How do I deal with labels, myths, and stigma of autism?
Black parents of a child with autism may deal with biases as members of the Black community and the stigma associated with labels such as autism within the Black community. Unfortunately, history shows that biases and prejudices may lead to differences in Black families’ experiences as they navigate service systems in the community. As a Black parent, you may have had experiences of feeling unheard or misunderstood by providers or feeling as though you were not provided information about community resources, services, or supports. You may have been saddened or angered by the stories of those in authority, such as police officers, who treated Black people with disabilities in terrible ways. There has been an increase in efforts between advocates and professionals across various systems and disciplines that are working collaboratively to address unjust practices. Additionally, there are strategies that parents can use to deal with these concerns.
At times, rejecting a label can lead to challenges in gaining access to support services that may benefit your child. One way to assess the benefits of an autism diagnosis is by educating yourself about autism through trusted resources, including other Black parents. Accepting a label such as autism may involve facing your own feelings about developmental disorders and/or diagnoses in general. It can be helpful to acknowledge and reflect on your own upbringing and experiences as you assess what will be most beneficial for your child. There are also organizations and groups, led by and for the Black community, that provide Autism awareness and education.
One of the most significant benefits of an early diagnosis of autism is that it can lead to early intervention. The Color of Autism Foundation, helps families identify the early warning signs of autism and addresses the disparities in outcomes, “by helping African Americans with autism reach their full potential.” They provide families with information on autism that they can use to advocate for services for their child. Find parents and professionals you can trust:
Benefits of early diagnosis
The Color of Autism Foundation
Contact Autism Navigator
FACES Program
As a Black parent of a child with autism, there may be people in your life who do not understand the diagnosis, including family and close friends. Additionally, there may be people who misinterpret your child’s autism as a behavioral concern, attributed to your parenting. While everyone in your life may not understand or be willing to acknowledge the diagnosis, you have the power to provide education that helps others understand your child better. Additionally, in some cases, you may need to pick your battles and/or create boundaries that are in the best interest of your child and your family.
Remember that whether (and how) you choose to share your child’s autism diagnosis with family and friends is completely your choice. Find strategies related to how to navigate this: Whether dealing with stigma and biases inside or outside of the Black community, parents can equip themselves with tools to aid in advocating for their child. In educational spaces, parents can utilize this IEP (Individualized Education Plan) Checklist to prepare to participate in meetings and communicate their ideas effectively: Because Black individuals have experienced repeated injustices at the hands of law enforcement, Black parents of children with autism may experience varying emotions in thinking about the possibility of their child encountering the police. Resources related to preparing your autistic child to interact with law enforcement: Additionally, it is important to acknowledge that it is burdensome for Black families to have to bear the stress of preparing their children for bias. There are organizations, such as The Arc, that are actively advocating for more equitable practices for people with intellectual and/or developmental disabilities, as it relates to the justice system. They have firm positions about the disparities of People of Color regarding civil rights and criminal justice.
ARC - civil rights
ARC - criminal justice
Sharing autism diagnosis
IEP Checklist
Law enforcement and autism
There are several organizations and online groups with an emphasis on supporting Black families with children with autism and other developmental differences.
Autism in Black aims to provide support to Black parents who have an autistic child, through educational and advocacy services. They dedicate themselves to increasing autism awareness and reducing the stigma in the Black community:
Autism in Black
Online groups that provide support and resources for families:
- Black Parents of Children with Autism and Other Disabilities Support Group was created to serve as a place for Black parents of children on the autism spectrum to find support and comfort among friends:
Black Parents Support Group - Mother 2 Mother is a non-profit 501c3 that is designed for parents and caregivers of individuals with disabilities. They offer support, resources, education, and empowerment through various support group meetings, trainings, workshops, and family-friendly events:
Mother 2 Mother - For families with a preference for resources from an organization with a religious affiliation, Our Exceptional Journey is open to parents, caretakers, extended families, or loved ones with a specifically designed for those that care for a person or people with extra support needs:
Our Exceptional Journey - Autism Support with Dr Ali Griffith is for moms, dads, family members and supporters to empower, enlighten and encourage the community in acceptance, inclusion and motivation.
Au- mazing Tribe
BFAST is a UNC TEACCH Autism Program project in collaboration with the Autism Society of NC and the Frank
Porter Graham Child Development Institute made possible through funding from the C Felix Harvey Foundation
