ASAN: ACTION ALERT: Call On Congress to Oppose H.R. 4631, the Combating Autism Re-Authorization Act

28 May

The Autistic Self Advocacy Network (ASAN) has put out an action alert on changes they would like to see in the Combating Autism Re-Authorization Act:

ACTION ALERT: Call On Congress to Oppose H.R. 4631, the Combating Autism Re-Authorization Act

Tomorrow, the House Energy & Commerce Health Subcommittee will be taking a step to advance H.R. 4631, which would reauthorize the Combating Autism Act. The current version of the bill continues to exclude autistic people from the federal committee that oversees autism research (the Interagency Autism Coordinating Committee), continues the use of offensive language and politicizes appointments to the IACC.

Call your Member of Congress today at the Capitol Switchboard at (202) 224-3121 to say that we want real reforms. The operator will be able to use your zip code to connect you with your Representative. Urge them to oppose H.R. 4631 until such time as real reforms are put in place. Here are some talking points you can use:

1) H.R. 4631 continues to use language offensive to Autistic people and our allies. We don’t want to be “combated” – we want to be supported and respected. Despite numerous complaints by the Autistic community, the legislation continues to use disrespectful and offensive language. This has to change.

2) H.R. 4631 adds four congressionally appointed members to the Inter-Agency Autism Coordinating Committee, politicizing the IACC instead of letting it focus on analyzing autism research and policy from an objective perspective.

3) H.R. 4631 fails to require additional self-advocate representation on the IACC. Shouldn’t a government advisory committee about autism require more than one autistic representative on the committee? Tell Congress that they shouldn’t be acting about us, without us.

We want a real focus on research about services and the needs of adults, respectful language, and real representation of autistic people in decisions about where research dollars are needed. Act today by calling your Representative at (202) 224-3121.

Advertisements

12 Responses to “ASAN: ACTION ALERT: Call On Congress to Oppose H.R. 4631, the Combating Autism Re-Authorization Act”

  1. Sullivan (Matt Carey) May 28, 2014 at 00:24 #

    I’d like to point out that the language of the Combating Autism Act only requires one self-advocate be appointed. In the present version, there are two presently serving and, if I have the correct information, a third was appointed but had to step down due to a new job which conflicted with the duties of the IACC. While I may have that last bit incorrect, three self-advocates were appointed by the Secretary of HSS.

  2. Jon Mitchell May 28, 2014 at 03:13 #

    to date, five spectrumites who were neurodiversity proponents, opposed to curing autism have been appointed. To date, not one pro cure, pro treatment antineurodiversity autistic has been appointed as a public member of the IACC. Roger Kulp has stated that he’s interested in serving. But you seem to think that’s perfectly fair, even though the combating autism act was originally enacted with the purpose of ultimately curing autism.

    • Sullivan (Matt Carey) May 28, 2014 at 18:26 #

      Let’s take two examples to demonstrate that your preceptions may be inaccurate. In specific, the implication that the autistic representatives to the IACC are not pro-treatment.

      Mr. Britton, autistic member to the IACC, does a lot of his work for the IACC through writing parts of the Plan updates so it’s difficult to find his statements which would address your statement. Perhaps that is why you misrepresent him. recently commented on the many negative results from pharmacological intervention studies, yet the fact that many practitioners turn to these medicines:

      “…but I would love it if we could do something about this and stop making pharmacological interventions the first method of treatment, but rather turn them into the last. ”

      That’s not anti-treatment. He’s pointing out that there are treatments that should be tried before pharmacological interventions.

      John Robison has written a great deal. Thus one can go to his blog and enter “treatment” as a search term. Here’s one phrase that I believe is on point

      The ability to tell our different forms of autism apart will open the door to many treatment options in years to come. Plenty of gifted autistics will choose to stay as they are, but we all share a duty to those who want help. The promise of using genetic knowledge to head off the most severe autism in infancy is tremendously exciting to me, and to many researchers in the field.

      Clearly not anti treatment.

      John Robison has founded a school to work with autistic youth. How exactly is that anti-treatment? John is a strong advocate for focusing research funding on topics that will have direct benefit to autistics.

