Wednesday, December 4, 2019

An Inclusionist's Manifesto

1
Photo © Mundial Perspectives | Flickr / Creative Commons
[image: A white teacher with shoulder-length straight dark brown hair holding
up a globe to a group of young students of varied races, several of whom are
raising their hands, all of whom are seen from behind.]

Tim Villegas
www.thinkinclusive.us

I spend a lot of time thinking about inclusion.

Most of this energy is spent coming up with ways to explain inclusive education clearly and succinctly so that everyone understands what it is and why it is essential. Because, to me, it is one of the most crucial things we can do for students (disabled or non-disabled).

Here's the challenge. You probably already have thoughts and opinions about inclusion. Maybe you have already decided that the cognitive difficulties or level of autism your child has, would not be appropriate in a general education classroom. Perhaps you have a notion that inclusion is good, but you don't know what it looks like or how to even advocate for it. Or conceivably, you are all-in for inclusive education and want your child in general education 100% of the time, all day every day. In all of these scenarios, we need to take a step back and see the larger picture of how inclusive education fits in our educational system.

When I started as a special education teacher in 2003, I worked in what was called a "Special Day Class." In Pasadena, California, with the majestic San Gabriel Mountains outside my window, I taught my heart out for my 4th, 5th, and 6th-grade students with labels of "moderate to severe" autism.

Back then, my students would spend the entire day in the classroom following a strict routine that I created for them. Moving from station to station, my pupils would learn a modified curriculum. When they finished, they would earn a reward (i.e., playing with a toy, listening to music, or eating a piece of candy).

I felt like we were doing good work. We cared about the students and learned to love their unique interests and quirks. We would start each day reading the local newspaper, taking each section out, and prompting the students to either read the headlines or identify the images.

"Who won the Laker game last night?" I would say, pointing to the box score. Jasper, a student who could read practically anything I put in front of him, bellowed the score, "Los Angeles Lakers 101, Chicago Bulls 94!" Welling up with pride, Mr. A (my paraprofessional) and I gave each other a high-five. "That's right! Kobe is looking good this year."

After newspaper time, we would transition to "circle time." This consisted of reviewing the calendar, days of the week, months of the year, the weather forecast, and singing Roy G. Biv (a song about the colors of the rainbow) complete with the strumming of my guitar.

Following "circle," my students went to check their schedule. Each of my kiddos had an individualized schedule that displayed picture icons designating where they should go. They would grab the image (paired with a word) and then move to the corresponding area of the classroom (i.e., Math, Reading, Play, Computer, Independent Work). I spent hours setting up the initial schedules so that it all ran like a scripted play.

This structure worked for the most part, and the times my students struggled, it typically centered around communication issues. They wanted something, and I either didn't understand what they wanted, or it wasn't available at the time, which caused frustration and often meltdowns or aggression.

I was still going to school at the time because, in California, you could be hired as a special education teacher with a provisional teaching certificate. My teaching program promoted inclusive practices. This meant that it covered models like co-teaching (where special and general education teachers work in the same classroom), collaborating with general education teachers, and strategies for including students with autism (or other low-incidence disabilities) in general education classrooms.

I distinctly remember having a heated discussion with a professor in my program about how they just didn't understand that students with autism needed to be educated with other autistics. "But my students need to be taught routine! How will they learn that in a general education classroom? They can't do the same things everyone else can!"

Instead of debating our differences in philosophy, my professor gave us an assignment. Pick one student who is educated in a self-contained (segregated) classroom and create an inclusion plan.
"And don't pick an easy one, pick a student that you never would think could ever tolerate time in a general education classroom," she said.

I had the perfect one.

Nathan* was a 5th-grade student who had limited verbal abilities and engaged in self-injurious behavior. His verbal stimming was extremely disruptive, and when he got angry would often hit or kick anyone or anything next to him. I never in my wildest dreams thought that he would be successful in a setting with typically developing peers.

I was wrong.

The plan included examining the student's interests, communication skills, and adaptive strengths.

The idea was to discover who Nathan really was, what he liked, and what he was good at.

Next, the plan included planning with a general education teacher a lesson that would take into consideration Nathan's strengths.

Despite all of Nathan's communication and sensory issues, he was a wizard with scissors. In fact, that was one of his favorite things to do. If he wasn't cutting strips of paper or cardboard, he was shredding paper with his hands. Picking up leaves outside and crumpling them in front of his eyes so that he could see the minute pieces fall to the ground was one of his favorite things to do.

The plan began to form. Whatever we were going to do, it would involve cutting.

After a few more planning sessions, the day finally came. It was time for Nathan and me to walk down the long hallway to the classroom for science class. The activity was to create a topography map out of cardboard.

Luckily for Nathan, there was a whole bunch of cardboard to be cut for this activity. As he sat in a desk in a classroom with 35 of his peers, I was astounded at how calm and focused he was cutting to his heart's content.

His task was meaningful, age-appropriate, and for 45 minutes in that science class, he belonged.

Did that one activity set Nathan on a path of full inclusion? No. But what it did do was set me on a way of believing that any student could be successful when certain conditions were present.

Nathan was a turning point for me, and I looked for more ways to include my students in my school.

The other teachers in the school, as well as my paraprofessional, saw the success and bought into my vision. It was like a religious conversion, and I had been baptized in the church of inclusion. That is how I feel when I am talking to people about why inclusion matters. Over the years, I have become an evangelist of sorts.

But this experience wasn't enough for the educators at my school or for me. My students were still segregated despite my efforts to increase their time with their peers. Joining their typical peers in recess and lunch, going to assemblies, and the occasional visit to a general education classroom didn't seem like enough. I wanted to know why I couldn't include all of my students all the time.

I came to work with the cognitive dissonance that I was doing what I loved, but just in the wrong location (a segregated classroom). But then I realized that I wasn't thinking big enough. Through talking to other teachers who were passionate about inclusion, another vision of inclusive education began to form.

Inclusion is not about physical proximity. It is about planning for the success of all students.

Full inclusion doesn't mean students with disabilities (significant or otherwise) should spend 100% of the time in a general education classroom.

If this sentiment is offensive, then inclusion advocates, like me, have done a poor job communicating what inclusion is really about.

Full inclusion is better understood as a mindset and framework for educating students with and without disabilities.

The idea that "we learn better together" is not a new concept. In fact, it is a notion that has been in the refining of academic and peer-reviewed studies for over 30 years1.

Consider that there are multiple examples of authentic and thoughtful inclusive education around the United States, Canada, and other parts of the world2. You may have seen inclusion fail with your own eyes. Or you think inclusion only works for specific students. Alternately, you believe that time spent in general education is the most substantial measure of whether a school is inclusive.

Inclusion doesn't exist without a mindset that every student in a classroom, school, or district belongs.

Full and authentic inclusion means total membership in a community. The percentage of time spent with typical peers is only one of several quality indicators3 of an inclusive education program. There is no guarantee that because your child is present in a classroom with non-disabled students, it means they are included.

Full inclusion is going to look different in every school and every classroom and for every student.

What is non-negotiable when it comes to inclusion is the expectation and desire that everyone belongs (and learns) together.

As prominent inclusive education advocate Lou Brown4 states:
"It is unacceptable for students with significant disabilities to spend 0% of their time in general education classrooms. While better, it is also unacceptable for them to spend all of their time therein. Self-contained regular and self-contained special education are both rejected because each extreme disallows important experiences and opportunities. The preference here is that they are based in general education classrooms in which they would be based in they were not disabled. Then, the individually meaningful amounts of time each need to spend elsewhere should be arranged."
The abysmal fact is that 17 percent5 of students with any disability spend all or most of their days segregated. Having students removed from their typical peers and general education classroom should be a rare occurrence. Today, the practice is widespread.

We need another system. We need to have a system where special and general education teachers work collaboratively for all students.

