13 days

In 13 days, it will be April.

And it will begin.

And I’m terrified.

I’m talking, of course, about Autism Awareness month.  While a good idea in concept, it’s really a terrifying month for autistic people.

Because we get to hear about what burdens we are.

We get to hear about what therapies out there can help us look less autistic (and hey, that’s the goal, right?)

We get to hear about how “high functioning” people don’t count because they can speak (except the judgment is often made against people who can type and who can blog and has nothing to do with speaking in the first place) and how “low functioning” people don’t count because they aren’t self aware enough to even think.

We get to hear about cures, and Autism Speaks and …and… and….

It’s overwhelming.

I also happen to have been born in the month of April.  It really darkens a month that used to be really really happy for me, and it makes me dread the entire month, and want to hide under my comforter until it’s over.

Please, dear readers, understand that I want a better world for all autistics.  I want the public to understand more about autism.  But “awareness” campaigns are faux awareness.  They’re pat-yourself-on-the-back-for-being-a-decent-human-being sort of campaigns.  Please read here about why awareness isn’t enough. It is the single best, most concise post about the subject.

Here’s how you can really help.

You can stand up for autistic people being bullied both online and offline.

You can stand up to Autism Speaks and their sponsors and tell them, “no.  This is not helping autistic people.”

You can fight for every child to receive accommodations in school suited for their individual needs, and for every adult to have accommodations at their workplace and suitable living conditions.

You can fight against the extremely low wage that developmentally disabled people are often paid – far below minimum wage.

You can fight against the preconceived notions about the kind of people that autistic people are (dangerous? rude? Self-centered? Well, some of us are, but that’s not because of autism).

You can stand up and insist that erroneous ideas about autism causation are not based in any scientific fact, and avoiding vaccinating your child does not help prevent autism.

Don’t light it up blue for Autism Speaks.

Don’t accept faux activism as acceptable.

Don’t accept “awareness” that autism exists as being enough, when most people have no idea what autism even is.

Thirteen days left and I’m steeling myself against the barrage of negativity.

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75 thoughts on “13 days

  1. Hmm…Autism Speaks has helped my child and family very much. I’m sorry it didn’t work out for you.

    Pitting parents who are already stressed against other parents just for their beliefs, help no one, by the way.

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    1. If you think this has anything to do with pitting parents against each other, you have missed the point entirely, and indeed, you are part of the problem.

      Autism Speaks has silenced autistics who want to tell the world that we aren’t suffering (except from ableism), that we can have fulfilling, successful lives (even if we still look very much autistic).

      It isn’t about one parent’s opinion over another’s, and I’m failing to see how you came to that conclusion in the first place.

      Here, read some more about Autism Speaks: http://thecaffeinatedaspie.wordpress.com/so-what-is-the-problem-with-autism-speaks/

      The linked page is also its own separate post, and can be found about 4 posts below this one.

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  2. I share an April birthday with you. This will be my first April as an Autistic person (as in, knowing that I’m Autistic). I have no idea what to expect. I had zero awareness of Autism Speaks prior to getting diagnosed and now they seem to be everywhere I turn. 😦

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    1. I’ve always known OF Autism Speaks, just as one of those “advocacy groups”. But that was before the Aspie light was triggered. Everything i see NOW about them, seems to cast a light of a Corporation instead of a GROUP that helps people. Nothing raised ever seems to go to charities, research, or AID in any fashion. Mismanaged and inappropriate to say the least.

      But, maybe the “faux” activism can be guided or called out by those who are aware.

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  3. Hi there! My name is Courtney and I am the new Executive Director for The Autism Research Foundation. I feel exactly the same way that you do about “awareness” campaigns not being anywhere near enough (or close to) what the community needs everyday and I would love to chat with you more about your ideas. If you’re interested in chatting, send me a Facebook message on our page: http://www.facebook.com/autismfoundation 🙂

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    1. …I’m not caffinated aspie, but your group isn’t any better. Weren’t you founded by someone who unapologetically wants to drive her kid off a bridge? The blood’s on your hands too.

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      1. This is what I thought as well. I approved the comment but wanted to take some time to research the group’s origins before commenting. I do know that not a single Facebook friend likes your FB page, and that tells me something. Either you’re completely unknown (doubtful, with more than 500 likes) or you are a group to stay far, far away from.

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      2. Dear Kassiane and Caffeinated Aspie,

        It is definitely hurtful to be accused so wrongfully of saying such a terrible thing. I was unaware of what you could have been referring to, until I found the following Wikipedia article about an Autism Speaks-sponsored documentary, Autism Every Day, http://en.wikipedia.org/wiki/Autism_Every_Day

        In this documentary, a parent named Alison Tepper Singer did make such a statement. Our organization is not in any way affiliated with Autism Speaks nor Alison Singer. We are a small group as you’ve pointed out, started in 1990 as the first medically-accredited autism nonprofit with the goal of furthering neurobiological research of autism when such research was in its infancy. Research into the neurobiology of autism was actually started by our founder, who has dedicated her life to improving the care of individuals with autism and improving the medical field’s understanding of autism.

        Recently, we have begun to work in the greater community to improve understanding of autism by dispelling misinformation, so it is definitely important that we set this record straight, Kassiane, for this is certainly a misunderstanding. Our Facebook page, Caffeinated Aspie, was recently started in 2012, and as it grows we are excited to share important stories with the autism community and spread the word about exciting events and discoveries.

        I am so sorry that you would be disinterested in contributing to our mission because your friends do not know of us, and that you would immediately jump to the conclusion that our small nonprofit is to be avoided. If you truly want to understand us and give us the fair chance that we deserve, I would encourage you to email me personally and take the time to read through our new website, because we do value your opinions and are certainly concerned about the misrepresentation that has occurred here on your blog. http://www.theautismresearchfoundation.org

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      3. I trust the opinions of my friends, and it’s telling that none of them (most of them autistic, like myself) have ever heard of you, if you’ve been as instrumental as you claim.

        You can also hardly fault us for mistaking you for the Autism Science Foundation, which was created by Alison Singer: http://autismsciencefoundation.org/ It certainly isn’t a difficult mistake to make given the similarities in name and supposed purpose.

        I can’t even figure out from your website what exactly your organization does, what sort of “research” your organization sponsors. Why would I be interested in working with a group I know nothing about, whose website is entirely unclear about its mission and goals, and seems to only include autistic people as an afterthought but is still very parent-centric?

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    2. Your page is pretty noninformative and parent centric. So you aren’t Alison Singer’s organization. Allow me to throw you a party. That doesn’t make you good.

      I like brains. But I don’t see your organization doing anything that actually helps people with brains like mine. I see a lot of words for parents of people with brains like mine, but that does bupkis for me at best. At worst, it encourages their belief that they’re big damn heroes for not pulling a Singer & driving me off a bridge. It’s just so much more about us without us.

      I see not a thing on that page that acknowledges that autistic people have any stake in the direction of autism research. Again, I like brains. Like, really like brains. Like, my cats are GABA and Purkinge and I’ve considered a neuroscience career. But your organization is yet another place where my brain’s contributions are not wanted except as a subject. And if that isn’t the case your web team did a really bad job.

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      1. (and i mistyped my 2nd cat’s name but that’s ok. Purkinje doesn’t mind that as much as I mind being told that my asserting myself as a human being who is suspicious of About Us Without Us organizations is “hurtful”)

        I’m sorry to be dumping a second comment, but HURTFUL? The gall. The unmitigated, NT centric GALL. It hurts that we mistook one parent centered ultimately cure oriented organization for another.

        I’m sorry, can’t have too much sympathy. Too busy fighting for my actual rights. There’s a poster with the names of our dead, many killed because we didn’t get normal enough fast enough, over my computer. I feel for them.

        I don’t have a whole lot left for people who want to make me normal who are hurt that I mistook them for other people who want to make me normal, somehow.

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  4. I “unliked” Autism Speaks on Facebook a while back… they were annoying me. I have two boys with Asperger’s, and most likely they get it from me. Not that that bothers me. More people should have Asperger’s. The world would be much more organized and far less noisy! However, I am curious about why you feel Autism Speaks is not in the best interest of people with ASD.

