What is Autism?
Autism, also known as autism spectrum disorder (ASD), is a complex neurodevelopmental disorder that affects communication, social interaction, and behavior. According to the Centers for Disease Control and Prevention (CDC), autism affects an estimated 1 in 54 children in the United States, with boys being diagnosed more often than girls.
What are Some Symptoms of Autism?
The symptoms of autism can vary widely from person to person, but they generally fall into two categories: social communication and behavior. Some of the common symptoms of autism are:
Social communication difficulties: People with autism often struggle with nonverbal communication, such as making eye contact, facial expressions, and body language. They may also have difficulty understanding social cues and developing age-appropriate friendships.
Repetitive behavior: People with autism may have restricted interests or engage in repetitive behaviors, such as rocking, hand flapping, or repeating words or phrases.
Sensory issues: People with autism may be overly sensitive or under-sensitive to sensory stimuli, such as noise, touch, taste, or smell.
Speech and language delays: Many children with autism have delayed speech and language skills, and some may never develop spoken language.
Statistics on Autism
According to the CDC, autism affects an estimated 1 in 54 children in the United States. However, studies have shown that autism is often diagnosed later in BIPOC children than in non-BIPOC children, which may result in delayed access to interventions and services. For example, a study published in the Journal of Autism and Developmental Disorders in 2020 found that Hispanic children with ASD were more likely to have intellectual disability, lower levels of language development, and receive their diagnosis at a later age than non-Hispanic white children with ASD.
Another study published in the Journal of Developmental and Behavioral Pediatrics in 2021 found that Black children with ASD were more likely to have co-occurring ADHD and anxiety than white children with ASD. These statistics highlight the need for increased awareness, screening, and access to services for BIPOC children with autism.
How is Autism Diagnosis?
Diagnosing autism can be challenging, and there is no single test for the disorder. However, doctors typically use a combination of behavioral evaluations, developmental screenings, and medical tests to diagnose autism. Early diagnosis and intervention are critical to improving outcomes for people with autism, so it is important to seek help if you suspect your child may have autism.
How is Autism Treated? Is There a Cure for Autism?
There is no cure for autism, but early intervention and treatment can significantly improve outcomes. Treatment options for autism may include behavioral therapies, such as:
Applied Behavior Analysis (ABA)
Speech Therapy
Occupational Therapy, and
Medication for co-occurring conditions, such as anxiety or ADHD
Autism and Generational Health
Individuals with a family history of ASD are at a higher risk of having ASD themselves or having a child with ASD, particularly if they have a daughter with ASD or more than one child with ASD. This risk extends to other family members as well. It is important to inform your doctor if you or your partner have a family history of ASD when planning or during pregnancy, as this information can help determine the likelihood of having a child with ASD.
When gathering family health history, make sure to include information about your children, parents, siblings, grandparents, aunts, uncles, nieces, and nephews, as well as anyone who has been diagnosed with ASD, learning disorders, intellectual disabilities, schizophrenia, epilepsy/seizures, personality disorders, or ADHD. Also, note if anyone has undergone genetic testing and the results of the testing, and if anyone has a genetic disorder that can cause ASD, like fragile X syndrome or Rett syndrome. It is crucial to include older family members who have or had signs of ASD, even if they were not formally diagnosed with ASD, as diagnoses were less common in the past and might have been missed.
Make sure to share your family health history of ASD with your child's doctor and other family members.
Genetic Testing and ASD
If a child is diagnosed with autism spectrum disorder (ASD), their doctor may refer them for genetic counseling and testing. Genetic testing can help identify the causes of ASD, but it cannot be used to diagnose ASD. Individuals with syndromic ASD, which is characterized by the presence of other specific features in addition to ASD, such as birth defects or physical differences, are more likely to have a genetic cause for their ASD. Genetic testing is more likely to find a genetic cause for ASD if the child or another family member has syndromic ASD, a family member has an ASD-related genetic change found through genetic testing, or multiple family members have ASD.
The most commonly ordered genetic test for individuals with ASD is a chromosomal microarray (CMA) test. This test looks for extra or missing parts in chromosomes that could cause ASD. CMA can find a genetic cause in 5% to 14% of people with ASD who undergo the test.
Additionally, children with ASD should be evaluated for genetic disorders that can cause ASD, such as:
Fragile X syndrome: This genetic disorder is a common cause of intellectual disability and affects about 1 in 7,000 males and 1 in 11,000 females. Approximately 0.5% of people with ASD have fragile X syndrome, and testing for it is recommended for all individuals with ASD.
Rett syndrome: This genetic disorder primarily affects females, and about 4% of females with ASD have Rett syndrome. Testing for Rett syndrome should be considered for females with ASD.
How Can We Advocate for Autism Awareness in BIPOC Communities?
It's important to remember that autism affects individuals from all backgrounds and communities. However, research has shown that BIPOC individuals may be diagnosed with autism at lower rates than non-BIPOC individuals, potentially due to systemic barriers to accessing diagnostic and therapeutic services.
Advocating for autism awareness and breaking down stigmas surrounding autism can help increase access to diagnostic and therapeutic services for BIPOC individuals with autism. By advocating for increased awareness and support for autism in the BIPOC community, we can help ensure that all individuals with autism receive the care and support they need to thrive.
Autism Resources
Diagnosing autism spectrum disorder | National Institute of Mental Health
Treatments for autism spectrum disorder | Autism Speaks
Autism Screening Questionnaire | Autism Speaks
Research Along the Autism Spectrum: Diverse Research to Meet Diverse Needs | Interagency Autism Coordinating Committee (IACC)
Mandell DS, Xie M, Morales KH, Lawer L, McCarthy M, Marcus SC. The Diagnosis of Autism Spectrum Disorder in the Context of Medicaid Insurance. J Autism Dev Disord. 2020;50(2):477-485. doi:10.1007/s10803-019-04217-5
Crafa D, Warfield ME, Telep AA, et al. Clinical Presentation and Comorbidities of Autism Spectrum Disorder in Black and White Children. J Dev Behav Pediatr. 2021;42(2):89-95. doi:10.1097/DBP.0000000000000881
Dawson G. Advocating for autism awareness in underrepresented communities. Pediatrics. 2021;147(3):e2020018673. doi:10.1542/peds.2020-018673