⭐️ Special Edition: Social Injustice

A MESSAGE FROM THE DEAN OF GSAPP

As I reflect on my role as Dean of GSAPP, the word that comes to mind is ‘belonging.’ This need to belong . . . it is a common human experience. When we first meet someone, we ask a series of questions such as “Where are you from,?”“What do you do,?” “Where did you go to school,?” and so on. What is the purpose of these questions, and why do we want to know this information?

By asking these questions, we are simply trying to figure out “Where and to whom do you belong?” Belonging is arguably the most sought-after human experience. We all belong to our families, friends, social networks, work communities, clubs, etc. As humans, we are the only species that cannot survive on its own; we are designed for relationships. But what happens when we feel we don’t belong or when others see us as not belonging?

On a personal note, my son struggled throughout his primary and secondary school years to feel a sense of belonging amongst his peers. He experienced difficulty making friends, was often alienated, and spent most of his time socially isolated. Eventually, we found a specialized high school, and I recall our first day; I was concerned he would not want to attend, because his disability is not as visible as many of the others who attended the school. He was starting the 10th grade, and I recall my relief when we walked through those doors. I could see he felt he belonged…finally, he had friends; he had found his place.

This sense of belonging or ‘coming home’ to a community of people who understand and care, is deeply transformative. It is this sense of needing to belong that has shaped the most pivotal times in the history of humanity. It led Dr. Martin Luther King, Jr., Mandela, Gandhi, and other humanitarians to fight in their own way, for a more inclusive world for all people. Similarly, those who support individuals touched by autism spectrum disorder strive to ensure that ‘all humanity belongs.’

In these turbulent times, consistent but amplified, racial and social injustices continue to plague our country. We all need to work every day for a world that is more inclusive and better for its diversity. Diversity must include equity for those who are historically marginalized and/or less able to advocate for themselves.

When I came to GSAPP, I saw a community with great strength that could be stronger together. A community I wanted to be a part of. Since then, I adopted the mantra of “One GSAPP," because we are all integral to the success of our academic programs, centers, and the entire Rutgers community.

We all belong here.

May this new season strengthen our spirit of togetherness.

Warmly,

Francine Conway, PhD

Dean and Distinguished Professor, GSAPP

THE UNSPOKEN,

UNDERSERVED COMMUNITY

Leslie Calabrese, MA, BCBA

Instructor of Professional Practice, Graduate School of Education

Training Coordinator, DDDC

Being a Black child on the autism spectrum is an intersectionality that sadly sets the stage for being overlooked in our public school system, and, in society, for that matter. Our most vulnerable population (on multiple levels), who need the most support, oftentimes find themselves receiving much less than that. The pandemic has made it clear there is a great divide when it comes to underserved communities. The discrepancies they encountered when trying to access their education in a digital world became too hard to ignore.

Access to technology, support for parent training, and misaligned Individualized Education Program (IEP) goals are the three most alarming areas of neglect; these should be built into a brick and mortar program well before remote learning becomes mandatory. Access to technology is imperative, especially when it becomes the sole way to be educated. It no longer remains a luxury for the privileged. Packets and handouts are no substitute for face-to-face learning, and, sadly, many of our students in underserved areas were subjected to just that, grade level packets that were not individualized or modified for the student’s personal educational goals. Technology should be afforded to all students at the onset of their learning journey, not only to enhance brick and mortar learning, but to broaden the education to homes even when remote learning is not in play.

This brings me to the next point of parent training: teaching students with ASD cannot be in a vacuum. Parent training needs to be readily available and accessible to parents on a regular basis. This could easily occur if school districts upped their one-to-one technology pairings and trained parents in their own languages in the comfort of their own homes - no need for in-school gatherings any more. Parent training is the way we can teach our students full circle, and technology is the key.

Along with the importance of technology and parent training comes IEP goals. If remote learning taught us anything, it is that IEP goals must be relevant to the learner and not just to progress in academic settings. Parents had a hard time working on goals, because they are written with the classroom in mind. Goals for learning need to be written with life in mind. Once goals align with success in life, we know we are headed in the right direction. Autistic learners in underserved communities need support that serves them, not support that the district decides is good enough. If it’s not supporting our children into adulthood, then what are we really doing?

RECOGNIZING INJUSTICE

Recognizing the social injustices that your son or daughter experiences, or you experience as an adult on the spectrum, is a critical step in addressing injustices associated with being Black and having autism. After recognizing the injustices, being a self-advocate or an advocate for your child can be useful in navigating academic and clinical environments. This article by the Lovaas Center provides some preliminary skills that can give parents the confidence to advocate for their child(ren) to receive the services or education they deserve.

The Transition Academy hosted a free webinar, Out of the shadows: black families with autism speak out, in which different presenters shared some perspectives of Black families who are personally touched by autism. The webinars include discussions on how to support Black families, personal accounts of being Black on the spectrum, and more.

ADVOCATING

Autism in Black, founded by Maria Davis-Pierre, offers a podcast that focuses on all things autism and the Black parent experience. The goal of the podcast is to educate, support, and empower Black parents to advocate for themselves and their children. In her podcast, Marie covers a wide variety of topics, including tips for IEP development, emotional regulation, transitioning into adulthood, and more.

ALL THEY SEE IS BLACK...

ALL THEY SEE IS AUTISM...