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  5. I heard negative things about AS from the community but I reserved judgement on them…until the flash blog incident. Then I watched “Autism Every Day”. That justifies the criticism. They are exploiting our Autistic lives for their own financial gain, while giving us no respect or recognition as human beings. They also feed the public rhetoric that leads autistics being murdered by parents and caregivers.
    Though not related to autism, the same bigoted rhetoric was on display by CNN this weekend when Candy Crowley (yes…same woman who just moderated a presidential debate) disgustingly empathized with the two convicted rapists in the Steubenville case, lamenting not the pain, suffering, humiliation and trauma of the victim, but the lost futures of the two criminals.
    This rhetoric is wrongful, inhuman and it is the real epidemic upon our society, not autism. And it is worth getting into a fight over.

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  6. They are doing a autism art show at my church in April, and the money is going to our summer and winter camps, that are meant to include autistic people. (I am not sure how great we are at this, but I’m glad to hear its not going to autism speaks.) I am nervous at possibly seeing puzzle pieces and hearing talk about “cure”. However, I somehow got put in charge of a table that gives information about autism… and I could go crazy with that, providing information from advocates, challenging the cure/fix language, talking about neurodiversity. But I’m not sure how well some members of the church would react to that. I know many of them would show interest, but a few could be upset.

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    1. Well, one of the best signals as to whether such a camp is actually good at being inclusive of autistic people is whether autistic people have been instrumental in advising, designing, and trouble-shooting such a camp. Have they?

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  7. Thank you, Caffeinatedaspie. Maybe we can claim the month for ourselves and our children. The flashblog was great. Can we make this Autism Acceptance Month, or Diversity Rights Month, or Demand Human Rights Now Month? Can we light it up RED! (for love and a firey spirit). Maybe we can define the month. I like the fire/flame image for us instead of that stupid puzzle piece. Anyone for a red, orange flaming comet, Demand Diversity and Human Rights Now Month T-shirt!

    I don’t want tolerance or awareness for my child’s future. I want acceptance and equality. I want a community. There are millions of autistics and families of autistics and we can make a difference.

    First we accept ourselves and our children and our families; then we demand acceptance from our communities and country. Peace, love, and acceptance to you all.

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  8. I have no connection to autism or know anyone well that has autism but I do agree that normally awareness campaigns are so short lived that it is just for people to feel good about themselves that they are aware. I am a firm believer that we accept people for who they are and not what they are – sadly human nature is to label people

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  9. This is actually a very interesting read and to be honest makes me a bit ashamed of myself. Since my daughter was diagnosed 5 years ago, I have done everything I can to educate and bring awareness to Autism, not just in April but all 11 other months as well. But, if those with Autism actually feel this way, what can we do instead? How do we educate and advocate for them without overwhelming them and making them feel they are a burden?

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    1. There are lots that I will address in a future post, but for now, I will say this – fight against the Judge Rotenberg Center (see Autistic Hoya’s blog posts about it if you are unaware of what it is). Click on the link within this post, because there’s a lot of good info in that link. Listen to autistic people. To use a musical term, let us be the soloists and non-autistic people the choir. Contact government officials and speak about taking the focus of causation of autism and placing it on how to help us now.

      That list is overwhelming, I’m sure. I will have a more concrete, doable list that basically anyone can help with in a future entry (most likely tomorrow or later this week).

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  10. Jane, this IS also Autism Acceptance Month, and has been since that was started by Paula Durbin-westby three years ago. It just has not gotten around much as the Autism $peaks travesty has. I celebrate April, among other things, by complaining to Home Depot about their displays of blue lights.

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  11. I’d just like to say that I stumbled upon this blog while looking for information on autism speaks, and agree with some of the comments above, but I am very troubled by what I read above in how you dealt with that member of the autism research foundation team… You criticize the publicity stunts of autism speaks and then equally criticize a nonprofit for not having heard of them… it seems like quite the double-standard if you ask me. They were clearly trying to understand your perspective and you viciously attacked them because you had never heard of them. I for one knew very little about this organization but I think many people would join me in appreciating the work of the founding director, Margaret Bauman, who proved that autism wasn’t due to refrigerator mothers and I know a couple of families who have really struggled and then received a lot of help in her practice…
    It’s true that their website could use some work in explaining their research, but a simple search online turned up over a hundred published articles from their main research team, which is something that distinguishes them from the larger nonprofits: they fund collaborations that they are directly involved in, rather than throwing a small percentage of their funds at a project and claiming the research was their own… I don’t know–it seems they have a nice conference each year full of very respectable speakers, and that they’ve done a good deal of work despite being so small. If they plan to make a better impact in the aspie community rather than just communicating with parents, it’s important for us to lend our ideas, so we can help make a difference rather than just complaining. I’m definitely going to contact you, Courtney–I have a few ideas myself that I think could help you guys in your mission to lessen the burden of “misinformation” and I think this message thread is a good example of how a negative attitude can come in the way of important progress.

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    1. Hmmm. Tone policing, allowing zero room for error when an organization has a name that sounds awfully a lot like an organization whose founder is an ableist, potentially murderous individual, as well as completely ignoring that hey, power dynamics exist and criticizing oppressors isn’t the same as actually BEING oppressive.

      If many of the members of the autism community haven’t heard of an organization or haven’t suggested that it’d be wise to get involved with them, especially if they’ve been around for a dozen or more years, that seems like a problem to me. That seems like perhaps they’re very parent-centric and have not included autistic people in their discourse.

      Feel free to criticize my “negativity”. Frankly, I don’t have time for it. Fighting for my rights and the rights of other autistics takes precedence over walking on eggshells to avoid hurting the feelings of NTs.

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  12. I’m the parent of an Aspie girl. As such I am intent on making the world one that accepts her both how she is and for who she is. Cure language confuses and misinforms and makes parents feel guilty and kids feel broken. Autism does not require fixing. Accommodating maybe. Accepting definitely. Autism Speaks drive me nuts for the damage they do in drowning out the voices and words of Autistics. I feel I can learn so much more useful and important information from you and other Autistics than I can from any “awareness raising” organization. So thank you for your valuable blog.

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  13. The goal of cure is to make sure all on the spectrum have the abilities that the high-functioning have, not some weird goal of normalcy. You don’t have the support of that many autistics in going against medically based cure. Regardless of the problems at Autism Speaks, there’s no excuse to pretend that accommodations will get rid of all the problems mentioned. Some of us do have impairments that hinder the productivity of our best efforts, which has something to do with the low wages paid and vast unemployment. There hasn’t been a detailed explanation of what accommodations would enable all autistic individuals to succeed at the things they really want. The privilege of the very high-functioning isn’t just from speaking, but from having high levels of intellectual and functional aptitude which the majority of the spectrum doesn’t hold, while those resources are indispensable to success and basic tasks. Distinctions of ability are not morality judgments. My disappointing and frustrating experiences of living on the spectrum have led me to know that far-reaching changes are needed. It’s not like I was manipulated by media campaigns.

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    1. This is kind of a ridiculous comment that is being addressed to me, I think? You know, someone who struggled through school and has multiple learning difficulties in addition to autism? But okay, pretend as though the only anti-cure people are the “high functioning”. You’re wrong if you think that, by the way.

      Your comment reeks of self loathing and that frustrates me. Also, you seem to fail to see the differences between a cure and accommodations and help. A cure will not exist in the next 10 years. I can’t see it happening because it literally requires a rewiring of a person’s brain, something that this far, isn’t possible. You also fail to grasp that the most vulnerable will have this forced upon them. Children and adults whose parents hold guardianship for them, as well as those presumed incompetent to make decisions for themselves won’t have a choice and that isn’t okay.

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      1. The vast majority of those I see who are anti-cure are high-functioning and successful. As I read what many others on the spectrum have said, I don’t see as much unease over therapies and such extreme anti-cure rhetoric. I think I’m reacting naturally in being angry and sad over my problems as I’ve spent years trying to improvise and improve. I don’t know how hard I have to try to get the success others have. Accommodations can do only so much. Limiting goals to that are often framed with the idea of limiting expectations and omitting to recognize wants that can’t be met due to lack of certain abilities. Time is necessary for such a goal to be realized. That doesn’t make it invalid. Crushing that prospect won’t solve current problems. It doesn’t require “rewiring” of the brain. That isn’t a specific characterization of what it may be.
        Disability has been forced upon many due to the prevailing conditions. Nobody consented to having impairments. Medical therapies and other essential things aren’t an issue of consent for children. There isn’t any reasonable dislike of this. Nobody wants to go without abilities, and those who had some improvement, including from therapies, don’t regret it. Being shackled by such disability makes many vulnerable to being controlled by parents into adulthood to begin with. I want there to be a future where guardianship doesn’t have to be resorted to.

