Distorting DEEJ: Deconstructing A Misinformed Literature Review

Production photo of David Jame Savarese (Deej) a thin white male with short,
cropped hair and glasses, wearing a light blue polo shirt and beige slacks, seated
 at a table facing his girlfriend who is seated in a power chair back to us, facing him.
  A man holding a camera is standing to their left and caught in the act of filming them.
©DEEJ movie https://www.deejmovie.com/press

"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data." Wikipedia on Confirmation Bias

I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with the conclusion that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write why.

I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called scientific racism. Scientific racism, at its core, is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups.

I am also very outspoken about the unjust treatment of autistics like my son. Full disclosure, my son is non-speaking and uses an iPad with the appTouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar.

Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC using non-speaking autistic adult with complex support needs. This kind of representation—outside of stereotyping in media for us people of color—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.

So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary revisits facilitated communication pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned.

Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to skepticism and concussion non-disclosure research. I wonder why he chose this topic? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation.

Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From Asperger’s Nazi collaboration to the debacle and destroyed lives of Bruno Bettleheim’s expansion of Kanner’s “refrigerator moms” view of autism, to Ivar Lovaas and his conversion therapy cruelties, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given electric shock punishments at the Judge Rotenberg Center “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence.

Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.

Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.

I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.

To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering tenure at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.

If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as the Goldwater Rule. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.

Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.

As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage. "

I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.

Foster plowed ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."

Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month, a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear. Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.

Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.

I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations
(e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing, the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."

Let's address the topic of FC generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't discuss the reality that this brief used two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects. How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had specialized training for this type of investigation. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.

We are current witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.

Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a characteristic associated with pseudoscience."

But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?

I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there." I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.

Foster's unconcerned opining of Deej's degree of disability is very similar to the racial bias found in medical doctors. = I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statement,: "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."

I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.

I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with mandated insurance coverage in most states despite valid ethical concerns verified by recent research into ABA and PTSD in autistic clients. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion methods while dismissing the support of individuals who have physical barriers to typing.

While Foster included a non-apology to Deej's family consistent with his policy on respectful skepticism, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.

And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.

-----------------------------------


Nickerson, Raymond S. (June 1998), "Confirmation bias: A ubiquitous phenomenon in many guises", Review of General Psychology, 2 (2): 175–220


Foster CA. Deej-a Vu: Documentary revisits facilitated communication pseudoscience.


Behavioral Interventions. 2019;1–10 https://onlinelibrary.wiley.com/doi/abs/10.1002/bin.1687


Foster, CA. Skepticism at heart is not partisan. Skeptical Inquirer 2017


https://skepticalinquirer.org/2017/01/skepticism_at_heart_is_not_partisan/


Hagiwara, N., Slatcher, R. B., Eggly, S., & Penner, L. A. (2017). Physician Racial Bias and Word Use during Racially Discordant Medical Interactions. Health communication,


32(4), 401–408. doi:10.1080/10410236.2016.1138389


Confirmation Bias


https://en.wikipedia.org/wiki/Confirmation_bias


Kupferstein, Henny (January 2018) “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis” Advances in Autism ISSN: 2056-3868


https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html


UN calls for investigation of US school's shock treatments of autistic children


https://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism


School Shocks Students With Disabilities. The FDA Moves To Ban The Practice.


https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments


The Legacy of the Civil Rights Act of 1964


https://www.history.com/topics/black-history/civil-rights-act#section_4


Bruno Bettleheim, The Empty Fortress


https://archive.org/details/emptyfortressinf00bett_0


Leo Kanner's infamous 1947 Time Magazine interview that began Bettelheim's destruction of autistic children and their mothers with quotes like "The children, says Dr. Kanner, were "kept neatly in a refrigerator which didn't defrost."


http://content.time.com/time/subscriber/article/0,33009,798484,00.html


Siegel, B. (1995). Brief report: Assessing allegations of sexual molestation made through facilitated communication. Journal of Autism and Developmental Disorders, 25(3), 319–326. doi: 10.1007/bf02179293

Hansson, S. O. (2013). Defining pseudoscience and science. In M. Pigliucci, & M. Boudry (Eds.), Philosophy of pseudoscience: Reconsidering the demarcation problem (pp. 61–77). Chicago, IL: University of Chicago Press. https://doi.org/10.7208/chicago/9780226051826.003.0005

Autism, Accommodation for Disability, and Traumatic Normalization

Mu and his adult big sister in front of the Mother and Child statue in downtown Greenbelt when Mu was six years old.
Image of a child in a yellow winter coat and black slacks leaning on a young woman in a green winter jacket and dark jeans
both have their backs to the camera and are facing a giant sculpture of a mother holding a small child. ©Kerima Cevik

I try to stay out of autism parenting arguments in the community. My son doesn't fit the mold of those parenting issues being debated, and such discussions only end with my being furious at the lengths parents go to try and force normalization in their children the way Cinderella's stepmother tried to force a glass slipper that clearly wouldn't fit on Cindy's stepsisters. But sometimes speaking up saves lives and may change things for the better. So I'm going to write about an aspect of autism parenting.

Someone on social media decided to post a question. They asked if it was better to make an autistic child comfortable than to challenge them. The inquirer followed by saying this was a point of heavy debate in the autism community and someone had advised them that it was better to make their child comfortable implying that parent posting the question didn't agree with the idea of comfort over challenge.

The entire question was wrong because it was founded on the idea that normalization of an autistic child, by any means necessary, is the right ultimate goal when curing them is not possible. This ignores the reality that autism is a disability that requires, by law, just as much adaptation, accommodation, inclusion, and support as any physical disability would.

Autism is a lifelong disability. Autism is not "curable" by ABA. Enforced behavioral modification simply masks the outward expression of autistic behavior but can cause residual harm that presents in post-traumatic psychiatric disability. Parents often believe that the surfacing of mental health concerns in their autistic children expressed in anxiety disorders and PTSD are caused by autism when in fact they are part and parcel of a lifetime of no accommodation for their offspring's disability, traumatic enforcement of normalization in the guise of parental and professional "challenge over comfort" attitudinal ableism and treatment-related stressors accumulating over time.

