Autism Essays: On Apple's iPad Ads And AAC For Intersected Autistics

Kasap et derdinde, koyun can derdinde

(The butcher is concerned with meat, the sheep is concerned with survival)

                                                                                   -Turkish Proverb

Mustafa's well-worn backup AAC device, an iPad Mini, with TouchChat
HD App. Most parents wanting iPads for AAC support don't know they
actually need 2 iPads, one for backup in case the other is damaged, lost,
 or stolen @Kerima Cevik

"I've been trying to find a way to get him an iPad," she said to me, her voice cracking. 

"I just know if we could afford to get him an iPad, you know, with one of those language programs, that they would have to teach him to use it to communicate in school." "I could fight for that until they do." "He's fifteen now." "All this time they could have done more."

I kept my voice calm and even on the phone. "All this is true and that is a fine idea, but right now we have to focus on how we can make sure he has his seizure meds for the next two weeks." 

"You can't keep using his emergency meds." " Let's solve that problem together first." 

  I talked to her about the Partnership for Prescription Assistance program.  When her autistic son was out of the ER and back home stable and resting, I quietly asked what else they needed. "Have you been keeping up with your husband's medications and your own as well?" "Are you behind on your power and heating bills?" "When was the last time you and your husband ate?"

"But what do you think about my iPad idea?" She began again. "I just know if I keep him on a GFCF diet and get him an iPad, he'll be more able to ask for help when he needs it." "His service provider says he's too disabled for an iPad but I just know..." 

I told her I would send her contact information for MDTAP, The Maryland Assistive Technology Cooperative, and to reach out to them for possible assistive tech evaluations and to have him try some AAC devices on loan.   She was ashamed of her state of hunger, ashamed the DDA would discover what they'ed been doing to afford the special diet and out of pocket things for their son. She was terrified they'ed be seen as unfit parents and their son would be taken from them. 

"Promise to keep going to these food pantries?" I asked. " I promise," she answered. I told her there was no shame in needing food, that their present impoverished position had little to do with any failing on their part, and their son needed them to be fit and well nourished to help him. This was more important than anything else, that they all be healthy and safe.

We discussed nonprofits that could help defray the cost of their heating bills. 

When she called back from the nearest food pantry to say that everyone was kind and she was no longer ashamed, saying they would be okay and I was assured they would help another family in need, I hung up for the last time and let the tears come.  

How could a family with a teenaged son with intense support needs, a family who despite being long time disability waiver recipients were impoverished,  afford a $750 iPad along with the necessary protective cover with built-in amplifiers, as well as the language app required to give him the speech support he needed? The total cost was in the neighborhood of $4,000. In fact, they would need a backup AAC device as well, pushing this to nearly the same cost as the Dynavox AAC device the iPad + AAC app were competing with.

How could their son's social worker not notice that his mother, his primary care provider, was slowly starving to death in order to feed her son the special diet the extremely well off autism parents swore by? She wanted to change her son's life. I didn't have the right or the heart to tell her that wasn't fiscally possible. 

In the parallel universe of Autism in the American Dream, it's Autism Acceptance Month, and Apple has rolled out two ads for iPad that tell the story of an autistic teen named Dylan, who types to communicate. Here is one of them:

When I saw this ad, I thought of that particular nonwhite mother, and her tremendous desire for an iPad for her son when she and her husband were giving up everything, including food security, and living not month to month or day to day but hand to mouth to provide for him. What about her son's right to communicate? What about their dream?

I witnessed the whipped up virtual controversy over whether or not Dylan, the teen in the Apple ad, is using Facilitated Communication (FC) to type, when throughout the ad he appears to be typing independently. I thought about the staggering level of privilege inherent in the autism conversation. How proudly people discuss how affordable this technology is for autistic people when that is true only in the universe of the Autism Wars of privilege and that is reflected in this excellent ad with this very fortunate white autistic teen, whose entire life was changed with an iPad, a full-time speech pathologist, and any other supports he needed that the families I witness struggling could never afford.