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      2. You’re making some broad generalizations here. I don’t know a single person who wants a cure who would be considered “high functioning”. And a medical cure won’t be forced on kids? Are you kidding me? Do you not realize the sorts of things parents are coerced into putting their kids through now? Bullshit that they aren’t going to be forced/coerced into a cure. They absolutely will.

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      3. You promote ideas that aren’t broadly favored among the stakeholders through discussion, much less through practice. Your ideas don’t explain reality. I do not think the permission of the high-functioning is required to allow others to be cured. Others should be allowed to have that choice for themselves. Again, nobody is masochistic enough to want to be impaired anyway. Children are under the authority of their parents, especially in essential matters. What else don’t you want children to be “forced” into? This is getting really tenuous.

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      4. “Ideas that aren’t broadly favored”? Says who? You? I belong to a number of different groups that are close to 100% autistic in population, and in the hundreds of autistic people I’ve met, I’ve met only half a dozen who believed the way you do. I somehow think that I would have met more if your ideas were indeed the majority (I’m not saying mine are, either, though they certainly seem more common).

        You see autism as an impairment. I don’t. I see the problems with being autistic as being mostly socially based. Meaning that it isn’t the autism that causes me problems. It’s a difference, and a huge one, and it is most certainly a disability in the society we live in, but it is society’s lack of acceptance of different ways of communicating, of different levels of tolerance of sensory input and socialization that is the problem.

        Children are PEOPLE. Not objects. I certainly don’t agree with the level of control that many parents exert over their children, and it seems as though you do. I find that attitude toward children despicable. My children are free to choose what they would like to eat, wear, whether they express affection toward other human beings and in what manner. They are permitted to say “no” and exert control over their own bodies. Many children aren’t afforded those rights. And “autism experts” tend to say that autistic kids need x, y and z when those things may not be right for an individual child or are downright abusive. And parents give in and force their kids to do these things not because they’re the right things to do, but because they don’t know any better.

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      5. A lot of these autistic groups who focus on being against cure have predominantly high-functioning members. I don’t know why you identified so few who think similar to the way I do. Some haven’t gotten into the discussion over cure much and haven’t discussed the predicted pros/cons. I don’t know how many of the hundreds you have met expressed a staunchly anti-cure position. You and others like to dismiss any autistic who expresses dislike of being disabled as having internalized ableism.

        Autism not directly being an impairment doesn’t negate the significance of the majority of those on the spectrum having debilitating impairments, while a small percentage are not impaired who have tremendous amounts of ability. That reality has a contextual significance for the group as a whole. Neurologically based impairments in communicative/language skills aren’t socially constructed. Nor are impairments in motor/coordination skills, or short-term memory, organizational, or other learning problems. Impairments are not different ways of doing things. They hinder one’s wanted decision to do things they exert effort to do. This is however part of a societal problem as it comes from the current ways that neurology guides and determines daily life.

        Since you know parents can be so problematic, why do you favor a system of dependence that inevitably keeps parents in charge into adulthood through guardianship? I don’t agree with what a lot of parents do in regards to this. I even know your side indoctrinated many parents into your line of thinking. I know that not all of the experts have helpful advice. Cure would obviate these excesses and vulnerabilities to unnecessary control. Convincing society and its individuals to suitably treat those who have this kind of vulnerability, won’t work completely in all aspects in the long-run. Negation of the rank/power imbalance will, so such overreaches won’t be available to them. Administering cure to a child, to remedy the root causes of impairment, isn’t on the same level as pushing dubious therapies. It is not a denial of their personhood.

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      6. You keep throwing around the word “high functioning” as if every person who disagrees with you is so. Well, no. I’m not high functioning. The majority of my friends who are autistic are not high functioning. Besides, the idea of functioning is something that allistics dictate in the first place and has little application except to invalidate others, and silence autistics who I suppose appear to have an easier time than you do.

        You’re right…not all impairments are socially constructed. However, would a language impairment be as big of a problem if we didn’t live in a society that valued speech over other forms of communication? Somehow I think it wouldn’t be as big of a problem. In a society where adaptive gear is the norm, it wouldn’t be a huge problem for someone to not be able to tie their shoes or drive a car or go do the shopping without sensory overload.

        I am failing to see where you think I favor a system of dependence that demands guardianship? Are you assuming that by allowing autistic people to be as we are, that we are somehow creating too many dependent individuals? Well, news flash. No one is independent. If you didn’t grow your own food, make your own clothing, etc, you are dependent on other people. It only seems to be a problem when disabled people demand accommodations.

        You are talking about something that scientifically is decades away, if it will happen at all. And it is a complete rewiring of the brain, changing a person at their core, and there is no chance that will ever be okay in my eyes. You may not want to be autistic, and you may loathe it, and that’s fine for you to feel that way. But for those of us who, while often frustrated with ourselves for not being able to fully fit in with NT society (or maybe not at all), we cannot divorce ourselves from our autism, and it is the very core of who we are. I would cease to exist if I were not autistic. My parents would have a child, but it’d be a different child with my same birthdate.

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      7. I don’t know what abilities you lack. I don’t know who your friends are, but the activists many see demonizing cure are very high-functioning and consequently can live as they please. Functioning isn’t just an idea, but an issue of reality. There’s no such thing as an allistic. There’s no separate reality or laws of nature for autistics. This portrayal of an unreality that operates according to the dynamics you talk of cannot and does not exist in real experience. That’s why the misery continues for so many. There is nothing validating in considering the experiences of a particular group according to some dystopian ideal.
        Language ability, not speech in particular, is a necessity for us as a modern species, for lots of reasons. It is valued due to that. That is not a moral issue. There is no getting around that. It shouldn’t be a privilege or a venerated talent. It should be a right. Adaptive gear can’t read minds. Those things are immense problems. I know through experience, and I basically just don’t like it. “be as we are” has no descriptive meaning. Disability isn’t some decision to allow. Not having the ability to do those things leads to dependence. Some need very frequent care from others. And dependence causes vulnerability to the control of others. Being in favor of such conditions means being in favor of the obvious consequences. You can’t disprove that, and resort to denying reality by claiming independence doesn’t exist. Trade isn’t an accommodation for disability. If nobody is really independent, how can there be a distinction between disabled and abled, and of accommodations being only for the disabled?
        Your description of cure is frequently repeated but doesn’t seem to match what the science shows. It isn’t changing a person at core. Nobody advanced that idea. It won’t be ok for you, but others want it. I hear so many descriptions of autism, so I don’t know what you mean by me not wanting to be autistic. I want to not be impaired in basic cognitive skills that are versatile and needed for daily tasks. This isn’t a goal to fit into some scary idea of an NT society of meanies to get approval. Many of you aren’t that downtrodden and live successful lives among NT as well as autistic colleagues/friends. You keep portraying it as a frivolous pursuit of conformity, when you already know that impairments in living skills are the issue, and have implied you want them to remain intact. You don’t want to acknowledge anything negative resulting from neurological impairment. I and many others are not living the way we want cause of disabilities we cannot control that others can’t remedy. Annoyances and unmet expectations follow as a result. I know this “self-esteem movement” derived rhetoric has been catchy, but the saccharine propaganda supporting it is considered condescending and offensive by many.

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    2. A. Billy, there’s no detailed explanation anywhere of what accommodations would enable all PEOPLE to succeed at the things they really want. That is practically a universal human problem, not just an autistic one.

      B. You still use “cure” in a frankly deceptive way. Your usage of it is simply not the dominant connotation of the word.

      C. There are plenty of parents of severely disabled young children who would read the paragraph you wrote here, and say “if my child could communicate like you, I’d consider them cured.” But are you cured? You say that you’re not. And you seem to consider me one of the nefarious “very high functioning,” but I promise you…I’m not cured. And if you’re thinking that if only you had the intellectual or other “resources” that the “very high functioning” have and then you’d be cured and you’d be able to do everything you want…then you are going to live every day of your life disappointed, but not because you’re autistic. Because there is *no such thing* as unimpaired human life or perfect and fair distribution of abilities.

