The Conversation That Isn’t

The biggest problem with the conversation regarding autism and Autistic people is that it is largely had without the inclusion of those who are being discussed.  When Autistic people attempt to join the conversation they are often told – the very fact you can speak removes you from the conversation because you are not representative of those who cannot and those who cannot speak are believed to have little if nothing to say.

When someone who is Autistic and does not speak, types to communicate, they are often discounted as not really being able to type, even when they are able to do so independently.  One of the many google search terms that come up repeatedly, leading people to this blog is “Carly Fleischmann fake.”  I continue to find people’s adamant disbelief, even when shown clear evidence of ability, baffling.    For those who do not know who Carly Fleischmann is, please go to her website and Facebook page.  She is a non speaking Autistic teenager who defies all the stereotypes about what it means to be non speaking and Autistic.  People insist that she is an anomaly, but go to a conference like TASH, Autcom, the ICI Conference or go to the resources page on this blog and read the many blogs and written works by non speaking Autistic people and you will quickly see that not only is Carly not a “fake” or a “hoax”, she is not an anomaly; she is in good company and one of many.

“…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

Rosemary Crossley on the topic of IQ tests, writes, “Tests of intelligence purport to assess how well you take information in, and what you are able to do with it, on the basis of what comes out.  If nothing quantifiable comes out you are untestable.”  She then goes on to say, “What is surprising is that the results are assumed to reflect what the child and teenager are thinking and what they are able to learn, and are used as a basis of making decisions about their futures.

So we continue to have a conversation about Autistic people, yet when those who can speak do so, they are discounted as not representative of those who cannot, and when those who cannot speak, type, they are doubted, believed to be a hoax or an anomaly and not representative of others who share their inability to speak.

Does anyone else see a problem with all of this?  Anyone?

Me and Em at the ICI Conference in July, 2013

Me & Em

39 responses to “The Conversation That Isn’t

  1. “…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

    This statement resonated so strongly with me. Another book added to my “to read” list.

  2. Oh yes yes yes yes……etc yes……as I am now sitting in the hall at the community college and Emma is inside proving without speech, independently, she is so very EMMA.
    PS…Her choice!

  3. Now I’ve got two, which I’m sure will be great, books to add to my list (Carly’s and Rosemary Crossley’s). I’m so happy you include Emma in the blog and conversations. I think you’re such a great parent for being so open 🙂

    • Carly’s book is written mostly by her father, but her facebook page is very much hers. And Rosie’s book… what can I say about this woman? She is a force and wow do I feel fortunate to have met her and had her work with my daughter. She is truly amazing, dedicated, brilliant and very funny.

  4. My grown daughter is verbal but often times is unable to get people to understand her needs – because they are not listening. They assume, wrongly, and create a terrible tipping point that takes so long to adjust. Why is it so hard for people to slow down, listen, and learn – whether a person is verbal or not….

  5. Yep. We tend to presume that other people are operating from the same experiences and with the same desires as our own. “They” “must” want to learn. They must want to speak, and speak like I do. They must want the same thing out of life as I. Everyone wants to be like me. Ha!

    There have been so many layers of learning for me thanks to my children. And I know I’m not done.

  6. Yup, a vicious cycle of misunderstandings

  7. Linda Lange-Wattonville

    Yes, it’s a BIG problem. Perhaps it could be helped by researchers and professors in the field if they would better define the whys of communication, processing and motor control differences. But ever since the sexual abuse case in the early 90s which deemed FC as false, many people wrote off the potential for independent thought from the nonverbal. It’s unfair for people to view it as all or nothing. Even the thoughts and words of speaking children can be influenced or misconstrued by others, so if the same proves true for the nonverbal, that should not be just cause for discounting the nonverbals’ ability to think and to communicate.

    • What is really interesting is that just prior to that was all the sexual abuse allegations by young children who were not autistic. Remember the memory recovery therapists? And yet the public did not then leap to the conclusion that all of psychiatry was a hoax and everyone stopped going to their shrinks.
      Or in the case of medical malpractice we haven’t decided that all doctors are frauds and everyone stopped going to them. It’s the black and white/ all or nothing part of this that amazes me. And also the fact that a great many have now lost all possibility of having a voice, they have been silenced as a direct result.

  8. Such a problem. They won’t listen to autistic people who can speak, they won’t believe that non-speaking autistic people are able to communicate… all that is left is the echo of their own voices!

    As your title indicates, it isn’t a conversation if only one side is allowed in.

  9. Yes. I have a BIG problem with it. My son is kinda verbal, but his voice is just as important as anyone else’s, and is most important when it comes to things concerning him.

  10. True enough. BUT I have also seen the ND community discount and dismiss autistic people who speak and say they want a cure. Anyone who wants to have a voice must allow the voices of those with whom they disagree too.

    • Yes, I’ve seen that, too. However, while those who say they want or would want a cure should absolutely be listened to…their arguments are not immune from critique, either.