Back to the question. Is it better to make an autistic child comfortable or challenge them?

What the hell does that mean?

Where daily life, care of self, care of the personal environment, and overcoming bars to access and disparities in everything from health services to educational equity are challenges which already exist for nonspeaking autistic youth, creating the "making them comfortable v challenging them" question as some adversarial issue dividing the autism community skews the autism conversation away from the true question.

Mu, in a gray t-shirt and gray shorts, Hispanic presenting
male with curly black hair and light brown skin uses
his AAC device, an iPad with TouchChat HD,
while sitting on our deck. ©Kerima Cevik

Why isn't the question "why hasn't the entire autism stakeholder community met and worked out the problem of how therapeutic support can be given without doing further harm to the autistic consumer, particularly when we now know that at least one generation of autistic adults have been permanently traumatized by how therapies are provided now?

When parents set incorrectly high expectations and later find they can't normalize their offspring to their satisfaction they begin a cycle of frustration based abuse that ends in tragedy.  Autistic disability rights activists discuss their own lifelong traumatic treatment experiences in the hope of sparing today's autistic children the long term damage they must live with because of these attempts to normalize them instead of providing the accommodations and supports needed to improve autonomy. If autistic parents were told their child had a physical disability that required they use assistive technology equipment like a wheelchair or cane, they would not then feel they must challenge their children to move through their environment without a wheelchair or cane. They would instead fight for the best equipment available for their offspring. Fundamental to the rift in the understanding of what autism accommodation, services, assistive tech, and inclusion should look like is this incorrect concept that autistic children must be forced to adapt to everything. This pressure increases the more a child can pass for what is viewed as normal. It increases if a child who might be able to communicate at a much higher level with an assistive technology device can produce single or two-word utterances. The goal with any other nonspeaking population is communication through AAC. With autistic nonspeakers, it is forcing two-word utterances and declaring their incompetence.

It is important not to conflate challenging a child after accommodation for a disability and forcing a child to a parent's view of what a normal person looks like. Forcing normalization is a clear sign that parent does not understand the scope of what encompasses autism as a disability and that is dangerous. Acceptance of disability is not lip service during Autism month where we can say we accept our children while compartmentalizing away the reality that they are disabled. It is critical to grasp that we are parenting disabled people. It is imperative that we be certain our children who can pass for typical are assessed for auditory, sensory, and cognitive processing disorders often missed in diagnosis because the child presents as "high functioning. It is critical to push for assessments that do not exist right now that can measure the same auditory, sensory, and cognitive processing disorders in nonspeaking autistic children and adults. Not knowing if a nonspeaking person processes what is said to them in a typical way is a major bar to any treatment, therapeutic support or communication support they need as disabled clients.

This is not a question of "comfort v challenge." It is a question of supporting decision making, educating your children about the scope of their disability and how to keep their mental health intact by using accommodations and assistive technology to support their processing and navigating a world not built for them. It means allowing coping strategies to remain in place as long as they aren't self-injurious.  It means actively seeking humane solutions to self-injurious behavior. It means when aggression occurs, understanding whether the culprit is something like your offspring being in that eight percent of epilepsy patients reacting to their medications with so-called Keppra raging.  One diligent autism mom tracked her daughter's rages and realized over time that the culprit was environmental and in fact an additive in McDonald;s fries. Once the culprit was discovered, the young woman was calm and happy.

Yet we parents are being taught that everything society considers wrong with our offspring is the fault of autism. More lives have been destroyed by this attitude than I can count.

This journey isn't about how embarrassed parents might feel that our children are disabled. It isn't about how things look to others. It is about preparing our disabled children to survive and navigate our world with as little stress and as much independence as possible. It is also about teaching them that society is also interdependent, and it is perfectly natural to need help and supports to safely navigate their lives.

Let us begin by understanding our own offspring as much as we are able. Let us realize everything we try to do with them on the excuse we are doing something for their own good has consequences.
Let us get our own headspace together so we can mentor confident, happy, autistic adults who know they are disabled and are fine with who they are.

Peace

Nonverbal, Nonspeaking, Autistic Word Navigation

Mustafa Cevik. image of a large, biracial Hispanic presenting
male wearing a sky blue nd white striped
polo shirt sitting in a wheelchair drinking from a water
bottle. Posted with permission from the subject. ©Nuri Cevik

The day I met Lydia X.Z.  Brown, they told me about a gentleman named Michael Forbes Wilcox and the word nonspeaking. Per Mr. Wilcox, most autistic people were incorrectly defined as nonverbal when they were actually nonspeaking.

This is why so many early intervention programs entail depriving autistic children of AAC support while battering them with forcible speech interventions. I guess their logic is there is no apparent physical challenge to producing speech so whatever utterances can be produced should be forced out of the autistic child by any means necessary.

The result adds to the presumption of said autistic child's incompetence because the child may have limited verbal speech ability but much larger AAC supported speech ability.

Thanks to Lydia Brown, I mostly use the term nonspeaking when discussing my son, but his situation is a bit different than most of his autistic peers. My son was diagnosed with damage to an area of his brain related to speech. We were told therefore that he was clinically nonverbal and probably wouldn't be able to speak. At all.

Ever.

 Mu has spoken on occasion in more than one language since that diagnosis and even during the time he was being evaluated. We aren't certain technically how he is able to do it. When it happens I try to act casual. But because when he does speak it is usually related to responding affectionately to either his father his sister or me, I am inevitably overcome with emotion. Just after such a moment, I  quietly remove myself from the room so he doesn't misunderstand and burst into tears of joy.

His voice, as he has entered puberty, is deeper, richer, and more beautiful now.

We were outside yesterday and kids ran by screeching as they played. It disturbed him. It is only on these occasions that I realize how big and different he is from others his age who do use verbal speech freely.

It seems to me, other fourteen-year-olds, talk too much.