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      1. This is going to be geeky, but I kind of see this issue like X-Men:The Last Stand. In it, mutants and non-mutants coexist, whether people know it or not. Movie quality aside, it explores the different viewpoints about the existence of a cure. One group is horrified that such a thing exists, another believes the cure will take away from who they are, yet there are individuals in the film who share a viewpoint similar to Billy’s, that they feel their mutation (in this case disability, illness, disorder, etc.) Is debilitating enough that they are willing to go for the cure. The use of the word “cure” is such a misnomer, though. It implies that something has disappeared, but autism, other disabilities, even mental illness, doesn’t do that. At this point, we may be able to bring it down to a level that’s much more manageable (and, I will admit, maybe even more acceptable), but there isn’t a miracle cure (at least, not yet). There’s so much we don’t know right now.

        One thing I do wish that autism awareness groups highlighted more is how people on the spectrum adapted and were able to communicate. It would send a positive message.

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    3. The vast majority of those I see who are anti-cure are high-functioning and successful.
      I’m an Autie who isn’t only considered to be low-functioning, I’m also unemployed. Do I want a cure for an intrinsic part of myself? Hell, no! So it’s not just ‘high-functioning and successful’ Autistic people who are against a cure, is it?
      Wait, scratch that. I do want a cure, one for the ignorance that is often displayed by people like yourself.

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  14. Hello there. Well, I am new to all this, but I can say, I try to look at things with an open mind. And Courtney and Frank, y’all need to consider that Courtney’s foundation is not different from the others. Okay. You want to get upset and feel hurt about tone? Let me tell you about tone. I just went to the foundation’s website.

    Here is your tone Courtney (quotes from your website) that I as a parent of a wonderful child find offensive:

    “for individuals experiencing the disorder”
    “that autism was related to abnormalities of brain development and not to poor parenting”
    “The TARF team networks with parents, teachers, researchers, and caregivers”
    “What Is Autism? Autism is a developmental disorder that is defined by behaviors including impaired social interaction, delayed and disordered language, and having isolated areas of interest.”

    You describe autistics as disordered, abnormal, impaired, and with narrow interests. How wonderful that you proved it wasn’t parents’ fault; well that’s what’s important right? Making parents feel good, supporting parents, networking with parents and researchers… Um, do you think someone is missing from all that? I have no problem with supporting parents; heck, I could use support like education programs that respect my child and that I can trust. But I don’t want your support at the expense of my child. Thanks, but no thanks. So I think your organization needs to do some rethinking about what acceptance means.

    And before you get all “hurt” consider the “hurt,” the attitudes and words reflected on your website cause. Sorry you can’t handle it when autistic individuals tell you that. Please consider that maybe you are doing something wrong if the people you want to help react this way to your message and your help. You are not helping when I feel I need to protect my child from organizations who view my child the way your does.

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  15. I hear your pain. My kid with some version of Autistic Spectrum Disorder was also born in April, the 18th. He refused to eat. I fought like hell to breastfeed him. He refused to sleep. His father and I spent a year in a state of 45min feed struggle, 45 min try to get him to sleep, and 45 minutes in fear of when he’d wake again, screaming. I was a total mess. Autism is not easy. It’s not wonderful to have to go to doctor after doctor telling them “there is something wrong with my child” because you understand more than they do (I happened to have studied autism since a fascination with it in my own childhood in the 70s and on through college and early jobs with infants; there’s some irony for ya!). I will tell you that the MMR vaccine, while not “causing” my son’s issues (and perhaps here is where other parents get confused bc they didn’t know infants like I knew infants) but it exacerbated his issues and resulted in a two week period where he would have at the least been hospitalized if not died bc he refused all food but the breast (yes he was 2 1/2 what of it?). He could not eat cheese without severe gritty diarrhea (oh still so sorry for the worker who had to clean out that playland at MacDonalds…) and that’s when I learned of the gluten and casein free diet. It was amazing how much his skills improved – not back to what he never had nor even the level he was at before the MMR, but close.

    And then years went by when he “seemed” normal until a summer program (he homeschooled bc of the lack of and level of stupidity of the services available to me through our school system…) called me to come get him bc they, as you noted, so many people automatically think that kids with asd issues are “violent” — and for the next 6 years our lives we chaos as his refusal to do even the smallest of task was met with resistance ranging from just plain no! to all out tantrums. These are the realities that parent’s of kids with ask face. Like it or not.

    We face problems at home and are told it’s our fault for not doing X, Y or Z. Our kids face problems is schools and it’s the kids’ fault for being autistic or the school not having the funding or or or or…

    Like you I dislike the many “CURE AUSTISM NOW!” campaigns. It isn’t like the chicken pox that can be “cured” (with time or any other method) it’s a state of being. It isn’t always an easy state of being for anyone on anyside of the coin. But it exists in numbers that are staggeringly high these days. Autism doesn’t so much need to be cured as to be understood. And accepted, like introversion or extroversion.

    I agree that the point of April should be Autism Acceptance Month. Job Awareness Month. Fair wages month (sorry I lost the alliteration on that one) – Housing, Access to Health Care and Mental Health Care in order to cope in a world that spins a slightly different direction than you do.

    I hope you are able to have an AMAZING AUTISTIC birthday (with no noise makers, balloon popping, cake that isn’t the right flavor or presents meant to “help” you rather than just be fun…)
    But I also hope as you blow out those candles you ask for just a little acceptance of how much energy and work your parents and all parents of kids with ASD have put into trying to raise you on planet earth…

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    1. I really didn’t need to know all your child’s issues and honestly, it creeps me out a little when parents are willing to share that much about their kids without a second thought.

      I find your commentary a bit condescending, and let me tell you – you do not get an award for doing what you should be doing. Are autistic kids sometimes more difficult? Sure. Do parents have to fight to get autistic kids what they need with more regularity than an NT kid? Certainly. That doesn’t deserve extra recognition and praise.

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  16. So much anger and so little compassion.

    If Autism is not a neurodevelopmental disorder defined by behavioral impairments SUCH AS impairments in social interaction, language development delays, other language impairments, and restricted areas of interest, what is it? This is straight out of the current DSMIV and ICD10 diagnostic classification.

    What should a science organization do, ignore medical guidelines and do an online poll on blogs to see what people’s opinions are on what autism is?

    The EEOC defines all Autism Spectrum Disorders as disorders that inherently and consistently limit Brain Function per US legal Code that enforces laws associated with the American’s with Disabilities Act. ASAN applauded the EEOC clarification that Asperger’s is included under the Umbrella of the term Autism in US Code. The identification of the disorder as one that inherently limits brain function consistently results in the determination of disability per ADA definition of disability.

    http://askjan.org/media/asperger.html

    Kudos to the OP that didn’t kick the person on the spectrum out of the conversation for disagreeing and instead just used ableist language to attempt to shame them for having a different point of view as “ridiculous and self loathsome”.

    I suppose that is better than being silenced.

    And before one gets the idea I am part of the “evil them” for not joining in on the social media cheer leading, I am part of the “real us”, at least on paper, that is officially diagnosed on the spectrum. 🙂

    There are many people on the spectrum that are kind and compassionate. I am not seeing that in some of these comments. If this kind of message was spread to enough people in society the kind and compassionate people on the spectrum might really have something to fear, from a perception of fear from society instead of compassion and kindness for people on the spectrum, including charitable organizations that currently demonstrate that kind of positive empathy for people on the spectrum.

    Some people on the spectrum are clearly demonstrating the ability for empathy in these comments. The empathy of anger. Empathy is not always positive; particularly on these topics of division.

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    1. Something being in the DSM doesn’t make it non ableist. Something being taught in classrooms doesn’t make it not ableist. Do you know that education and psychology degree programs still teach person-first language as universal, when there are three populations within the disability community (that I know of) that overwhelmingly prefer identity first language (and those are D/deaf, blind, and autistic, for the record)?

      Autism does not, inherently, by itself limit brain function. That is not a scientific fact that is even fully measurable. No one is asking people to take a poll about autism (and you know that if there was such a poll, it would focus predominantly on neurotypical parents of autistic children, rather than asking autistic people ourselves), though including autistic people in discussions and asking what it is like to be autistic and most of all, being respectful when speaking about us (we aren’t functions, we don’t all “suffer” from autism, and this isn’t about our parents) would be a good start.

      You don’t know that I had a long discussion back on a previous post with Billy Cresp. You don’t know that through that conversation, he refused to listen to the facts that autistic children are forced into treatment they don’t want (as are adults under guardianship). And that’s WITHOUT a cure. He has stated how much he despises being autistic because of various issues, so I find it difficult to see how referring to him as self loathing and that his idea that nothing bad would ever happen with a cure because autistic people aren’t ever forced into things they don’t want is ridiculous falls at all under ableism.