While those comfortable parents who dominate the autism conversation argue about the Apple ad oblivious to the ableism inherent in their presumption of Dylan's incompetence, people are wondering how to provide basic communication supports for their autistic loved ones in the only setting they can afford such services - the public school system. Schools give them as little support as they can in one of the most critical areas of nonspeaking autistic support need; speech and language. But of course, none of this matters to families like Dylan's or those arguing about whether Apple's latest ad supports FC. 

Does it dawn on these opposing parties screaming at one another that very few families who aren't flush with disposable income from either the generosity of extended family members or immediate family wealth, can even afford FC training, or other typing based options like Rapid Prompting Method (RPM) for their children? Do these people have any clue of how perilously close so many families of autistic teens and adults are to catastrophic poverty? How many autistic adults who actually need the communication support of an iPad feel fortunate if they qualify for section 8 housing, health care, and food stamps? 

This is the root of the problem with the Autism conversation from this place of intersectionality where I stand witnessing all this disparity in priorities and arguments of what is needed while crises continue for families who aren't white and aren't wealthy. 

In the hard world of real life outside the privileged American dream, iPads are neither available nor are nonspeaking autistic children of color assessed for their use as speech devices in public schools.  IDEA requires such assessments for assistive technology in areas of critical deficiencies that bar learning. But they are rarely done. Printing PEC cards are cheaper than training teaching teams to support speech devices. Speech-language pathologists are too pricey to have them working with nonspeaking kids in public schools the 40 hours per week they would need to begin to master AAC communication on the most inexpensive AAC adapted iPad. No IEP team would create an individualized education plan for one nonspeaking student to receive one year of nothing but speech language towards mastery of a communication device. Intensive AAC speech support towards fluency is the way the world of special education and individualized education plans should work, but it does not.

Meanwhile far away in the land of autism for the American dream, parents shout for full academic curriculums and full inclusion for autistic children. Because their children already have all the outside speech, OT, PT, and any other supports they need, so their priorities are now social skills and integration, for the renewed dream of college for their offspring. 

The African American retired professional with the 15-year-old nonspeaking autistic son will have to continue to fight for that iPad and language app, because when the cost of living soars while a family's income is fixed they can't save any money. An iPad as an AAC device is a dream very much like winning the lottery. A dream with a one in a million chance of happening.

 I often wonder if that family was caught up in the Baltimore riots, trapped in the city while getting his medical care. I wonder how they are faring in the struggle to survive. I wonder about another family, an African American single father with two grown nonspeaking autistic sons who like to wander. They lived near Freddie Gray's neighborhood, and I wonder how they fared during the riots too.

I was the advocate of last resort. People heard about me through word of mouth. I would try and solve the emergencies they couldn't tell their service providers, schools, social workers, and distant relatives about and tell them how they could help themselves to solve any future ones on the condition they did the same for another family. Then they were on their own. The work was so brutal that for the sake of my own son's needs and my own emotional and physical health, I stopped doing it.

This is the truth of the parallel universes creating a canyon divide in the autism conversation. I am a witness to the frivolity of  arguments about the method by which an autistic teen learned to type independently,  thus gaining autonomy, while I try to shout that families of color are now slipping into poverty, and wanting an iPad based AAC device just as desperately as the well-off white mother in Apple's latest iPad ads for Autism Month wanted one for him.

The butcher is concerned with meat, the sheep is concerned with survival.

The voices of privilege are concerned with whether or not an autistic teen named Dylan is using FC in Apple's iPad ads for Autism Acceptance Month. I am concerned with how yet another generation of nonwhite, nonspeaking autistic children will gain access to the relatively affordable, but still expensive, iPad/Touchscreen devices, speech apps, and the speech supports they have a legal and human right to have in order to achieve even baseline communication skills for their own survival in a hostile world. 

