Two Autistics Spoke. How Many Listened?

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …

Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. 

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

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68 responses to “Two Autistics Spoke. How Many Listened?

  1. It is a common practice to not call on people from whom one does not want to hear. Given the vaccine-causation orientation of the hearing, this did not surprise me. But Michael John and Ari have gone on record, and there is public evidence, of their eloquent speeches, and that will make a difference, even though the congresspersons declined to encourage any more comments from them.

  2. Let’s not forget Rep Eleanor Norton, who tried to ask the hard questions about services and adulthood, including those who do not get the benefit of early intervention.

    One of the replies was something to the effect of, ‘Oh, well, they had no diagnoses and their family just thought it was a quirk.’

    Which promptly triggered me, and Norton responded, with a clear tone of disapproval, “So it’s up to the families to figure it out?” Unfortunately, she only had a minute or so to ask questions, but it was nice to hear the mouthpieces sputter for a second. Also spoke volumes that someone who wasn’t autistic or on a board of something that benefits autism say it. Too bad it counts for very little and was drowned out by so much noise.

    I visited her Facebook page, and thanked her, and from the looks of it I’m not the only one.

    If it’s okay with you, Ariane, this is where she can be found:
    http://www.facebook.com/CongresswomanNorton

  3. I enjoyed reading your blog. It offers a great perspective and so did those speeches. The support for those on the spectrum must improve regardless of causation. At the same time though, I think we need to research possible causes outside of genetics unless we all believe we as humans are headed in a direction of autism in the future and that this will better our world. Possibly…. but I do look at it a bit differently.
    As a parent who IS pursuing biomedical intervention for my 3-year-old son I feel I must speak up here. I don’t believe autism is a gift but I don’t believe it to be a curse either. I see it as a challenge for my son, for our family. But I see my son as himself, as a child with autism, a child with awesome hugs, a child with a strong passion for shapes and Rudolph the Red-nosed Reindeer. A child who loves the water and nature. I see my son as having gifts that I can’t always wrap my head around. I know he’s amazing. I accept him as he is this day. I love him as he is with no conditions on that love. My choice to pursue biomedical intervention with diet and supplements is in response to proof we have from testing that his body is not well. The yeast, bacteria, genetic condition and liver issues can be healed. And healing these issues may very well improve his behavior and brain functioning. Will he still be unique? Of course!!!! And I welcome his uniqueness with open arms. Will he still have some difficulties. Don’t we all?
    My goals are to improve what we can in his body, to try to repair damage caused by toxins and to looooooooooove him always as he is every day. I don’t want a new son. I love the one I have. It hurts to hear parents say that by pursuing biomed, we are sending a message that he is broken. Look at his blood results. His body actually is putting up a huge fight. I wouldn’t be able to sleep at night if I wasn’t trying to help him be a well child. We do this because we love our son, not because we don’t accept him as he is. I could just as easily point fingers at people who aren’t supportive of biomed, because I know it’s healing children’s bodies and improving their speech and behavior. I know it offers hope. To each their own, do what you will, but we’ve got this. ♥

    • Thanks so much for your comment. I think the danger is not in parents trying to do all they can to help their children flourish, the danger comes when they insist that because whatever it is worked for their child, it will therefore work for others, biomed or otherwise.

      It’s always wonderful to hear from families like yours who have found ways to help their children. ALL our children need guidance, support, encouragement and our love so that they may confidently face the world as they grow older, knowing that they are loved unconditionally and valued as members of society.

      • I agree. I often compare children or adults with autism to snowflakes. Each person is unique and each case of autism manifests differently and for different reasons too I’d assume. I know my kiddo as a genetic irregularity which keeps his body from methylating properly, so for him b12 shots will probably help him. But not for a child who does not have that gene. I think services are a huge part too and we are coming from that angle as well. But we wouldn’t be able to afford ABA if weren’t for my son’s grandpa who is funding it. That’s a huge problem, making services affordable. And that’s what these speakers were getting at also, which I agree with.

    • I really, really loved your comment. It sticks right to the heart of the matter.

      What pisses me off more than anything is judgement. Until, and unless, you have a child who struggles through life, how DARE you question what the parents are doing to try to help him/her?

      If our kids had cancer, or Down’s, or cerebal palsy, or *whatever* – we would still love them, and pursue treatments that will hopefully improve both their quality of life as well as physical well being. To do otherwise would be irresponsible, IMO.