I want to bring back a word in the vernacular of the inclusive education movement. In 1997, Ellen Brantlinger6 from Indiana University first used the term “inclusionist.” She defines the word as those “who oppose pull-out instruction, questions the status quo of special education, and sees a need for an overhaul of the system or discontinuation of special education as a separate system." Rarely is this word ever used to describe people supportive of the inclusion movement, but that is precisely what we are. We recognize that the system is broken. Special education has never been fully funded, it promotes an "us and them" mentality, and teachers barely get any training in how to work with autistic students.

If this is striking a chord, then maybe you are an inclusionist too. Let’s get rid of special education and create one unified educational system. We are still years off from a significant restructuring of special education. But let me remind you that universal healthcare was called a pipe dream not too long ago.

Some push back that I receive about a more inclusive vision of inclusive education is that families who support any segregated environments should not get a voice. I disagree. We must not forget the families and individuals with disabilities who prefer separate spaces or classes. If we are not listening to the people, we are supposedly advocating for what exactly are we doing? You don't think we can plan for the success of all students and still support small group learning and separate spaces within an inclusive model? You are not thinking creatively enough.

So, what are we supposed to do? How can we be an inclusionist in an increasingly divided educational climate? Here are a few steps that you can take as you advocate for your child.

First, communicate your vision of inclusion with your school team. Sometimes this looks like a one-page introduction about your child that you give to the team members at the IEP. Many times, the people that are at your first IEP meeting have barely met your child. State from the very beginning (and make the team put it into the meeting notes) that an inclusive education for your child is the priority. If you are further along in your journey, better late than never, just make sure it is on the record.

Next, work with your school team as collaboratively as possible, if possible. As you navigate the IEP process, it may get messy with your expectations for your child and the school team. Stay consistent with the vision that you laid out for your child, and as they grow, give them input on their own life. Do your best to build consensus in your meetings. Still, there may come to a point where hiring an attorney, advocate, or inclusion coach is necessary.

Then, understand the Least Restrictive Environment (LRE) and Special Education case law. You won't be an expert overnight but understand what IDEA says about LRE. Remember that schools make decisions based on data, and your case for inclusion is strengthened if your child is making progress toward their IEP goals and objectives. Try to avoid having too many IEP goals and objectives because it weakens the power of the data. Better to have a few sharply written objectives with reliable data collection than 20 targets where a teacher is spread thin to collect accurate data.

Finally, create IEP goals and objectives that must be tracked in general education. Including typical peers in math and reading goals will ensure that data is taken in general education settings.

What can you do where you are to move inclusion forward, even if it is a small action? If a million of us take one step, that is a million steps in the right direction.

----

*Name changed for privacy purposes.

Footnotes

  1.  Research Support for Inclusive Education and SWIFT, Swift Schools (2017)
  2. A Summary of the Research Evidence on Inclusive Education, ABT Associates (2016)
  3. Quality Indicators for Inclusive Building Based Practices, Maryland Coalition for Inclusive Education (2011)
  4. How Much Time Should Students with Significant Disabilities Spend in Regular Education Classrooms and Elsewhere, Lou Brown et.al. (1996)
  5. Learning with Disabilities: One Effort to Shake Up the Classroom, NPR (2014)
  6. Brantlinger, E. (1997). Using Ideology: Cases of Nonrecognition of the Politics of Research and Practice in Special Education. Review of Educational Research, 67(4), 425-459. Retrieved from www.jstor.org/stable/1170517


Wednesday, November 20, 2019

Harriet: A Neurodivergent Film Review

Source: Focus Features
[image: Poster for the movie Harriet. A glowing
orange-brown background features three Black people,
one man and two women, in 19th century clothing.
The woman in the center is wearing a wide-brimmed
hat and has an unapologetic expression. Below them
is a smaller photo of the center woman, in profile holding
up at pistol. All-caps white text below her reads, "Harriet"]
Maxfield Sparrow
unstrangemind.com

The movie Harriet (2019) is 125 minutes (two hours and five minutes) long.
www.focusfeatures.com/harriet

----

The first thing I noticed about the film Harriet was that the showing was sold out. I was eager to see the film and was simultaneously irritated and grateful that I couldn’t get a ticket. Irritated, because it meant buying a ticket for a later showing and finding a way to kill time for a couple of hours. Grateful because Harriet’s story is one everyone should know.

Harriet is the story of Harriet Tubman, the former slave who walked 100 miles to freedom all by herself when almost no one else took that journey alone. She went on to become the most celebrated Conductor for the Underground Railway, the clandestine project that united folks across race and gender lines with the focused goal of bringing captive slaves north into freedom. Tubman liberated 70 slaves, then went on to lead battles in the Civil War. She remains one of the very few women who have ever led a wartime charge for the United States military.

Harriet sustained a head injury as a young teenager that led to epilepsy and precognition. She “saw” her sisters being sold away from the plantation before it happened. In the film, she’s depicted having visions of both her own escape and her facilitation of others’ escapes. These visions, coupled with her strong faith in God, lent her the courage to become a great leader, like Moses, bringing her people out of slavery and home to the Promised Land.

I cannot review this film from the perspective of a Black person and I urge you to read other reviews that are written by Black people and other People of Color. But I would like to focus on the aspects of the film that affect neurodivergent people and people living with trauma-induced sensitivities.

No flashing lights, rapid jump cuts, or explosions


It would have been unpleasantly ironic had the film contained flashing lights or other seizurogenic visuals, considering Harriet’s own experience with epilepsy, but I have seen a documentary about cochlear implants that had no closed captioning so nothing would surprise me at this point. There were no jerky visuals or flashing lights in Harriet, though I cannot promise there are no seizurogenic sounds because I’m not familiar with all the sounds that can trigger seizures.

Overall, the sensory experience of Harriet was pleasant with nothing that triggered agitation or distress for me. I commented to a friend afterward that the movie felt a bit dated (in a good way) to me because other than the cinematography being more modern, Harriet might easily have been Roots. This is not to say that there weren’t any emotionally intense scenes, but I will cover that in another section.

From the perspective of sensory sensitivity, Harriet is gentle on the nervous system—one of the most sensorily gentle films I’ve seen in a long time. The downside of this, of course, is that it will be a hard film for those with higher sensory input needs to sit through. I did get up to use the bathroom and had an easy time returning to the film. I didn’t want to leave because the story was engrossing, but I’m pleased to report that easily distracted viewers should be able to follow the story well, whether they have to leave the room for a sensory break or whether their mind wanders at times while watching.

The audio at the theater where I watched Harriet was low-key and not painful (though you’ll want to bring ear defenders just in case since volume can vary from theater to theater). The speech was clear and not mixed with large amounts of music or sound effects, but if auditory processing is something you struggle with you’ll still want to try to find a showing with captions.

Face-blindness


I have prosopagnosia or face-blindness so I”m always worried about whether I will be able to follow a storyline or whether I will get lost in trying to figure out who characters are. While there are many minor characters and I often wasn’t sure who they were, the film did a great job of helping the viewer to keep track of the major characters.

In the beginning, when Harriet was known as Minty and was just part of large groups of slaves working in the fields. She was easy to keep track of because slaves had one outfit they wore all the time, so Harriet was easy to spot in her tan headcloth. Harriet’s husband, John, was easy to recognize in the beginning because he was connected with Harriet: hugging her, kissing her, holding her hand. Later in the film, John was easy to spot because his left eye became badly scarred.

Two of the Black actors had grey hair and were easy to spot: Harriet’s father had longer hair and a bushier beard and Reverend Green had short grey hair. These actors stood out and were easy to keep track of. Harriet’s friend and landlady, Marie, was easy to keep track of because she wore very fancy dresses, more ornate than any other character. Among the white characters, the main antagonist was the only person with shoulder-length blonde hair making him easy to spot. Harriet’s former master was not in the movie for long before dying and his widow was mostly easy to recognize because she was the only white woman the film spent much time with and most of the time she was with her son, the man with longer blonde hair.

