Top 10 Facts About Adult Autism

If you search for information online about autism, you'll find a surprising number of articles about and images of young children. In fact, most articles written about autism are written about children. While it's true that symptoms of autism appear first in early childhood, however, autism is not a pediatric disorder. Instead, it's a lifelong challenge that can make the adult years somewhat or very challenging.

So why is relatively little written about autism and adulthood? While there's no absolute answer, here are some educated guesses:

• Because autism first manifests before age 3, many people receive new diagnoses of autism as children.
• Most people who actively want to read about autism are the worried-but-hopeful parents of children who are or may be autistic.
• By the time their autistic children are adults, many parents have learned a vast amount about autism and feel they are now as expert as anyone who might be writing about it.
• Because of the changes in how autism is defined, many adults whom we would now consider to be autistic never received an autism diagnosis.
• High-functioning adults with autism are often uninterested in reading about non-autistic perspectives on autism.
• Some adults with autism have intellectual disabilities that would make it extremely difficult to read about autism.

So why is it so important to learn about adults with autism? Simply put, people with autism, like everyone else, are adults for much longer than they are kids. As kids age into adulthood, they may need more help rather than less in navigating the incredibly complex, chaotic, and demanding world of the 21st century.

What do you need to know about adults with autism? Here are 10 facts to get you started.

Despite stories you may have read on the Internet, it is incredibly rare for a child accurately diagnosed with autism to become an adult who is no longer diagnosable. Yes, children with autism may build skills and workarounds that make autism less obvious. Yes, teens with autism may learn more social skills so that they are able to "pass" in some situations. But no, a child with autism won't just get over their autism to become a typical adult.

Some adults with autism are in successful careers in demanding fields such as information technology, robotics, and video game production. Some are working part-time while also taking advantage of day programs and resources. Some are unable to function in the workplace and spend their days in sheltered settings. Some adults on the spectrum are happily married or partnered; others have romantic friendships; a significant number are unable to form meaningful, reciprocal relationships with peers. These vast differences make it just as tough to define or provide services for adults with autism as for children on the spectrum.

While it's relatively rare, there are quite a few adults with diagnosed autism who are moderate to extremely successful people. Some are happily married and partnered, and many are fully employed. Quite a few have become role models for young adults on the spectrum who hope to live full, independent lives. Just a few such role models include:

• Temple Grandin, animal husbandry expert, author, and public speaker
• Stephen Shore, author, musician, professor, public speaker
• John Elder Robison, author, and public speaker
• Dan Ackroyd, actor, singer, radio personality
• Daryl Hannah, actor

All of the individuals above, along with many others, are active autism advocates. Many speak publicly about their experiences and offer resources and insights both to autistic adults and to their family members.

While some high functioning autistic adults are quite successful, quite a few are severely challenged. Surprisingly, "severe" autism is not always the biggest obstacle to employment or even personal happiness. Higher functioning individuals are sometimes at a greater disadvantage because they may be struggling to "pass" for normal while trying to cope with severe anxiety, sensory dysfunction, and social/communication deficits.

Between 25 percent and 30 percent of autistic adults are non-verbal or minimally verbal beginning in childhood, meaning they are unable to use spoken language or have significant impairments with it. According to recent research, up to 56 percent of people with autism are also aggressive toward others, especially their caretakers. Naturally, non-verbal, aggressive adults with autism are unable to successfully manage typical living situations or jobs.

In general, people with autism are honest and dependable; most are focused on their work and are rarely distracted by social activities or outside interests. Quite a few have exceptional talents in areas such as computer coding, mathematics, music, drafting, organizing, and visual arts. While it can be tough for autistic adults to set up and manage their own space and schedules, many are outstanding employees. Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals; a few include:

• Freddie Mac
• Microsoft
• Walgreens
• SAP

All 2-year-olds throw tantrums. All teens have "issues." As a result, autistic kids and teens often get a bit of a break: after all, they're just kids.

But once you're an adult, you're expected to put away your emotional challenges, tuck in your shirt, and act like a grown-up.

Grown-ups, at least in modern-day America, are expected to independently manage time and money, run their own home, find and hold a job, manage social interactions at work and in the community, find friends and romance, save for a rainy day, cook an omelet, and be there for their kids. Not to mention handling the constant onslaught of sound, information, interaction, and visual stimulation that's part and parcel of being alive today.

People with autism find many of these expectations impossible to fulfill. Autism entails deficits in speech and nonverbal communication, executive functioning, and social interaction. It also entails hyper- or hyposensitivity to sound, light, smells, tastes, and touch. It may make it harder to find and keep friends or romantic partners. It may make it almost impossible to land and keep a job that requires a high level of social or planning skills. It may also mean that living independently while managing all the demands of daily life is simply too challenging.

Very few adults with autism are partnered, live independently and work full time in fulfilling jobs, comparing poorly to adults with other disabilities. Additionally, those who do attain these measures of success may do so more than a decade after their peers in the general population. According to the Autism Society: "In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force — working or seeking work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed."

The relative lack of information for and about adults on the spectrum means that a lot of parents suddenly find themselves scrambling when their child — now a young adult — reaches the magical age of 22. Because on their 22nd birthday, people with autism suddenly lose their entitlement to services under the Individuals with Disabilities Education Act — and enter the much chancier world of adult services. While the IDEA actually requires schools to offer "free and appropriate education" to all children, there is no such requirement for adults. As a result, funding and programming for adults may or may not be available at any given time.

Adults with autism are entitled to nothing but are likely to receive at least some level of support. If you live in some states, you'll have little trouble accessing services and funding for adults with autism. If you live in other states, you're out of luck. For example, according to Centers for Medicare & Medicaid Services (CMS), Idaho, New Mexico, West Virginia, Montana, and Hawaii offer the least generous programs and services, while California, Massachusetts, Indiana, Colorado, and Vermont are more generous.

Of course, the definition of "services and funding" will vary depending upon need. For example, Medicaid doesn't provide vocational training or support — services that would be particularly useful to higher functioning adults. And Medicaid may or may not be a source of funding for housing, day programs, and other services.

One excellent, updated source of information about state-by-state offerings is Easter Seals; While they do focus quite a bit on children, they also include a wide range of detailed information about resources and services for all ages.

Americans assume that grown children will leave their parents' home and go to live in their own apartment or house. Of course, as the economy and other factors have changed, many more typically developing young adults are moving in with mom and dad. Not surprisingly, a very large number of autistic adults also live with their parents. There are very good reasons for this:

• Residential funding for disabled adults is hard to come by. It's especially scarce for autistic adults who are not intellectually disabled. If your IQ is over a certain number (usually 70 or 75), you're assumed to be independent (unless you have a severe physical illness or disability such as blindness).
• Group homes are hard to get into and may be of poor quality. Like many adult programs, group homes depend upon state and federal funding. In addition, staff and residents change constantly.
• Even bright, capable adults with autism are likely to run into problems when faced with unexpected challenges. In general, it's tough for autistic adults to plan ahead (buying soap before needing it,) manage emergencies (the power went out), and think through novel problems (the drain is clogged). These issues often make it cheaper, smarter, and easier to simply stay with mom and dad.

Whether high functioning or severely autistic, adults with autism are working harder than their typical peers to enjoy a fulfilling life. To succeed, they — like everyone else — need friendship, support, and opportunities to work and play in an accepting social setting. As funding ebbs and flows, it's not always possible to rely on tax-funded programs. That means that the needs of adults with autism must be met by the people in their families, communities, and extended communities who wish them well, believe in their strengths ​and accommodate their challenges and special needs.