      I’d suggest you understand neurodiversity before you call for anti-neurodiversity people to be appointed. I say this because in the past you have demonstrated a clear lack of understanding of the subject and an unwillingness to accept your clear errors. As for the cured debate: When there’s a cure to be for or against, please come back and we can have that discussion. It is an important discussion to have now, in my opinion, but focusing a lot of attention and debate on the topic doesn’t seem fruitful to me when (a) both sides often misunderstand each other and (b) people refuse to understand the opposing view and (c) it is at present a hypothetical debate. Sorry to be so direct. I’m willing to admit an error. Comment here with an apology to Mr. Robison and Mr. Britton for your misrepresentation of their views and I’ll know I’m working with someone who is willing to accept an error and try to understand the opposing view. Otherwise, I wish you well. I encourage you to advocate for the changes you wish to see in autism legislation.

  3. Jon Mitchell May 31, 2014 at 07:50 #

    You still haven’t answered my question on the fairness of an autistic who does not believe in neurodiversity never having been appointed as a public member of the IACC. I was hoping, since you’re a public figure (being on the IACC) that you could at least answer the question, but I guess it was an irrational hope

    • Science Mom June 6, 2014 at 01:26 #

      Mr. Mitchell, I’m obviously not Matt and in no way speaking for him but how fair is your request? Not every faction of a belief system can be represented. The fairest way is to provide representation of the majority. Besides, your philosophical views are already represented by at least two members of the IACC.

    • Sullivan (Matt Carey) June 6, 2014 at 01:53 #

      I note that you have avoided acknowledging your misrepresentation of the autistics on the IACC.

      What do you care about–the label or the actions. Since you clearly misunderstand neurodiveristy, the label is meaningless in this discussion. You complained that the autistics on the IACC are anti treatment. That’s what counts. Not the label. And you were wrong.

      Neurodiveristy–the understanding that there is a diversity of neurology in the human population. That while some will face greater challenges due to their neurology, that they are disabled by their neurology, they retain the same rights as anyone else. That those rights include the right to dignity and, as much as possible, self determination. A person’s value is not diminished by disability.

      If you wish that the IACC have people who are against the above statement, then, yes we disagree. If you are against the above statement, then, yes, we disagree. If you do not recognize the above statement as the basis of neurodiversity, then go fight straw men elsewhere.

      Many people mistake the idea that unproven medical “therapies” are experiments and not treatments. That a person’s rights include the right to not be experimented upon. Many have, over the years, misrepresented those who espouse this idea as being “anti-treatment”. It’s a straw man. It’s a way to avoid the very real discussion of when do these medical experiments become abuse. Chemically castrating children–that’s not a treatment, that’s abuse. Bleach enemas that remove the intestinal mucosa–that’s not a treatment, that’s abuse. I will not remain silent because bullies wish to label me “anti treatment” or “anti cure”.

      Again, I wish you well. I wish you could admit your mistakes and apologize as well.

      • Billy Cresp June 10, 2014 at 07:20 #

        Those of you who are into anti-cure ideas have a habit of refusing to acknowledge genuine disagreement with your goals. If you are going to argue for those ideas, at least don’t continually accuse opponents of misinterpretation, distortion, strawmen, etc. I would sure like it if the rhetoric that you defend is innocuous, and wasn’t going to really deter the community from the important goals. But I can’t be sure of that, and am not sure if efforts are progressing well.
        The immediate discussion concerns government based research reviewed by the IACC, not those dangerous absurd treatments based on faulty information. I think you know that. I think we deserve proper representation in this government agency as this concerns all of us. This should include significant participation in the discussions and decisions regarding the biological/medical research involved, and of course to make sure it has quality and rigor, to whichever extent public members have the influence/authority to do so.
        Only having individuals who are ideologically against cure in general, or who are heavily compelled by those who are against cure, to serve as self-advocate members, is not fair representation. There is no majority of the autism spectrum that really agrees with those ideas. Being a passive member who at least doesn’t condemn treatment, doesn’t suffice. I hope Mr. Robison doesn’t continue to get too influenced by the “diversity” crowd, and makes committed efforts to favor research. I think having a self-advocate doing robust representation of the majority of the spectrum, shouldn’t be so much to ask, now that it’s known that at least a handful of self-advocates can serve on this committee.