Joy F. Johnson, MEd,MS

Spectrum Support, LLC

They only see a Black, autistic child. They presume inferiority, a future of criminal conduct, poverty, mental heath issues, and/or prison. This is all they see. They don’t see me. They don’t see my worth, my potential, nor do they expect much of me. To them, I’m not worth the effort, so why waste resources? By "they," I mean the largely white America I live in. They define me and arrive at their own erroneous conclusion simply based upon the color of my skin and my disability. My melanated skin and traits associated with autism, amplify both implicit and explicit biases. This commonly results in my social differences being presumed or confused with antisocial behavior or social deviance. This was my story as a child over 20 years ago. Unfortunately, not much has changed.

Social deficits in Black children are often perceived as social deviance in schools by white educators and administrators due to explicit and implicit biases. I had one Black teacher in my entire educational experience. Again, not much has changed. As of 2016, Less than 20 percent of teachers and administrators were Black nationwide (NCES, 2017). In my work as an advocate, behavior specialist, and inclusion specialist, I have seen a Black child with behavioral issues that are commonly associated with autism not be referred to resources, for support, and/or diagnosis. Instead, they were deemed as problem, socially deviant, and referred to disciplinary boards and/or law enforcement. On the other hand, I have witnessed a white child in the same classroom engage in the same behaviors immediately be deemed to have social deficits, be recognized as needing support, and quickly referred for assessments, diagnosis, and/or intervention services.

Research conducted by the CDC (2018) demonstrates rates of autism are essentially identical across racial and ethnic groups. However, white children and adults are 30 percent more likely than Black children and adults to receive an autism diagnosis. Furthermore, according to The 2015–16 Civil Rights Data Collection (CRD), Black students and students with disabilities continue to be significantly more likely to face disciplinary actions that result in suspensions, arrests, and expulsions.

Ableism and racism continue to be the unfortunate reality and norm for Black autistic adults too. I face this regularly in interactions with white, neurotypical Americans. Some may argue that I make matters “worse,” as I refuse to compromise my well-being by suppressing who I am; I do not mask my autism nor my “blackness.” Simply entering professional situations as a Black woman and my authentic self, I can quickly detect blatant apprehension in trusting my competency upon introducing myself. This is typically heightened upon the introduction of the confounding variable and proud disclosure that I am also autistic.

These are innate obstacles that accompany being Black in a largely white America…racism. These are innate obstacles that accompany being autistic in a largely neurotypical world…ableism. Racism and ableism, from my perspective, are what cause me and continue to cause others who share their diagnoses and skin color, to be penalized and excluded. My beliefs have been frequently validated, proceeding the demonstration of my competency and effectiveness as a behavior professional. I did not accept the fate assigned to me, and I refuse to accept it now for other Black Autistics. We matter!

CHANGING THE SYSTEM

Maria Davis-Pierre, LMHC

CEO/Founder, Autism in Black, LLC

The conversation surrounding the intersection of race and disability is one that has been long overdue. We know that with having a disability there are certain systems in place that hinder those who are disabled; however, when you add in race, it becomes even harder. Navigating being Black and autistic in today’s society is difficult, as the first thing that people see or notice before anything else, is that you are Black; this is compounded by dealing with what for some is an invisible disability, like autism. For those who are not aware of what these aforementioned systems are, some examples would be later diagnosis, quality of services, and schools making it harder just because they are Black - and that’s all before one even reaches adulthood.

One of the questions I get asked a lot is, "How do we not only bring awareness to this but bring about a larger systemic change?" As Dr. Bettina Love has stated, we don’t need allies, we need co-conspirators. We need people to actually use their privilege to dismantle these systems in place that hinder those who are Black and autistic, holding people accountable to do the actual work of being anti-racist, and challenging the communities to step outside of their comfort zone and to think about those who are different from them.

One of the first things we can do is hold community systems accountable to offer anti-racism trainings that involve conversations about the intersection of race and disability. Police officers, professors, teachers, and health care professionals are some of the individuals that may make it harder for those who are Black and autistic on a daily basis. A suggestion is checking your ableism, along with your implicit and explicit biases of those who are Black and autistic. If we want to make a systemic change on a global level, it starts with 1) Doing your own work and 2) Doing the work in your local communities. We can’t expect to make changes within a system if you haven’t held yourself accountable first.

Joy F. Johnson's organization, Spectrum Support, LLC, offers free information and resources, such as social story and information card downloads. She also provides free services to Black autistic children and adults. These services are supported by the Black Spectrum Fund, for which Joy accepts donations on her website.

Joy also has an Instagram account, where she shares additional information about uplifting the Black autistic community. She regularly updates her page with resources for Black families.

PEER PERSPECTIVE

Learn From Autistics published an interview with Eric Evans, a Black man diagnosed with Asperger's at the age of 15. He describes his perspective of the intersectionality of race and autism. He also shares important information about some elements of effective and genuine anti-racist and anti-ablelist advocacy.

Disclaimer: any one person with a diagnosis of autism spectrum disorder can have varying symptoms. This perspective is not meant to be one which is generalizable to all people on the spectrum.

QUOTE OF

THE WEEK

“In the end, we will remember not the

words of our enemies, but the silence of our friends.”

-Dr. Martin Luther King, Jr.

ANNOUNCEMENT:

The New Jersey Association for Behavior Analysis (NJABA) is hosting a Virtual Conference on September 18th!

Representing RCAAS, DDDC, and the EPIC Programs, our featured speakers include: James Maraventano, Courtney Butler, Robert LaRue, Jenna Budge, Peter Gerhardt, and Julia Iannaccone.

They will be presenting on improving outcomes for adults with ASD. We hope you can attend!