When it comes to autism, most articles and pictures focus on young children, so it’s easy to overlook autism in adults. While it is true that autism symptoms first appear in early childhood, autism is not a paediatric disorder. Like everyone else, people with the disorder spend much longer as adults than children and face lifelong challenges.
So why is there relatively little coverage of autism and adulthood? While there is no absolute answer, here are some educated guesses:
- Autism manifests before age 3, so most new autism diagnoses occur in children.
- Most people who actively read on autism are concerned but hopeful parents or guardians of children with or at risk of autism.
- When children with autism grow into adults, many parents or guardians feel like they are as expert as anyone who might write about autism.
- Due to changes in how autism is defined, many adults now considered autistic have never received an autism diagnosis.
- High-functioning adults with autism are generally not interested in reading non-autistic perspectives on autism.
- Some adults with autism have intellectual disabilities, making it difficult to learn about autism.
As children grow into adults, they may need more help, not less, in the extremely complex, chaotic and demanding world of the 21st century. Here are 10 facts to help you understand what it means to be an adult with autism.
Autistic Child = Autistic Adult
Despite the stories you may have read on the internet, it is very rare for a child with an accurate diagnosis of autism to become an undiagnosed adult.
Yes, children with autism may develop skills and workarounds that make autism less obvious. Yes, teens with autism may learn social skills and be able to “pass” in some cases. But no, kids with autism don’t just overcome autism to become neurotypical adults.
Variability in adults with autism
Not all adults with autism are the same.
- Some adults with autism have found success in demanding fields such as information technology, robotics and video game production.
- Some work part-time while also taking advantage of day programs and resources.
- Some people are unable to work in the workplace and spend their days in sheltered environments.
- Some adults on the spectrum are happily married or partnered.
- Others have romantic friendships.
- Some people are unable to form meaningful, reciprocal relationships with their peers.
These large differences make it as difficult to define or provide services for adults with autism as it is for children with autism.
Success for adults with autism
Some adults diagnosed with autism are moderately to highly successful individuals. Some are happily married and partnered, and many are fully employed.
Some even become role models for young people who want to lead fulfilling, independent lives. Only a few such role models include:
- Temple Grandin, livestock 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
These are active autism advocates, along with a few others. Many speak openly about their experiences and provide resources and insights for adults with autism and their families.
While some high-functioning adults with autism have had success, many have faced serious challenges. Surprisingly, “severe” autism isn’t always the biggest barrier to employment or even personal well-being.
Individuals with higher functioning are sometimes at a greater disadvantage because they may “pass” neurotypical symptoms when trying to cope with severe anxiety, sensory dysfunction, and social/communication deficits.
Between 25% and 30% of adults with autism have no or very little language use since childhood, meaning they cannot use or have severe impairments in spoken language.
According to recent research, people with autism tend to be more aggressive toward others, especially their caregivers. Naturally, nonverbal, aggressive adults with autism cannot successfully manage typical life situations or jobs.
Top 10 employers seeking employees with autism
Powerful strengths and capabilities
Generally speaking, people with autism are honest and reliable; most people focus on their work and are rarely distracted by social activities or outside interests.
Many people have extraordinary talents in fields such as computer coding, mathematics, music, graphics, organization, and the visual arts. While it can be difficult for adults with autism to establish and manage their own spaces and schedules, many are excellent bosses and employees.
Some companies have begun to recognize the value of actively recruiting and hiring people with autism; some include:
- Freddie Mac
barriers to independence
All 2 year olds have tantrums. All teens have “problems”. As a result, autistic children and teens often get a little break: after all, they’re just kids.
But once you’re an adult, you should drop your emotional challenges, tuck into your shirt, and act like an adult.
Adults in modern America are expected to independently manage time and money, run a household, find and own a job, manage social interactions at work and in the community, find friends and romance for emergencies, cook omelets, raise child.
Then there is the problem of dealing with the constant onslaught of sound, information, interaction and visual stimuli, which is an essential part of life today.
People with autism find many of these expectations unfulfilled. Autism results in deficits in verbal and nonverbal communication, executive functioning, and social interaction. It also requires hypersensitivity or hypersensitivity to sound, light, smell, taste and touch.
