OARacle Newsletter

Her words are always with me. “You can’t talk to me! You don’t know what it’s like to have to fight for your child’s life every single day! I’m always fighting. I’m exhausted.” 

I was conducting an autism workshop for community leaders in Brooklyn, New York, when Tamika* walked straight up to me at the front of the room. Her words, spoken through tears of frustration, illuminated the lived experience of a mother of twin Black Autistic children.

During that workshop over a decade ago, I spent my keynote address rambling about the prevalence of autism, the signs that scientists had come up with that parents should look for in early childhood, and available resources. But none of that mattered. Tamika’s story reverberated within those walls, and was the most impactful thing I had heard.

Tamika described the miracle of her twins’ birth, their beautiful fingers and toes. She shared how she lives for the sound of their infectious laughter and described their favorite foods, interests, and the toys they love. Then, she showed me a picture of her 9-year-old children. Her pride and joy. I listened as she described the source of her exhaustion. She was always fighting: 

• With family members who kept telling her that her twins were preterm and that they would develop in time
• With professionals who used complex clinical words that she couldn’t understand
• With the school systems so that her children would be evaluated so they could receive special education supports  
• For her own mental health and sanity

Like Tamika, so many parents of Autistic children in communities of color are struggling with the responsibility to protect their children and advocate for their needs. In many Black and Latinx cultures, there is a strong sense of collectivism, which is based on the principle that the needs of the family and the community come before those of any one person. For communities of color, a history of justified distrust in medical institutions due to racism, creates hesitance to even start the diagnostic process. The journey to an autism diagnosis is hard in general, but when it comes at the intersection of the nuances of race and culture, the experience can be even more overwhelming. In minoritized communities, not only is the chance of misdiagnosis and delayed diagnosis higher, but the stigma surrounding (dis)ability is deep. A formal autism diagnosis is seen not just as a challenge for one’s child, but as a negative reflection on the entire family.

Get the Help You Need

If you are a member of a resilient minoritized culture, you may have family members or community leaders who suggest you can simply do what the culture always does: “push through.” Shame may discourage you from seeking outside help. External pressure can also make you feel isolated and judged, with some wrongly attributing your child’s behaviors to “bad parenting” rather than a genuine developmental difference. But remember this: Recent data from the Centers for Disease Control and Prevention (CDC), indicate that children of color are now being diagnosed with autism at higher rates than their white peers. This is a profound and long-awaited moment of visibility for minority groups. For many years, their lower rates of autism diagnosis were incorrectly interpreted as lower prevalence. But now, the statistics confirm that Autistics in communities of color have finally been seen and the parents’ collective voice on behalf of their children, has been heard.

Slowly, the professionals are beginning to listen. I know that it may be challenging to find clinicians of color who can validate your experience. Ones who not only see your child but understand the racial and cultural context in which your family operates. This is why it is important to share your story. Tamika’s stories reminded me that every client that I evaluate is a child who is deeply loved. A child whose parents dream wonderful things for their life.

Describe the Fullness of Who Your Child Is

Your child is precious, so go ahead and paint a beautiful mosaic as you describe every aspect of their life. When you meet with a provider, tell that provider about the things your child enjoys, the things they hate, the behaviors that make you fearful for them. Show their pictures. Help the provider see your child through your eyes and your experience. Your intimate knowledge of your child is essential to accurate diagnosis and recommendations for supports.

Ask Providers to Clarify

Also, remember, as care providers and clinicians, we tend to spend so much time with the tools we use to do our jobs that sometimes we forget to translate our professional jargon into everyday words that anyone can understand. Please be patient with us. Don’t be afraid to ask us to explain what we mean by all of that “mumbo-jumbo” language. Remind us to help you understand. We are here to support our clients.

Understand Your Legal Rights

Autism diagnosis through private agencies can be very costly, but you have a legal right to request an autism evaluation for your child at their school free of charge. The Child Find guidelines, contained within the Individuals with Disabilities Act (IDEA), mandate that schools identify and evaluate all children who may be suspected to have a disability requiring special education services. A school-based multidisciplinary team of professionals is qualified to conduct an evaluation to determine a) whether your child has autism, and b) whether their autism behaviors and challenges support their eligibility to receive special education services and accommodations.

Ask for an Evaluation

As a school psychologist, a part of my responsibility is to honor a parent’s right to request a school-based evaluation based on federal, state, and/or school district guidelines. So, if you suspect your child might be Autistic or they have received a diagnosis of autism from your medical provider, write a letter to their school’s principal requesting an evaluation for special education services. If you need help to do so, there are parent advocates available in and around every school district. These are not attorneys, but individuals who can work with you to help you write your letter. Locate a parent advocate for your area here.

Self-Care is a Superpower

A parent’s love for their child is incomparable and limitless. If you have flown in an airplane, you know that you are always advised that in case of emergency, you should put on your oxygen mask first. This means making sure you can breathe before you try to help your child with their mask. Taking care of yourself enables you to provide the best possible care for your child. Almost 50% of caregivers of Autistics report psychological distress. The sleepless nights, multiple doctors’ visits, dietary restrictions, and relentless crying, can take a toll on your health. Your child needs you. Finding an autism parent/caregiver support group can be helpful.

Tamika’s words touched my heart and changed the trajectory of my professional practice forever. She taught me the power of listening to people’s stories. I hope you will choose to help change how professionals practice, as Tamika helped me. Please share your story.

*Name changed for privacy

Dr. Alexander is a nationally certified school psychologist (NCSP) and an assistant professor of psychology at Howard University, Washington, DC. She is a dedicated neuroinclusion specialist who works with school districts as an advocate focused on providing culturally responsive support for Autistic children and their families. She trains psychologists and educators to value and center the lived experience of Autistics. She is committed to creating a more equitable, neuroinclusive future for all.