His rare affectionate utterances have greater worth to me than the shrieking profanities and loudly whispered ableist slurs of his teenage peers dressed in what they consider their best adolescent finery.

Yesterday I realized again quite clearly that Mustafa, nonspeaking, is a better man than all the howling herd of fourteen-year-olds stomping about trying to figure out who they are by hurling insults at my silent, disabled son.

I love him. As he is. If he never utters a word again. We will continue to stand together, with him leaning on me when he needs physical support, and face the angry ableist racist mob. He doesn't need to speak. Unlike fourteen-year-olds, I know the value of well-placed words in defense of my son's right to navigate the same spaces as they do.

Autism Month should exist to educate those people. It does not. It makes them pity or resent my son and neither he nor I abide that attitude either. They should be taught that words are capital and each moment they spew the wrong ones in misunderstanding, fear, and hatred they bankrupt their own souls. This doesn't diminish my son, no matter how different he may appear to them. Different is not less. It is simply different. Disability and race are the only areas in which difference is not considered rare and precious.

Meanwhile, back at our house, a single word uttered by my son at the right time has the power to bring his jaded old Afro-Latina mother to tears.

Word.


----------------------
Resources

Educate yourselves at Lydia X.Z. Brown's blog:
http://www.autistichoya.com/

More on The Language of Autism by Michael Forbes Wilcox:
http://www.mfw.us/blog/2017/02/27/the-language-of-autism-special-interest-as-a-stigmatizing-phrase/

Surviving Inclusion: Non Speaking Autistic Communication And Ableism

"Not only does God play dice, but... he sometimes throws them where they cannot be seen."

Stephen Hawking

Mustafa using sign language to tell his sister what he wants to buy ©K.Cevik

The quote above reminds me that everyone and everything have value, and our not being aware of what value a human being has cannot negate that worth.

I've been involved with other things for awhile. Things happening in the nonvirtual world, or 'meat space' motivated me to try and talk about some other things that have been on my mind about communication, parenting, and the presumption of competence.

A young autistic friend of mine, Emma Zurcher-Long, learned to type recently and now can communicate by typing independently. She is an excellent example that assistive technology assessments and pathways should be continually offered to autistic loved ones no matter what their age, regardless of whether or not prior attempts fail. The tendency of conventional wisdom driven autism nonprofits, service providers, and other stakeholders to constantly emphasize early intervention, then deem the autistic nonspeaking individual 'doomed' if they cannot meet certain criteria after such intervention  or by a certain age is incorrect . 

Regardless of age, the most important bar to community access, autonomy, self-advocacy, and proper care autistic nonspeaking people face is the lack of communication support. Schools don't prioritize this in IEPs. At a time when some schools are thwarting the Individuals with Disabilities Education Improvement Act (IDEIA) by using online IEP formats as templates to standardize goals by disability rather than creating truly individualized education plans for disabled students, we parents must be vigilant about ensuring that communication is the highest goal for our nonspeaking autistic students. 

 Annual assistive technology assessments should be required for nonspeaking autistic students until an AAC system is found that is a good match. In addition, overall student performance enrichment by intensive speech service support should continue until the individual student has mastered  AAC device-based communication. This means mastery sufficient to use it to communicate effectively with their teaching team in an inclusive classroom setting. Establishing a solid communication foundation between nonspeaking students and all teaching teams that will facilitate their educational lives both now and in the future is critical. This is rarely if ever done in the present special education classroom or in what passes for inclusive classrooms in too many public schools. It is the primary bar to the inclusion of nonspeaking students in the general education classroom. While we are all chasing the dream of the fully inclusive classroom as the natural socialization tool for disabled children, we are overlooking giving them the primary means of accessing that or any other environment that is their right.

The lack of comprehensive augmentative communication support throughout the autism education system allows abuse, neglect,  and the presumption of incompetence of nonspeaking students.

My nonspeaking friends and colleagues' honest revelations of the ups and downs in their life narratives are important because this valuable insight helps us understand that even if we happen to hit on an AAC support that allows our children to type or communicate independently and fluently tomorrow, that doesn't mean that our disabled loved ones will suddenly be 'indistinguishable from their peers', and that is a myth too many parents who manage to get their kids to type grab onto and it is the root of the ableism-based abuse that happens to nonspeaking autistics even after they acquire a means to communicate. 

The example of what happened to Carly Fleischmann after she began spontaneously typing is before us. She lost her ability to type and was forced to find other ways to build words, because neurodivergent Carly continued to be unacceptable to her parents, despite the fact that their ableism throughout her life played a serious part in the pain and self-loathing she now carries. Disability doesn't disappear because someone is able to communicate better or because technology offers greater community access. Those of us who parent and educate need to grasp that and accept that communication doesn't equal a 'cure' of disability. Nor does being able to type to communicate mean we have the right to demand our view of 'normalcy' from a divergent individual.

The critical nature of gaining, then mastering device-supported communication means that those autistic individuals may be better able to explain when they've erred and for us who are parents, that means the doors to facilitating and mentoring open wider. Gaining AAC support also means the chance for diagnosis of conditions like auditory processing disorders that require the person being tested be able to communicate what they hear during a test. So if you are carers of autistic people who have gained communication skills through AAC support, consider testing for conditions that may still be undiagnosed before placing increased demands on your loved ones they may not be able to process.

As people grow up and grow older, they will argue. Another holdover from both the angelic disabled child infantilization and the idealized child myth is the concept that somehow our disabled offspring don’t have a right to lose their tempers, behave badly, or fail in the same way nondisabled offspring do. We parents, educators, and carers need to stop putting that kind of expectation of compliant perfection on our disabled nonspeaking loved ones and students. 

Why then is compliance and correction writ so large in autism support and intervention? We need to educate the communities outside of ours that our children have a right to express frustration, sadness, disappointment, fear, and anger as long as they cause no harm to themselves and others. We have this same expectation of every young person in society, yet our expectations of our disabled young people are neither fair nor reasonable.

