08 September 2012

What They Should Be Talking About

Today is Saturday, the eighth of September. I am standing near Farragut outside the National Geographic Museum while hundreds (possibly thousands, but probably only hundreds) of mostly non- Autistic people gather a fifteen minute walk away in Foggy Bottom for Autism Speaks's annual Autism Law Summit at George Washington Law School, which is not so coincidentally the home of an enormous Autism $peaks chapter (and unfortunately, the home of a few excellent disability studies theorists.) Welcome to the District. I hope you're enjoying the awful, awful gales and the absolute sheets of torrentially downpouring water. Oh, and the copious thunder and lightning too. I also hope you're enjoying the mosquitoes and terrible humidity. We did this just for you, to let you know just how welcome you are. (And there goes the booming crash and roll of thunder.)

Most of you, perhaps even all of you, will never read this blog post. That's okay. I don't expect you to. (Some of the staff at your national office, however, are another story. They don't like it much when people criticize you.) But I'm writing for the benefit of those well-meaning souls who'd like to know just what they can do to support the lives and needs of real Autistic people right now, but maybe have the wrong ideas about how exactly to do that. Some of you may be standing here in the storm, or trying to hide indoors from it. Or you might be sitting in front of your computer at home, breathing a sigh of relief that you're not here with me in D.C. (The weather truly is horrid.)

The Autism Law Summit happening right now is about insurance reform to "cover autism." Let me translate that. The Autism Law Summit happening right now is about how to lobby for legislation that will mandate insurance coverage of interventions like "ABA." ABA (applied behavior analysis) is the modern form of B. F. Skinner and Ivar Lovaas's theory of behaviorism as applied with vicious and efficient cruelty to the lives of thousands of Autistic children and youth across America. While the ethical, monitored use of it may be beneficial in the case of life-threatening behaviors, its uninhibited use and abuse is a great way to induce internalized ableism, self-hatred, and post-traumatic stress disorder. Many Autistic adults who were put through ABA as children now have PTSD. Those who weren't subjected to it seem less likely to have PTSD. Let me put it this way -- what the people at the Judge Rotenberg Center do? Yeah, that's ABA. An extreme and very patently obviously abusive form of it, but ABA nevertheless.

I would like all of you currently sitting at George Washington Law grateful to be indoors and out of the storm, know what I think the priorities in law as applied to Autistics should be.

Rather than focusing on laws that will reassure you that it is not merely legal but legally sanctioned to subject your children to therapies focused on normalization, making them indistinguishable from their peers, and suppressing natural ways of speaking and moving, you should be concerned about what is happening to them at school. You should be concerned about what unscrupulous advocates and judicial officials are urging you to do to your children when they leave high school. You should be concerned because Autistic children are disproportionately likely to be referred to the juvenile justice system for behavior and offenses that would not result in such referrals for typical children. You should be concerned because Autistic youth and adults are disproportionately likely to be determined unable to work, inappropriately reerred to sheltered workshops, and subjected to egregious abuses in the world of employment. You should be concerned because another state (Florida) was just added to the list of states in trouble for violating Olmstead.

The treatment that we receive as sanctioned by the law, under existing laws, and because there are few laws to protect our rights is a direct result of the narrow-minded focus on "what will help us make our children more normal." This provincial lens serves not merely to deny your children opportunities now, but to reinforce old prejudices and systems of belief that allow these legal institutions to be perpetuated. The law affects our lives, for better or worse, across the lifespan.

Less than half of all states have statutory limitations on the use of restraint and seclusion in schools, and only slightly more have strict regulations against their use. Only six states have statutorily mandated education about autism for police and first responders. Not one state keeps records on hate crimes committed against the disabled, and neither does the federal government. Several states still maintain institutions, and people like me remain confined there without access to, much less integration into, their own communities on the other side of the gates.

If you are going to talk about autism and the law, talk about what you can do in policy, regulations, and legislation to advance full inclusion in schools, provision of integrated and inclusive work opportunities doing meaningful work, prohibit adverse discrimination in healthcare and medical decisions, end segregation and institionalization in housing opportunities, promoting the education and empowerment of Autistic youth and adults to influence local, state, or national policy, and ending abuses and violations of our fundamental human rights everywhere. We don't need or want ways to make us more normal. We want our human and civil rights, and we want to be treated as fellow human beings and citizens under the law the same as everyone else.

We want laws that will prevent hospitals from denying us eligibility for transplants on the basis of false assumptions about our quality of life and how we live. We want laws that will prevent clinicians with PhDs from electric shocking us like lab experiments for looking at them the wrong way. We want laws that will ensure that when people kill us, they go to prison just as they would if the victim had been nondisabled. We want laws that will ensure our just and equitable treatment in the criminal justice system. We want laws that will challenge and end all segregation and institutionalization.