      Anger at oppressors, and yes, parent-centric autism orgs are certainly oppressors is not wrong. I do not lack empathy, but I do refuse to engage with people who have no desire to do anything but promote their own ableist and eugenic ideas. That’s called self preservation and it isn’t silencing. I don’t think I’ve ever deleted a comment from this site, because I do welcome discussion, but I see no point in having a discussion if the other person is going to continue to repeat the same tired arguments over and over again.

      I’m sorry you dislike the way I advocate. Frankly, you’re not the first and certainly won’t be the last to take issue with my anger and frustration at oppressive groups and individuals. And you having an autism diagnosis is great, but guess what? There are plenty of ableist or Aspie elitists among those professionally diagnosed, and I certainly don’t agree with or get along with everyone on the spectrum, just as I also don’t get along with everyone who has ADHD (another of my diagnoses) or anxiety disorders.

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      1. Thanks for publishing my comment. I respect you for that.

        It is not my analysis that Autism substantially limits brain function, it is the analysis of science as assessing those professionally diagnosed as having a neuro-developmental disorder. US code reflects that fact as linked and quoted below.

        There are likely many people identifying on the spectrum or misdiagnosed that do not have a neuro-developmental disorder of significance. The DSM5 working committee recognized that, and the consequence of it is a new criteria that is much more restrictive in mandatory requirements of assessment of limits and impairments in everyday life functioning.

        I do not like to see anyone bullied, whether they be observed as what some describe as neurotypical or autistic. I do not identify with labels or groups, I identify as human.

        When I see it I speak up. That is how I experience autism. You may experience it much differently and I can respect that.

        The person that came here offering to lend a compassionate ear was a human being and so was the person identifying on the spectrum no matter how many times they have a different perspective. Both of these individuals treated everyone in the discussion with nothing but respect. Humans deserve that no matter who they are or who they work for or if they disagree with another person’s opinion. Even online where people can lose their sense of humanity at times because of the distance of flesh and blood that online activity provides.

        If there was a round table here, and face to face interaction, it is more likely that respect would be seen from the same people in this discussion. I am likely much older than you, and lived in a time and a place where usually the only time people treated others like this was in country bars, where the alcohol let down the defenses of respect for other people. The result was often physical injuries.

        Tone matters. It is a positive part of human empathy and compassion demonstrated in social communication. And it is something that can be better perfected over the course of a lifetime, if one seeks it. Even someone that once had no clue, like myself. If that was because of a limit in brain function, I overcame much of it through the process of neuroplasticity, on my own and with the help of others with no guide of therapy through a lifetime of trial and error. 🙂

        http://www.gpo.gov/fdsys/pkg/CFR-2011-title29-vol4/xml/CFR-2011-title29-vol4-sec1630-2.xml

        “(iii) For example, applying the principles set forth in paragraphs (j)(1)(i) through (ix) of this section, it should easily be concluded that the following types of impairments will, at a minimum, substantially limit the major life activities indicated: Deafness substantially limits hearing; blindness substantially limits seeing; an intellectual disability (formerly termed mental retardation) substantially limits brain function; partially or completely missing limbs or mobility impairments requiring the use of a wheelchair substantially limit musculoskeletal function; autism substantially limits brain function; cancer substantially limits normal cell growth; cerebral palsy substantially limits brain function; diabetes substantially limits endocrine function; epilepsy substantially limits neurological function; Human Immunodeficiency Virus (HIV) infection substantially limits immune function; multiple sclerosis substantially limits neurological function; muscular dystrophy substantially limits neurological function; and major depressive disorder, bipolar disorder, post-traumatic stress disorder, obsessive compulsive disorder, and schizophrenia substantially limit brain function. The types of impairments described in this section may substantially limit additional major life activities not explicitly listed above.”

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      2. You, like others, assume that people who dislike the definitions of autism as being an impairment must be high functioning or misdiagnosed. I disagree, and my experience has been that many of those people don’t disagree that autism significantly impacts their life, but that instead of seeing that as a deficit, they have chosen to see it as a difference. Like many Deaf individuals who see being deaf as a culturally significant state of being rather than an impairment (because after all, the only thing being deaf limits is the ability to hear), many autistic people see the difficulties that we face because of the way our brains work, but instead of loathing ourselves for it, or demanding a cure, we are working toward public acceptance of those differences and accommodations where there are none.

        You basically insinuated that if I were to speak with people I disagree with in person, I wouldn’t be as blunt as I am, and I think that is false. I possibly would be left without a way to fully communicate, however, because few people at a round table discussion are willing to make accommodations for AAC devices or other methods of communication. My verbal communication is quite poor, so no, I’m not the same in person as I am online. I’m less articulate, and I’m more emotional because I’m easily frustrated by not being able to explain my point. My life pretty much runs by me following scripts. There’s no way I would be able to operate under that environment because I have an inability to think on my feet.

        You can use your age as a way to invalidate my words and you can take offense at my tone. However, I’ve tried the being nice and polite. It doesn’t really get me anywhere. It gets me ignored. It allows people to think they can trample over me. I tend to approach people kindly at first. But when I feel like I’m being patronized, I am going to react in a firm manner, sometimes blunt, and sometimes it seems rude to people. And I’m sorry, but when confronted with the assumption that the one commenter’s organization was another, they didn’t react by saying, “oh, you must have us confused with x organization and we aren’t anything like that because of x, y, and z.” No, their first response was to talk about how offended they were to be lumped in with them and how could we think that about an organization (that we know literally nothing about, but that’s apparently been around for over a decade)!

        Change doesn’t happen by being nice to oppressors and by asking nicely for accommodations. It happens by getting angry about things being the way they are, and finding a way to change that. If you aren’t angry about the way autism is presented in the media and public discourse, you aren’t paying attention. If it doesn’t make you angry that there is an ever growing list of names of autistic people who have been killed by their caretakers, and their caretakers are excused or serve lesser sentences than if they had murdered an NT child, well, I fail to see how that is even possible. When Casey Anthony gets called a baby killer and dozens of similar names for a crime that no one was sure she committed in the first place, and at the same time, there is damning evidence including a confession for the murderer of an autistic child, and people call it a mercy killing and say things like, “I don’t condone murder, but I get it. I understand how hard it is for the parents, and you think that being polite to oppressive people, whose organizations are instrumental in the way autism is viewed, is necessary or we are just too mean or lack empathy or respect, I’m sorry, but I think you’ve missed the point.

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      3. “You, like others, assume that people who dislike the definitions of autism as being an impairment must be high functioning or misdiagnosed.”

        No I was not assuming that at all. My point was specific to a neuro-developmental disorder assessed as a limit of brain function, and that some identifying on the spectrum or misdiagnosed may not have a neurodevelopmental disorder assessed as a limit of brain function. That is neither my call or my assessment for any individual, it is a decision of the APA sponsored DSM working group committees that design and define Autism as a Disorder.

        My personal opinion better reflects that of Christopher Gillberg, who designed the Gillberg Criteria. He speaks very eloquently to this issue in the linked video below. I did not consider myself impaired because of my autistic qualities during the course of most of my life, so I certainly do not hold that opinion against anyone else whether they are diagnosed or not. The broader autism phenotype extends out to 10 to 15% of the population. Anyone with the associated autistic traits, out into this population, could reasonably describe themselves as having autistic traits or identify as autistic.

        “You basically insinuated that if I were to speak with people I disagree with in person, I wouldn’t be as blunt as I am…”

        My comment was not directed at you in a personal manner it was directed to the comments in this blog, other blogs, and internet discussion in general. My reference to age was specific to living in a time and place where internet distance in communication did not exist. If there is a difference in our age that does not invalidate your opinion as being less valid than mine.

        I take no personal offense, at all, in your tone. I observe similar tone in most places on the internet. I consider that a reflection of culture and society that has significantly changed over the years, with the advent of internet communication.

        I think it sad that people feel like they must communicate in this way, but it is now generally the way people in the culture interact with each other, in part, because of distance in flesh and blood communication.

        I too do not communicate well verbally in face to face interaction in a roundtable discussion, per social communication. Short answers of analysis is about the extent of my verbal communication. I have no idea how you as an individual might communicate other than what you describe, my assessment was a generalized one to the reality in the difference in face to face and internet communication.

        I do not experience autism in the emotional way you describe. I am a problem solver, and usually am not ruled by emotions. That too, does not invalidate your opinion as less than mine, nor does it necessarily give me an advantage in communication.