I found that the film did a good job of letting me know who other characters were by either always showing them in the same place so they were easy to keep track of, or clearly identifying them at the beginning of scenes. I give Harriet a B+ for face-blindness accommodation.

Violence


For many traumatized and emotionally sensitive people, violence is a major factor in deciding whether to see a film or not. There was a significant amount of violence in the film, including one scene where I could hear others in the audience gasping. I will go into more detail shortly.

There was very minimal blood in the film—mostly things like the redness of an open wound with nothing dripping from it. Blood was kept unrealistically absent throughout. For those with em*tophobia, there was no r*tching or v*mit in the film, although there was one scene where a woman was so scared that afterwards it looked like she might have v*mited from fear and held her body in a position that suggested v*miting, but she did not actually cough or v*mit.

The N-word is used often, throughout the film. I did not keep count, but I would estimate about two dozen incidents of the N-word.

A man slapped a woman. A man injured another man’s face, damaging his eye. Many people were depicted with scars from whippings or burnings and there is a scene where former slaves describe their injuries at the hands of slaveowners, some showing their scars. A man was shot in the forehead and killed. A woman was beaten to death, including being stomped in the head when she lay on the ground (this was what made the audience gasp). While all these scenes of violence were heavilly sanitized as far as blood or seeing the impact on screen, they were all heavily emotionally charged and I am feeling emotional again as I write about them. Those who are sensitive to scenes of violence should be cautious.

On a scale of 0 to 10 as far as the graphic nature of the violence, putting horror films like Hostel or Saw at 10 and Disney’s Snow White and the Seven Dwarves at 1, I would rate Harriet as a 5 on the violence scale. The nature of the violence—knowing that it was a portrayal of actual violence that happened countless times to real human beings who were held in bondage for generations—was much more upsetting than the level of graphic depiction the director chose to portray. The emotional intensity of the violence, knowing it depicts something very real and horrific, makes the emotional violence of Harriet off the chart—far past 11.

Overall Impressions


The aspect of this film that will most likely be the hardest for neurodivergent viewers is the heavy emotional content. I felt like the director had an even hand, and did not pile on the emotional cues or pump up the sentiment, but Harriet is a story where that is unnecessary. If anything, the emotional content was downplayed as much as a director could while still telling the story.

Any honest story about slavery will be emotionally difficult to watch. Families are torn apart, people’s lives are completely controlled with no opportunity for personal choice, babies are taken away from mothers, human lives are discussed as if they were little more than cattle—perhaps less valuable than cattle, even. People are beaten and killed. Laws are passed to increase the level of criminality of simply existing, let alone being born into slavery.

Harriet is an important story and the director has done everything possible to make the story accessible to emotionally sensitive people, but it made me cry and I suspect many other viewers were shedding tears as well. Come prepared to feel deeply emotionally moved, and take care of yourself if that’s a triggering condition for you.

With these caveats in place, I highly recommend the film Harriet. I have known the basics of Harriet Tubman’s story since I was a small child, but still learned much about her life and her grave importance to U.S. History. Harriet is a moving film and a satisfying one. Finally, one of the most famous women of the Civil War Era has a film celebrating her life and accomplishments and we are all richer for the opportunity to watch it, reflect upon it and learn from it.

Thursday, November 7, 2019

Ehlers-Danlos Syndrome: An Autistic Autism Researcher's Insights

Dr. Emily Casanova 
[image: Black-and-white headshot of a white woman
with medium-dark, chin-length waved hair.]
Ehlers-Dahlos syndromes are disorders that affect connective tissues. It is both under-researched, and a common co-occurring condition in autistic people. We wanted to know more about how Ehlers-Danlos gets diagnosed (and overlooked) and the state of the research, so we spoke with autistic autism researcher Dr. Emily Casanova, who presented on this topic at INSAR 2019, the annual meeting of the International Society For Autism Research.

Thinking Person's Guide to Autism: First you can tell us a little bit about you and your work?

Dr. Casanova: My work has two major foci. The first centers around the relationship between Ehlers-Danlos Syndromes (EDS)/hypermobility spectrum disorders (HSD) and autism, trying to tease apart their shared biology so we can better define and understand precisely what these overlapping conditions are. The second branch of my work focuses on the genetics underlying autism. I am particularly interested in the evolutionary patterns of these genes and their functions within prenatal development across species. Many rare genetic variations that are associated with autism occur in developmental genes, which are extremely old and are highly conserved across most species.

TPGA: How is Ehlers-Danlos diagnosed?

Dr. Casanova: EDS and the closely related HSDs are diagnosed primarily through physical assessment and taking patient histories. Genetic testing is also an option, and is currently used to rule out other hereditary connective tissue disorders (HCTD). There are different types of EDS, with the most common form being hypermobile EDS (hEDS). This type of EDS, as well as the related HSDs, are diagnosed using the hEDS Criteria Checklist, which you can find on the Ehlers-Danlos Society website: ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

Generalized joint hypermobility (GJH) (as defined by a score of 5+ for adults under 50 on the Beighton scoring system) is considered a central feature of these diagnoses, as well as chronic musculoskeletal pain and/or instability (see Criteria 1 and 2c). Other features associated with HCTD, such as effects to the skin, the heart, and the skeleton are also observed (Criterion 2a).
Finally, the clinician will note whether any 1st degree family members also meet criteria for hEDS.

These criteria were published in 2017 and are much stricter than previous iterations. The broad HSD category is also a new diagnostic entity that subsumes people with previous diagnoses of Joint Hypermobility Syndrome (JHS) or localized/historical features of hypermobility who have features of musculoskeletal pain/instability but don’t meet full hEDS criteria. Some individuals with a previous diagnosis of hEDS prior to the 2017 criteria change may also now fall under the HSD umbrella.

Although EDS was once considered a rare condition, occurring in about 1:2,500-5,000 people, most clinicians believe that the hEDS type is common, although prevalence estimates are not yet available in part due to the recency of changes in diagnostic criteria.

TPGA: Do you have a sense of how many subtypes of EDS are there, including related conditions like Hypermobility Spectrum Disorder?

Dr. Casanova: Currently, there are 13 recognized types of EDS, although that will probably continue to expand with time and further research. With the exception of hEDS, most forms of EDS have gene associated mutations and are believed to be rare conditions. (“Rare” is typically defined as occurring in no more than 1 in 2,000-3,000 people.) hEDS on the other hand is likely a common condition and there are currently no identified mutations associated with it (although that will probably change in coming years due to ongoing genetics studies).

HSDs are even more common than hEDS. Previous research suggests that generalized HSD (G-HSD), which are people who have GJH and musculoskeletal pain/instability but don’t meet Criteria 2a or 2b in the hEDS Checklist, occur in approximately 2% of the general population. Meanwhile, GJH occurs in about 20% of the population. It’s currently uncertain how many people have what is known as localized hypermobility, which is hypermobility in 1-4 joints but who don’t meet criteria for generalized hypermobility.

TPGA: What are some typical and atypical traits of EDS that people should look out for?

Dr. Casanova: The typical traits of hEDS are GJH, chronic issues with musculoskeletal pain and/or instability, and usually other effects to the connective tissue like soft mildly pliable skin, easy bruising, abdominal hernias, Marfan-like (“Marfanoid”) features such as long arms or fingers, and some mild heart malformations like mitral valve prolapse.

While these are currently considered the core characteristics of EDS/HSD, because connective tissue is in almost all parts of the body, it sometimes seems that there are few symptoms that can’t occur in association with these conditions. So rather than try to list them all here, I highly recommend following the blog, Oh TWIST!, by Jan Groh, which has an incredible wealth of information on EDS/HSD and related conditions: ohtwist.com.

TPGA: Does anyone have good statistics on the percentage of autistic people who also have Ehlers-Danlos?