  4. I should mention when I say the genetic condition can be healed I mean that we can help his body to methylate properly with biomed by using b12 shots. Sorry if I confused anyone. 🙂

    • One of Ne’eman’s first comments yesterday was: “I remember recently visiting a
      service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for
      people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had
      plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.
      Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to
      not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life,
      to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation
      of autism, that is impossible. That is quite simply not the case – Augmentative and Alternative Communication technology has
      existed for many years now and can empower even those of us who cannot speak to make their voices heard. ” Clearly the work of someone who does not gloss over the “low end” (whatever that is) of the autism spectrum.

    • Speaking of genetics – we just had genetic testing done for our daughter. It turns out she has a duplication of the Q28X chromosome. If they somehow in the future find a way to do gene therapy for this, and we pursue it, is that somehow “wrong”? Or not accepting her the way she is? Of course it’s not. But I’m there are those who will see it that way. It is what it is, I suppose. All we can do is love our children to pieces and do what we feel is right by them.

  5. I’ve said this before in other venues, but here is what I think it is:

    In so-called “high-functioning” autistic adults, a lot of more typical people see the kind of people who it has always been okay to bully and marginalize: awkward, strange, mentally off-beat, dressed wrong, gender variant, asking the wrong questions and saying the inconvenient things, unable or unwilling to follow the rules that everyone else does, often poor, often surviving on the fringes of society.

    Their children and grandchildren, by contrast, are “really disabled.” Never mind what we were like as children. We (see above for list of things they don’t like) could not possibly have any connection to their children. We can’t possibly be really disabled, have had many of the very same issues their children do, and also have been here all along, as a large percentage of the people it’s always been okay to ostracize, abuse, and erase…because that would mean that the people they’ve been doing it to are, in fact, people just like their children.

    So their children CAN’T grow up to be like us.

    The evidence on our side doesn’t matter. Our childhood histories don’t matter. Statistics and epidemiology don’t matter. Don’t we understand that their seriously disabled kids just can’t grow up to be like us?

    You notice how defensively angry they are? At the very notion that we’ve always been in the world?

    • Right. And also since the “epidemic” argument is what compels everyone to rush to get their checkbooks, your very existence is physical evidence of the gaping hole in that argument…

      • That too. There’s always been a war on us, but now they’ve figured out how to fund it in a systematic way, and it’s the story that we’re a new and unknown threat.

  6. Also, Ariane, your whole last paragraph of this post is a total “theory of mind” win. 😉

  7. Good that Mr Ne’eman and others have an opportunity to put forth their opinions.
    But like other ‘advocates’ he glosses over the thorny question of the lowest functioning, those with significant cognitive deficits, who cannot learn to use alternative communication technologies. The most vulnerable and dependant people. For whom there will never be ‘good jobs’.

    Perhaps that is why he was not paid much attention to. I wonder if he is aware of the amount of money spent on research vs the amount already spent on support for Autism (around 410 million vs 33 billion in the US per year).

    • Who is it that we’re declaring “cannot learn to use alternative communication technologies” before we even let them try? We hardly know everything about autism or about the possible reaches of communication technology; how can we write them off? And we’re STILL finding people all the time who were thought to have insurmountable cognitive deficits, and then were found not to, when they had access and support to the right technology, even though their autism is fairly severe.

      In the reasoning of your comment, anyway, it’s the cognitive deficits and not the autism that’s the real compromise to quality of life. So…what do we do about that, and how does continuing to attack autism help?

      And…so what, in opposition to Mr. Ne’eman, are you suggesting we do? Surely finding a way for them to share their experiences of their own lives should be integral to how we try to help them?

      • There isn’t sufficient evidence that alternative communication technologies will help all autistics communicate. Communication technologies can’t substitute for language skills, which can often be lacking. It isn’t just a difference between speaking and not speaking. And being verbal doesn’t necessarily mean understandable. Many really do have cognitive deficits in various kinds of functioning. They are part of a reality that exists regardless of anecdotal descriptions of undetected abilities. Biomedical/genetic research into autism that is being conducted, is supposed to uncover the causes and mechanisms of the cognitive deficits that many autistics have.