        I heard about dissent over Autism speaks and a myth about parents killing autistics over other demographics several years ago and checked out the actual justice department statistics, associated with filicides and actual facts associated with the dissent over Autism Speaks.

        There is no evidence that people with disabilities are killed more often in filicides than any other demographic in the US, however the US has a fairly high rate overall in filicides in western developed countries.

        And, in general, hate crimes against individuals with disabilities are reduced in the last decade, and disability is currently at the bottom of the list of demographics of minority groups likely to be victims of hate crimes. LGBT/AIDS individuals are much more likely to be victims of hate crimes than people on the spectrum without the LGBT/AIDS minority status, overall, per statistics that exist, particularly African Americans.

        It doesn’t bother me that a charitable organization uses language like lifting the burden of difficulties that some experience on the spectrum. There are some conditions like fragile X syndrome that are a direct genetic causal factor of Autism specific to neurodevelopmental impairments, where some of these individuals experience incredible challenges over the course of a lifetime. In fact, there are more people assessed on the spectrum at 5% with fragile X syndrome than females with Asperger’s syndrome at 2% per government CDC statistics. I don’t necessarily agree with those statistics but they are the official statistics. And there is promising research to help these individuals with fragile X syndrome diagnosed with Autism.

        I think Steve Summers expresses my overall sentiment about constructive communication in the link below. But perhaps he is “old fashioned” like me. 🙂

        Thanks again for allowing my communication here.

        http://thautcast.com/drupal5/content/autism-everyone-counts-every-voice-counts

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      4. There are three populations within the disability community (that I know of) that overwhelmingly prefer identity first language (and those are Deaf, Blind, and Autistic.
        Make that five. XPers and wheelchair users.

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    2. Autism is a neurodevelopmental difference defined by reduced ability in or desire for social interaction, language impairments when compared to Neurotypical peers, and the ability to focus on something to the exclusion of most distractions.

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    3. Kassi, are you quite sure you’re Autistic? If you were, maybe you wouldn’t fall so hard for the old chestnut that we lack empathy because you would know for yourself that we do feel it as well as compassion. No, you are quite clearly a parent of an Autistic person who has been brujshed off when trying to show you affection because you assume they are incapable of it.

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  17. I appreciate your post and wanted to let you know that I link to it in my post today at Countering. I’ve also added your blog to the Autism Blogs Directory. Thank you for sharing your thoughts on April.

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  18. Thank you so much for this post! My 6 yr old son is autistic and my parent-support group is all about putting up the blue lights this year. I felt uncomfortable with it, and now I know why. Your advocacy is inspiring me to support my son by listening to him, instead of consulting the “experts”. I look forward to learning as much as I can from the adult autistic community.

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  19. “I heard about dissent over Autism speaks and a myth about parents killing autistics over other demographics several years ago and checked out the actual justice department statistics, associated with filicides and actual facts associated with the dissent over Autism Speaks.

    There is no evidence that people with disabilities are killed more often in filicides than any other demographic in the US, however the US has a fairly high rate overall in filicides in western developed countries”

    ….I had to read that about 5 times because I don’t believe what you just said. You are contending that because disabled children are not murdered more than children of other minority demographics, autism self-advocates should not protest Autism Speaks and other organizations that spread clearly negative rhetoric. Deal with it, because Black kids, Latino kids, White kids, LBGT kids are being murdered too at statistically similar rates. Isn’t that really what you are saying?

    The rhetoric in this country is a problem. It is a problem that extends far beyond the autism community. It is a nationwide problem, a global problem, and a human problem. Autism Speaks is part of the problem, and just because many others have the problem, it does not clean the blood off their hands.

    “And, in general, hate crimes against individuals with disabilities are reduced in the last decade, and disability is currently at the bottom of the list of demographics of minority groups likely to be victims of hate crimes. LGBT/AIDS individuals are much more likely to be victims of hate crimes than people on the spectrum without the LGBT/AIDS minority status, overall, per statistics that exist, particularly African Americans”

    …The disabled demographic does not have a problem with hate crime, because LBGT, ethnic communities and HIV communities are targeted by hate even more? I can’t agree with that. Civil Rights advocates stand against all these hate crimes. If you check the facebook pages and blogs of many of these advocates, they ally with LBGT and other minority advocacy movements as well.

    You are helping to feed a destructive rhetoric by clumping LBGT and AIDS communities in your hate crime statistic.

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    1. This. So much this. It also ignores the intersectionality of disability and other marginalizations. Being white and autistic may get you weird looks, but being black and autistic can get you arrested. Or killed. Being autistic may not get you kicked out of your home, but being trans* and autistic might.

      I’m glad you replied to this, because I didn’t have the energy to do so.

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    2. Rather Unique: I addressed two separate issues. One, a myth that parents are killing their autistic children at a higher rate than other demographics of people with or without disabilities. And two, dissent over the Autism Speak’s organization rhetoric.

      My statement was that there is no evidence that parents are killing their autistic children at a higher rate than other demographics of people with or without disabilities, which I can provide government statistical sources, if you like, to back that up. And I can also provide the reference to hate crime statistics against LGBT/AIDS victims if you like.

      You are correct, this is a global issue and a humanitarian one, but it is not one specific to filicide and disabilities per government statistics, it is an issue of filicide where all demographics are affected disability or no disability, and an issue where all disabilities are impacted in hate crimes including the disability of AIDs.

      It is spreading hateful rhetoric to suggest that charitable organizations are a cause of this phenomenon that has actually decreased, at least in the area of hate crimes against those with disabilities in the last decade, per department of justice statistics.

      I understand the severity of the health and genetic disease associated with some forms of autism; those needs are real and present and must be addressed appropriately through scientific research, to meet basic human rights for these individuals. I do not have a problem at all with an organization suggesting their goal is to alleviate the burdens those individuals experience associated with their difficulties in day to day life.

      That is my opinion and not one I expect anyone else to share.

      The idea that someone is going to go out and kill their children because someone confessed an irrational ideation of filicide in a video years ago is no more logical than suggesting someone who does not like so called “normal” people in society is going to go out and kill a group of human beings, because it was promoted in a violent video game they played.

      If most people made real life decisions based on what they saw, heard and/or interacted with on TV, the internet, music or violent video games, the world would be complete anarchy.

      It is not a current scenario of anarchy because most people understand the consequences of criminal behavior, regardless of their fleeting irrational thoughts, what they see/hear/interact with on the internet, video games, music,TV, or other sources of negative information in our rapidly changing culture. Enforcement of laws continue to keep people in line. Most of the other folks are in prisons that are bursting at the seams.

      There are many things to fear in this world, but charitable organizations are at the bottom of the list, and so are filicides, except for the unfortunate children who are part of the 1.5 annual incidences of filicides per 100,000 children in the US, per government statistics among children that fall prey to this crime.

      There are approximately 1 to 2 million children diagnosed with Autism in the US, so one can expect 10 to 20 filicides a year, per that demographic, as one can expect with any other group of 1 to 2 Million children in the US.

      We hear about 1 to 3 incidences per year in the media, specific to filicides and Autism. One is far too many, but if there is 1 to 3 incidences per year, that is well below the national average for any demographic in the US for this horrible crime. As far as the available data that exists, children diagnosed with autism have no greater rational fear of this than any other child.

      What can be horrifying per emotions and child psychology is an online myth generated in some autism communities that parents and organizations are working together to literally kill children diagnosed with Autism. These children already have enough challenges in life, not to emotionally and psychologically succumb to a horrifying boogeyman of parents and organizations that does not exist in the rational world.

      Autism Speaks no longer offers that infamous video for view, but it continues to be repeated in online communities as evidence for attacks against Autism Speaks for children on the spectrum to watch over and over again who are in viewing distance.

      That video was not meant for children to watch, but as a result of online autism communities, they have been exposed to it at much higher levels because of the attention drawn to it, That is ironic, because those are the innocent eyes that should be shielded from these type of irrational adult thoughts, not amplified online through videos without consideration for the children’s emotions or psychology.

      In my opinion, it was a mistake for Autism Speaks to release that video, but it is an even bigger mistake to continue to play it and talk about it in online autism communities, for the sake of the children on the spectrum and even some adults on the spectrum that are significantly emotionally disturbed from watching it or continuing to hear about it. Most of the negative rhetoric, potentially psychologically and emotionally harmful to children and adults on the spectrum, is now coming from inside some online autism communities, not from charitable organizations.

