5.4 MILLION. Per the CDC, that is the estimated number of adults with autism living in the US today. Every year, another 90,000 children with autism turn age 18 and join that growing adult autism population. Most of these adults with autism are under age 40. After all, the rate of autism in US children was 1 in 2500 just 40 years ago, but stands at 1 in 44 today.
Historically, less than 2% of government funding for autism research focuses on adult issues. Yet children diagnosed with autism will spend most of their lives as adults with autism.
Autism covers a wide spectrum; there is no one answer as to what it is like to be an adult with autism. Some are highly successful; people with autism are among the faculties at prestigious universities. Others live with 24/7 caregivers in homes or institutional settings.
Most autistic adults fall somewhere in the middle. Communication may be a struggle. Even if verbally fluent, they may find phrases with double meanings confusing, or have trouble putting together words and facial expressions for nuance. They are likely to be at higher risk of falling for scams. They may be excellent workers but perform poorly in interviews. They may find it difficult to describe symptoms to doctors, or be able to determine what to do in an emergency.
For comparison, approximately 1.9 adults in the US live with HIV, while nearly 1 million live with multiple sclerosis.
Adults with autism are unlikely to be attending public hearings to clamor for more funding. For those who do qualify for government aid, the application and reporting requirements may be overwhelming. Many have parents quietly assisting them into old age, after which they must rely on help from siblings or family friends.
Autism is often called a quiet tsunami. Many people have learned about autism via publicity about children. But children with autism grow up to become adults with autism. The numbers of adults with autism are growing rapidly. Government resources, employers, and more are simply unprepared.
nonPareil Institute is a 501(c)(3) nonprofit with a mission of building better futures for adults with autism. For more information, visit www.npusa.org.