These are the laws that are important to us. Why aren't we there, at this "Autism Law Summit?" Why aren't these issues being discussed? Because in the end, this summit happening not too far from where I sit isn't about us, after all. It's about pandering to ableist notions of what should be done to Autistic children in the name of normalization, and it's about being able to claim that they're doing something important and meaningful while ignoring the real issues. While ignoring our murders, both active and passive, and while ignoring a long train of abuses perpetrated against us because the law either permits it or looks the other way. And because of that, thank you, but I'm content to stay in Farragut this afternoon. Enjoy the storm.


  1. What's the difference between learning more helpful behaviours and trying to make a kid more normal?
    Would you argue that there isn't one?
    If I can help a child learn communication skills or provide sensory experiences that decrease a kids need to engage in faecal smearing, isn't that a good thing?
    If A.B.A. helps me understand the environmental aspects that provide a distressing experience for a child then doesn't it have some value?
    I completely agree that Autism Speaks holds a deficit view of Autistics, they do not speak for me or my family, but where are the lines?
    When my 8 year old is swearing at me and destroying our home I put him in a bear hug, which enrages him more but calms him eventually, what would you have me do for him instead?
    I live this, draw me some lines..

    1. I can only speak to my own case. But for myself, learning more adaptive behaviors and living skills, and trying to be more normal, were not only very different things, they were *mutually exclusive.*

      We have to do things in ways that work for us, that work with and not against how our nervous systems work. And things got a lot better for me when I quit trying to be like other people, accepted that I would never be normal, and got down to learning how to do what I needed to be able to do, and to deal with the world in ways that worked well for me.

      So, for instance, I have good communication skills, but they're very different from most people's.

      (Fear, sadness, or grief in autistic people often looks like anger or aggression--is there a reason that this could be the case with your son?)

    2. Absolutely, there are 100s of reasons...
      Perceiving the differences between himself and other students, not feeling liked, the death of his mother..
      fear, fear, fear, fear that me and his dad will die..

      But what he needs to do is deal with the NORMAL issues living in community brings. So if we are eating dinner as a family, but he doesn't want to join us he accepts the consequences of that action (aka no ice cream) that's fine... but what if he wants something he cant do for himself during that time? The natural consequences of that are that he has to wait until we are finished, right? My boy knows this at the beginning of the day, at the end of the day he doesn't know this, at the end of the day he goes into full melt-down, which is also fine, except that his melt-downs are dangerous for everyone....
      So now what?
      If he cant respond to my suggestions like, find a calm place, read a story, listen to his ipod, play the drums whatever and his dangerous behaviours persist, what should I do?
      If I ignore it or put him in a separate space, I am showing him that he doesn't belong to us.
      If I hold him and wait with him, in a way that protects us both, he still belongs to us, his behaviour has been addressed and our community laws have been upheld.
      Sometimes, when I visit here I read that restraint is unacceptable, I don't know what you would have me do.. Obviously it is unacceptable to hurt anyone and you may argue that, that's exactly what I'm doing. Maybe someone can tell me something else I should be doing with a swearing, throwing, hitting 8 year old?
      (I know I sound pissed but I'm actually thankful for your reply)

    3. No, it's okay...I would be scared and frustrated. And unfortunately, this is where my individual knowledge breaks down, because I wasn't that kind of a kid...I was the kind that internalized all the rage and fear and was constantly imploding in ways that no one else could see....which is just a different can of worms.

      Lydia/community...are there parents we know of who have more physically challenging young children who might have good suggestions? Off the top of my head...is there any way that he could have a safe place in the house to go to to work off that kind of physical rage? Like with pillows that he's allowed to kick or punch?

    4. Do you know I've just been reading some more blogs written by autistic adults describing their experiences of ABA.. I've never seen "therapy" like that in Australia... ABA is used to literally plot a childs behaviour to help identify patterns and causes so that adults can manage the environment better and then offer positive reinforcement to encourage other behaviours.. there's no punishment.. just rewards. Some of the things I've been reading about are really scary.
      At home we do pillow and doona screams, mattress punches, jumping on the trampoline, long walks, we climb and play fight. But melt downs are melt downs.
      They are decreasing in volatility long term.
      I am mostly terrified that I am hurting him in ways I cant understand... I'm very critical of where I get my parenting information from. I would much rather advice from someone who has a personal experience of neuro-diversity, than some overpaid government employee who wants to look at my child in an iddy biddy box.
      So.... hence the ranting on Lydia's blog..
      Thank you for your tolerance Lydia.

