereotypes and misunderstandings to understand the need for, and to create appropriate environments and supports in which individuals with autism spectrum disorder can thrive.

Now, I may be a bit biased, since I've worked with Kerry's Place for a while, and even now am active as part of community education and awareness projects. However, from my experiences, Kerry's Place has demonstrated that it is possible to make a difference, to create an environment that is supportive, accepting and safe for autistic people to become as independent as possible and fully integrated into society. It may take a lot of work, but it's a realistic goal.

This may be as simple as handing out cards when you come across discrimination, or working with different groups to overcome differences and reach understanding. It may be something small. You can always start small, but I would hope that we will work our way up to doing big things to make a large difference.

Zazzle Store

Yes, I got myself onto Zazzle, and, due the encouragement of many, made up a couple of shirt about reaching the two week mark of getting my H1N1 shot and not being more autistic yet.

Also made some other shirts. Trying to come up with some other designs and whatnot.




create & buy custom products at Zazzle

Shameless self promo, I know. But people have been telling me to make shirts for a while.

ASAN Petition

Please, I think this needs more attention. This is the ASAN petition against Autism Speaks.

http://www.ipetitions.com/petition/AutismSpeaks/index.html

We, the undersigned organizations representing self advocates, parents, professionals and allies in Disability Community, are writing to you to express our concern about Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities. The most recent example of lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."
Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Please sign and support autistic opinion.

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DSM Merging the ASD

Kev, of Left Brain/Right Brain, asks this question:

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people with the AS diagnosis (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

and then gives his own opinion:

the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism comunity.

I recently discussed this issue with my mother. She's a high school teacher, and while she understands my concerns and agrees that Asperger is Autism, she has explained that, as a teacher, the label has been a useful tool for her to figure out what can and can't a student do, and what accommodations to make in the classroom. I suggested to her that perhaps then more descriptive IEPs may be in order, so that the knowledge behind the label will not be lost in the (highly likely, yet unconfirmed) merge. With that scenario, she agreed that then there would be very little point in keeping Asperger's as a term in the DSM.

I support merging Asperger's with the rest of the ASD, as it simplifies classification and eliminates confusion and potential discrimination.

One of the concerns that has been brought to my attention about this issue is that if Asperger Syndrome is no longer in the DSM, that all the hard work of raising awareness will be wasted, and that people with the diagnosis of Asperger's will fall through the cracks again.

However, I think because of the awareness that has been made about Asperger Syndrome can be shifted to be about ASD. Also, the wider range of diagnostic criteria means that people previously diagnosed as Asperger Syndrome will be recognized as being ASD, and thus will not fall into the cracks as before. Of course, this is under the impression that appropriate services for all ranges of the spectrum and all ages, from childhood to adult, are available. If those services aren't available and implemented properly, then yes, people will fall through the cracks.

Which needs to be put into place even if Asperger Syndrome isn't removed from the DSM.