        • And there isn’t sufficient evidence that alternative communication technologies won’t help either. The truth is, we do not know. Sue Rubin wrote, “Being looked upon as feebleminded is something I have been forced to endure my entire life. What an extremely difficult hole to have to climb out of, to fight for your own intelligence and capabilities.”

          I prefer to assume competence given the alternative and I urge others to do so as well, because assuming competence will never do damage where as to do otherwise can and will.

          • They don’t know, but they talk like they would benefit all, while not condoning development of therapeutic measures that will help in the future. As I listen to their vibes, I think they’re denying what disability fundamentally is, while pressuring me against acknowledging that I really do have cognitive impairments, that I really cannot do many things, even though my disabilities are inevitably apparent. They talk of a few surprise success stories, which are catchy, but there could be lots of stories they don’t tell which don’t turn out with positive endings.
            Sometimes assumptions turn out to be false, and do nave negative consequences. If someone assumes a competence is there, help needed to deal with a probable lack of the ability will be less likely to be provided. Many competencies can be estimated anyway.

            • Nah, actually ASAN and me and most disability rights activists actually DO know that augmentative and alternative technologies won’t help EVERYONE. But the funding into research for that is pitifully small and we won’t know who it will help if they can’t ever get any access. I have known children who were only allowed access to speech-generating-devices and other technologies AT SCHOOL and could not take them home! I don’t particularly appreciate someone saying that I don’t fundamentally know what disability is. I live with it (and with patronizing attitudes) 24/7. Typically it is not the Autistic advocates who talk about catchy surprise stories; that’s the realm of media reports. The person Ari talked about, once again, was someone who did NOT have a glitzy “success story.”

            • I don’t assume a competence is there; I just don’t presume that it isn’t until proven so by every plausible method. And even more so, we can’t presume that thoughts, inner life, and experience aren’t there just because they haven’t found a mode of communication.

          • Well said, Ariane, and of course, Sue Rubin!

          • I resent when autistics who have communicative and other abilities, want to keep others from getting the same abilities they have. I’m just responding to their aggression.

            Unproven treatments aren’t considered “cure”. There is real research out there to develop therapies that would be considered “cure”. But those who complain of cure seem to want to undermine that. If the word cure has negative connotations associated with it due to risky treatments, the genuine goal of safe treatment still shouldn’t be condemned.

            Acknowledging negative realities isn’t the same thing as disparaging the victims of those realities. Many of those who complain of negative talk make it clear they think disability of any severity is a neutral phenomenon that shouldn’t be removed. Children will know they have impairments. I don’t know who grows up to like their impairments. Parents not acknowledging problems won’t prevent a psychological toll. As they grow up, they will have to deal with the rest of society or remain isolated, and difficulties are inevitable. I wish it wasn’t that way. “Cure” research is not where the majority of money is spent, and it doesn’t require an exorbitant amount of time to advocate for. The amount of money that needs to be spent on services is on a much larger scale, so ending cure research won’t lead to sufficient funding for services. I think the government needs to increase funding for services.

            There is currently no proven way to ensure basic abilities to all on the spectrum. Why shouldn’t biomedical therapies to be truly researched be considered? It could be possible to have words other than cure. The goal still needs to be defined. I’ve been wanting to know who agrees with me on the goal of independence. Not all do agree. Some have made it very clear that they don’t.

        • “There isn’t sufficient evidence that alternative communication technologies will help all autistics communicate.”

          So…we shouldn’t even try? We shouldn’t find the hell out how far we can go in helping people to communicate by alternate means before we decide they need to be done away with? And by what dark magic is autism being deemed more separable from the people in question than cognitive deficit?

          And yes, I know that communication is much more complicated than speaking vs. nonspeaking. You are telling these things to someone who knows this as well as anyone. Doing this has been dubbed “condesplaining,” and, as the appellation implies, it’s seriously condescending.

          I am autistic. Obviously my writing ability is good. My speech is usually good, but *nowhere near* my ability to communicate in writing, especially regarding emotion and complex ideas. It’s also very scripted, though I’m a good actress, so you might not realize if you met me face to face. (By “very scripted,” I mean that 80% or so of the language I use in a typical work day is at least somewhat scripted, not spontaneous.) My vocabulary is great…and yet, something pervasive about my usage of the English language and my understanding of it can make it seem like I’m speaking a different language than everyone else around me. I cannot even tell you the trouble I had making myself understood when I was younger. Not because I couldn’t form words and sentences fluently. But I just could not get people to understand what I was trying to say. And I have to go through a somewhat grueling audio to visual mental translation process when listening to others.