Dr. Casanova: Unfortunately, there are few studies on this topic. One Swedish study back in 2016 estimated that approximately 3% of those with EDS in Sweden also have an autism diagnosis. However, because hEDS/HSD is predominantly diagnosed in women and autism is notoriously underdiagnosed in females, those are probably underestimates of co-occurrence. I personally suspect we may see as much as 10% overlap, but we are in desperate need of more research to determine whether this is the case.

TPGA: What advice do you have for people who suspect they have EDS but can't get a diagnosis? (Besides venting on #DoctorsAreDickheads.) Why is it so hard to get a diagnosis for so many people?

Dr. Casanova: Circumstances are complicated. Many doctors are either unaware, untrained, or—worse—misinformed about what EDS/HSD is and how it presents. If a genetics center is available and taking referrals, that is often the best place to seek an assessment. Geneticists are usually very experienced in identifying and measuring physical malformations (e.g., hypermobility), as well as offering genetics services for those interested. However, any EDS-experienced clinician should be capable of performing an assessment.

Some genetics centers have unfortunately stopped accepting referrals for hEDS/HSD for two primary reasons: 1) because hEDS/HSD are common conditions (in contrast to the usual rare conditions that most geneticists see), these centers are being overrun with referrals, spreading resources thin; 2) because we have yet to identify rare mutations consistently in this population, geneticists often feel like there’s not much they can do, aside from perform a physical assessment and take a history.

Unfortunately, there are also those instances in which age-old prejudices that center around female-dominated conditions like EDS/HSD also play a role, leading to dismissal of patients’ concerns or, worse still, outright patient abuse. For a population that comes into frequent contact with the medical establishment due to complex ongoing physical problems, sadly there are few patients who have not experienced these unfortunate and painful events, leading to higher rates of medically-induced posttraumatic stress disorder (PTSD) in this population. Finding a supportive physician is therefore of paramount importance for those with EDS/HSD.

TPGA: What about BAPpy folks (Broad Autism Phenotype with a sub-clinical set of autistic traits)? Do they have a tendency towards EDS as well, as yet another one of those shared traits?

Dr. Casanova: There do seem to be a lot of BAP folks on the EDS/HSD spectrum. I’m not sure how often BAP individuals present with EDS/HSD symptoms, but I’d assume a portion of them do. We’re hoping in future to at least get an estimate of the frequency of BAP in EDS/HSD.

TPGA: Are you aware of any approaches like diet or exercise that can help improve the quality of life for people with EDS?

Dr. Casanova: A good book on physical therapy and exercise specifically for those with EDS/HSD is Living Life to the Fullest with Ehlers-Danlos Syndrome. Diet also can be a tricky issue for many with EDS/HSD because, with comorbid mast cell activation syndrome (MCAS), there’s considerable variability in how individuals react to different foods. Some people try a low histamine diet, others do a trial by error diet. For those who can handle it without GI side effects, I’m personally a firm believer in consumption of amino acids, such as things like bone broth.

Since in hEDS/HSD we seem to experience chronic inflammation and probably rapid turnover of connective tissues, it’s a good idea to supplement the diet so that the body has ample supply for repair. Antioxidants are also probably another helpful supplement, although be cautious about overdosing, but they are also important for cell repair. But most importantly, if the individual is experiencing gastrointestinal problems, an elimination diet may be helpful to determine if any particular food products are triggering reactions. However, not all GI issues are solely the result of an immune reaction but may be due to autonomic disorders associated with EDS/HSD, especially in the case of constipation and gastroparesis (slow emptying of the stomach), etc.

TPGA: Any other advice you'd want to give people who have EDS, from a personal or research perspective?

Dr. Casanova: If you have a current diagnosis of hEDS (based on the 2017 criteria), I highly recommend trying to enroll in the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study, which is a genetics study aiming to identify rare genetic variations that may occur in some people with hEDS. I’m not personally involved in this study, but the importance of this can’t be underestimated as this will help us better understand the biology(ies) of this common complex condition, how it may overlap with other hereditary connective tissue disorders, and hopefully how to better treat it and improve the quality of life for those on the hEDS spectrum.

Thursday, October 31, 2019

Book Review: Communication Alternatives In Autism

Book cover with a background that is blue on the left and yellow on the right. A red bar in the upper center contains white text reading, "Communication Alternatives in Autism," followed by smaller yellow text reading, "Perspectives on Typing and Spelling  Approaches for the Nonspeaking." Below, two hands hold a white tablet device with a keyboard visible and white text on black reading, "Hello my name is ..." Below, red text reads, "Edited by Edlyn Vallejo Peña"
[Image: Book cover with a background that is blue on
the left and yellow on the right. A red bar in the upper
center contains white text reading, "Communication
Alternatives in Autism," followed by smaller yellow
text reading, "Perspectives on Typing and Spelling
Approaches for the Nonspeaking." Below, two hands
hold a white tablet device with a keyboard visible and
white text on black reading, "Hello my name is ..."
Below, red text reads, "Edited by Edlyn Vallejo Peña"]
Communication Alternatives in Autism contains the perspectives of ten autistic self-advocates, who "share their experiences with alternative forms of communication. Their narratives document the complexities that autistic individuals navigate—in both educational and community settings—when choosing to use approaches that utilize letter boards and keyboards."

Review by Olympia Eleni Ellinas

Autistic children and adults, around the world, are being treated as if they aren’t humans, as if they aren't capable of sentient thought. This is highly disconcerting, and I feel a need to aid change. Whilst reading this book, I felt relief at the end of each essay; the individuals ascertained a status of fair treatment and respect from others. The general theme of each person suffering intensely at first due to misunderstanding and discrimination, reminds me all too well that this is endemic: I hope that by reading this book, the general public and educators will realise that standardised testing rarely assesses autistic strengths properly.

The thing that strikes me the most is how all the autistics in Communication Alternatives in Autism so greatly strive for a high-quality education compared to many youths these days who dislike school and try hard to skip classes. The autistics in this book are representative of the general population of autistics in my experience, as I personally know many autistics who have passionate interests in certain areas and will pursue and acquire large volumes of information about them.

"Not talking is not the same as not thinking," says one of the authors,  Ido Kedar, [p. 69], and this is a common theme in this book. Just because one cannot speak, it doesn’t mean that one cannot possess thought, including abstract and independent thought. It does not mean one cannot learn. Yet Applied Behavioural Analysis (ABA) ‘therapy’ (in inverted commas because it is rather a form of torture!) is used on autistic children to basically ‘train’ them “like a pet,” says Philip Reyes [p. 154] and does not encourage independent thought, which is one reason much of the autistic community strongly disagrees with the practice.

In this book, I see examples of how ABA has been used on the authors, who have described it as no less than a living torture. One author, Amy Sequenzia, states that she was forced into ABA to ‘fix’ her, by people who discouraged use of Facilitated Communication (FC). Who think that any method for autistics to eloquently communicate is an anathema, who believe autistics are not people. Amy was placed in institutions. “Institutionalised ‘care’ is about non-disabled people celebrating their perceived superiority over us, the ‘not-quite-humans,’ while making us feel exactly like that: sub-humans” says Amy Sequenzia [p. 65]—this is a very Lovaas-influenced and extremely damaging concept. But, like the other authors, Amy’s life improves.

Criticism about FC are worth noting, but so is the fact that one cannot just expect an autistic child to suddenly walk to an iPad and start typing, when they do not have the motor skills. We need to initially assist them in typing. Initial assistance is even more important when autistic people have co-occurring conditions such as hypotonia and severe apraxia. An important point is made that FC often leads to independent use of a letter board or keyboard. Tracy Thresher [p. 44] states that he needed his hand supported whilst using FC, otherwise his hand types echolalic words and phrases. Many professionals against FC do not understand this, or the common theme in the way that FC trainers teach people like this book’s authors: those trainers know that autistics can learn. This is vital.

