If you’re in your 40s, 50s or older and suspect that the root of your struggles to get on with people—friends, coworkers, family members—might be autism, you may wonder what’s the point of getting tested now? Maybe life hasn’t been easy, but you’ve still made it this far. What’s going to change now that you’re an adult? The answer is that getting a diagnosis even now can still lead to improvements in your life.
When comedian Amy Schumer publicly revealed that her husband, Chris Fischer, was diagnosed with autism spectrum disorder (ASD) in his late 30s (when they were dating), she also admitted that she wasn’t entirely surprised. “I knew from the beginning that my husband’s brain was a little different than mine,” she explained. Schumer said that she wouldn’t change anything about her husband…but added that the diagnosis provided the couple with tools that have made their marriage and lives more manageable.
What ASD Looks Like
Autism is considered a developmental disability that begins in early childhood and affects a person’s ability to communicate and socialize in the same ways most other people do, as well as other behaviors, such as body movements and interests. ASD is considered a spectrum disorder because manifestation ranges from the extreme of being non-erbal, engaging in repetitive behaviors such as rocking back and forth and needing intense caregiving…to having well-developed language and some skill with social interactions, but with differences being more apparent over time or in close, interpersonal relationships. ASD in people who have reached adulthood without a diagnosis is often mild enough to have escaped earlier recognition…but significant enough to have created problems along the way. In fact, many adults seeking a diagnosis report that they have had trouble in a job or relationship, such as…
• Finding it hard to be flexible. Example: A person may have a hard time adjusting to a new process for getting something done at work, especially if the reason for the change does not seem logical to him/her. In a relationship, it may be hard to change a routine to accommodate someone else’s needs. For instance, if a spouse is sick, the partner on the spectrum may not take over preparing meals or child care if those are not a part his/her routine.
• Being perceived as antisocial. Example: Because noises and smells can be overwhelming to someone with ASD, the person might avoid hanging out in the lunchroom…leading coworkers to think he’s unfriendly. Many people with ASD are very honest when asked for their opinion—such as whether a new haircut looks good—which may be experienced by a romantic partner as rude or too blunt.
• Other areas of difficulty. Examples: Standing too close to other people can give an impression of being weird. Taking too long to answer questions and respond to comments can make someone seem slow on the uptake. Constantly misinterpreting facial expressions and body language or taking words too literally can be confusing and frustrating to family, friends and coworkers as well as to the person with ASD.
Whatever the particular challenges a person with ASD faces, it often feels like he/she has to work much harder than everyone else to achieve the same goals…and as though no matter how hard they try, they don’t have much success.
Challenges of Getting a Diagnosis
Getting diagnosed with ASD can help in a lot of ways. Disclosing your diagnosis to your human resources department and manager can help you get accommodations at your job—such as a written agenda before meetings and a copy of notes taken afterward…adjusted lighting in your work area or moving to a quieter work area…modified work hours to accommodate problems with sleep that are very common for people with ASD. It can also put you in touch with services, including state programs and benefits for people with developmental disorders, such as help with chronic unemployment or underemployment. These services are typically accessed through state vocational rehabilitation departments and may include help with job training or job development as well as counseling for soft skills (such as workplace social skills) and/or co-occurring psychiatric problems.
Perhaps most importantly, a diagnosis can be healing. It can be a relief to understand that your struggles have to do with how your brain has developed. A diagnosis also can validate your experiences and give you a better understanding of yourself—and help family, friends and coworkers appreciate your differences and be more empathetic.
That said, getting a formal diagnosis can be challenging…and frustrating. Here are some of the major difficulties and ways to overcome them…
• Difficulty finding specialists. We know more about ASD than we did 20 years ago, but the focus still is mainly on children. There are fewer psychologists and psychiatrists knowledgeable about how autism spectrum disorders play out in adulthood. Compounding the challenge is that the diagnostic tools are largely based on childhood presentations or more severe presentations in adults. One example is the Autism Diagnostic Observation Schedule (ADOS), a semistructured, 45-minute interaction between patient and specialist. Tools for assessing adults exist, but they require someone who understand the tools’ limitation and can interpret the results in a way that is helpful for adults—instead of misdiagnosing with some other condition, such as ADHD or anxiety, both of which are common and often also present in people with ASD.
Solution: State universities often have autism centers or clinics and might be able to recommend therapists who work with adults. Check in your own state or a neighboring state by googling “university autism center” and the name of the state. Local autism societies also keep lists of specialists.
• A formal diagnosis can be time-consuming and complicated. Besides the 45-minute ADOS and other assessments, a wide range of information from multiple sources helps get an accurate diagnosis. So the psychologist might want to interview other people in your life…especially those who knew you in childhood and adolescence, when ASD behaviors are more evident. Siblings and aging parents may not remember subtle details of a person’s social behavior from 40 or 50 years earlier. Also, even if you find a specialist, you may have to wait several months for an appointment.
Solution: Many people self-diagnose by reading about ASD. The downloadable guidebook for adults from the advocacy organization Autism Speaks is one resource. Knowing how difficult it can be to get a formal diagnosis, the autism community is generally very accepting of self-diagnoses. However, eligibility for services usually requires a formal diagnosis.
• A formal diagnosis is expensive and often is not covered by insurance. Testing for autism in adults can range from $1,000 to $5,000. You may be able to get assistance from your state’s department of vocational rehabilitation if you are unemployed or job hunting. College students may have options through the school’s student health department. University psychology clinics may offer a sliding scale fees for an evaluation…as may individual diagnosticians.
After Your Diagnosis
Once you get your diagnosis, formal or not, it’s up to you how to proceed. Here are some options to consider…
• Find your “tribe.” Look for local and/or national meet-up and support groups. Google “adult ASD, “high-functioning autism” or “Asperger’s” (the latter two terms are no longer used clinically but still used online). Also check into organizations such as your local autism society or the Autistic Self-Advocacy Network (ASAN).
• Find help. Therapists who specialize in cognitive behavior therapy or social skills training can help you navigate particular challenges, such as at your workplace or dating. Someone with expertise in adult autism is best, but a couples’ therapist or any therapist who is caring, understanding and willing to learn about autism is a good alternative.
• Tell people—or not. Whether to disclose your diagnosis to coworkers or family members, especially far-flung relatives you may not see often, is your choice. If you do decide on disclosure, you may be pleasantly surprised by the positive reactions. However, there’s also the risk with disclosing that some people may not believe the diagnosis is accurate, which can add to a person feeling unheard and misunderstood. It can help to disclose your diagnosis first to someone you trust who can talk it through with you and help you decide who to tell and how to respond if the reaction is not supportive.
The great news for the future is that adults with autism are advocating for themselves, promoting that it’s okay to be who they are—and many more people know and care about adults with autism and want to support them on their own terms. Yes, “odd” behaviors such as hand flapping to self-soothe may make some people feel uncomfortable or confused—at first. But hopefully greater public awareness will lead to greater understanding and acceptance.