-----------------
Resources:
On Apple's iPad for Autism Acceptance Ads
Emily Willingham, Ph.D
http://www.forbes.com/sites/emilywillingham/2016/04/02/apple-goes-beyond-autism-awareness-promotes-acceptance/#11f39b6c1385
On Maryland's Assistive Technology Cooperative
http://www.matcoop.org/about.htm
On Disparity in Communication Rights In Public Schools
http://autisticadvocacy.org/2016/03/asan-files-ada-complaint-on-communication-access-in-schools/
On the Partnership for Prescription Drug Assistance - a free program
https://www.pparx.org/

On Disparity in Education: The Risks and Bravery of Being First

The school year is about to begin.

Being one of the first or the only students with any discernible divergence in any characteristic is dangerous, difficult, and involves tremendous courage. Over 50 years ago, at the beginning of a school year,  the Little Rock Nine walked with angry white mobs behind them into their local high school to exercise their right to a public education with their white peers. Initially, the Arkansas national guard blocked their entrance by order of the Arkansas governor. Eventually, President Eisenhower ordered  my stepfather's unit, the 101 airborne division, excluding my stepfather and all black soldiers, to escort the students to and from the high school. Time Magazine's 2007 Legacy of Little Rock article recap of the more than half century that has passed since these events reminds us that sadly, most of our schools are still bereft of equality and still segregated along racial and socioeconomic lines. Most schools today are also not truly inclusive of disabled students, particularly those who have apparent differences,  multiple challenges, or whose neurodivergence is clear and cannot be masked.

 The thing about relating historic events is that documenting them doesn't always impart the impact on those taking part in them.

Image description: Elizabeth Eckford. a tall black teenaged girl in a white and plaid dress, sunglasses, and short curly hair, tries ignoring the insults of Hazel Bryan (2nd from the R), and others in a crowd of taunting whites bullying her as she tries to reach Little Rock Central High School, September 4, 1957.

We frequently discuss bullying in schools, and how things must be done to stop it. Disparities in education amplify the likelihood of abuse of all minority pupils in  life threatening ways on a daily basis. When a student steps up and insists on exercising their right to a free and appropriate education, and that student's parents make the decision to support their son or daughter, an entire series of events is set into motion. These events that set the stage for disaster in the aftermath of victory evolve from the resentment of radical change by those who feel they benefit in some way from the status quo. Being new, different, first, has consequences. What happens if, unlike the Little Rock Nine, a student who is divergent is unable to inform parents when staff and other students are targeting them because they are different? What are their options? For those of us who were students of color in the 60s and 70s integrating all white schools, administrators, teachers, and staff were many times not our friends and some were our abusers. If you were verbally abused, bullied, beaten, or worse, some staff looked the other way. This reality of constant sustained maltreatment is a fact of public school life that parents might understand intellectually but are not able to grasp viscerally. Their divergent preteen or teen  must walk into that war zone each day alone.

In the fall of 2012 at Hillsborough County Florida's Rodgers Middle School, special needs student Jennifer Caballero walked out of her gym class. We will never know why. Jennifer's body was found 6 hours later by divers in a pond. 

Image is a photo of Jennifer Caballero
An 11 yr old Hispanic girl with dark hair
worn down with bangs. She is looking up.
Her mouth is open in what looks to be the
beginning of a smile.

The presumption made was that Jennifer's disability influenced her behavior and she simply wandered off. But every competent professional I have questioned on the topic of student wandering, elopement, truancy, and absenteeism stated that if a student wishes to leave an environment there is something wrong with the environment not the student. In fact, a week later, a different Hillsborough school district teacher failed to report that another special needs student in another middle school was missing from her classroom. If these students were not neurodivergent, many things would come into question. Are these students being bullied or ignored in their schools? What is happening to drive this low tolerance of the school environment? I know among those of us who were many times forced to integrate all white schools, the abusive environment was too much, and because those in a position of power had no interest or regard for the abused pupils, students would simply cease attending. No one would assume that if a typical student walked out the student was the sole problem. Only in school districts where extreme poverty exists, the school has a disproportionately high nonwhite population, or the student is in special education is this somehow an acceptable answer.  The Hillsborough County school district has the disturbing record of having three students, all minorities, all neurodivergent, die while in their care. Cases like these end up settled in lawsuits and forgotten. Meanwhile those critical factors in both the micro and macro cosmic milieu of the student preceding the catastrophic event are not addressed or changed. 