This can make it harder to find and keep friends or romantic partners. This can make it nearly impossible to find and keep jobs that require high levels of social or planning skills.
It may also mean that it is too challenging to live independently while managing all the demands of everyday life.
Compared to adults with other disabilities, few adults with autism have a partner, live independently, and work full-time to get work done. Furthermore, those who do meet these success criteria may be more than a decade behind 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 involved in the workforce — working or looking for work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of people with disabilities were employed.”
Autism at age 22
The relative lack of information about adults means that when their children (and now young adults) reach the magical age of 22, many parents or guardians suddenly find themselves in a hurry.
That’s because, on their 22nd birthday, people with autism suddenly lose their right to services under the Individuals with Disabilities Education Act (IDEA) and enter the more dynamic world of adult services.
While IDEA requires schools to provide a “free and appropriate education” for all children, there is no such requirement for adults. Therefore, funds and programs for adults may or may not be available at any given time.
Different service availability
Adults with autism often have no legal rights, but may at least have some level of support. If you live in certain states, you will have no trouble getting services and funding for adults with autism. But if you live in other states, you may find support limited.
Some of the states that offer the least generous programs and services include:
- new mexico
- West Virginia
More generous states include:
- the state of Wisconsin
Of course, the definition of “services and funds” varies by need. For example, Medicaid doesn’t provide job training or support — services that are especially useful for higher-functioning adults.
Medicaid may or may not be the source of funding for housing, day programs, and other services.
Easterseals is an excellent source of updated information on state-by-state products. While they do have a strong focus on children, they also include extensive details on resources and services for all ages.
Limited housing options
Americans assume that adult children will leave their parent or guardian’s home and live in their own apartment or house.
Of course, as the economy and other factors change, many of the more typically developing young adults are moving with those who raised them. Not surprisingly, a large number of adults with autism also live with a parent or guardian.
- Accommodation funding for adults with disabilities is difficult to obtain. It is especially scarce for autistic adults without intellectual disability. If your IQ is over 70 or 75, you are assumed to be independent (unless you have a serious physical illness or disability, such as blindness).
- Collective housing is difficult to access and can be of poor quality. Like many adult programs, Group Homes relies on state and federal funding. In addition, staff and residents are constantly changing.
- Even bright, capable adults with autism can struggle to cope with unexpected challenges. Adults with autism have difficulty planning ahead (such as buying soap before they need it), dealing with emergencies (such as a power outage), and thinking problems (such as fixing a clogged drain). Living with a parent or guardian is often cheaper, smarter, and easier.
Information about autism is often child-focused, but most of the time dealing with this condition is in adulthood. While many adults with autism lead comfortable and productive lives, they still experience difficulties in situations that require social interaction or exposure to certain sounds, lights, and smells.
Thankfully, employers are required by law to provide reasonable accommodations to adults with autism, and many states offer some sort of funding and services to help them.
However, support for autistic adults with independent living and access to free and adequate education after age 22 remains limited.
Whether high-functioning or severely autistic, adults with autism work 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 inclusive social environment.
As funding ebbs and flows, they can’t always rely on tax-funded projects. This means that the needs of adults with autism must be met by people in their families and communities who want them well, believe in their strengths, and will take action to improve their quality of life.
Frequently Asked Questions
Where can I learn more about autism in adults?
There are many resources you can use to learn more about autism in adults. Some of these include:
- easter seal
- autism talk
- Autism Institute
- Asperger’s/Autism Network (AANE)
What happens during adult autism screening?
During adult autism screening, healthcare professionals typically observe the patient’s response to different cues, assessing what the patient is saying and how the patient is behaving.
Sometimes, healthcare professionals may ask patients to complete a test that includes questions about social interactions, interests, and behaviors.
Does the employer provide reasonable accommodations for adults with autism?
The Americans with Disabilities Act (ADA, Title I) states that employers must provide reasonable accommodations to employees with disabilities such as autism. These accommodations do not require lower performance standards.
Some workplace accommodations for people with autism may include:
- convey instructions in writing
- Have a designated workstation that is not irritating or distracting
- Ensure an effective shipping plan is in place before work begins