What we are not doing in the disability rights advocacy community is stressing that failures and behavioral missteps are how we humans learn.  We were never meant to be the behavioral prison guards of our own children. We were meant to parent them. Once we change that attitude, which is gaslighted into our brains by all those meant to provide service and support for our children, we will be at the doorstep of the breakthroughs we need to properly parent our own autistic children regardless of age, behavioral history, perceived degree of disability or any other bar to a parent simply being a parent to their children. 

 Some nonspeaking people may never be able to communicate as fluently as others. Some may be truly operating at a cognitive level that is infantile. We must accept everyone as they are, and not reject association with a nonspeaking adult that is not the magic autistic trope or the silent altruistic shaman who wiggles his nose and causes miracles. We have to accept neurodivergence in all expressions and at all levels.

Many people, including neurodivergent people, either refuse to presume that a person with global developmental challenges can live and achieve an autonomous quality of life as an adult with the proper supports or refuse to accept this expression of autism as being part of the greater autism community. Everyone who holds these attitudes needs to realize that they are impeding the uplifting of an entire community and being part of a caste system that does not truly benefit anyone. When you act based on function labels you not only isolate  your peers but you do the dirty work of ableist people whose goal is to divide this very large block of people into smaller, more manageable groups who can then be denied the supports and services they need.  Wake up and understand that my son is just as great a person as a savant, an autistic who uses verbal speech, or a famous autistic individual whose head is filled with the helium of false praise so common on social media.

An individual'sat degree of disability should never matter in the fight for human rights. Just as when a person who identifies as Black is Black whether they have vitiligo or not, a person who is Autistic is Autistic whether you are comfortable with their visible degree of disability or not. If people cannot tolerate being around teens like my son and his peers, then they need to take a good hard look at their own struggles with internalized ableism, rather than redefining autism to suit their inability to accept a group of people who share their neurology.

O. J. Brigance uses eye gaze technology to give the pivotal testimony against euthanasia legislation in Maryland.

The video above features O. J. Brigance using AAC supporting eye-gaze technology to give testimony against euthanasia legislation in Maryland.

One more very important thing about assistive technology for communication. If the chosen method of communication does not lead to the nonspeaking autistic user being able to live an autonomous life, then a better match must be found. Assistive technology only works if the end user is ultimately able to communicate whether parents or care providers are there or not. Note that both O.J. Brigance and Stephen Hawking have remained productive in the advanced stages of ALS because their AAC communication technology allows them to communicate autonomously with eye gaze technology. This method of communication support was well thought out when they were at a stage of greater mobility. When we choose assistive technology we must be forward-thinking by making decisions that can bring communication autonomy for an individual's lifetime and we must give our students the foundation to be able to shift from older systems to modern, more seamless ones requiring less outside support. As a community, we should be lobbying for funding to expand the use of the most advanced technology for our own children, fighting for their autonomy, rather than warring over causation. 