      That negative phenomenon can be easily measured, empirically, with a google search, in the actual results of the rhetoric returned.

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  20. Unbelievable. Fact: people who have killed their autistic children have often expressed the attitudes of Autism Speaks that their children’s futures were limited and therefore, their lives were not valued. It is a fact that people have killed their autistic children for being autistic and no other reason. Statistics being quoted don’t change that.

    And by the way, quoting “research” and “fact” and “science” does not make you rational; and neither does anger make CaffeinatedAutistic irrational or uncivil. Science and experts also have biases, and the language of science is often filled with bias and judgment. Back in the early ’80s it was scientists who called AIDS “the gay men’s disease” leading to decades of prejudice, and judgements. And it is biased language to refer to difference in neurology or a difference in communication as “disordered” or “abnormal.” Those are terms that are social constructs and are judgmental. Normal is a social construction, high/low function is a social construction, and they were constructed by scientists, researchers, medical personnel, and experts whoare PEOPLE, just like you and me. People with biases, people with their own objectives. And simply because something is printed in the DSM does not make it so. Same book, by the way, that listed homosexuality as a disorder that needed to be cured.

    These biases in language have gone a long way to making the lives of autistics difficult, by shoving children into treatments that disregard them as human beings. I am an educator, and as such, I was appalled that much of the behavioral training methods used with autistic children are in direct opposition to the researched best practices for teaching children.

    And by the way, I am a parent. And while I respect the rights of parents, I know that many have been led to view their children as “other” and needing to be fixed because of the biases reflected by groups like Autism Speaks. I realized long ago that my child communicated in her way; and maybe I am the one who for some time was disabled in my inability to understand her communication. Now we work toward a shared communication. There are many ways to communicate and one language and one method is not superior; not speaking is not indicative of “functional level” (whatever that means) or intelligence.

    And we have a right to be angry when what is being presented and argued hurts people. And it does. And sometimes it kills them.

    Thank you CaffeinatedAutistic and for all of you who stand up and say we need true acceptance.

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    1. Autism Speaks receives an incredible amount of name brand recognition, as the brand name continues to be highlighted in some blogs and face book communities in attempts to demonize the organization. It creates additional opportunities for people to assess the organization for what it is presently doing.

      Other than the continued vaccine controversies that present a negative element on that organization’s face book page, the over one million likes is reflective of the positive atmosphere that is presented there. There are only pictures of smiling children and young adults that continue to be highlighted there, and in the PSA’s the organization makes. But, it is not possible for any charitable organization to raise money for a mission, if there is not cause to generate the emotion of compassion in human beings. That’s not even marketing 101 it is humanity 101.

      Autism Speaks is run like a well oiled corporate machine that is no surprise as it was founded by a corporate executive that was successful in running a media giant for 2 decades. But no organization is error free; without assessing feedback and responding appropriately, no organization can survive in a free market economy.

      The two offensive videos are history. They no longer exist anywhere but online autism communities where the memory is kept fresh, to spark the emotion of empathy anger, that is often bait for comments. I hope that doesn’t sound offensive. My analogies can be a little off-cuff at times.

      As stated earlier, and illustrated eloquently by Christopher Gillberg in the video I provided, there are many underlying factors that result in what is defined by several sources of criteria in the assessment of autism spectrum disorders. A short list includes Fragile X syndrome, Tuberous Sclerosis, Noonan’s Syndrome, 22q11 gene deletion syndrome, abnormal brain growth in males specific to regressive autism, Sensory Integration Disorder, ADHD, Pragmatic language impairments (PLI), Non-verbal learning disorder (NLD), Hyperlexia, and many more.

      About half of those associated conditions can result in clinically significant language development delays including Hyperlexia and PLI.

      My flavor of Autism includes Hyperlexia that comprises precocious reading ability, language development delay until age 4, difficulty with verbal speaking most of my life, problems with reading comprehension, and an overall desire to decode every symbol I came across. Numbers, words, and letters were some of my best friends. 🙂 In addition, Motor development problems, Sensory Integration issues-tactile sensitivity and ADHD rounded out a general description of my flavor of Autism.

      Under DSMIV and ICD10 guidelines my flavor of Autism, if assessed under the age of 4, is most often diagnosed as Autistic Disorder or PDD NOS, but under Gillberg Criteria which allows for a Hyperlexic or Pragmatic language impairment language development delay, it fits a diagnosis of what Gillberg and Hans Asperger’s described, initially as “Autistic Psychopathy, ticking almost every trait of that Autistic syndrome described.

      From my experience in online autism communities, the flavor most often described is one with strong symptoms of non-verbal learning disorder, NLD, where there is often early speaking abilities, but substantial problems with math and visual spatial skills. That is no surprise as the majority of individuals diagnosed with Asperger’s syndrome meet the symptoms for NLD, in the US where DSMIV guidelines have been used.

      Autism Speaks clearly acknowledges in its “what is it like to live on the spectrum” section on their main website that there are some individuals that experience different challenges than others on the spectrum. The three communication disorders are often what is seen in online autism communities, but rarely Fragile X syndrome, Noonan’s Syndrome, 22q11 gene deletion syndrome, Tuberous Sclerosis, or the type of regressive autism associated with abnormal brain growth.

      Autism speaks acknowledges that the support needed by some is one of accommodation, acceptance, and opportunity to work with their strength in abilities. But the needs served by research are much different for others.

      While accommodation and opportunity to work in areas of strength of ability can be legislated and enforced by disability regulations and laws, limited now per ADA laws that exist, acceptance can neither be legislated or enforced by law.

      Acceptance is an ethical decision that can be enhanced by the lessons of home-life and culture. Acceptance in our culture, promoted almost everywhere in every avenue of information is the attainment of perfection both in vanity of appearance and material success.

      The only effective way for most people to experience acceptance in this culture is to accept one’s self and attempt to understand this dichotomy of culture. Autism Speak’s PSAs, websites and volunteer walks can be avoided if taken offense to, but the over-driving source of non-acceptance is an unrealistic expectation of culture driven by media sources everywhere, in almost every avenue in life.

      It seems sad to me that in some online Autism Communities a kind word about a charitable organization like Autism Speaks or the need for research for a cure to remediate the difficult symptoms of a subgroup of Autism like fragile X syndrome can mean an automatic boot out of the online autism community.

      Some therapies, research, and support are appropriate for some sub-groups on the spectrum and not appropriate for others. While acceptance is hard for anyone to find in larger society, it would help to at least attempt to understand these differences in characteristics, needs, and supports of people on the spectrum to at least potentially better provide a level of what can be controlled in acceptance among people that do have compassion for each other in online autism communities.

      That is what one sees on Autism Speaks face book page, but there are people there that get paid to make it happen. The hundreds of blogs, facebook pages, and large autism online communities are comprised almost entirely of volunteer effort, where only personal ethics determines the social rules of acceptance in each avenue of communication, and who may find a place to belong and who may not. As in all cases of volunteer acceptance there is no law that enforces that other than personal ethics, attempts at understanding other perspectives, and respect for them when possible. 🙂

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      1. Kassi, you can post all the government statistics you like regarding filicide and what demographic receives more hate crime than the other. I am not disputing that. I am disputing your idea that what organizations like AS do (and don’t do) for autistics (particularly adults)should be tolerated.

        AS treats us like we are “others”. They refer to us, human beings…..human beings (100% of the people reading this are human beings) as “epidemic” and “a tsunami” and “a burden”. They tell us, human beings that we don’t really deserve to be here, and that we live only by their mercy, and that secretly mom wants to drive us off a cliff. Your are right Kassi. Most people will not succumb to irrational thought . Fear of the law keeps them in line. Most people. 99.9% of parents/caregivers will not kill an autistic kid. Fear of the law keeps them in line because societal ethics do not. AS tells these caregivers that their irrational thought to lash out at the child is OK. And the caregivers do not kill the child because they have fear of the law, but they damn sure let that child know every minute of their life that they are “other” and they exist only by their mercy, not because they deserve to live.

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      2. Not to mention, there are a good number of autistic people who are abused. The rhetoric may not cause an astronomical number of deaths by caretakers, but of the fellow autistic (and similarly developmentally disabled) individuals I’ve spoken to, there has been a fairly high percentage that reported abuse, whether emotional, physical, abusive therapy, etc. And it might not seem high in statistics, but just like any form of abuse, it’s often underreported. You can quote all the stats you like, Kassi. That doesn’t make Autism Speaks not a problem. The discourse needs to change.