          And stuff like that is the tip of the iceberg when it comes to some of the communication issues that autistic people can have. That’s before we even start to really get into auditory processing issues. Here, read this:

          http://rednovemberblacknovember.tumblr.com/post/36965024916/why-you-should-always-try-aac-plus-some-links

          This woman alone has a ton of stories very much like this. And I know, anecdotes are not data…but what’s the data when we’re treating people like this?

          I concede that some people may be so cognitively impaired or severely autistic that they may not be able to effectively communicate. But I’m not convinced we should stop trying.

          • Nobody is stopping you from trying. A lot of it is being tried now. It is your side that is trying to restrict efforts to research cure. And cure isn’t “doing away” with them. It is the distribution to them of the abilities the very high-functioning autistics have. Impairment would be gone in the process. They would proceed to live without obstacles of impairment. You haven’t defined what universal aspect of autism is being endangered by a possible cure. The only goal is to stop cognitive deficits. As those deficits are very frequent within the spectrum, cure is mentioned in association with autism. I’m not condesplaining. I’m trying to make a point by bringing up something that is often not considered. I know you know what I mentioned. And what I myself also know, is that the things you mentioned are the tip of the iceberg of the communication issues that autistics can have, as my communication is a lot weaker than yours. I think that a lot of language is “scripted” anyway.

            • “You haven’t defined what universal aspect of autism is being endangered by a possible cure.”

              The strengths and unique aspects of perception and thinking, and richness of emotional and sensory experience that accompany autism along with the deficits. We attend to the world differently from most people, often on a far greater level of detail. The insights and creativity born from that experience would be lost with a cure.

              But what you are describing is not a cure; it’s amelioration of some of the drawbacks, and I’m all in favor of that, to the extent that people do indeed suffer from some of them.

              But do you seriously think that “very high-functioning autistics” live without impairment or obstacles? They don’t. I know a couple. They just have different ones.

              “It is the distribution to them of the abilities the very high-functioning autistics have.”

              You can’t distribute strengths to people. They come only from within people. I am all in favor of research into how best to teach and support people to be able to unlock and develop their own full capabilities, and ameliorate comorbid issues to the greatest extent possible. But that’s support and teaching, not cure.

          • Who is getting these strengths? The deficits are burdened on many on the spectrum, but not on the ones who have the strengths. I do think the very high-functioning are without impairment. They hint at it a lot. I want drawbacks gone. I think amelioration seems too vague. You shouldn’t get to limit the progress. You don’t want to clearly condone getting rid of impairments. Whatever strengths you have “within” shouldn’t belong to just you. Someone should make sure others get them to be within them too, through some biomedical means, as this deals with the nervous system. My full capabilities are far from enough.

            • “Who is getting these strengths?” Like I said, you can’t just distribute strengths to people. It doesn’t work like Santa Claus. There’s not some unfair distribution process from someone on high.

              “The deficits are burdened on many on the spectrum, but not on the ones who have the strengths.” That’s just silly. I have strengths, and every autistic person I know does, but all of us also have weaknesses and deficits. (And I know people all over the spectrum.)

              “I do think the very high-functioning are without impairment.” Well, they’re not.

              “They hint at it a lot.” They’re lying, the ones who hint at that. Even non-autistic people have impairments; every last one of them does. They just have a different set.

              “I want drawbacks gone. I think amelioration seems too vague. You shouldn’t get to limit the progress.” I have no wish to limit progress; I WANT progress for all of us.

              “You don’t want to clearly condone getting rid of impairments.” I don’t even know what you mean by this. I want people to be able to get whatever help will make them more comfortable. I just think “curing” is actually a counterproductive way to go about that.

              “Whatever strengths you have “within” shouldn’t belong to just you. Someone should make sure others get them to be within them too, through some biomedical means, as this deals with the nervous system. My full capabilities are far from enough.”