May all your parenting, teaching, peer mentoring, or self-advocating days be joyful ones. 

~~~~~~~~~~~~~

For my Son, Magnificent Mustafa N. Çevik and his outstanding father C.Nuri Çevik, Emma Zurcher-Long and Ariane Zurcher, Henry Frost and Lauri Swan Hunt

----------------------

References:

For more information about under the radar autistics who type independently with AAC devices:

http://emmashopebook.com/

http://ollibean.com/category/blog/henry/

http://www.idoinautismland.blogspot.com/

On The Silenced Voice of Carly Fleischmann

http://franklludwig.com/carlyfleischmann.html

http://raisingrebelsouls.blogspot.com/2015/02/waiting-for-carly-fleischmann.html

Open Letter to The Daily Mail: On Your Coverage of NJ v Anna Stubblefield

This is a blog about Autism but the reporting on this case upset me so much I felt compelled to complain. 

Dear Daily Mail,

Please issue a public apology to both those living with incontinence, and the disabled community for the truly awful way you presented this case to the public.

I realize that any legal case involving sex makes for salacious headlines that attract higher readership, and when the sex involves a disabled adult, it just makes things more headline grabbing, but your coverage of the verdict in the case of Anna Stubblefield is thoughtlessly harming entire populations of people.  In journalism words are everything and the way words are used to color information can be more damaging that the actual neutral revelation of factual information to the public:

Headline screenshot of the Daily Mail with headline reading "Jury finds female
 professor GUILTY of raping mute, cerebral palsy-stricken, diaper-wearing man
after claimed the two were 'in love'

Stephen Hawking is a 'mute', 'diaper wearing', individual who needs supports to eat and walk, and we accept that he can think, write books and articles, be married, and father children. But somehow we cannot accept that someone born disabled could communicate without speaking even when the media  has repeatedly reported that such a thing is possible? We know people can be aware, alert, and unable to use verbal speech, as the stories of disabled adults like Martin Pistorius make clear. Yet  the Daily Mail insists on using features of a victim's disabilities to denigrate him in the eyes of the public in order to make the viability of any intimate relationship between the victim and the convicted professor as abhorrently improbable and 'weird' as possible to all readers.

As the daughter of a wounded American military veteran and the mother of a multiply disabled son, I strongly object to the language you are using to report these events. Splashing "diaper wearing" across your headlines as if incontinence is a bar to intimacy is shaming entire groups of adults who live full and productive lives with incontinence.  No headline is worth shaming people in order to try and make your story seem more incredulous.

"Cerebral Palsy stricken" is also an unacceptable, thoroughly ableist turn of phrase, particularly in a modern world where people like comedian Maysoon Zayid, actor RJ Mitte, activists and musicians like Keith Jones and Leroy Moore are making it clear that we need to rethink what we believe about disability in general and CP in particular. I know quite a few adults who proudly declare their CP labels who are in relationships and are parents. Their children don't deserve to see CP splashed on a headline as if their parents marrying and raising them is "weird news".

Then there is the misogynistic commentary under photos of the accused entering the court room. Her legs were pointed out and what she was wearing was described as if she was putting herself on display and this is also truly disgusting to do to a woman in any situation. Pointing out that she was smiling with the presumption that this is weird is also not professional journalism. People smile when they are afraid, when they believe in their own innocence, and when they are out of touch with reality and have no understanding of the events around them. Unless the Daily Mail is capable of mind reading, speculating on why the accused is smiling by innuendo based turn of phrase is also inappropriate. Report the story. Don't degrade women to increase your hits regardless of the verdict in a case.

Even in cases where trial by jury has concluded that a disabled adult was the victim of a crime, presenting events as if we are not discussing a 34 year old adult, regardless of degree of disability, is disrespectful to the victim.  I expected at least an attempt at due diligence in investigative journalism without promoting the stereotypical presumption that a disabled man cannot have a relationship with another consenting adult. Having witnessed the opposite in my time growing up with disabled veterans who live with extensive physical disability and traumatic brain injury and have their spouses and children standing by them, that is the wrong message to send to the public.

It is my understanding that this trial has been going on over a year. Due diligence in reporting required that prior to the verdict in this case, The Daily Mail at least present a more in depth background of the case, including the following questions, to the public:

1. Why did the victim's family consent to the use of 'Facilitated Communication'  as you emphasized it in your article, to begin with if they questioned its validity? 
2. Why did the victim's family actively travel and enjoy conferences, consent to the victim auditing college courses and accept that the victim was genuinely communicating for years prior to the point where the victim disclosed that the nature of his relationship with this professor had changed and as such he would be attempting to leave their guardianship?
3.  The victim's family, his legal guardians, were quick to file civil suit against Rutgers that failed. Does this imply they may have a financial interest in insuring the victim is declared incompetent?
4. On what basis was the victim in this case declared incompetent to depose or testify? In cases of guardianship with disabled adults where competence is in question and the adult seeks autonomy from legal guardians, independent communication and cognitive assessments should have been ordered by the court, and the disabled adult, if able to communicate, should have been given the right to request independent legal counsel. Were these independent assessments done? 
5. Everybody communicates. The victim could have been presented with simple communication tools that assist in determining the extent of any harm done him. Was the victim in this case questioned about the alleged abuse? Anyone capable of indicating yes or no can testify or be deposed about events. The question is, was this done? Wearing diapers doesn't impair brain function, nor does needing help with feeding and other supports. These things don't automatically mean lack of cognition, as again stories like Martin Pistorius' life story teach us all. 

You are reporting the conviction of a trusted professional for the rape of a disabled adult, the collapse of the accused's academic career, a potentially life ending prison term, and the eternal silencing of a victim who appears to have never been re-assessed or given a chance at any viable secondary means of augmentative alternative communication, after years of  being able to enter and audit courses from a college campus, travel, and be presumed competent. 

Nothing in this case is worth lampooning, or being used as internet fodder. I am quite concerned about the mental health of both the accused and the victim in this case. It seems odd to me that if a professor with no history of abusing others acts so completely out of character, no mental health assessments were done to insure that she was able to stand trial. 

 I am wondering why disability rights organizations not directly linked to Ms. Stubblefield and her activities are not concerned about the victim, why there was no attempt to offer services to find neutral AAC support by at least approaching the family and offering some help, and if anyone has even bothered to explain to the victim what has happened to his life and what will happen now. If I am wondering these things, then it is the job of reporting media like the Daily Mail to research and report them.

