Autism Factsheet
What is Autism?
Autism or autism spectrum disorder is a neurodevelopmental disability that can be associated with social, communication, and behavioral challenges. Children diagnosed with autism may communicate, interact, behave, and learn in ways that are different from people without autism. You can visit the Centers for Disease Control and Prevention (CDC) autism webpage to learn more about how autism is defined.
How Common is Autism?
The CDC estimates that about 1 in 36, 8-year-old children have been identified with autism. You can view the CDC Autism and Developmental Disabilities Monitoring Network’s 2023 Community Report to learn more.
Why is Monitoring a Child’s Development Important?
Developmental monitoring is tracking when or whether a child reaches the milestones that are expected by his or her age. While developmental screening at well-child visits and in early childcare settings is important, it only occurs at certain time points. Developmental monitoring is an active on-going process of watching a child grow and encouraging conversations between parents and providers about a child’s skills and abilities. It is important that you track your child’s developmental milestones using milestone trackers and share results and concerns with your child’s health and education providers.
Developmental monitoring supports and complements (but does not replace) developmental screening. When monitoring and screening are done together, children are identified much earlier, and can access much needed services and supports. Research shows that starting services early gives a child the best chance to learn and grow.
The CDC’s “Learn the Signs. Act Early.” (LTSAE) Program and Act Early DC aim to improve early identification of developmental delays and disabilities, including autism, by increasing family-engaged developmental monitoring. LTSAE and Act Early DC have free parent-friendly milestone checklists and other resources for children 2 months to 5 years of age. Learn more and access these FREE resources by visiting www.CDC.gov/ActEarly and www.ActEarlyDC.org.
If I Suspect Autism, what do I do next?
If you suspect autism, there are several options for next steps. It is often helpful to pursue multiple pathways at the same time. This includes seeking out an Early Intervention or educational evaluation and seeking out an evaluation within the medical setting. Talk to your child’s primary care provider about these options. If your child’s primary care provider has told you to “wait and see,” but you feel uneasy about that advice, you can self-refer to these resources. Visit the DCAP Is It Autism? webpage to learn more.
My child was recently diagnosed, where do I begin?
Receiving an autism diagnosis for your child or youth can be overwhelming. Start by taking amoment to breathe and remember that your child is still the same amazing individual you woke up to this morning. Here are the first three steps we recommend you take to begin your journey.
Recognize and embrace your child’s uniqueness
Understand that autism is a spectrum, and each child diagnosed with autism is unique, with their own set of gifts and challenges. Your role, as a parent/caregiver, is to support them in reaching their full potential. Embrace and celebrate their individuality and remember that they have many strengths and abilities.
Seek to understand autism through education and research
Autism varies from person to person, so take the time to educate yourself about your child. Review reports from your child’s medical providers and/or school team. Consider reaching out to autism support groups or organizations as they can offer guidance and emotional support during this process. Attend an autism workshop or watch the DCAP Video Series. These are just a few examples to get you started.
Get organized
The autism journey can be complex, with various therapies, services, and appointments. It is vital for parents/caregivers to keep records of conversations and communications with providers and agencies. The Center for Parent Information and Resources created the Sample Record-Keeping Worksheet, which can be a great tool to help you get organized and manage your child’s services and resources.
Remember, you are not alone on this journey. With education, organization, and support, you can help your child thrive and live a fulfilling life.
I am a family member or friend, how do I help my loved one?
The saying goes, when you have met one autistic individual, you have met one autistic individual. Everyone is unique. Be understanding of this difference. Do not make comparisons based on previous experiences.
Ask how you can help. Depending on where your loved ones are on this journey, they may feel isolated. Offering to support them, free of judgement, can make a huge difference in their life and strengthen relationships.
Educate yourself. Reach out to autism organizations, (i.e., DC Autism Parents) to learn more.
Additional Resources for Families:
- Parent Training and Information Center: Each state has at least one Parent Training and Information (PTI) Center funded under the Individuals with Disabilities in Education Act (IDEA). The goal of the PTI is to support families of children from birth to 22 years of age with disabilities by providing free information to maximize their child’s education. DC’s PTI is Advocates for Justice & Education.
- Family-to-Family Health Information Center (F2F): Advocates for Justice & Education is DC’s F2F, which are family-led centers funded by the Health Resources and Services Administration. There is one F2F in each state, and each F2F is staffed by highly skilled, knowledgeable family members who have first-hand experience and understanding of the challenges faced by families of Children and Youth with Special Health Care Needs and disabilities.
- Parent to Parent (P2P): Parent to Parent USA is a national network of P2P programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs. Through a one-to-one “match,” experienced Support Parents provide emotional support to families of individuals with special health care needs and assist them in finding information and resources. Family Ties of DC is the parent-to-parent program for District of Columbia parents and caregivers of children with disabilities.
- Developmental Disabilities (DD) Council: The DC DD Council is an independent, community- based advisory committee funded by the U.S. Department of Health and Human Services, Administration on Intellectual and Developmental Disabilities. The DD Council seeks to strengthen the voice of people with developmental disabilities and their families in support of greater independence, inclusion, empowerment, and the pursuit of life as they choose.
About DCAP:
DCAP is a 501(c)(3) parent volunteer led non-profit organization and does not receive funding to support extensive care navigation. The resources offered are free. DCAP provides a monthly newsletter, a video series, and a variety of educational and community events throughout the year.
Reprinted with permission from DC Autism Parents
We connect families to much-needed resources to support early autism diagnosis and navigation throughout the lifespan. Our organization also connects families to a larger autism community, which provides individualized support, group calls, and workshops.