    5. That's great to hear that they're decreasing in volatility long-term. (Long walks are one of my favorite things.)

      I thought of something last night...and it's so basic that I'm embarrassed that I didn't think of it before...but does he know that he's autistic, and does he get told that it's not bad to be different from his peers?

      (Of course it's hard to be different, and there's not a lot of helping that, but just knowing the facts of why you're different, and that there's nothing wrong about it, can go a long way towards understanding yourself, and therefore being less scared.)

    6. Hannah what you describe above is called positive behavioral supports, and we apply that to our son, who is deeply Autistic and nonspeaking. We redirect behaviors, offer alternatives but no punishment or negative reinforcement is involved. But here ABA is everything under the sun. And not only is causation not seen as important but it is abandoned. My son was abused in school and we have not in four years of homeschooling been able to completely erase the damage they did him. Which is why Lydia and I met. Because of the work she did in Massachusetts. She encouraged and supported efforts in Maryland and other States to stem the tide of the seclusion and restraint done in the name of education. We always question what we do as parents. We want to do what is right for our children. The fact that you read and continue to read and now understand what is happening here is great.

      BTW I hate to disagree with Kate Mia about ABA being the only treatment other than chemically lobotomizing a patient to prevent self injurious behavior but the CPS model was successful in clinical trials and resulted in a change to the model of care in what was previously an emergency treatment center for violent children with trauma induced psychosis its use as recovery therapy for victims of ptsd resulting from aggressive ABA treatments is increasing. If your child has a baseline communication method, even a yes/no switch as my son used until recently Collaborative Problem Solving is humane and works http://www.thereachinstitute.org/cps.html

    7. Thank you Kerima. As an almost-teacher student rights are a huge deal to me, I am so sorry that your son has suffered so much at the hands of people who should be working for him. It really saddens me that so many professionals have so much faith in their practices and their right to authority.
      Chavisory, we talk about autism a lot at home. We have a couple of great adult friends who are autistic and our boys know and identify with them too. My youngest, the angry one, doesn't raise discussion yet but the oldest does, I'm not sure how connected the little one feels with being autistic but we are very optimistic about difference and diversity around us, so we will get there. If you have any tips in that department I'm open!
      I really appreciate your support!

    8. This comment has been removed by the author.

    9. Previous comment removed due to typos.

      Kerima, current research on the effectiveness of collaborative problem solving is limited to oppositional defiant disorder and the therapy is suggested for use as a form of therapy for some individuals with Aspergers syndrome on the spectrum with angry, defiant and explosive behaviors.

      There is not enough research associated with this method, identified by a recent government meta analysis report, to provide sufficient evidence that it is a proven effective in preventing severe self injurious behaviors seen in autism.

      This doesn't mean the research will not be accomplished in the future, or it is not effective for some now, but currently the only identified proven effective means of treatment for self injurious behaviors identified in a recent meta analysis by the government is limited benefits from ABA and a limited number of drugs identified in the government report on the AHRQ.gov website for autism spectrum disorder published in April of 2012.

      I did not intend to suggest that everyone with self injurious behaviors are drugged into oblivion, but this can be the case in the most severe injurious behaviors that are not responsive to lower doses of drugs or therapies including those not proven effective by the government meta-analysis, per therapies like the collaborative problem solving technique that appears to work for some individuals on the spectrum to address angry, defiant, and explosive behaviors and which may also work for some with self-injurious behaviors on the spectrum, but is not suggested as an effective means of treating self injurious behaviors for people on the spectrum on the website that promotes the therapy.

      Some insurance companies determine what treatments they will cover based on government reports like this provided on the proven effectiveness of treatments. In supporting legislative efforts requiring insurance companies to cover therapies this factor is taken into account, which to this point per government analysis is limited to ABA with enough research backing it, to establish a track record of effectiveness in some subgroups of autism.

    10. Hannah, I see no issue in using ABA to help an Autistic person learn useful things like dressing themselves (if possible) and adopting better coping strategies for dealing with strong emotions. The problems come when practitioners teach things like 'Quiet Hands', which is counter-productive when a stim is harmless. ABA is one-to-one, so there are no other students to be distracted by a person humming and waving their hand in front of their face, a stopping stims without replacing them leads to distraction and frustration that all comes back to bite you on the ass when the child is older, stronger, and completely without coping strategies as a result of misapplied ABA.

  2. Unfortunately research has not proven any other method of therapy for individuals on the spectrum effective against self-injurious behaviors, except for drugging them into oblivion. Unfortunately ABA is not proven as an effective therapy for all children on the spectrum that exhibit these type of behaviors, but it is worth mortgaging one's home for those that care enough about their children, whom are not covered by their insurance company to provide the only effective means of therapy in some cases.