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      3. Throughout human history, we have always had diversity (and I don’t only mean race or sexual orientation). We have always had people who couldn’t speak, who had difficulty with sensory processing, who were just different. Always have been there. The problem with the rhetoric of Autism Speaks and other groups, and many parents, is somehow they think that different equates to bad; it is now an “epidemic” that needs a mobilized response (And Kassie, such language is unacceptable–period!)

        How is that any different from the ignorance of folks a few hundred or a few thousand years ago who rejected those who were different? Same ignorance, same arrogance, same desire for conformity. Except now we think we have the “science” to cure those who don’t meet our expectations, to train them the way we train animals at the zoo to behave how we want them and not what is the norm for them. That is unacceptable. How in the heck did a society that prided itself on individuality become so conformist?

        It is unacceptable to defend an organization that speaks of “epidemic” and “burden” and the “sacrifice of parents” and the need for “cure.” Think, Kassie, of how that message feels to an autistic child or adult? Think of what that says. You are an epidemic, how you think, feel, communicate is an epidemic and burden to society and your parents. That is verbal and psychological abuse! Autism Speaks verbally abuses autistics every day with the help of the medical and social institutions—no, not institutions, that disregards responsibility, individuals. Individuals who knowingly choose to say those things. It is abuse; it is really that simple. Children are human beings too; and like autistic adults they hear the negative and abusive message of AS and so many others. THAT I KNOW FOR A FACT!

        Some of us no longer want to live in the mindset of a thousand years ago where conformity is the only acceptable course. Some of us actually believe humanity is better than that. Strange, isn’t it, that we are the ones labeled by society?

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      4. Jane and Rather Unique, in my travels through the internet in online autism communities a common factor I have found in people that hate Autism Speaks, is that it is a symbol of parents for them, and the majority that are the most vocal express abuse from their own parents.

        I had a distant father that left at a young age, but never experienced the kind of verbal, physical, and sexual abuse that I have heard from people that are the most vocal against Autism Speaks.

        In fact it was my mother that provided me unconditional love, regardless of the difficult child I was to parent. I did not come to that full realization until I had a child of my own, that did not live very long as a result of a co-morbid condition associated with Autism. My child never had the opportunity to be difficult. I wish that he had. I too am a nurturing type of individual; that is not necessarily inherited.

        Having a loving parent colored my whole world as a good place to live, and provided me ability to believe that generally people were good. This is what I expected and what I eventually found in life.

        I suppose that difference in life experience per how one is raised as a child, and how one is respected as a child can play a difference in a completely different view of the world, and people around them, in expectations of others in life.

        In my opinion, conformity would mean that everyone has the same social roles in life. That is not the case for any social animal. My area of interest at the University level was psychology, sociology, anthropology, and health science. I was extremely fortunate through the assistance of society coming from a very economically disadvantaged, but loving family, to obtain three degrees in my areas of interest. That also colored my view of society as one of gratitude and never one of us vs. them.

        With this overview in understanding differences in perspective I could not possibly have compassion, if I judged anyone here on a personal level for the discomfort and distrust that is expressed for others.

        Human beings are social animals; they are evolved for social roles and social connection. The most difficult of experiences in life for any social animal is to feel set apart from others. I can only attempt to understand how you feel, but what you describe is not how I view parents, charitable organizations, or any other person or entity that demonstrates what I observe as compassion that seems to be observed in the conversation here as a kind of negative pity.

        If I had been born in the last twenty years in a world where social roles are no longer easy to obtain for most people, and with two parents that were distant instead of one, with any possibility of verbal, emotional, physical, or sexual abuse, there is the possibility that I would view these issues similarly as you two do. You have not specifically stated bad experiences with your parents, but I would not be surprised if that were the case.

        The anger you are expressing over compassionate words viewed as words of pity and fear are completely alien to how I view the world. But it is a world from a different time and place, as well as potentially much different parents. The parent experience can be a make it or break it deal maker for some. My mother gave me the gift of compassion, I did not earn it on my own.

        Primates studied in isolation from social roles and parents, express almost identical autistic like behavior as humans. It is not politically correct to identify that as a causal factor of the autistic traits associated with “autistic disturbances of affective contact” with others, as Kanner originally described as an autistic syndrome, but as I travel further in the online world, I become convinced that at least for some people it plays a strong supporting role with or without obvious neurodevelopmental problems in areas of motor development and language development.

        From Temple Grandhin’s own words it made the difference in her life. I owe my survival to my mother as well as my heart and soul. I have never heard anyone other than Temple say words to that effect in online autism communities about their parents. If they are mentioned at all it is usually in the context of some type of abuse.

        It is not an area of research that could be funded, but perhaps it is still worth pursuing, if not for politically incorrect concerns. It is also worth noting that right after siblings parents of children on the spectrum are more likely to be on a broader autism phenotype or on the spectrum than anyone else in the general population.

        When we speak of parents and autism we often speak of ourselves. In my case it was the so called “NT” parent that gave me my heart and soul. That was something completely out of the realm of possibility for my father who was very close to the spectrum if not on it, with almost having no ability for affective contact with anyone but his cats.

        As I grow older and more isolated from society I become more and more like my father. It was likely my biological destiny before my mother got involved. Neuroplasticity and a good environment can lead to virtual human miracles.

        It appears Hans Asperger had it correct in his description of “Autistic psychopathy”. So did Gillberg in the video link I provided. There is not much that sets a psychopath separate from “Autistic psychopathy”, per biology, other than compassion for other people and perhaps poor motor development. I suppose at least in some cases parents can make the difference, particularly ones like my mother who provided nurture/affective contact and unconditional love. It is like a light of hope for a lifetime.

        I do not concern myself too much with political correctness and enjoy connecting the dots in patterns. I would like to do a poll somewhere among people identifying as autistic who hate autism speaks vs. those that don’t in relation to parental abuse. So far, all I have is pretty strong anecdotal evidence. But I am hesitant to do a poll like that because of the compassion that remains intact per the potential to trigger negative emotions in others that I personally could not come close to imagining associated with a parent. That is how powerful the love, light, and compassion of my mother was.

        My only regret in how i experience Autism is the difficulty I find in attempting to pay it back to her (reciprocal social/emotional communication) on a personal level. The same is true for my spouse, who becomes more like me as decades go by, who continued to provide a similar dose of affective contact that I needed to continue my humanity.

        It took me decades to fully understand what it means to be autistic. Even though I lived it. I understand more fully now with brutal honesty and even more respect for others than I had before. All others.

        My statement that I started out with in this discussion of “so much anger so little compassion”, does not appear to reflect a potentially much larger powerful emotional reality of “so much hurt”.

        I cannot fully identify with that as my mother’s love gave me incredible resilience to bullies of all kinds, as well a level of compassion that remains deep seated in my heart and soul.

        Parents are the burning fire of acceptance and compassion for ourselves and others in most of us, I think. That flame differs per everyone’s personal experience. Some social animals are predisposed not to have off-spring. That is nature’s way, but some can still find a purpose as a supporting player for the species, including human beings.

        Some of the most tolerant of people identifying on the spectrum I have come across online have been those that have children. I can’t help but to think, that is part of the reason I have lasted this long in this conversation. Any desire to have children reflects an ability for nurture and affective contact that not everyone shares..

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      5. Question: if Autism ‘works faster than pediatric cancer, AIDS, and diabetes combined’, then why do people have to be murdered in order for their Autism to be fatal? Just askin’.

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    1. I will be doing a post on this within the next few days, but essentially, stay away from Autism Speaks and their “cure”/”burden” rhetoric, and highlight autistics’ voices and what we say about what it’s like to be autistic. The link I posted inside this entry can tell you more. Thank you!

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  21. You know what’s interesting….I suspect the “cure/burden” rhetoric is what many organizations feel may be the only way to attract attention (not to mention funding): by oversensationalizing it and focusing on that as their sole message. It happens in news, the Internet, even in movies and Tv! Rare is the show that focuses on a happy stable and loving relationship or a positive aspect of life, and I think that goes for many of the organizations wanting to cure this and that.

    Not to say that there aren’t people who feel that certain disabilities, etc. aren’t debilitating…but it seems to be a way to attract attention and funding.

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    1. If you look at my Autism Speaks page (it’s a link at the top of my page), there’s a list in that link. It’s going to be difficult for many people to avoid completely, but I think I am going to try and pen some letters to all of the companies.

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