 Whatever this case is, it is much more complex than the Mail is presenting it and it is sad to me that a better job was not done investigating and presenting this to the public. If I can google and get more information on this case, it seems that the Daily Mail could have done a more humane and complete job putting together a story that related the facts without insulting so many people in the process. 

Sincerely,

Mrs. Kerima Çevik

Former Daily Mail reader

Resources:

-------------------

'Mute', 'Incontinent' Males

Stephen Hawking shares his voice software with the world

http://www.wired.com/2015/08/stephen-hawking-software-open-source/

Martin Pistorius: Trapped In His Body For 12 Years, A Man Breaks Free

 http://n.pr/1x3qgq6

http://www.today.com/health/ghost-boy-martin-pistorius-recalls-years-being-awake-trapped-his-2D80452772

Badass Disabled People

Writer, Actor, Comedian Maysoon Zayid

https://www.ted.com/talks/maysoon_zayid_i_got_99_problems_palsy_is_just_one?language=en

Rapper, Activist, Author, Leroy Moore

http://www.huffingtonpost.com/kathleen-kiley/why-leroy-moore-jr-has-no_b_8215840.html

Rapper, Speaker, Activist, father, Keith Jones mentoring

https://youtu.be/fwT0ikKekCc

https://www.youtube.com/watch?v=ud5hc21FYQI

The Case of Anna Stubblefield

Great Case Summary

https://emilybrookswriter.wordpress.com/2015/09/21/disability-rights-on-trial-whats-really-at-stake-in-the-stubblefield-case/

The Offending Daily Mail Article
http://www.dailymail.co.uk/news/article-3257661/There-s-weird-relationship-Jury-deliberates-defense-argues-female-professor-did-NOT-rape-mute-cerebral-palsy-stricken-diaper-wearing-man-two-love.html
Failed Civil Lawsuit Against Rutgers and Stubblefield
http://law.justia.com/cases/federal/district-courts/new-jersey/njdce/2:2013cv01762/287111/19/

Baseline AAC App Example
Yes/No Answers App
Cost $1.99
https://youtu.be/UkF6viJRLMY

Neurodivergence and Representation: Magic Maps, Musings, Farewells 1

The magical Leah Kelley blogger, speaker
educator, awesome parent of H

Leah Kelley, who blogs at 30 days of Autism, created an amazing people map for her son, H, who shows every indication of becoming a great voice for the next generation of autistic adults. She writes about it in her post Gathering At TASH and the Magic People Map. Leah has been kind enough to let me use her people map to feature some of those voices who found creative and out of the box resources to help afford the trip to Washington D.C., speak out, and participate for those they represent. Read about them while I try to gather my thoughts on various points regarding divergence in neurology and representation. I'm going on a hiatus, a sabbatical if you will, and narrowing my focus. I'm not quite sure how it will all work out. Hopefully placing this beautiful map of people cards throughout the post will help outline a path for my thoughts on where I am now and how to move on from here.

Leah's deep love and respect for her son H, her strong background and experience as a special education teacher, along with a keen understanding of what supports divergent people need to navigate public spaces, shine in the concept of these cards and made her latest great idea very much worth sharing. It is the definition of what autism parenting with love and acceptance entails.

30 Days of Autism  also hosted an excellent quick assessment of  the TASH 2014 conference from Cara, who blogs at That Crazy Crippled Chick, and you can read about that here. I actually recognized Cara from the I Am Norm Campaign's first Youth Summit! She has gone on to graduate school and outstanding activism.

My son Mu. My living example that nonspeaking
autistics deserve the same respect that the rest of
 the spectrum is fighting for

The Bad: I do want to be clear about my frustration at my  failure to bring about what was to be the most important contribution I could have made at TASH. I wrote about that on the I∩tersected blog, which you can read here and I may expand on it when I hurt about it less. My main job as a parent activist who works to be an ally is to use my parental privilege to create opportunities for disabled disability rights activists representing marginalized groups to be able to take the podium and speak on what matters to those they represent. My being there, or me being able to speak for or in place of two great activists who were Black and disabled was never the goal or the point. Had I wished to address people alone I would never have asked them to join me.
I was unable to garner the support to succeed in helping two important disabled activists afford the cost for the accommodations and supports they needed to have their voices heard at TASH 2014 in the moment when harm to disabled people of color needed to be spoken about the most. It was the latest in a series of events that marked my decision to withdraw from everything except blogging. I am now simply a blogging autism parent.

I realize now that the organizational aspects of disability rights activism as they are currently structured, are constrained by the same institutionalization of privilege, hierarchal discrimination based upon degree of disability, layers of intersecting factors which are othered by organizations lacking equal neurodivergent representation, and the racial discrimination that is polarizing our country in general. The voices of marginalized groups within disabled populations are already muted  (as defined in muted group theory by E. Ardener,  S. Ardener, C. Kramarae, and M. Orbe). Institutionalized disparities in representation and support for marginalized subgroups in disability advocacy made my task as an independent activist seeking grant funding for direct support of disabled activists who advocate for said groups impossible.

Me, retired activist, glasses perched on
on the end of the nose I inherited from
my ancestors, proud mom to
neurodivergent Mu.

These recent events, combined with what I have experienced over the past few years when trying to seek help for our son or other intersected neurodivergent individuals in need, have brought me to the point where I feel the need to step back from activism and try to work out fresh approaches to how intersected people of color can be fairly represented beyond tokenism and appropriation of content and ideas. I  also see sharp differences between how individuals in the dominant religion and those who speak for populations with high incidence disability are responded to when they reach out to our community to request assistance for themselves or others and when activists for marginalized groups request the same help and support. I therefore don't see any point in pushing against this wall of discrimination alone when such effort is unnecessary for those who fit a more acceptable intersected constellation. That privilege of limited intersectionality achieves whatever outcome they wish. I'll expand on this later as well.

I truly believe that with the exception of neurodivergent families of diverse races who conform to the dominant culture in every other way, the autism conversation will continue to be dominated by white privileged parents with the financial means to provide ample supports for the 'therapy' and education of their children. We will continue discussing what those children need and policy will be dictated by that group rather than by neurodivergent adults whose needs are underserved or heavily intersected populations who are both underserved and overshadowed by the dominant group. This is true across organizations. If someone of color is in a decision making position, that person must be from a class position that disassociates itself from those in poverty and silently allows the dominant voices to dictate autism policy, because when they have reached a place of power, they tend to forget that their true purpose is to serve their people. Instead they stay silent and do as they are told and think of their own gain. They justify this by the old myth that somehow they must accept the role of token in order to make history so that others can follow.

The Good: A chance to meet and have lunch with the next generation autistic disability rights voices was a great gift

H, son of Leah Kelley, autistic activist,
