About Healthcare and the IDD Population
Intellectual and Developmental Disabilities (IDD)
The estimate of 16 million Americans with intellectual and/or developmental disabilities (IDD) includes common conditions like autism, cerebral palsy, Down Syndrome, intellectual disability, attention deficit hyperactivity disorder, and more rare conditions like William Syndrome or Rhett Syndrome.
Conditions can overlap such as when an autistic person or someone with Down Syndrome also has an intellectual disability.
Common Clinical Problems
Examples of conditions that are more common than in the general population include sleep disturbance, hormonal imbalance, blood disorders, digestive disorders, anxiety & depression, PTSD, psychiatric conditions, seizures, hearing impairment, eating disorders, substance abuse.
Affected people also develop common medical problems like diabetes, high blood pressure, heart disease, and cancer.
“I feel many things going on in my body and mind.”
— An Autistic Girl
Health Care Prevention Services
Individuals with IDD are known to be at risk for social isolation, fewer emotional supports, and a lack of physical activity leading to greater rates of obesity.
Rates of screenings for cervical, breast and prostate cancer are significantly lower among people with IDD than for the general population.
People with IDD are less likely to receive other services to promote health such as blood pressure and cholesterol checks, or screening for vision and hearing problems.
Racial Disparities
African American IDD children face disparities due to delayed diagnosis and access to services:
| White | Black | |
|---|---|---|
|
|
||
| Average Age of Diagnosis | Mean 5.5 Years | Mean 7.9 Years |
| Percent diagnosed at first visit to specialist | 72% | 58% |
| Percent with diagnosis at 5.5 years | 50% | 28% |
| Percent evaluated by 36 months | 45% | 40% |
(CDC MMWR, Surveillance Summaries / March 27, 2020 / 69(4);1–12)
African American children are often diagnosed years after the onset of symptoms, and in some cases remain undiagnosed well into their elementary school years Therefore, African American children are not as likely to receive and benefit from the early intervention services that many of their European American peers with ASD benefit from as toddlers (Hilton et al., 2010; Mandell et al., 2009).
Autistic people who are Black or Hispanic are twice as likely to report poor or fair mental and physical health as autistic people who are white
Black and Hispanic autistic people also experience higher rates of diabetes and other chronic medical conditions than white autistic people
Lifespan
People with autism die at a rate 10 times higher than the general population.
People with intellectual disability (low IQ) die 2 years younger.
Suicide Risk
3 fold higher with intellectual disability.
6-10 fold higher with autism.
The Human Cost
For years, doctors dismissed an African American mother’s concerns that one of her twin girls was developing more slowly than the other. She had to go to a university center for proper diagnoses before finally getting services for her daughter with intellectual disability and other delays.
A non-verbal man spent 6 grueling weeks heavily medicated on a psychiatric ward because a doctor misinterpreted his movements, which were caused by pain from an undiagnosed hernia. What he really needed was surgery.
A young autistic woman had such deep mistrust about being over-medicated that she avoided getting help for depression. She needed personal support in her daily life. She lost her job and attempted suicide.