              Okay, now…I’ve seen this sentiment before. And it’s seriously disturbing. You’re making it sound like the high-functioning have some hoard of talents and strengths that they control and don’t want to share, like greedy children who don’t want to give away their toys. *It does not work like that.* The strengths that I have are the result of not just my individual phenotype and all of the genetics and epigenetics involved that are unique to me (and unique for every single person), but the interaction of those things with my personality, education, upbringing (much of which was not good, btw), childhood environment, reactions to adversity, decisions about what I wanted and what I was and wasn’t willing to do to myself for it, times when I got hurt, times when good things happened unexpectedly, good teachers and bad teachers, abuse and kindness, my interactions with all of the other unique people in my life, and a great deal of work on my part.

              I can’t just firewire that to you. It is not like on Fringe where they can take out distinct parts of Walter’s brain and put them in other people. There’s not some magic or biomedical recipe that you get access to once people like me stop opposing a cure.

              Guess what. However far you ever go in being “cured,” or having your deficits wiped out, however many skills you learn, however much you have your pain and disability relieved….there will ALWAYS be someone who has something you don’t. Making peace with that is just life.

          • We should never give up helping non-verbal individuals find a way to communicate. As Rosemary Crossley and Doug Biken are know to say, “Not being able to speak, is not the same as not having anything to say.” Just today in a Sunday School class for young people with disabilities that I assist with, It was so exciting to watch one mostly non-verbalyoung man be able to type with support and also make independent choices by pointing to the correct answers to questions given him, a minimally verbal young woman make choices with support, and finally a young man who speaks well but for some reason couldn’t say the right answer (word retrieval issue) so he typed it by himself on a letterboard. All were communicating, but each in his/her own way.

          • There is an unfair distribution even if it’s out of direct control. Why do you and your friends get to do many things many others on the spectrum can’t do? Why do you have all this success if all on the spectrum just have “strengths and weaknesses”? It can’t be just due to supportive environments. I know what they disclose of their abilities when they’re not expecting criticism of their privilege. Not all have impairments. That’s just an excuse to justify some individuals getting lots of the skill based success, while others can’t get through basic tasks. You can’t pretend to be on our side while being against cure. And condemning irrational fake descriptions of cure doesn’t count.
            I tried to reason with them and appeal to their compassion, but the high-functioning are acting greedy when they justify disability of others. I don’t know what firewire is. But real science is trying to devise a way to get rid of such disability. Gene therapy may be involved. If you undermine research, that cannot occur. I won’t make peace with hierarchy.

            • Yeah. They remind me of a guy in an FB group I’m in, his kids and mine have autism apparently. His kids play the violin and are good at school. My kid is six, is intellectually disabled and cannot talk. This man says a cure and even the current research into Autism is a bad thing and vehemently opposes it. It is very unfair. If such a thing were available, he and his children do not need to take it do they?

            • Billy and Nostromo – (I’m addressing you two, as you seem to understand each other and so perhaps can explain this to me). Reading what you both have written, it sounds as though both of you actually resent Autistics who are able to communicate. Am I reading your comments correctly?
              Nostromo – when you write “Yeah. They remind me of a guy in an FB group I’m in, his kids and mine have autism apparently. His kids play the violin and are good at school. My kid is six, is intellectually disabled and cannot talk.”
              Who is “they”? Autistics who can speak? Autistics who may not be able to speak but who, with support can communicate through typing? Autistics who have trouble communicating but have musical talent? Or just anyone who seems to be more “able” than your child? I’m curious about this because I hear it from other parents too. And if you are feeling annoyed and resentful of Autistics whom you perceive to be more “able” than yours, why is that? Why aren’t you just as resentful of all the non-autistics who speak of your child as a “burden” and “lost” and all the other awful things they say, which then justifies the abuse that continues unabated of Autistic people? I really do want to understand this thinking.

              Billy – you and I had a conversation on a post I wrote on the Huffington Post last summer. I remember you wrote about how you hoped for a cure so that you would not be dependent upon others to do basic things. I don’t know anyone who would argue with you that finding ways to help you become independent isn’t a good and worthy goal. Sometimes I think the semantics of “cure” conversations get derailed by the words used, which become lines in the sand, dividing people into camps who actually want similar things if we just had better words.