speaker, student and incredibly cool dude.

during the brief moments I was at TASH.  Henry Frost was unable to attend, but his example and presence were felt. Renee (see magic people card after Emma's  and Henry's below) invited me to lunch with her wonderful kids and H.  As we were having lunch with these amazing young people,  a great deal of self doubt and self loathing, the self directed ableism that haunted previous generations of autistics, was not there. Both speakers and typers were at peace in their own diagnoses, and this more than anything made me feel the online community may be having a direct positive influence on the new generation of tween and teen neurodivergent youth. This confidence and comfort with who they were, the relaxed way in which conversation flowed from neurology to gaming, from there to interests of the moment was uplifting and almost made my bitter disappointment with the underrepresentation of diverse voicesat the conference itself dissipate.  While we were having lunch I realized that a group of African American disabled activists were having a working lunch and discussing strategy for what was clearly their panel which would be occurring after lunch. Roughly 10 to 12 activists sat, ignoring everyone else in the retaurant. An opportunity was there to gain community involvement in their panel and simply network. It was heartbreakingly sad that their self imposed isolation was happening when we were all there, smiling and more than willing to listen had they reached out to us. But that is the state of activism now. We, activists of color, are burnt out and tired of a great deal.

Emma Zurcher-Long,  Autistic Activist,
Performer, student, advocate for non-
speaking autists who type to communicate

I recently ran across a trailer to an upcoming documentary on autism that begins at a short conversation with Temple Grandin. Because we have not reached a moment where our community has true representation in it, documentaries about autism will always have Temple Grandin in them, and will in many cases mention the movie "Rain Man" when discussing level of visible divergence. So Dr. Grandin states she is concerned about what she terms "too many smart kids, on the real fully verbal end of the spectrum, all they want to do is talk about their autism." Apparently, they spend more time discussing their autism than they do discussing their intense interests. I would say that it is a good thing that autistic youth discuss autism since their autism is part of who they are. It is quite impressive to me that young people know themselves well enough to discuss their support and accommodation needs, how their diagnoses give them advantages and challenges, and feel comfortable doing so. In fact Dr. Grandin has made a serious amount of money and gained great fame talking about her autism and writing her opinions about autism, when autism is not her area of academic specialization but is in fact part of who she is. So I was a bit surprised at her statement of great concern. If autistics start directly discussing their neurologies at such young ages, they will be able to advocate for themselves and others without self doubt or shame. That self advocacy is the goal, and a giant step towards having them direct the autism conversation and by doing so, direct their own futures. Reaching such a goal would give voice to hundreds of individuals across neurology,  rather than the present narrow field of voices limited to well intentioned autistic 67  year old Ph.D. s of animal science speaking in such a way as to obliterate the voices of those who type to communicate.

Henry Frost - Autistic Activist,
student, advocate for full inclusion, public
speaker and activist for non speaking autistics

Meeting some very confident young people at TASH left me hopeful despite my sadness for my own people. I would think Dr. Grandin would be proud of young people who self advocate about their own neurologies. Her statement also excludes very young activists who type like Henry Frost and Emma Zurcher-Long, able to communicate eloquently at such young ages with AAC support. Her insistence in seeing the future of our community only in kids on the spectrum with verbal speech when such powerhouse young typing activists are making names for themselves is not just sad. It is a very good example of hierarchy of disability by presumption of competence based upon what is visible rather than what is possible. Independent young typing activists leading their own generation are the role models for nonverbal autistic presumption of competence. Dr. Grandin speaks as if there was never a groundbreaking documentary called Wretches and Jabbers that changed the global conversation about communication and nonspeaking autism, and as if Naoki Higashida never wrote "The Reason I Jump". The reason Emma Zurcher-Long is a public speaker (note the word speaker meaning communicator - she types through most of her presentations that is her primary communication method) is because of the impact of these nonspeaking people.  Probably one of the strongest voices in our community is Amy Sequenzia who also communicates by typing. Dr. Grandin is a privileged

Amy Sequenzia, Autistic Activist and
Poet, advocate for nonspeaking autistics
users of AAC to communicate

voice in our community and she sets up an ableist hierarchy of disability, immediately feeling the need to insure that the listeners understand that she's excluding nonspeaking children when she discusses "the really smart kids". If she has this ableism, and she is speaking to audiences filled with parents hoping to learn something to help their children, what is she teaching them about my son and his peers? I have no soapbox that will equalize the reach of my voice and allow me to counter such ingrained prejudice. Her fame has given her a large platform but she is using it to segregate autistics who type or need supports to communicate from those who appear to have verbal speech and may not require supports in the classroom or have less visible expression of divergence in neurology.  I've tried to counter this attitude, with little success. I now need to step back and think of new ways to approach these kinds of tremendous obstacles within our community in addition to continuing my son's homeschooling and fighting the wars we must fight for representation of our loved ones outside it.

Renee orchestrated lunch with young autistics
as a conductor would a concert. 

I am also sprinkling this small gift to you of magic cards of people as I write, because the people in them are so dear to the autism wars for driving representation beyond acceptance and the incorrectly used "awareness" term. They give hope to our community because they lift others up rather than simply promoting their own careers in disability rights advocacy or activism. They act with the community in mind. They are refreshing voices in a sea of self serving organizations crushing those they are pledged to serve underfoot while wondering why the very members they harmed are not building community or volunteering for them any longer. I'm doing this so that should someone happen upon this post while I'm gathering thoughts and on my hiatus, they can google and find their way to the words and works of said folk, and learn from them. I want them to share my joy and marvel at strong voices in the very young and the not so young. I would like to see tweens and teens of diverse constellations on similar cards next year. The internet has strong neurodivergent poets, artists, graphic artists, singers, and authors, who are incredibly young. Others were around when Ari Ne'eman was too young to know what his future would hold. Please learn about these people, learn from them and tell them your stories so we can hear your voices and learn from one another. I hope the cards give everyone heart, make their burden's light and guide them towards the understanding that whether my voice is here or gone,  the potential for a powerful community in the neurotribes is strong,  can be united, and if united could overcome any obstacle.

----------------------------------
In case you missed the link in the first paragraph 30 Days of Autism can be read at (http://30daysofautism.wordpress.com/)

