Autism Information
What is autism? Autism is a neurological disorder characterized by repetitive behaviors, narrow interests, communication impairments, impaired social interactions, and rigid behaviors with difficulty adapting to daily schedule changes. Autistic individuals may also be unable to make direct eye contact. No two individuals with autism are the same, individuals present a broad range or spectrum of behaviors.
What signs should I look for in my child? How do I know if my child has autism? Signs of autism can surface in children under 3 years old, with some children displaying symptoms prior to 12 months. Parents should be mindful of developmental milestones to gauge physical, communicative, and other growth measures. For a full list of symptoms and developmental milestones, access the CDC’s milestones checklists here: Information for Families | CDC
How can I get my child diagnosed? Well-baby check-ups are critical to monitoring your child’s development and assessing if markers are met. Screening can occur in healthcare settings with pediatricians providing referrals to specialists including speech therapists, occupational therapists, and developmental pediatricians.
What treatments are available? Behavioral therapies like Applied Behavioral Analysis (ABA) are available in therapeutic and educational settings. Autistic individuals may also benefit from speech, occupational, sensory integration, cognitive-behavioral, and physical therapies. Some parents opt for medicines that assist families in managing comorbid conditions of ADHD, OCD, anxiety, depression, seizures, and sleep disorders. Families should work closely with medical professionals in weighing the benefits and/or negative side effects.
Can you share the numbers on autism rates? The rates of autism in the US are now 1-in-36, with prevalence across all racial/ethnic groups and income levels. Although the CDC is now reporting that autism rates are slightly higher in Black, Latino, and Asian populations than among Whites, some researchers attribute the changes to better diagnostic tools and increased autism awareness in Black and brown communities. Autism does, however, remain 4 times more common in boys than girls.
A Thousand Worries focuses on Black autism mothers. Why is that, when autism is found in all racial groups? Data on Black children with autism suggests that challenges still exist for families accessing diagnosis, autism services, and long-term care. Black children are diagnosed later than White peers, which translates into delayed autism services during key developmental periods. Additionally, Black autistic children are also misdiagnosed at higher rates which also contributes to autism service delays.
Black autism families often encounter challenges related to accessing culturally responsive services, navigating systemic barriers within healthcare and education systems, managing financial constraints, and addressing cultural misconceptions surrounding autism within their communities. Autism services are particularly challenging to receive if families reside in service deserts, that is, geographic regions with few autism services or providers. These challenges can compound the stressors of Black autism families.
Centers for Disease Control - Autism information including fact sheets, statistics, and research publications. Also available in Spanish.
Autism Spectrum Disorder (ASD) | Autism | NCBDDD | CDC
Black Families and Providers Accessing Services Together (BFAST) - UNC School of Medicine resource centers across NC. BFAST connects Black families with culturally sensitive autism services.
Black Families and Providers Accessing Services Together (BFAST)
Autism in Black - Support for Black families through training, education, and advocacy.
Autism Knows No Borders - Podcast exploring autism stories of advocates, families, service providers, and individuals with autism.
Autism Urban Connections - Pennsylvania non-profit offers virtual parental advocacy and support groups.
University of Colorado School of Medicine - Autism and the Police: A Book for Black and Brown Kids is a parental resource guide and social story to assist families navigating police interactions.
Autism and the Police- A Book for Black and Brown Kids
Autistic Self Advocacy Network - “What is Police Violence” resource booklet on police violence and disability.
Our New Plain-Language Resource on Police Violence - Autistic Self Advocacy Network
YouTube Autism in Black Families Playlist - African American Family Videos - YouTube
UC Davis MIND Institute/CEDD - Four modules for Black families’ autism awareness, autism services, and overcoming stigmas. (Available in Spanish).
Tools and Resources for Families and Family Support Personnel - CAPTAIN
Michigan State University (MSU) Autism Lab - Resources for autism clinicians with suggestions for anti-racist practices, training, and evaluation tools.
Anti-Black racism resources for autism clinicians
Color of Autism Foundation - Empowerment for Black autism families including training, advocacy, and parental resources.
The Color of Autism Foundation
Georgia Autism Parental Support Society, Inc. (GAPS Society, Inc.) - Georgia based organization bridges resource gaps for Black autism families.
HollyRod Foundation - Founded by actress Holly Robinson Peete and her husband, former NFL star Rodney Peete, the foundation raises autism and Parkinson’s Disease awareness.
Federation for Children with Special Needs - The organization provides information, support, and assistance to families of children with disabilities.
About Us – Federation for Children with Special Needs
Documentary:
Navigating Autism in Communities of Color - A newly released documentary produced by the Multiple Autisms Collective. The film raises awareness of caregivers of color's experiences with autism diagnosis, advocacy, and accessing service.
Navigating Autism in Communities of Color
Facebook Groups:
BAMM - Black Autism Mom’s Movement
BAM - Black Autism Moms
Black Autism Coalition
Black Kids Have Autism Too
Black Autism Support Group
Black Parents of Children with Autism and Other Disabilities
Black Proud Parents of Children with Autism
Black Dad’s of Autism Kids
Black Mothers of Children with Autism
Black Autistics
Supporting Parents Raising Black Children with Autism
Black Mother of an Ausome Child with Autism
Instagram Accounts:
@destinyhuff_iep_advocate
@autisticallyswagged
@mummiesofthespectrum
@hollyrpeete
@raisingkevin_