The editor of the book, Edlyn Vallejo Peña, is also the mother of another author, Diego. She had a drive to give Diego the communication choices he is happiest with. This is logical. Too many parents let preconceived judgements take over and refuse to acknowledge that their child is already trying to communicate, before they have a chance to formally communicate. Or they force one very limited style of communication, even if it doesn’t work. Children that use very basic communication tools often grow into adults using the same basic tools. Adults need far more choices than ‘I want a drink.’ And it is my belief that Augmentative and Alternative Communication (AAC) training that focuses solely on basic requesting and simple sentences is frankly abusive.

The essays in Communication Alternatives in Autism show how eloquent and descriptive many autistics can be when they are given the opportunity to learn to type their words out. Philip Reyes’s mother's persistence in obtaining the best communication method for him is key. Autistics, quoting author Samuel Capozzi, “have an incredible propensity for language and communication once given a reliable means to communicate” [p. 97]. Samuel’s speed in progressing, once he was ALLOWED to pass communication onto people, reflects well on the potential of autistics. Many autistics are a huge potential source of intellect waiting to be utilised. However, wisely, Samuel says “this list is not to boast, instead it’s a list to demonstrate potential” [p. 101]. We shouldn’t model him as a protagonist who’s elevated above the rest, many autistics out there have this type of potential, we just need accommodations.

Too often when autistics have very limited, or unreliable, speech, people think that that is all they have. Nope. Everyone is capable of communicating, plus this book shows that many autistics can have potent skills. Sadly, standardised tests do not consider the skills and competency of autistics with minimal speech and apraxic motor skills (the ‘mind-body disconnect’ [p. 107]). Testing labels such autistics as learning disabled (having intellectual disability), even when that is not the case.
“I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty and the pursuit of happiness” Ido Kedar, [p. 34] 
This quote really struck me. Autistics are often deprived of consistent forms of communication, and often treated with powerfully sedating medications because of “behaviour,” which can actually be frustration at not being able to communicate, and/or apraxic motor skills deficits. Apraxia can turn meaningful intentions into disorganised and chaotic involuntary movements. It does not reflect on the person’s capability or worth. In Ido’s essay, he clearly shows frustration at not having his innate abilities respected; it would be horrific if he were treated as if he lacked those abilities, for his entire life. Perhaps the diagnostic evaluations for communication disabilities should be redesigned?

While there is nothing wrong with having a learning or intellectual disability, sometimes people mistake apraxia or sensory processing differences for  those conditions. “[I]t is not a cognitive issue for me instead it is a motor issue” [Samuel Capozzi, p103]. I also experience this, I have a degree in pharmacology, but my behaviour often resembles that of a person with a learning disability, resulting in many incorrect assumptions. Another of the authors, Dillan, describes this eloquently: “I am sorry you don’t get to experience autism, but I am happy that you do not have to deal with being made to think something is so wrong with you that you should not ever think that you deserve more out of life” [p. 107]. This is the truth of autism. It can have many benefits. The disadvantages are often placed upon us by a loud and cruel world.

Apraxia is something I also have. It causes me to be quite wild and crazy in my movements and actions, much like author Larry Bissonnette, who after finding a communication avenue writes, “It was Larry the artist now rather than Larry the wild and crazy autistic guy” [p. 57].  Sadly, I have been denied the help I need to integrate my sensory and motor systems. Similarly, Emma Zurcher Long describes herself as laughing out loud when someone is sad, which leads to people thinking she has no empathy. This is not the case. She feels empathy very strongly, and she emotively describes this. But we autistics may appear to have inappropriate emotions in response to emotive situations, because apraxia can cause us to not act in a way we intend to. But we relate to emotions. We feel them.

Author Samuel says that his speech is full of “blurts” [p. 98]. I experience these too, the frustration that I have from not saying what I actually want to say is great, and often my speech just switches off from the exhaustion of it. Author Henry Frost’s section, called “Autistic Freedom,” made me think about my situation. I so strongly want to use AAC when I require it, but I still receive discrimination from healthcare staff and others. I end up experiencing my own “blurts,” which end up as derailing, highly pressured speech, not useful, and can be plain annoying to everyone.

A recurring theme in this book is institutionalisation. “Institutionalised ‘care’ is about non-disabled people celebrating their perceived superiority over us, the ‘not-quite-humans,’ while making us feel exactly like that: sub-humans,” says Amy Sequenzia, [p. 65]. And Larry was trapped in an institutionalised, low expectations life, and only breaks free later in his childhood. His story reminds me of the way I got out of being a revolving-door patient in psychiatric institutions, being misunderstood and mislabelled. The term ‘low-functioning’ used to describe so many autistics like Larry is an example of how useless and abusive that term is. Larry discovers his talent in the arts, and he makes a career out of it. Low-functioning, did you say? Functioning labels are a moot point, as Samuel describes on p. 94.

The harsh reality of a world that won’t consider the intricacies of autism is stated: “I was doomed to remain trapped,” said Dillan Barmache [p.108]. Professionals just see the outer layer of autism. Dillan emotively describes the psychological pain he felt when he was misunderstood, and measured solely by his apraxia and not his true capabilities. The theme in these essays comes to show that ‘thinking outside the box’ works, whenever an educator sees beyond the apraxia, when behaviour is not always communication.

As an aside, I enjoyed author Henry’s classification of ableists, and his point on how special education classes too often disserve all students: “teachers’ attitudes affect performance” [p.129]. Teachers who do not want to acknowledge a pupil’s abilities will only hinder them. Special education classes too often do not challenge pupils. Amy [p. 62] states, “[t]here wasn’t any learning” in her special education classes, but that she had the “expectation was that [she] reacted to any event, changes or demands in a non-disabled way.” I personally am thankful that my parents refused to ever have me in inappropriate classes and placed me in a private gifted education primary school, after I had been expelled twice. I flourished in my school. If I had been forced to endure inappropriate education merely because my behaviour was problematic, I wouldn’t be alive today as the failure of the system would be unbearable.

Ido [p. 80] describes how professionals who organise special education programmes and ABA training often have most things about teaching students like him all wrong. And if this is realised, these professionals then clash with the parents and the child. Ido [p. 87-91] outlines advice to educators and parents, showing that he himself is a good educator. Perhaps autistics should educate the professionals?

Henry states “the best early intervention for them as parents would have been meeting and learning from disabled people” [p. 128]. Only disabled people can say what disability feels like. An essential concept needs to be taught to all educators: “[o]nly a person by your side who has total faith and confidence in your having thoughts that are intelligent even when you are out of control will you ever have any hope to be able to handle all the challenges that really never stop happening” [Dillan Barmache, p.113].

Dillan also has a section, “The Guide to Reaching Your Students” [p.117-121], which gives logical and compassionate advice to all educators of nonspeaking autistics. About the state of special education, he states, “it’s not early education, it’s early torture!” [p. 119]. Seeing the autistic as a person with feelings and thoughts, not just a set of deficits, is what is needed. “No kid should ever grow up feeling that they or their neurology are their problems” [Henry Frost, p. 126].

I grew up thinking that I was broken, a set of faulty goods. But now that I am surrounded by friends and helpful family members, I am building up self-confidence. Emma’s private non-special schooling is what should be more common. Philip’s experience of meltdowns when first going to mainstream education is pretty much universal for autistics. It reminds me of when I was having meltdowns in my Montessori nursery school because it was noisy and lacked structure. I struggled to learn there. Like Philip, I resented the condescending way that so many people talk to apraxic autistics; I detested being talked down to in simple terms as a child; I felt relief when I was talked to like an adult.