              My biggest issues with the word “cure” are – it suggests this is something parents can strive for, which in turn makes many of them (I was one of those parents) put their child’s life in danger doing any number of risky and bizarre treatments that deplete their bank accounts while encouraging us to see our children as “diseased” and “broken” not to mention the tremendous psychological toll this takes on our children and Autistic people while ensuring we spend the majority of our time, energy and money on the hamster wheel of “cure” taking time and resources away from finding ways to help our child learn to read, write and communicate. (These are only a few of the reasons I personally do not like the word “cure” and I haven’t even touched on the whole issue of eugenics, the ethical and moral issues of prenatal testing etc.)
              So, just for the sake of this discussion, let’s not use the word “cure”. Is that possible? Is it possible to agree that everyone would like to see research going to finding ways in which people can live more independently? Do you agree that this is what you are hoping for – to be able to live your life without being dependent on others to do basic things? To be able to live a full and productive life?

            • Billy…it sounds like the “high-functioning” people you’re hearing from or hanging out with are just awful people, if they’ve given you the impression that they have all success and no impairments and that they could share their success with you but they’re just greedy and won’t. Sorry, but that’s not how the world works.

              I justify disability as a natural part of the human landscape…because the more I look around me, the more I think that it is. And because I am disabled and don’t think that I belong to the world any less because of that. MOST people will be disabled in some way, at some point in their life cycle. Disability is just part of the fabric of human life.

              And if you think that me and my “high-functioning” friends are without disability or impairment…you are wrong. I haven’t by any stretch of the imagination had only success. I’ve had some success and I’ve had some serious trouble. I’ve had things get easier and things get harder. I don’t have a lot of things that normal people my age take for granted. Life isn’t fair, but I’ve had to work very hard over many years for what I have–I didn’t just get it and want to keep it to myself.

              I don’t know what else to tell you. I can’t make you like your life, and frankly, I don’t think a cure probably would, either.

          • How does the world work? It doesn’t mean the disenfranchised and unprivileged uninterruptedly putting up with intolerable conditions without rebellion and conflict. One needs to expect a backlash at times.

            Not all that is natural is wanted or bearable. Some want to make things better. Disability occurred as permitted by the laws of nature. But that doesn’t have to be permanent. Since you worked that hard to have all you have, what does that mean for those who don’t have much? What does that say of their efforts? I’ve tried over and over, sinking lots of time into pursuits only to get familiarity with them, thinking of different ways to attempt tasks to get them right, while floundering in getting real achievements/success. I repeatedly lose ground on tasks/goals due to basic functioning and processing defects. I am very tired of venerating the supposed work ethic of the very successful. I don’t know what your circumstances really are, but some out there really have it easier. Many have tried to help me but enabled minimal benefit. How painstakingly and how long do I have to try and exert myself to prove I’d be worthy of the abilities cure would bring to me?

            • Why are you disenfranchised and unprivileged–because you lack some abilities that others have, or because there are people treating you badly or inappropriately trying to control your life?

              Has anyone ever started by respecting how you really work when trying to give you help or opportunities? Have YOU ever respected how you really work and don’t work? Sometimes there’s a whole lot of saying “no” involved to attempts to help that don’t actually match up with what would help you. Do you give time to the things you love, or are you allowed to? Have people really tried to remove barriers to whatever you want to be able to do that have nothing to do with the thing itself, but are extrinsic social expectations that get in the way of your being able to do it?

          • It is because I lack abilities others have. Not some abstract crude mean person restraining me directly. Short-term memory, visual/spatial/motor skills, task monitoring, etc. are fundamentally needed facilities.
            There isn’t really some unique way that I work. I just can’t work that much. There are tasks I cannot do and lots of errors that ruin my completion of tasks. I’ve improvised many times to at least stabilize what I can do. I’ve tried different ways. Others have been doing tasks for me. I’ve had lots of time, in and out of school, to pursue interests. But I couldn’t learn efficiently and understand certain aspects enough. And my reading comprehension is very weak and slow. There are no “barriers”. There is a lack of access to the resources, which are neurological, which are indispensable to task completion. What do extrinsic social expectations have to do with this? All activities/tasks come from the activity of the brain. If there is something weak in its circuitry, it shouldn’t be a surprise that there are things one can’t do. There isn’t proof that there is some special or unique way a brain can get abilities, as a substitute for a weaker aspect of the brain.