 As a student who survived things happening sometimes right under the noses of well meaning classmates and good teachers, I wonder how I can emphasize the depth of the crisis here. It isn't just a crisis of one district school system. It is a crisis of attitudinal ableism that permeates the present education environmental infrastructure such that when harm comes to a student, the student, who is the victim, is blamed. It was not the fault of Elizabeth Eckford and the other eight black students who tried to attend high school that each day of their school year was a hell of angry white mobs hurling insults and threatening harm; nor that this maltreatment continued inside the school as well. It was the fault of the setting they were forced into and those who administrated it. Leadership sets the tone for how any student is treated in school. What you see in the picture of Elizabeth above is akin to what is faced by many disabled students in general and neurodivergent students in particular throughout their academic lives. The more apparent the difference the higher the rate of daily maltreatment. The "cover your public entity's behind" approach to school administration does nothing to insure the welfare of students at high risk for victimization. When someone is noticeably behaviorally, intellectually, or physically different, isolating them from their peers will not help reduce bullying and maltreatment. Segregating them within the greater general population of students doesn't help either. I want to end this cycle of secret harm that happens even when our children have made some headway towards inclusion by in some way shape or form entering their neighborhood schools as Henry Frost has. We need to understand that the Henrys of the world are paying a high price in trade for their insistence on justice and what is right. We need to step our support of them up a notch as a community. Doing so might be one of many ways to help prevent the deaths of students like Jennifer, while protecting the mental health and welfare of students like Henry and my own son Mustafa.

This is an example of an idea simmering in my head. A kind of roadmap maybe. When a new divergent student transitions into a neighborhood school there should be a transitioning plan in place for all parties involved (beyond the IEP of the student) whose aim is the safe absorption of the student into the academic and social life of the school. This could be done if stakeholders:

1. Acknowledge that both the first students to enter full inclusion and the fewest of any minority group will be gaped at, maltreated, and jeered at behind the backs of staff and administrators. So it falls upon the faculty, administration and staff to create bridges to introduce these students to the student body at large and ask for volunteer peer mentors to actively take on goodwill ambassador roles for students transitioning into fully inclusive environments.

2. Arrange mandatory team teaching and inclusive education training for staff and teachers that includes understanding and overcoming ableism, spotting red flags indicating bullying or maltreatment of divergent students, and a toolkit for transitioning to an inclusive classroom teaching protocol that mitigates bullying and fosters inclusion by example.

3. Create anonymous, safe, procedural protocols for reporting incidences of abuse against special needs students that protect faculty, staff, and students from retaliatory action from superiors or aggressive peer groups. 

4.  Create a route for either virtual or onsite observation of schools and classrooms where true full inclusion is working and auditing schools where it is not. Compare what is being done right with what is going wrong and include all shareholders as equal members in making inclusive schools safe academic environments for all.

 I cannot ask Henry Frost how his year in his neighborhood school went. It is a personal thing that he

Image of Henry Miles Frost and his service dog, Denzel,
Henry is holding two signs the large one in white, reads
"The Civil Rights Act of 1964 granted equal rights to all
people." "I am a person". "I want these rights".

may not be ready to discuss. Ever.  I can only guess. I can only guess what may have been on Jennifer Caballero's mind when she decided to leave the gym on the last day of her life. I can only imagine what was going on in Elizabeth Eckford's mind when the picture posted above was taken on September of 1957. Having been in their positions, I can only salute these brave souls, and pledge solidarity from a fellow survivor. And to brave Jennifer Caballero, rest in peace. We will remember you. Change is going to come. 