    While I agree this summit should address the other issues you describe, it is not reasonable to suggest that this effort is not a worthwhile one addressed in this summit, because it can make the difference between a child that is able to stay at home with their parents, and a child that could end up in an institution, as a potential live saving alternative to self injurious behaviors.

    I can guarantee that the children and the parents who may effectively benefit in a potential life saving therapy, more than welcome the efforts that these individuals are undertaking in their effort to expand legislation that requires insurance coverage of this proven effective therapy for some on the Spectrum.

    It is likely if you were in the shoes of a parent or of a child that was smearing and eating their feces, as well as banging their head on sharp cornered objects in a repeated manner and you could not afford or your parents could not afford potential life saving therapy as the insurance company would not cover it, that you might more clearly see just how important the focus of this summit is for hundreds of thousands of parents and children on the spectrum that walk in similar shoes.

    This isn't about Autism Speaks it is a serious potential life or death situation for some of these children on the spectrum. There is too much focus on the myths associated with Autism Speaks as an organization that can do no positive benefit for individuals on the spectrum; it can take the focus away from the actual needs of individuals on the spectrum.

    Any of these individuals that might read your blog from the actual summit would probably wonder how one could be so insensitive to the needs of these children, directing negative energy toward a potentially life savings therapy, instead of directing the positive focus on issues that could be addressed as well, as you more effectively do.

    The advocacy effort of the autism speaks organization to further increase insurance coverage for ABA therapies across the nation has likely literally saved lives, as well as saving the parents potential continued ability to provide a home and subsistence for their children. This is real life stuff that impacts real life people on the spectrum across the nation, as much as any of the other issues of real concern that you focus on in your article.

  3. So I actually have self-injurious behaviors and have had behavioral interventions (but not ABA - I'm too old) and also take medications that help reduce self-injurious behaviors, and I have to say that while it depends on the kid, (a) medications short of drugging kids "into oblivion" can definitely help, especially SSRIs, tricyclics, and anti-anxiety meds, and (b) focusing entirely on coverage of a single type of therapy is extremely dangerous and wrong. There are other interventions that are extremely promising - most notably DIR/Floortime and its focus on sensory needs, which helped me far more than any behavioral intervention has - and when these become the new state of the art, people will suffer because those new therapies aren't included in the old laws.

    Many of the autistic adults who denounce ABA themselves have, or had, the same self-injurious behaviors that you describe. And they still didn't consider ABA worth it.

    Still others have been subjected to ABA even though they had no life-threatening self-injurious behaviors at all; they merely flapped their hands too much, or didn't make enough eye contact.

    Efforts to provide therapies that are necessary to prevent institutionalization are already covered to some extent by the Olmstead doctrine, which Lydia has already mentioned. Although Olmstead doesn't cover insurance companies, I think both Lydia and I would endorse a broad effort to require insurance companies to cover care that helps prevent hospitalization or institutionalization, but leaves the type of care unspecified so that the law continues to have relevance after the state of the art has changed.

    1. ... meant as a reply to Kate Mia. Oh well.

  4. Whoselaw, if there was any realistic potential of success of legislation being passed for an insurance company to be required to cover unspecified care, I agree that would definitely the best case scenario, but it is not a realistic option, as a law is not likely going to be passed that require insurance companies to cover therapies that have not been proven as significantly effective in the treatment of at least some subgroups of Autism.

    Sorry, I did not intend to suggest that all individuals with self-injurious behavior are drugged into oblivion, that do not have access to ABA therapy, but some cases of this have been reported.

    The only thing about individuals on the spectrum that can be relied upon as common are the actual diagnoses that people share invented by the folks from the American Psychological Association. Other than that from what I can see folks on the spectrum are as different from each other as they are from anyone off the spectrum with their positive attributes, negative attributes, and challenges associated with the spectrum. I think it will be helpful if both the folks off the spectrum and on the spectrum take this in consideration of decisions when decisions are being made about people on the spectrum.

    Unfortunately, until we have some type of Universal health care, I don't expect to see this with insurance companies, as they have so much lobbying power. Autism Speaks has some legislative influence, but it does not rise to the level of influence that would be necessary to control insurance industry general policies on covering medically unproven treatment, other than the research it funds that might provide evidence for the benefits of therapies/treatments in the future.

    The government leads the way on research at about 335 million dollars a year, followed by the private Simons foundation at about 53 million, and then autism Speaks at 18 million, per 2010 dollars reported by the IACC. These are the research funding entities working together that can potentially eventually support research providing sufficient evidence for additional effective new treatments/therapies, that insurance companies will more likely cover in the future.


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