This is  the end of part one of a ridiculously long post divided into three parts.  Part II is next

Facebook Notes Series: My Standing Position on Facilitated Communication

Originally Posted on author's Facebook Page, April 21, 2014

Facilitated Communication, or FC, is the memorial whipping post of autism. An easy target to malign because fraud is always big news; many who do so are not aware that they are falling into an ableist point of view because said criticism is founded on the presumption of the incompetence of the user of this method as AAC support.

My issue with FC criticism is that medical malpractice is more frequent and widespread than FC fraud, but we don't discredit modern medicine, and we don't tell people not to seek medical help. Psychiatric fraud and malpractice are more widespread, but we don't discredit the practice of psychiatry. In fact one of the most devastating chapters in autism history was Bruno Bettelheim and the entire psychiatric community insisting on legitimizing his dissemination of the unfounded "refrigerator mom" theory of autism ( "although [ Leo] Kanner was instrumental in framing the refrigerator mother theory, it was Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated its widespread acceptance both by the public and by the experts in the medical establishment in the 1950s and 1960s." - Wikipedia).  An entire generation of mothers and their autistic children were irreparably harmed, all from a concept that was horrific, because the psychiatric community was not held to account for what the man was doing simply because of his professional label.

Cases of FC fraud should prompt the kind of response fraud in any other human services area does; that is a call for stringent standards and vetting for facilitators. It should not (based upon the presumption of incompetence of the nonspeaking participant, which isableist) be thrown out. Situations like these are why the cliche "throwing the baby out with the bath water" was created. Articles critiquing FC  facilitators should be doing just that. Not attacking the method, but shedding light on how important it is that standards be set for those facilitating, just as standards are set for quality of all those assisting and providing support to individuals in our community.

So:

1. Presume competence of nonspeaking autistic individuals. Sue Rubin, Jamie Burke, Amy Sequenzia , Sharisa Kochmeister and countless others show us that the ultimate goal of assisted typing can be achieved though reaching that goal may take years.

2. Critique the fraud by all means but realize that malpractice and fraud are rampant and this should never prevent a method from being explored or applied. Celebrate the successes of this type of AAC as well.

3. Call for better quality standards in managing those who are trained to facilitate. Because the consumer is a nonspeaking one, it is important that strong self advocacy skills be established in the consumer as well. Be part of a solution. Improve the lives of nonspeaking people, don't take away the legitimacy of their speech support and marginalize them. There is a great deal of room on this giant ship of autism. Let's let everyone get onboard.

This post generated 56 shares and 87 comments. I will try to add some of the comments which were posted references below.

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http://tinygracenotes.blogspot.com/2012/12/i-was-self-loathing-fc-skeptic.html
http://emmashopebook.com/2014/03/28/seeing-others-write-to-communicate/
http://tinygracenotes.blogspot.com/2013/07/dealing-with-family-matters-of-constant.html

American Speech-Language-Hearing Association. (1994). Facilitated communication [Technical Report]. Available from www.asha.org/policy. http://www.asha.org/docs/html/TR1994-00139.html#AP2 [Particularly important are The Final Recommendations: http://www.asha.org/docs/html/TR1994-00139.html#sec1.12 and Appendix 2: Minority Statement to Technical Report on Facilitated Communication and Response from Subcommittee Chair http://www.asha.org/docs/html/TR1994-00139.html#AP2] Accessed 25 April 2013.

Bailey, Judy, 2006, Dealing with Silence and Coming Out of Silence, http://www.everyonecommunicates.org/.../ComingOutOfSilenc..., Accessed 30 April 2013

Bailey, Judy, 2007, Slides from a Presentation given by Judy C. Bailey, M.Ed.,at Ellensburg, Washington, Summer 2007, http://www.everyonecommunicates.org/.../Ellensburg2007.html, Accessed 30 April 2013  http://www.everyonecommunicates.org/nutshell.html

Bailey, Judy, 2005, Thoughts on Facilitated Communication Training (FCT): What If…?, http://www.everyonecommunicates.org/.../ThoughtsOnFCT.html, Accessed 30 April 2013

Brandl, Charlene, Sometimes It Can Be Hard to Believe, Grandma Char and lessons learned, 25 March 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013.

Brandl, Charlene, Why I Do What I Do, Grandma Char and lessons learned, 11 January 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013

Crossley, Rosemary, Issues of Influence: Some Concerns and Suggestions, Facilitated Communication Digest, Vol.1 No.3 (May 1993) [pp 11-12], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soe.syr.edu/.../doc.../2011/8/Issues_of_Influence.pdf Accessed 23 April 2013.

Crossley, Rosemary, Literacy and Facilitated Communication Training, Facilitated Communication Digest, Vol.1 No.2 (Feb 1993) [pp 12-13], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soeweb.syr.edu/.../Literacy_and_Facilitated... Accessed 23 April 2013.

Crossley, Rosemary & Borthwick, Chris. 2002, "What Constitutes Evidence?" Presented at the Seventh Biennial ISAAC (International Society for Alternative and Augmentative Communication) Research Symposium, Odense, Denmark, 2002, https://attachment.fbsbx.com/file_download.php... Accessed 24 April 2013.
Fransden, Mike, Examiner Health & Fitness, 9 October 2010, Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing, http://www.examiner.com/.../facilitated-communication-fc..., Accessed 16 April 2013.

ASHA Practice Policy - Browse by Topic
Below are the official documents of the Association related to a particular topic. You can also browse documents by year and by type of document.
ASHA.ORG

Jasuta, Stephanie Sherbel, Speaking Up for People Who Can't Speak, Blogging Authors, Guest Post, http://www.bloggingauthors.com/.../speaking-up-for-people..., accessed 16 April 2013.

Tuzzi A. (2009). Grammar and Lexicon in Individuals With Autism: A Quantitative Analysis of a Large Italian Corpus, Intellectual and Developmental Disabilities, 47(5), 373-385.http://soe.syr.edu/.../2012/4/__Public_Lecture_SLIDES.pdf, Accessed 16 April 2013. (In English).

Wilkens, John, 'Nothings need to be heard', email Interview with Diane Goddard, Peyton's Mum, U-T San Diego, 29 March 2013, http://www.utsandiego.com/.../memoir-traces-familys.../... Accessed 16 April 2013

Williams, Donna, In the Real World, Printed in Vol. 3 No.2 (Feb 1995) of The Facilitated Communication Digest [pp5-9], Reprinted at Institute on Communication & Inclusion, Syraceuse University, http://soe.syr.edu/.../2010/7/in_the_real_worldwilliams.pdf Accessed 23 April 2013

Zurcher, Ariane, More About Facilitated Communication, Emma's Hope Book, 15 February 2013, http://emmashopebook.com/.../more-about-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, Is Facilitated Communication a Valid Form of Communication?, Emma's Hope Book, 16 November 2012, http://emmashopebook.com/.../is-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, An Unexpected Response and The Importance of Trust, Emma's Hope Book, 10 December 2012, http://emmashopebook.com/.../an-unexpected-response-and.../ Accessed 23 April 2013

Zurcher, Ariane, What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Thinking Person's Guide to Autism, 8 April 2013, http://www.thinkingautismguide.com/.../what-i-wish-id... Accessed 24 April 2013 

Sharisa Joy Kochmeister et al, The Voices and Choices of Autism - An Insider View, Volume 1, Issue 1 [pp 1-121]: June, 2009, http://pekdadvocacy.com/.../TheVoicesAndChoicesOfAutism.pdf Accessed 23 April 2013

http://www.thinkingautismguide.com/2012/11/interview-amy-sequenzia-on-facilitated.html

http://faithhopeloveautism.blogspot.com/2014/03/fc-full-circle.html

http://www.annemcdonaldcentre.org.au/anne-proving-i-exist