            • Interesting your description of your problems. I think often the aspect of Autism that is most disabling for my son is how hard it is for him to learn. An example is at a water fountain the other day. A normal child you would tell them to push the button or show them, and they would observe the water come out and have learnt that and be able to do it. I showed my son who was very interested in this, by pushing it myself, by putting his hand over the button and pushing it down, by pointing and explaining. I was patient but it took 30 goes before he got it. He kept getting my hand and pushing it on there because it seemed he couldn’t understand the amount of pressure required or the angle to put his elbow at to put weight on it to make it work. He would either hit it or push too softly. I think to myself that demonstrates how hard it is for his senses to provide feedback to his brain and co-ordinate actions in there or perhaps to form the pathways of whatever it is for something to ‘stick’. But it did. That sort of thing and other things I observe in my son makes me ponder, and think that the difference between the brain in people with Autism and those without really is something small and subtle. Just my opinion..

              It also makes me wonder how often Autism/ADHD/learning disabilities masquerade as each other or have the same root cause but with different expressions.

            • nostromo – I read your description of teaching your son how to use the drinking fountain and I just want to say, I understand. Completely. It is the same for us. I applaud you for being patient and calm and not losing your temper or finding fault or judging, you sound like a good, kind man who loves his child very much. I appreciate your sharing that story because this was very confusing to me in those early years. I thought she just couldn’t learn and each time I came away with this conclusion, my fear mounted. But I was wrong. She CAN learn, it may take many, many times, but she can and does and some things she gets immediately much faster than her non-autistic peers and that is such an important thing for me to hold onto and remember when I’m tired or stressed or worrying. Anyway, I wanted you to know how much I appreciated reading it.

            • Okay, lacking abilities means that you might not be able to do things you wish you could–that is NOT the same as being disenfranchised.

              And the things you describe are exactly the kinds of things that I think we SHOULD be developing more effective therapies and treatments for, whether it’s gene therapy or teaching strategies or medications. But those things aren’t cure. Autism is pervasive; you can alleviate all of those difficulties, and still be left with an autistic brain, and a new and different set of difficulties and challenges. My abilities certainly don’t make me cured.

              “There isn’t proof that there is some special or unique way a brain can get abilities, as a substitute for a weaker aspect of the brain.”

              No, brains develop abilities through constant use and practice. (That does not mean that all brains can develop all abilities. But that’s as true of the most able as it is of the least able.) I was not born with the abilities to do what I do for a living. Some aspects are built on inborn strengths (like a fondness for list-making), and some things I had to straight-up learn, some things seemed to come quickly but necessitated long periods of watching, listening, and distilling information, and some of those things took YEARS of constant engagement.

              It can look like magic, but I assure you, it is not.

      • I’m suggesting that one of the things that we should do is continue on the path of trying to identify the cause of Autism and possible treatments, and that may be one of the the best chances long term to benefit Autistic people, and their families.

        What if our knowledge of Autism was just around the corner? I don’t think we should pull funding from Autism research until we know all we can.

        • I’m not suggesting we should stop funding for research; I think that research should be redirected, with input from autistics concerning what our experience is and what would help us.

    • Actually if you read the transcript and listen to Ari on c-span, those who are “lowest functioning” are one of the first groups of people he discusses with a story that Paula Durbin-Westby transcribes in her comment just above this one, but it’s worth rewriting here again –
      “I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.

      “Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case – Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard. ”

      As far as your claim that there are those who cannot use alternative communication technologies, I will reiterate Chavisory’s question in response to your comment – how do you know there are those who cannot? Have they been given the support and professionally trained facilitators who might be able to help them succeed? I have witnessed first hand far too many people who were deemed cognitively incapable only to see them go on to use FC and become independent communicators. Have you met Amy Sequenzia? She is someone who cannot communicate independently, who must rely on a facilitator and yet communicates eloquently despite her epilepsy and other diagnoses which make it impossible to fully type without support.

      We know so little when it comes to all of this. None of us can claim with certainty the incompetence of another human being no matter what their neurology or diagnoses.

      Ari’s point, (I believe) is that without funding for programs that will help ALL Autistic people we will continue to speculate about competence levels of a people who have proven over and over that they are not only capable but far more competent than most people who know them believed.

      • I’ve seen those that so far have been unable learn to use AAC, I’ve seen people try to teach them. Which I would agree with you is not to say perhaps they couldn’t be taught – but that so far its proved not possible. I’m not sure what you do further at that point in practical terms in trying to facilitate communication. There is always a finite supply of resources.

