March is National Developmental Disabilities Awareness Month providing a great opportunity to pause and reflect on the array of incredible people impacted by a developmental disability. In the United States, current estimates indicate that about 1 in 6 children are diagnosed with one or more developmental disabilities (Zablotsky et al., 2019). These types of disabilities, as their name suggests, manifest during the “developmental” years (birth to age 22). Common developmental disabilities include but are not limited to:
- Autism spectrum disorder,
- Learning disabilities (e.g., dyslexia),
- Cerebral palsy,
- Intellectual disability,
- Down syndrome,
- Attention deficit hyperactivity disorder (ADHD), and
- Fetal alcohol spectrum disorders.
This list is not inclusive. Many developmental disabilities are not well-known. Some conditions can be very rare and misunderstood by the community at large. Continued education and learning to understand the variance in developmental disabilities and how they impact an individual’s life is important as this can vary greatly. Regardless of the disability, the type and severity of developmental disabilities can range from mild to severe. Many people can be impacted by multiple developmental disabilities. In addition, developmental disabilities often are coupled with other co-occurring physical (e.g., obesity, diabetes, congenital conditions) and mental health (e.g., anxiety, depression, obsessive-compulsive disorder, tic disorder) conditions.
Not all disabilities are visible. Some people with developmental disabilities may experience both visible and invisible disabilities. Invisible disabilities can more commonly go unnoticed or hidden. Some examples of invisible disabilities include anxiety, depression, autism, hearing loss, and dyslexia. Visible disabilities can be more easily seen. For example, individuals with Down syndrome typically have visible phenotypical or physical characteristics. As such, Down syndrome is typically a visible disability. As community members, recognizing that others may be living with visible and/or invisible disabilities is very important. Efforts to support all people with disabilities should be made at the individual and community level.
As a country, we have seen a push for more awareness surrounding disability and the diversity within disability. Despite this push, many misconceptions continue to exist and have profound impact on the lives of those with developmental disabilities and their families. My work as both an educator and a social work clinician has enlightened me to some of these common misconceptions. In working predominantly with adolescents and adults with developmental disabilities, many have shared that providers and service systems often fail to recognize that people with developmental disabilities grow up and age across the lifespan. There are many reasons for this, including the images that we might see of a young child with a developmental disability. As a country, we often see lifelong disability and aging as separate entities. Although developmental disabilities are associated with “juvenile-onset” or “pediatric-onset” conditions-- these conditions impact people with developmental disabilities across the lifespan. I have worked with clients sharing that well meaning providers have told them that their condition does not exist in adulthood. For many, they leave frustrated and misunderstood-- but capitalize on the fact that they would love for the day to live without x, y, or z condition.
As we go through this month, let us remember the many faces, stages of life, and talents of those with lifelong, developmental disabilities. The strength, resilience, and the incredible voices of children, adolescents, and adults with developmental disabilities should be elevated not only in the month of March but be woven into the tapestry of our everyday lives. With permission, I am sharing the story of Allie Hayes-- an incredible young adult with Down syndrome. Allie is kind, caring, and personable. She is a ray of sunshine and approaches her days with a bright smile that she shares with those around her. A few years back, Allie was bullied, targeted, and exploited sexually through online means. As she calls it-- she went on to make lemonade out of lemons through her efforts to change Michigan’s legislation through the brave sharing of her own story. The Michigan legislation that Allie bravely spoke in favor of has modernized state legal protections to protect Vulnerable Adults (e.g., some adults with developmental disabilities) from being targeted, harassed, and exploited sexually through online means. A major victory took place when Allie’s bill was signed into law in the State of Michigan in December 2023. Through her tremendous courage and the sharing of her story and her voice-- Michigan now has legal protections for Vulnerable Adults from online exploitation, harassment, and abuse. Let us recognize the incredible, unique, and diverse voices of individuals with developmental disabilities this month and throughout the year.
Our continued work to better our communities, services, and supports to be inclusive for children, adolescents, and adults with developmental disabilities cannot come at a better time. Our individual contributions can make large differences in our communities. Here are some ways to build stronger community ties and inclusivity:
- Don’t assume. Disability is diverse and the way each individual and their caregiver experiences it varies depending on the type and severity. Ask people what they need before assuming.
- Create an inclusive environment. Welcome and invite individuals with disabilities and their families into your community and social networks.
- Educate and reduce stigma. Misconceptions about people living with developmental disabilities. By increasing awareness and understanding, both individuals living with disabilities and their families can be more connected and feel more supported in their relationships and communities.
- Recognize and support family members and family caregivers. Lend a helping hand. Ask what they need. Families of individuals with developmental disabilities often say that they find tremendous support through their informal social support networks (e.g., family, friends, neighbors).
- Get involved! Volunteer for activities and programs that benefit individuals with disabilities and their families and make them part of the community.
- Advocate for disability-friendly services and policies. Use your voice to make a difference on the systemic level.
National Developmental Disabilities Awareness Month is a wonderful time to recognize the strengths, interests, contributions, and individual potential of people with developmental disabilities. During this month and throughout the year, finding ways to include the voices and representation of those with disabilities is paramount. Countless opportunities are available to support and include individuals with developmental disabilities into all facets of the community.
Acknowledging and supporting individuals with developmental disabilities to be meaningfully involved and connected in our community is paramount. Be inclusive, advocate for disability-friendly services and policies, and support individuals with disabilities and their families.
References
Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., Danielson, M. L., Bitsko, R. H., ... & Boyle, C. A. (2019). Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics, 144(4).