      • Sullivan (Matt Carey) June 10, 2014 at 22:43 #

        “Those of you who are into anti-cure ideas”

        To whom are you addressing this? Please back up your comments with facts. Then tell me what cure there is that anyone can be against.

        I do not accuse. I acknowledge what I have observed.

        “The immediate discussion concerns government based research reviewed by the IACC, not those dangerous absurd treatments based on faulty information. I think you know that. ”

        The immediate discussion concerns, as is often the case, someone coming here and trying to make me defend positions I have not taken. As should have been obvious to you, I took the example of the dangerous “therapies” to point out how many people come to their mistaken viewpoints. Many who fight for the rights of autistics online include the right to avoid abusive “treatments”. Those who defend those “treatments” then try to frame the discussion as a cure/anti-cure discussion to avoid the difficult point of using untested, unproved, poorly thought-out, dangerous “treatments” on disabled children. It’s a tough position to defend, so it is easier to try to reframe the discussion. Simply put, people create a straw man. This was used as an example–again, something which should have been obvious to you.

        “The immediate discussion concerns government based research reviewed by the IACC,”

        Let’s take this discussion to reality, shall we. Tell me what actions individuals have taken on the IACC to which you object. Not just, “I think they don’t represent me so I’m complaining”. What have they done is objectionable.

        By the way, the person who originally posted the complaint misrepresented the autistic adults on the IACC. I showed that clearly. The gentleman has avoided even acknowledging his errors, much less apologized for them.

        “I hope Mr. Robison doesn’t continue to get too influenced by the “diversity” crowd, and makes committed efforts to favor research”

        All I can say is that this statement exhibits a high level of ignorance. Creating the false dichotomy of “diversity crowd” and “favoring research” is, to be blunt, nonsense. Mr. Robison is highly focused on promoting research. One researcher I spoke with commented about how useful he has been in grant reviews by focusing attention on the needs of the community. “How does this benefit autistics” is the phrase I believe was attributed to him.

        I do not have opponents. If you feel that you do, and I am one of them, that is a unilateral position that you have taken. Perhaps you should rethink that position. It isn’t helping the communities.

        I wish you well. I wish you a better understanding of what you claim to speak about.

      • Sullivan (Matt Carey) June 10, 2014 at 22:46 #

        To restate what is written above:

        Neurodiveristy–the understanding that there is a diversity of neurology in the human population. That while some will face greater challenges due to their neurology, that they are disabled by their neurology, they retain the same rights as anyone else. That those rights include the right to dignity and, as much as possible, self determination. A person’s value is not diminished by disability.

        If you disagree with that and instead wish to discuss the “diversity” crowd (using scare quotes and all), I can point you to sites where you will be welcomed.