One must not neglect accommodations in mainstream education for autistics, so a theme in this book is integrating autistics into mainstream education. But, Henry says, “accommodations are not optional for access” [p. 130]. Here in England, the Equality Act and the Autism Act are supposed to enforce ‘reasonable adjustments’ (i.e. accommodations). Yet even now, in 2019, accommodations are often not made for disabled people, in education and employment. Then people’s capabilities are being failed by the system, particularly in special education, which also often expects the pupils to fail. This is why Rapid Prompting Method trainers can be a relief, as they expect their students to be capable.

“No one expected me to fail. They thought I was intelligent, ” says author Rhema Russell [p.168]; . Rhema’s voice is being heard all around the world, she has a gift of getting the message across in quite exquisite language. She also makes a point about repetition not being helpful for many autistics. Many of us get it the first time. I take in everything, there is no filter for me. Yet in my second school, I had things repeated to me often. I didn’t need that.

The book also stresses that inclusion is important, but, as Larry states, we autistics need more than inclusion as mere politically-correctness. We need to be with peers and be a part of their lives, and have friends, just like any other person. Real inclusion means being treated the same, and not exaggerating differences. We need to end the segregation of autistics; it is grossly damaging and it teaches the falsity that autistics are not good for the mainstream world. As to why so many people cannot see that “inclusion is including all learners” [Henry Frost, p. 132], I do not understand. UK schools could learn a lot from the inclusive arrangements in America. (As an example, out of 700 girls at my secondary school, when I was in year 10, I was the only autistic pupil.)

The sensory world of autism is also emphasized in this book. The way that Emma [p.130-131] processes sounds is something I have read about before in a book called The Neurobiology of Autism (2nd edition). When I hear speech, with a moderate amount of background noise, I will hear the words as a series of syllables; I must manually add up those syllables in my mind, to form the words (Emma’s mind “hears all sounds equally and does not discriminate” [p. 150], a common auditory processing disorder phenomenon).

I relate to Emma to a high degree and have watched some of her YouTube videos. She also has an expansive sensory memory: she says “My brain doesn’t think in words the way most people’s do” [Emma Zurcher Long, p. 149], and, “I wonder if I am too aware of my surroundings” [Zurcher Long, p. 148]. I can confidently say that such a memory is almost the rule in autism. I know someone with a full sensory eidetic (photographic) memory, and I myself think cinematographically; my brain never switches off whilst I am awake, and even my dreams are full sensory.

Emma is sensory seeking, especially to music, like me. She does not just love her music, she needs her music. Similarly, Rhema states that “[n]umbers each have their own notes that make a beautiful song” [p. 166]; this is synaesthesia, which is common in autistics. Autistics are often diagnosed as also having ADD/ADHD, but I believe it is in fact the sensory hyper-alertness that comes with autism, that distracts.

This book is a good start in demolishing old beliefs about autism. This is appropriate. I am writing a textbook on the neurobiology of autism and I hope to do this too. Autistics, like the authors here, given the opportunity, are fierce advocates. Communication is a human right. Autistics have been through so much misunderstanding, so much torture. It is vital that people listen to us about our lives.

Monday, October 28, 2019

What Is Sensory Processing Like For Autistic People?

Sensory Overload
Photo: Sensory Overload by Jamie Grant | Flickr / Creative Commons
[image: High color contrast photo of a light burst, seen from through a
car windshield from the perspective of a rear seat.]

Reid Caplan

Have you ever had a conversation like this:
Autistic person: "I need to leave because the lights here are too bright." 
Non-autistic person: "But it's not bright in here at all!"
Many autistic people have had this conversation, or one like it. We might notice things like sound or light in a different way than others. That's because most autistic people have different sensory processing than non-autistic people.

Sensory processing is how your brain thinks about and reacts to your senses. When we think about our senses, we usually think about the five main senses: sight, sound, smell, taste, and touch. But there are other senses, too, like hunger, thirst, temperature, and pain.

Everyone processes their senses in different ways. But autistic people are more likely to have big differences in our sensory processing. Many autistic people feel certain senses too strongly. Feeling like lights are too bright, like we talked about earlier, is one thing a lot of autistic people experience.

We may also be sensitive to loud noises, or how our clothing feels on our body. We may not be able to eat some foods that taste too strong, or have certain textures. We might not be able to stay in a room that is too hot.

Autistic people might also feel certain senses more weakly than other people. For instance, we might not realize that we are hungry or thirsty. We may not feel pain as strongly as other people do. This can also mean that we might love really spicy foods or strong smells that other people can’t handle, because otherwise we cannot taste those foods or smell those smells.

Our sensory processing can also change over time. We might feel a certain sense really strongly one day, and not notice it the next. We might love how a shirt feels now, then not be able to deal with the texture of the fabric later.

Sometimes, our senses overwhelm us. This is called sensory overload. It may make us so upset that we have a meltdown. Our sensory differences can be a good thing. We might get comfort out of a certain smell or taste. Stimming—like rocking, flapping, or playing with a fidget toy—can help us control our senses and feel happy. We might notice things that other people miss.

Sensory processing differences are a big part of being autistic. But non-autistic people don’t talk about sensory processing very much when they talk about autism. Non-autistic people usually focus more on how we behave than on what we’re feeling. They might care more about making us behave differently, instead of trying to understand why we act the way that we do.

A lot of autism therapies try and make autistic people look and act “normal.” These therapies don’t make our sensory differences go away. But they make us feel like we need to hide them. They tell us that the way we process our senses isn’t “normal.” They tell us that when we behave differently because of our sensory processing, that we need to act “normal” instead.

Think about the example of an autistic person who feels like a light is too bright. A non-autistic person might think the light isn’t bright. They don’t have the same sensory processing experience as the autistic person. So they try and say that what the autistic person is feeling isn’t true. But telling the autistic person “the light isn’t bright!” doesn’t help them. It won’t make the light feel less bright. It just makes the autistic person feel like they need to stop talking about it.

An example of someone being told their perception about lights is incorrect.
[image: Captain Picard from Star Trek: The Next Generation yelling what is
written in white all-caps text: "There are... four lights!!!"]
When someone tells us that our sensory processing isn’t “normal,” it shows us that they care more about their own experience than the fact that something is hurting us. And when someone only focuses on their own experience, they are less likely to help us when we have trouble with sensory processing. Instead of trying to make us “normal,” people should accept that we are autistic. They shouldn’t try to change who we are, or how we process our senses.

It’s also important to think about this when we have meltdowns. We can’t control when we experience sensory overload. It does not help to blame or punish us when we get overwhelmed. Giving us space and showing you care about our feelings is the best way to help.

Just because we can’t change how we process our senses, doesn’t mean people can’t help us when we have trouble. There are lots of ways people can help us when we have problems with sensory processing. If it’s too bright, you can turn off the lights. You can take us somewhere darker to take a break. You could give us sunglasses. Just asking how you can help is a big deal!

Autistic people get help with our sensory processing differences every day. We might get help at school or work to be able to do our best job. Our family and friends might help us make our home more comfortable for our senses. We can learn ways to help ourselves, too. We might start carrying sunglasses with us if lights are hard for us. Then, we can put them on whenever it gets too bright.

Autistic people process our senses differently, and that’s okay! Autism makes us who we are, and sensory processing is an important part of being autistic. People should try and understand autism and how it makes us different, instead of trying to change us.

Friday, October 25, 2019

Autistic Joy as An Act of Resistance

Jennifer White-Johnson
jenwhitejohnson.com

I was recently asked how I came to understand and appreciate my son's expressions of Autistic Joy. How is joy usually characterized? The absence of sadness? Unbridled gladness  and glee? That is Knox, every. single. day. He emanates a spark and a joy that always reminds me that life is worth living, that waking up in the morning can and should have purpose. That taking the time to capture that radiance can be a light, showing how Knox interacts with happiness itself when surrounded by the heaviness of this world. For the past seven years I have used my camera to capture Knox's story as he chooses to tell it—through his interactions, his spinning, his soulfulness, and yes, his unbridled joy.

Photo © Jennifer White-Johnson
[image: Smiling young Black boy, with arms raised and
eyes closed, inside a cloud of rainbow-shimmery bubbles.]
Sharing visual narratives of my son’s Autistic Joy has allowed me to highlight what I often didn’t see depicted in the media. When Knox was diagnosed as Autistic at three years old, our community was supportive, but the common expectation after a diagnosis is instant behavioral intervention and treatment. The common expectations from Black and Brown parents is that you keep your Autistic kids in line. Keep them steady, not letting them waiver in fear of what they may face as they grow. Families of color are often forced into silos, not knowing where to turn next, afraid of unjust stigmas sometimes coming from within their own communities.


The depiction and representation of #AutisticJoy and especially #AutisticBlackJoy in media has been slim, often overshadowed by the same predominate white narratives. Autistic communities of color aren’t always given the consistent equitable freedom or space in media, printed or electronic. I spent time trying to find and connect to viable Autistic Community celebrating Autistic lives of color in my state, and didn’t find many. I realized I had to reclaim the narrative and begin sharing through my art making space for dialogue and engagement. 


Photo © Jennifer White-Johnson
[image: Photo of an ecstatic Black toddler boy chasing bubbles.]
I finally began to find it when connecting with other Neurodivergent families of color and Autistic adults. Reading, listening, watching Autistic adults practicing self advocacy within their communities and platforms. I knew Knox’s self advocacy was exemplified through his joy as a true act of resistance.

Not long ago I encountered a few people who tried to challenge the validity of Knox’s joy: I posted and shared a video for an Autistic dancer, friend and activist of color, and in the video Knox was shown spinning, stimming, and dancing during his birthday week. A few questioned how his joy can be seen as a form of self advocacy.

Why anyone would want to stifle an Autistic kid’s joy? The Autistic community immediately came to my rescue showing Autistic Joy at its finest!


Photo © Jennifer White-Johnson
[Image: Overhead photo of a young Black boy with magnetic plastic
letters and Lego trains, on a train track play mat. Next to him is a
magnetic whiteboard with letters spelling, "RESist Hate".]
The importance of showing Knox's joy increases the visibility in the lives of Autistic children of color. Moments that show the world that being Autistic isn't something to be ashamed of, it is beautiful, luminous and shows that being joyful shouldn’t be masked. It is a natural and valuable form of human diversity. Equipping Knox with an endless and unconditional amount of love is what carries him through each day. We see kids and adults of color being attacked everyday for just living their lives. Acceptance and support is what encourages Autistic kids like Knox to advocate for themselves. This joy cannot and will not be robbed from Autistic kids of color. 


Often the Neurodiverse community are excluded from artistic narratives and creative spaces, thus we gladly create our own, taking ownership of our stories and telling them how we choose to tell them. Unfiltered and honest. My role as a mom is to help my Autistic son embrace his playfulness, as I continue to embrace mine. As a black and brown mom I want to focus on the joy of my kid’s beautifully Autistic self. Amplifying that JOY is what can unite us, breaking the cycle of assimilation, breaking the cycle of unjust stigmas, and infusing the narrative of soul in the lives of Autistic kids and adults! 


We instill in Knox that every unique aspect of who he is beautiful. Using joy and creativity to create the framework setting our own tone for Autism Acceptance. There is heart and soul in the journey that breaks through the stigma of highlighting #AutisticJoy in Black & Brown lives. It is up to artists and designers to use our tools to further the narrative of Autism Acceptance and its visibility in the lives of people of color! The conversation must continue, the path must be set, making space for those who choose to honor the beauty and the soul of Autistic Joy.

Tuesday, October 22, 2019

OK, So We have AAC: Now What?

Photo courtesy Miss A
[image: An iPad screen with the app Speak for Yourself,
and a list of animals in the message bar:
banana, cookie, cat, dog..."]
Miss A
teachingunicorn.com

Access to AAC—Augmentative and Alternative Communication for people with speech disabilities—is a fundamental human right, but it’s one still that tends to be forgotten and overlooked in many spaces today. And many people are just hearing about AAC, or gaining access to it for the first time.

The first few steps in using AAC can feel overwhelming to families and professionals new to this journey, because it is essentially learning a new language. Many people have fears about “doing it right” and “doing it enough.” I promise that you can do AAC. You can do it. You must do it. And it will be worth every step. How?

Get excited. It can be really easy for AAC to be seen as a chore or “another thing to do.” It can seem like that to families, to professionals, and to AAC users themselves—especially when drilling methods are used to teach its use. It’s really important for all of us that we don’t associate AAC with “work.” We need to stop seeing on AAC as a way to drill our students on all the things they already have a way to say. We need to see AAC as a tool that allows our students to express all the other things they have to say.

This isn’t to say that learning a new language isn’t hard (it is) or that magic moments happen will every single day. You will be learning to read and to write and to speak a new language, and all of these things can be challenging at times. But they are all things we see as worth it, because of the long-term benefits. We find the joy in all of the moments along the way. The first time our child spells a word by themselves, the first time they “read” their favorite memorized picture book, the first novel we pick out. AAC is like that. Sometimes easy, sometimes hard, and always worth it.

Make sure the system is available. This is the first thing I always tell families or new teachers to do. Spend the first few weeks getting into the habit of always having the system. Problem-solve what you need to make it happen, whether it’s straps, a Post-it note on the door, a different case, etc. Assign staff members who get systems out of backpacks. Figure out a plan and space for charging if your AAC is high-tech, like an iPad or a dedicated device. This shows your student that you truly value their AAC system, that you believe in its importance, and that you want to hear what they have to say. It’s also really hard to model on or use an AAC system if it’s not there.

Assume intentionality. Please, please, please, please, whatever you do, please never say “I don’t think they meant it” in front of a student. I wish you wouldn’t even think it, but please don’t say it. Always respond as if your student meant it.

There is no harm in this assumption, but there is so much harm in telling kids’ that you do not believe their words. If you don’t understand, be honest. Ask. “I don’t understand what you mean, can you try telling me another way?” or “Hmm, I have to think about that, can you tell me more?” These are not hard things to say.

Encourage exploration. Treat a talker like a voice. Do not take it away. Do not remove it or block it. Do not put it on the teacher’s desk to be used later or when it’s appropriate. You cannot do this with speech, and so you cannot do this with a talker. Exploration is wonderful. Exploration is learning. Exploration is ownership.

There are a million reasons for children to babble and stim and enjoy their systems. They could be learning the locations of words—how else will they find them, especially if they are not yet reading and spelling? They could be playing with sound and exploring words and language, just as young ones do when first learning how their mouths can make different shapes and noises. They could be engaging in self-talk. They could just be having fun with sound, and that’s fine too. They have a right to autonomy with their AAC systems, the same autonomy that they would have with their speech, the same autonomy they should have with their bodies.

Familiarize yourself with the language system. Adults often complain about not being able to find words or finding systems not intuitive. I’ve found the hands-down best solution is to explore the system. Find a picture book and comment on all of the pages—with the AAC system. Watch a favorite TV show or movie, one where you know all the best parts already, and do the same. Think about words you might want to use on a daily basis—search for them. It truly comes down to practice. There’s a reason so many adults tend to prefer the system they know the best!

Once you’re familiar with it, it becomes easy. If you don’t have access to the system itself, see if you can get access to a low-tech version, watch videos of people using it online. Give yourself time and grace to learn something new, but keep learning it.

Model, model, model. And then—start modeling. Modeling is a fancy word for saying “talk with the talker.” Don’t overthink it. When you talk, highlight one or two of the words you say on the talker. If you’re wondering what your child could be thinking, highlight one or two possibilities on the talker (“I wonder if you’re tired? Sad?”) Start with modeling just a couple words or modeling at meals or spending some 1:1 time with your student’s AAC system and their favorite toy.

Yes, you can start that small. Yes, you can start by modeling 3-4 words as the opportunity arises during the day. Yes, you can start modeling by talking all about food and drink and favorite TV shows, or other likes or dislikes at the dinner table. Just don’t make it work for them or for you. Don’t make it “say this right now.”

Think of your goal less about “doing it right” and more about “getting comfortable with AAC.” I’ve seen fear of being wrong all too often lead to no modeling. And I promise some modeling, modeling with mistakes, modeling slowly, all of it is better than no modeling.

Yes, there can be more to AAC. Yes, there are other things to think about, amount of modeling and vocabulary and recasting and probably some other fancy terms. I’m not denying that. But it all starts here. Don’t overwhelm yourself with dozens of articles and stress about doing it right. This is the foundation. This is what everything else is built upon. Make this strong.

Become so reliable about having the device that you feel naked the one time you forget it for five minutes. Get so comfortable with responding and modeling with AAC that your child or student never, never, not for one second, ever doubts how important you see their system and how valued you see their words. Everything else comes later.

----

A version of this article was previously published at teachingunicorn.com

Wednesday, October 16, 2019

How to Plan Events That Prioritize Accessibility

Color Communication Badges by Button Justice League, on Etsy
[Image Description: Three 1.5 inch pinback buttons each with a vivid color,
a bold black word and a black shape underneath the text. From left to right:
a "Red" button with a octagon, a "Yellow" button with a triangle,
and lastly a "Green" button with a circle.] 

Lydia X. Z. Brown

[Note from Lydia: This originally appeared on Twitter as a thread on 4 June 2018, and is an incomplete list of suggestions.]

Some tips on access-centered event/program organizing/planning (some are mine; many I learned from other fabulous folks):

(1) When you put information about the event online, whether on (a) a website, (b) in email announcements, or (c) social media, only include images if you include alt-text and text-only captions.


(2) Don't rely on online/email/social media to get the word out.


Call people too. Many comrades with intellectual disabilities strongly prefer phones, even if they can use the internet and email. (And many can't and/or are actively deprived of access or training.)

(3) Visit any physical location IN-PERSON before confirming it.


If you're not familiar with access, bring comrades who are blind, low-vision, physically disabled, and/or users of mobility aids with you. If you have money, PAY them for this work.

Only host in accessible locations.

(4) If you're planning and able to put any money down, budget for ASL (American Sign Language) interpretation, CDIs (Certified Deaf Interpreters), and CART (Communication Access Real-Time Translation) captioning in advance, from the get-go.


If you don't have access to funds, plan to secure volunteer interpreters/captioners in advance. Like, at least weeks in advance if not more.

(5) Don't put up promotional videos, live videos, or videos afterward, unless they're captioned and transcribed.


For live videos, it's OK to ask community members (ahead of time) to volunteer to live-caption.

(6) Tell people in advance, in writing, out loud, online, any/everywhere, to arrive scent-free. Give pamphlets with pictures if people need help understanding.


Don't ask for it as a preference; enforce it for the health and SAFETY of participants and community members.

(7) 24 hours before an event, check any/all bathrooms, public areas, etc. for artificial fragrance dispensers and REMOVE them.


Day of, bring baking soda so attendees who forgot or ignored message can be scent neutralized by putting some over their clothing.

(8) If your event/program is public, make sure any printed materials are available in LARGE PRINT (at least size 20 font if not larger) and Braille, in advance, even if no one asks about it ahead of time.


(9) Encourage people to use name tags. All of us who are sighted but faceblind (prosopagnosia) will thank you.


Create an (unobtrusive) opportunity to add pronouns to name tags, but don't require it or pressure people to do so.

(10) Consider who is leading and organizing your event/program.


If this is a demonstration and/or rally, are community members most/directly impacted by the issues the ones leading the charge/call to action, or choosing the speakers/slogans/leaflets?

(11) If this is a conference, community education event, or really anything, is your organizing group or speaker lineup all pale, stale, and male?


Similarly, did you just look for a single token person with one or more marginalized identities, but do no relationship-building?

(12) Consider using communication badges (social interaction badges). This system was originally developed by autistic folks and cousins at Autism Network International, alerts others to a person's dis/preference for social interaction with others.


Imperfect but still helpful.

(13) If the event is taking place in a physical space, give information about which entrances have level entrances vs. which don't (and if stairs, how many stairs); public transit access; and parking.


(14) Provide childcare. Plan for this in advance, both in terms of money and/or community volunteers. Advertise this.


(15) Enable opportunities (but not pressure or requirements) for young children to participate/be present in your event/program as well!


(16) If you're providing food, share menus in advance, including ingredients (as much as possible).


Provide phone and/or email for the caterer or community member preparing food so folks can ask about food.

At minimum, try to have GF, dairy-free, vegan, certified kosher, AND meat options.

(17) Day of: Label each food item by ingredients in large print and Braille, with special attention to common allergens.


Make calorie/nutrition information available but not displayed prominently.

(18) Announce in advance, repeatedly, in writing, online, out loud, and during any event/program, NO flash photography AT ALL.


Strictly enforce policy by asking people who can't/won't follow policy to leave.

This is a health and safety issue. Some people with epilepsy could die.

(19) If your program/event costs money to go to, make it sliding-scale or pay-what-you-can on an honor system.


You can tell people how much it would cost to break even (i.e.,  "break-even fee would be $65/person") and then let them decide how much they can afford in advance or at the door.

(20) Remember when ASL and CDI interpreters are present, they are there for benefit of HEARING people, not only d/Deaf, HoH (Hard of Hearing) or DeafBlind people.


If you don't sign, you need and benefit from the interpreters.

(21) If there's talking, as in a meeting or a big public rally, have only one person talk at a time. Otherwise interpreters can't keep up. Deaf/HoH/DeafBlind people can't keep up. People with auditory processing disabilities can't keep up.


(22) Use the microphone. It's an access issue.


Don't just assume you don't need one because you can project. I can project VERY well. I still need to use the microphone unless everyone in a space explicitly states they do not need or want it.

(23) If you have sound equipment, check, test and configure it BEFORE the event to make sure there is as close to zero chance of accidental microphone/speaker feedback as possible.


Please don't unnecessarily send autistic community members into meltdowns.

(24) If this is a whole giant conference or retreat or summer program, etc., don't follow these tips for the disability session/strand only.


These tips apply to your WHOLE event/program. Disabled community members deserve to have meaningful access to all parts of your thing.

(25) If you make videos/audio available online after the event/program, don't do so UNTIL you can release the captions and transcript.


Deaf and Disabled folks have to wait all the time for delayed and/or denied access.

We promise your abled community members can wait too.

(26) If this is a protest, demonstration, rally, or direct action, tell EVERYONE participating the plan IN ADVANCE.


You can maintain operational security and also not put multiply marginalized community members at unnecessary risk.

Examples following:

  • Tell folks if it's going to be an arrest action. Give option for folks who can't risk arrest but want to be physically present.
  • Tell folks how much walking will be involved, in distances, not minutes or time estimates. (Scout out the route in advance for accessibility.)

(27) Remember when people disappear and/or go missing that oppression often works by enforcing isolation.


Be extremely wary of snitchjacketing as a tactic used to sow distrust and break up organizing.

If concerned about a specific person without evidence, you can be careful without excluding them.

(28) Whether it's a march or a conference, TAKE BREAKS. (At least 10-15 minutes every hour, and at least 30 minutes every 2 hours.)


Plan for those breaks.

Have water and other liquids available.

Don't claim to be accessible, because you'll almost certainly miss something (so will everyone).


But you can be specific:
  • Fragrance free
  • No flash photography
  • Level access to all conference space
  • ASL interpretation
  • CART captioning
  • Contact X for further access requests
And you can include a statement that you are striving to be access-centered in your organizing so that all Deaf and Disabled community members can participate in every way.