  8. Ari Ne’eman does not gloss over the needs of so-called low functioning people. If you check the ASAN website, you can see that, since its inception, ASAN has always supported initiatives that will help people all across the autism spectrum, as well as people with other disabilities. Please look at http://autisticadvocacy.org/, including archived materials covering six years of Autistic advocacy work.

    • Thank You, I read and its impressive stuff, and I pretty much agree with everything I read. But what I meant by ‘gloss over’ is that the model of self advocacy while laudable seems impractical for someone who can’t communicate. And when I mean can’t communicate..what I’m trying to impart (but not very well) in my messages here is to describe someone for whom it’s not so much the lack of technical skills required to communicate but the understanding of the purpose of communication.
      I don’t know if Ari’s idea of taking 1/10 of the budget spent on causation and spending on alternative communication would go very far at all. 1/10 of 410 million is 41 million. I know what we and the govt has spent on my child, and that amount of money might serve to aid 1000 people if your lucky, its a drop in the bucket. As you would probably know is not a matter of simply getting someone an iPad and P2Go and a little training and off they go.

      Its why I mentioned the figure of 33 Billion in support and associated costs and growing. I would have thought this, the economics was part of the point of the hearings being discussed. To go back to answer the original question posed, perhaps that is one of the reasons not many listened.

  9. As I often do, I’ve made a list-post of responses, including this one. I will keep adding to it as the days go by

    http://lizditz.typepad.com/i_speak_of_dreams/2012/11/historic-congressional-autism-hearings-november-29-2012-1.html

  10. Love this! Powerful! I want to watch the C Span coverage

    Sent from my iPhone

    • Oh I hope you do Ariel. Though I have to admit, it was an added plus to watch it (virtually) with so many “friends” on Facebook! But I’ve since watched segments of it again. If you can’t handle Dan Burton and others skip toward the end as Michael and Ari are the last two speakers. Although Eleanor Norton’s questions are well worth slogging through some of those earlier testimonies. After you’ve watched it come back and tell me what you think!

  11. Great article, Ariane.

  12. No we missed it. Is there a link where we can hear Ari and Michael’s talks?

  13. I think I commented further up on the thread than I intended. Re: the glitzy success stories- that’s what the media does. Ari’s story was NOT about success; it was about what most people (non-autistics and general public) would NOT consider a success story. Re: Us not knowing about disability- not true, as we live with it. NO, we don’t think AAC will help every single person! One thing ASAN has NEVER done is gloss over disability. Please read Ari’s statement just one more time. There’s nothing about success stories in it at all (also, if you scroll back up, you can see what I wrote, which was supposed to be down here, not halfway up the thread!)

  14. To answer Ariane above, I can’t speak for Billy, but you are not correct in my case. Quite specifically ‘they’ – being the people I resent – are those who oppose the research into Autism and possible development of treatments for Autism that might be made available to OTHER people or their families who might want said treatments if they were available.

    It just happens that the only people I’ve encountered so far who hold that opinion are Autistic people, there might be non-autistic people out there who hold the same view, I don’t know.

    • “It just happens that the only people I’ve encountered so far who hold that opinion are Autistic people…”

      And that should tell you something, shouldn’t it? When a huge faction of autistic people oppose the way we’re treated and spoken about?

      I don’t oppose research and making productive and ethical therapies available, to help make people more comfortable and more capable in the world howsoever they wish. But so far, the track record of attempts to cure, or to separate the essence of autism from the essence of a person, has overwhelmingly hurt and dehumanized autistic people.

  15. Thank you for your kind words above Ariane, yes I love my little guy very much!
    I really enjoy your blog which I have just discovered recently and it seems your experience is a lot like mine, I will be sticking around 🙂

  16. Billy – I have been thinking about you a great deal these past few days. I want you to know that. It’s important to me that you know your words are being heard. I know that doesn’t change anything for you, but I want you to know I hear you and I hear the despair and the frustration and I wish there was some brilliant thing I could tell you that would give you hope. Anything I write seems meager and wanting. So let me just say this – I am glad you are reaching out and talking about your feelings. I know I am not the only one who hears you, hears your pain and cares. I care.

  17. Pingback: Two Autistics Spoke. How Many Listened? | jshaw70's Blog

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