Links
http://content.time.com/time/magazine/article/0,9171,1663841,00.html 
http://www.huffingtonpost.com/2012/10/23/body-of-missing-11-year-o_n_2007099.html
http://www.tampabay.com/news/education/teachers/hillsborough-teacher-fired-for-letting-special-needs-student-wander-away/2164074
http://stateimpact.npr.org/florida/2012/10/10/social-media-helps-student-with-autism-find-his-voice/

On Disparity in Education: Equality is Not Justice

There was a meme making the rounds of all the social networking communities a while ago. The meme was entitled "Equality Doesn't Mean Justice". This is a derivation of a meme by professor Craig Froehle. Let me post it here to save time:

Image is a two frame caricature the first is of a tall man a man middle height and a very short man all standing on boxes of equal size trying to look over a fence at a baseball game. The tall man and shorter man are able to see but the smallest man is not. The caption below the first frame reads "This is equality". In the next frame the shortest man is now able to see the game because he is standing on two boxes, and the shorter man is standing on one. The tall man needs no box and is still able to see the game. The caption under this frame reads "This is justice". 

It is very difficult to explain this distinction to any professional who has no understanding that my son's race, gender, perceived socioeconomic status and his degree of disability combine to leave him vulnerable to the same negative stereotypical  biases that have caused harm to him in the past. What is seen as equal is presumed to be just. My son needs three boxes to reach the justice of a free and appropriate education. He cannot be presumed to be treated fairly because his treatment is equal to another child of equal pathology who has no intersectional factors increasing risk of unjust placement and maltreatment in the classroom.

Appropriate education was meant to achieve equality with average students in public schools. But this approach is rarely just, particularly for students who must overcome misdiagnoses of emotional and behavioral disorders often placed upon them automatically. Their race and gender are used to presume that rather than educational supports they require behavioral management. Exclusively with males who are Black, the attitude with special education professionals is always an entrenched demand about controlling the pupil, and this is based on a systemic type of racism that assumes that if a person is poor, male, and Black, their behavior will become aggressive eventually.  So every action is viewed through the lens of  the racist legacy of a history of violence. The same action by a non-Black student might not be viewed in that light at all. A self fulfilling prophecy for nonspeaking autistic males, who are hypersensitive to fear in others and will react by mirroring the fear they sense in classroom staff and trying to defend themselves against whatever may come at them. Add to that administration by risk management and fear of responsibility for some imagined outcome if some child is not locked away from their peers and you have a recipe for discrimination that is an infinite loop until a student ages out of the school system. A 'good' student will then have learned to comply with rigid routine, the primary rule for living in an institution. They will learn helplessness, not self advocacy. The 'bad' student will have increasing force used against them until some catastrophic event occurs.

Sadly I realize that if my son and most of his peers did not carry these labels, what would be the primary focus of any educational roadmap would be what is just. How does one counter a mentality based on historical fear of large males of color combined with a historical fear of neurodivergent individuals? Professionals are often not even aware of the fear and bigotry driving their decisions and responses. If told "this response is ableist" or "that opinion is actually a racist assumption rather than a professional observation" they will use their credentials to balk and react with hostility. "Parent" will be used as a derogatory word. One's credibility as a parent will come into question.

In the distant past threats were made to us during meetings in an attempt to instill a fear of reprisal to our son or us should we complain or demand justice.

 Yet now my son's future, as well as that of his intersected peers, is in their hands. How can we navigate this booby-trapped environment?

I am trying to base communication on facts and focus on quantifiable observations and assessments. This is the best I can do. I have no control over the bigotries, fears, and disdain of those who might work with my son going forward except to be on the lookout for red flags in those people and how my son reacts in their presence. I have had the honor of getting to know my son well for three years. I trust him. He does not need to speak to let me know someone is mistreating him. I can only return him to being the lead protagonist in his own life and stand by him as he overcomes obstacles himself. But when you know this institutionalized ableist racism exists, and it looms over your child's world decimating the quality of life he might achieve it hurts. Beyond the injustice of it all, it is an exercise in standing by helplessly hoping your child can survive his education. It is frightening.

As we arrive with our son closer to end of our four year battle for his right to be educated, I want justice. I cannot accept less. My son deserves justice. I want him to have his right to an untainted free and appropriate education. I do not know how, under the present system he can achieve this goal. But he deserves to be back in command of his own life story in safety and peace.

Wish us luck. We really need it.