      • Billy Cresp June 11, 2014 at 01:46 #

        I’m talking to you and I’m referring to the ASAN and the like. The characters who extensively and belligerently express inflammatory and daft ideas. Don’t mention that there is no cure in a way to upset me. One of the goals of this government agency is to pursue cure. Sound research is necessary if cure is ever to come around. The anti-cure crowd knows this too and wants to undermine it.
        “The immediate discussion concerns, as is often the case, someone coming here and trying to make me defend positions I have not taken.” Someone addressing a serious concern or making a suggestion, shouldn’t be so rudely interpreted as a threat/insult.
        “Many who fight for the rights of autistics online include the right to avoid abusive “treatments”. Those who defend those “treatments” then try to frame the discussion as a cure/anti-cure discussion to avoid the difficult point of using untested, unproved, poorly thought-out, dangerous “treatments” on disabled children.” They don’t just say to avoid abusive fake treatments. Many of them don’t want treatment at all. They don’t want the legitimate research done by Autism Speaks and the government. They yell eugenics to describe genetic research. They attempt absurd ethical complaints regarding biologically oriented research. There hasn’t been much talk of the merits of cure among those debating dubious treatments. I’ve seen it as experts debating charlatans. That malfeasance isn’t an excuse for denying and demonizing the importance of real research/science.
        “Tell me what actions individuals have taken on the IACC to which you object. Not just, “I think they don’t represent me so I’m complaining”. What have they done is objectionable.”
        It’s not basically what they did. It’s what they haven’t really done. I’ve looked at some of the transcripts. I wonder why some of those members weren’t even present at all the full meetings, and why I didn’t see much participation in the discussions of biomedical research. They don’t all have to be up to this, but this is a responsibility to many.
        He did not misrepresent them. These members should be accountable for their general positions and what they say. What you did was not that clear.
        “Creating the false dichotomy of “diversity crowd” and “favoring research” is, to be blunt, nonsense.”
        It is not false. Just read some of the things they’ve been saying. If you condone what that crowd does, don’t deny it. Like I said, I hope Mr. Robison is getting something done well or continues to do so. And he received no approval or recognition from the anti-cure crowd until he resigned from Autism Speaks.
        This is not unilateral. I am not alone in my concerns. Many autistics actually aren’t pleased with these ideas/vibes. I am tired of others attempting to intimidate and shame me into silence. And please don’t show me such mission statements. That fringe group hasn’t bestowed rights on anyone. They don’t deserve credit for that. They haven’t accomplished much, and what some call dignity or self determination is subjective. Disability isn’t diversity.

      • Sullivan (Matt Carey) June 11, 2014 at 03:06 #

        “I’m talking to you and I’m referring to the ASAN and the like.”

        Doesn’t seem like it. When you start out by mischaracterizing me, you aren’t talking to me. You are talking to your model of me, which is wrong.

        “The characters…”

        OK, so now you start belittling others…

        “Don’t mention that there is no cure in a way to upset me. ”

        I didn’t. You don’t read minds, so you don’t know why I wrote that. I wrote it because it’s true. “Sound research is necessary if cure is ever to come around. ” I.e. you understand that there isn’t one. Who knows what the future will bring.

        “Many of them don’t want treatment at all.”

        Consider the t-shirt that one IACC member wore to the first meeting of this incarnation of the IACC: “By body, my choice”. Not “don’t ever create a cure”. “My choice”.

        “It is not false. Just read some of the things they’ve been saying. ”

        It is false. You can and apparently do believe in false things. We all do. In this case, your statement was false. A false dichotomy.

        “If you condone what that crowd does, don’t deny it.”

        I can neither condone nor condemn what your strawman army does as I am not in your thoughts.

        ” Like I said, I hope Mr. Robison is getting something done well or continues to do so.”

        He is getting things done.

        “And he received no approval or recognition from the anti-cure crowd until he resigned from Autism Speaks.”

        Really? I and others you likely consider to be in the “anti-cure crowd” must not be in the “anti-cure crowd” as

        “And please don’t show me such mission statements. ”

        You are complaining about an idea I espouse. I gave you the definition. If you want to dismiss it as a “mission statement” and ignore what I’m saying, then we are done here. I will not fight your straw men. Go and hate elsewhere.

        “Disability isn’t diversity.”

        it is a part of diversity. I am diverse from my son in part because of the disabilities we do not share. Very simple. Very obvious.

        “They haven’t accomplished much”

        “they” have focused attention on autistics adults, for one example. What little research is being focused on autistic adults and the changes that are coming from that are due in no small part to the people you decry. Before them, the discussion was almost entirely on very young children, etiology.

        “This is not unilateral.”

        Here is where I used the term “unilateral”

        “I do not have opponents. If you feel that you do, and I am one of them, that is a unilateral position that you have taken.”

        Again, *you* are drawing the lines of opponents. I refuse to take part in that. I do not agree with you on the points being discussed here, but that does not make you an *opponent*. Opponents are invited to find another place. If you are tired of people trying to intimidate or shame you go take that up with the people trying to do that.

        “He did not misrepresent them. ”

        He did. He claimed that they are anti-treatment. I pointed out clear examples that show he was wrong.

        And, with that, good day.

  4. www.viswebconvention.com November 5, 2015 at 15:34 #

    Asking questions are really pleasant thing if
    you are not understanding anything totally, but this paragraph provides pleasant understanding yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: