I am an Ojibwe autistic parent of autistic children, and a disability advocate. My children and I are statistically insignificant, and we routinely endure systemic erasure. Most Native autistic people do not get an accurate diagnosis or the support they need at any age. Native communities desperately need access to accurate information about autism and culturally responsive care.
April is Autism Acceptance Month. This month, please take some time to learn about autism from autistic people. Just as services for Indigenous people should be informed by Indigenous values and perspectives, we must recognize that autistic perspectives are also invaluable. Autism doesn't end at 18, and many autistic adults are parents of autistic children, providing the opportunity for helpful insight to improve the quality of life for autistic children and their families.
The cornhusk doll story teaches us that we are all equal in the eyes of the creator. There is no word for disability in Ojibwe. Traditionally, we revere our elders, and our communities were designed to ensure that everyone’s needs are met, no matter their abilities or disabilities. We understood that successful communities are interdependent and everyone needs help sometimes.
Colonization disrupted our way of life
Colonial perspectives differ, in that disability is stigmatized and disabled people are undervalued.
Value is determined by independence and how much a person contributes to capitalistic systems.
Children are trained to comply and produce, and any deviation from expected measures is a deficiency that needs to be corrected.
Applied Behavior Analysis
Native children deserve better than the abusive practices of Applied Behavior Analysis (ABA).
Recently, it was determined that IHS will fund Applied Behavioral Analysis, which will hurt Native children and waste IHS dollars that could be used to provide culturally responsive care. IHS should not fund Applied Behavior Analysis.
Applied Behavior Analysis was created by Ivar Lovaas, whose research also laid the groundwork for gay conversion therapy, which is now illegal in many jurisdictions because of the harm it does.
Applied Behavior Analysis is conversion therapy for autism, based on the idea that autism is bad and autistic people need to be fixed.
In 1974, Lovaas stated in an interview for Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
In 1879, an army officer named Richard H. Pratt opened a boarding school for Indian youth in Carlisle, Pennsylvania, which became the model for other boarding schools. His motto was "Kill the Indian, save the man."
These horrifying quotes reveal a similar intent. Both are dehumanizing, relegating Indigenous and autistic people as "other" subhumans who need to be trained to be real humans.
B.F. Skinner, another person responsible for Applied Behavior Analysis, was a proponent of operant conditioning on a broad scale, without regard for wellness of individuals or culture, in alignment with cultural assimilation. “Managing the behaviors of an entire populace could be accomplished by reinforcement on a cultural level, just like changing individual behaviors on a personal level.”
Applied Behavior Analysis is forced assimilation, reminiscent of the boarding school era, when our children were stolen from our families and required by law to attend schools where we were beaten and worse for speaking our own Native languages.
Parents of autistic children are frightened into sending their children to 40 hours a week of Applied Behavior Analysis, based on fear tactics that their child has a short period of time in which they can be “saved” from their autistic neurology. The love that parents have for their children is exploited with fear-mongering strategies and manipulation. Applied Behavior Analysis practitioners often use Applied Behavior Analysis tactics on parents, without the parent’s consent. If Applied Behavior Analysis is a therapy, it requires informed consent.
Children in Applied Behavior Analysis frequently experience language deprivation. Rather than being supported with access to Augmentative and Alternative Communication (AAC), picture boards, sign language, or myriad other communication options, children may be forced to use oral language — even if their body does not have the physiological ability to speak. Accessible communication is a human right.
Native autistic children are more likely to be removed from their homes and put into foster care than gain access to Augmentative and Alternative Communication devices. About 40 percent of all children in foster care have a disability. Parents are often blamed for their child’s disability, rather than receiving support to live a good life. Here in Minnesota, we have one of the worst rates of out-of-home placement of Native children in the country.
Historically, Native children in residential boarding schools were the first subjects of experimental treatments, including electric shocks. This century, it is almost exclusively Black and Indigenous children with developmental disabilities who experience electric shocks during the course of behavioral interventions like Applied Behavior Analysis.
In Applied Behavior Analysis, relationships are exploited and weaponized. Early on, children are “paired” with practitioners. During the “pairing” process, children are trained to associate their practitioner with all of their favorite things. Then the child’s favorite things are withheld from them by the practitioner, and they can only have access to their favorite things if they perform the tasks that the practitioner demands. Sometimes, the time with the practitioner becomes the reward, and then the practitioner is withheld from the child. In every other context, this is called grooming. In the context of Applied Behavior Analysis, it is still grooming.
Children in Applied Behavior Analysis are often subject to coercive hand-over-hand physical redirection, planned ignoring, seclusion, and restraint. They may develop stress tremors, which is a kind way of saying that they are so deeply traumatized that they develop uncontrollable shaking.
Children in Applied Behavior Analysis are denied bodily autonomy, which leaves them even more vulnerable to abuse than they would be without compliance training. 90 percent of girls with a developmental disability will be sexually assaulted in their lifetime, 49 percent will be sexually assaulted more than ten times. How do Indigenous girls with developmental disabilities fare? There’s no research, because we are statistically insignificant.
Has anyone considered the impact of compliance training on vulnerable Native girls, and how does #MMIW fit in? As an Indigenous autistic woman, does my safety matter? Do my daughter's? Native autistic children need to be taught about bodily autonomy, healthy boundaries, and how to protect themselves.
Children in Applied Behavior Analysis are often trained like dogs, using food treats as reinforcers, which is especially harmful to Native people as we are at risk of obesity, and two of our primary killers are heart disease and diabetes. Training children to comply with directives in exchange for treats is unhealthy and dangerous.
In 2018, researchers learned that people who endured Applied Behavior Analysis are more likely to develop PTSD.
In 2019, the Department of Defense determined that Applied Behavior Analysis is ineffective.
Indian Health Services should not waste millions of dollars on a treatment that harms disabled children.
We need early intervention services that are culturally appropriate.
Applied Behavior Analysis is not and can not be culturally appropriate for Natives.
Equity isn't equal access to colonial capitalist services. It is hurtful to see access to Applied Behavior Analysis promoted as "equitable." Equity isn’t about ensuring that Native people have access to the same services as white people, which were based on research of white boys, with goals developed by white parents and white researchers and white practitioners based on white people’s values. Equity is designing and adapting services to meet our needs, based on our values and ideals, to help us achieve our goals.
The Ojibwe people believe our children choose us as their parents. We are meant to become the parents they need us to be, and our role is to guide our children on their journey. Our children change us, we don’t change our children.
Applied Behavior Analysis is meant to deny the child’s identity and change the child to meet the expectations of others.
Culturally responsive care
There are many excellent options to support Native autistic children that are compatible or can be adapted to be culturally responsive. When we think of the wellness of Indigenous children, the Relational Worldview, developed by the National Indian Child Welfare Association, should be in the front of our minds. Summarized, the Relational Worldview explains what Indigenous people have known since the beginning of time.
As written by Terry Cross, MSW, ACSW, LCSW, “It is a reflection of the Native thought process and concept of balance as the basis for health, whether that is an individual, family or an organization.” Some therapeutic approaches that are consistent with this philosophy include:
The social communication, emotional regulation and transactional support or SCERTS model, that was developed by an interdisciplinary team of occupational therapists, speech language pathologists, psychologists and educators is designed to prioritize a child’s culture while providing developmentally-appropriate support.
SCERTS focuses on supporting a child’s social communication, emotional regulation and transactional support. It is a way to say that the relationships between the child, family, and professionals are paramount.
Floortime is another option. Floortime is a relationship-based model designed to help children build skills, not to gain compliance. Unfortunately, sometimes practitioners try to combine Floortime with Applied Behavior Analysis, and this should be avoided.
Occupational therapy is a wonderful service, which helps people with sensory and emotional regulation. When we think about cradle boards, part of the medicine of a cradle board includes that deep pressure that babies crave. That is a form of sensory regulation. Sensory gardens are an incredible sensory and emotional regulation tool. Sensory gardens are also culturally responsive care, particularly when they are grown with principles from The Honorable Harvest.
Speech therapy is an essential support for non-speaking children, though we must be careful to ensure that speech therapy services are focused on accessible communication and skill-building, not forced oral speech. Speech therapists can help children to learn to use Augmentative and Alternative Communication (AAC) devices, and find other ways to support communication. Speaking ability can be fluid, and access to AAC should be unrestricted. If a communication support helps a child, that child should always have access to that support.
Behavior is a form of communication
We must also recognize that behavior is a form of communication. When a child needs behavioral support, there are many strengths-based models that support children’s needs keeping the whole child safe and connected including:
Dr. Ross Green's collaborative problem-solving model, Plan B, helps us to effectively work with our children to solve problems, eliminating power struggles and mitigating explosive behavior.
Dr. Mona Delahooke wrote the book “Beyond Behaviors” to help adults understand the physiological aspect of behavior, and how we can support children in the context of relational safety.
Alfie Kohn has written several books about behavior and discipline that focus on education and discipline, which will help every parent and every educator to be more successful in helping children.
Strength-based models that strengthen relationships are compatible with the relational worldview and Native values.
We can and should provide culturally responsive care for Indigenous autistic children.
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