How do I make sure my voice is being heard?
While educational and medical professionals are knowledgeable in their respective areas, parents bring a wealth of knowledge about their children. From a cultural perspective, Black parents may feel as though they are not being heard when providers tell them about their child, without allowing them to ask questions and share their expertise. Parents need tools and strategies to empower themselves to discuss their concerns with providers and advocate when faced with barriers, including implicit bias, stigma, and/or racism. Sometimes a provider may not understand, and sometimes they may not always hear what parents are trying to tell them about their children. There are ways that parents can increase the likelihood that their providers hear and understand them, so they receive the support they need. This may include increasing their own understanding of their child through engaging with educational resources, connecting with advocates who are knowledgeable about their child’s needs and/or rights, or connecting with providers who practice from a culturally humble lens. As parents continue to find and use their voice, it is important to remind themselves that they are their child’s best advocate.
Parents can educate themselves about autism by finding resources, attending workshops, and talking with other parents or providers. Be aware that resources over the past 40 years have not centered on the experiences of Black children with autism and their families, but it is important to start somewhere. In recent years, more research, content, and information about autism has been created by Black parents, providers, and researchers. Resources are becoming more widely available, links are included here from North Carolina and beyond. While there are many topics that parents can educate themselves on, this section highlights educational resources related to three main areas: diagnosis, school supports, and transition planning. As you review resource options, it is important to remember to chew the meat and spit out the bones, by asking yourself “Is this relevant for me and my child?”
- Educating Yourself on the Diagnosis – Information about the diagnostic criteria for autism, including how it is diagnosed:
Diagnostic criteria information - Educating Yourself on School Supports – Information about the Individuals with Disabilities Education Act (IDEA) and the eligibility criteria for students to qualify for an Individualized Education Plan (IEP):
Educate Yourself on School Supports - Educating Yourself on Transition Planning – Information about the services offered to students with an IEP to support them in the transition to life after high school:
Education Yourself on Transition Planning - For additional general resources to guide families through various other autism-related topics, the Autism Society of North Carolina has easy-to-use, accessible toolkits:
ASNC Toolkits
There are certain things that your child may be entitled to by law, including but not limited to: early intervention services, educational support services, and health care coverage. For more information see the links below.
Each state offers free early intervention services and family support for children under age three with developmental delays and disabilities. Information about rights within the North Carolina educational system: Most families with health insurance have medical and mental health coverage. There are also autism or ABA benefits, which are a carve-out of the mental health plan. While all health plans have to offer ABA benefits in North Carolina, not all families have the coverage. In North Carolina, Medicaid covers autism services and therapy. To learn more about your health plan benefits, contact your health plan provider, you can ask about medical, mental health, and ABA benefits.
North Carolina Infant-Toddler Program Child and Family Rights
Education rights of students
Parent Rights & Responsibilities
Federal Regulations & State Policy Information
ECAC Parent Center
Education rights terms information
Medicaid funding in NC
Families may want to bring someone who can help them communicate their needs during appointments. This could be a trusted team member, family member, or someone knowledgeable about their child and/or the service system. When needed, trained team members and experts may be able to come and support families throughout the process of getting their child the resources they deserve.
- Disability Rights of North Carolina (DRNC) provides support to individuals with disabilities and their families related to knowing their rights and provides legal services, if needed. DRNC’s advocacy work:
Disability Rights of NC- Advocacy - The Arc of North Carolina is invested in promoting the rights of disabled persons and has advocates available to help:
Arc of NC - Advocacy - The Autism Society of North Carolina has a resource directory with a list of possible advocates:
ASNC Resource Directory - A child’s team members may be helpful for visits to providers and care team meetings. Reach out to people on your team beforehand to let them know about your child.
BFAST Build your team information Building your team - who supports me
Families can prepare in advance by listing questions, concerns, and providing information about their child to help make sure all important details are shared and addressed. It is also helpful to take notes to refer back to what was said and agreed upon.
For educational meetings, the following resources may be helpful:
- Helpful form on how parents can advocate effectively:
All about Advocates - Document related to how parents can prepare for and participate in IEP meetings:
ECAC Parent Center - Help your team get to know your child:
Help team get to know your child - If your child, toddler age or younger, is not yet diagnosed, information to help your provider understand your concerns:
Help provider understand your concerns
Seek referrals and access a provider who listens, seeks to understand, incorporates your ideas, and respects your beliefs. At times, this may mean finding a provider who specializes in supporting Black families. You may seek input from Black families who are happy with their providers.
The Autism Society of North Carolina has a searchable database to learn more about providers and agencies that provide intervention for autistic children in your area: Other Black families or Black-specific websites for finding providers:
ASNC Resource Directory
The Color of Autism
Autism in Black
FACES for Autism
Contact BFAST navigator
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