      And I read with interest whenever I find autistic people arguing for a cure. But I usually find their arguments bad. Often but not always, either they mistake the effects of how they’re treated badly by others for being autistic with the effects of autism itself, or that the so-called “high-functioning” have some kind of super-special secret that we just don’t want to share because we’re selfish, and that if we stopped arguing against curing autism, then it would be. Most recently, I was arguing with a pro-cure autistic person on Facebook, who flat-out and at length conflated the effects of autism with the effects of someone having their environment unnecessarily restricted because of other people’s bad ideas about autism.

      I think and have always though that we should listen very seriously to what autistic people say about what kinds of treatments or therapies would materially help them with the effects of autism.

      But ableism, bigotry, erasure, dehumanization, infantilization, and presumption of incompetence are not effects of autism–they’re the effects of misinformation and xenophobia.

    • TLS – As with almost all discussions where there’s a great deal at stake, people tend to stop listening, and you’re right it’s tough to have a conversation once that happens. But conversations can’t happen unless everyone involved comes to it with the intent to listen and not just change another’s mind. It isn’t just those on one side or the other who aren’t listening, none are. And I think if they did they would see that many people are actually operating from some pretty basic misunderstandings and are defining the word “cure” differently.

  11. I wanted to “like” every comment on this post so far. Mind. Blown.

  12. I agree with autisticook. If I could like every comment here I would. What you’ve described Ariane is such a huge problem, I don’t even know where to begin. The situation is so bizarre, it would be laughable if it wasn’t so disheartening, and so frustrating. Though no-one comes right out and says it, what you detail in this post is what I hear so very frequently.
    How did we let this system develop? What has become of the way that education is provided? The way therapy is provided? And why aren’t more people working to fix a system that’s so obviously broken? I think your quote from Rosemary sums it up
    “…. a tendency among professionals is to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless -Rosemary Crossley

    I think in the end, so many “professionals” can’t bear to re-evaluate their established practice…because doing so would mean they’re fallible. And for many, that simply cannot be.

  13. I have a massive problem with that too. My son is (very) verbal, and I am quite aware that our challenges are not the same as those of non verbal autistic kids and/or their parents. Growing up in this time though, even if I look at blogs of adult autistics that were kids in the 50s, 60s, 70s etc – it’s still all different..but the first book I read was “look me in the eyes” by JE Robison. The blogs/articles that give me the most applicable insights on how our world looks for my son are those by young autistic adults. I am surprised and appalled by the reaction of parents who reject this valuable input in the conversation about autism. It makes no sense to me.

    • Perhaps they haven’t found the ones that resonate for them yet… not sure.. for me it was Julia Bascom’s blog Just Stimming and then E.’s blog The Third Glance and Landon Bryce’s thAutcast and then Kassiane’s blog Radical Neurodivergence Speaking and on it went…

  14. Amen! Recently read “Ido in Autismland”. There are too many examples now of individuals with ASD who can communicate via typing to ignore.

  15. Ryan,proud daddy of Rebecca

    My becca lights up a room with her grin and welcomes everyone who passes our house with big hello and eagerness to reach out to hug. Our children are all ambassadors making the world a richer place.

  16. thx so much for this post. because of this issue, i never know how to identify…it feels like no matter which term i use, it’s bound to create tension, elicit rejection of some form. i originally recieved a diagnosis of asperger’s…for years i used that, but now even that has been discontinued in the DSM V. it’s still an issue i don’t know how to navigate…i’m trying to operate on the theory that the more personal stories from the spectrum that are out there, the better…regardless of the labels. i don’t know if that holds true for the reasons you mention in this post, people seem to be dismissive towards many types of stories…but i definitely appreciated your words here, thx again.

  17. p.s. it’s one of the reasons i created this avatar with the label “human”…just an inside joke with myself about the thorny issue of how to identify as a person on the spectrum.

  18. This situation is like a gynecologist who has never spoken to a woman. How do you know what issues women face if you’ve never spoken to a woman?

  19. I am very gifted, not so much with speech as with the written word. I self-taught myself to speak Cantonese when I was 30 years old. None of this doesn’t mean I’m not autistic — Autistics tend to be savants, remember? The world is a very hostile and terrible place to live if you are autistic but I’m no longer afraid of suffering anymore, if it means I can help others like myself. I’ve been through Hell growing up as a Ward of the State of California and I’ve been on my own since I aged out of the foster care system in 1978. It hasn’t been easy or fun but it has been a never ending learning experience and I want to share my experience with the world. So let me tell you something: Lots’ of people love to hate and what could be easier to hate than a “spoiled brat” or “retard” like some people claim Autistics to be? I’ve been called that and worse, merely because I’m autistic.I’ve seen a few parents with dollar signs in their eyes or those who want to make a name for themselves at the expense of their autistic progeny, but greed, pettiness, and hate is going to stop me in my pursuit of the truth and from telling the truth. Unlike the vast majority of people in this world, I love to tell the truth and I would rather be hurt by the truth than comforted by a lie. I will stand up — probably all alone — to the hate and the lies. I know I can do this all alone because I’m autistic and autistic people savor solitude anyways. Feel free to visit my blog and see just how serious I am about this and don’t be afraid to give me your feedback, good or bad..

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