Autism diagnosis later in life: Why adults still face so many barriers and how we can do better

Many autistic adult clients who come to my organization for counseling do not know they have autism until they are in their 20s, 30s, 40s, or even later. For most of them, learning late in life that they have autism is a deeply rewarding experience. A diagnosis often brings relief, often after a period of grief over not knowing when the trajectory of their early lives will soon change, but it can also open the door to new frustrations.

Despite growing awareness, the road to diagnosis and subsequent meaningful support remains fraught with thorns. These challenges not only affect autistic people; They spread outward, engaging families, employers and clinicians in an attempt to provide effective support.

This group has incredible strengths and skills because of their autism (not in spite of it), and when they don’t get the support they need, everyone misses out on the talents they desperately want to develop. As a result, we all suffer, which is why it's so important to understand and make reasonable adjustments to enable these individuals to thrive.

Diagnostic disorders

For many adults with autism, a diagnosis comes years or even decades after it has been misunderstood, misdiagnosed, or missed. There are several reasons behind diagnostic barriers. The most obvious is the lack of clinician training. I think this is changing, and although progress is slow, most diagnostic tools and professional education are still child-centered. Most clinicians are ill-equipped to recognize autism in adults because they learn to mask their differences throughout their lives, and diagnostic tools used to assess children do not correctly identify autism in adults.

Cost is a common second barrier to adult diagnosis. A comprehensive assessment is the only way to accurately understand how well an individual is functioning, and these assessments can cost thousands of dollars. Insurance companies typically won't pay for adult evaluations, and even if they do, waiting lists can be months to years long.

Because diagnostic criteria are developed around the presentation of autism at a young age, white boys, women, non-binary individuals, and people of color are disproportionately diagnosed because their presentations do not fit diagnostic professionals’ outdated stereotypes of autism.

Many autistic adults have an accurate picture of themselves, but without formal documentation that accompanies the assessment, they often cannot receive work accommodations or qualify for much-needed disability services.

Healing and resource deserts

Let's assume the best-case scenario, a previously undiagnosed autistic adult is evaluated and officially diagnosed with autism. When my son was diagnosed in 2017 at age 8, it felt like the insurance company rolled out the red carpet and offered us a range of treatments—mental health therapy, speech therapy, occupational therapy, and ABA therapy. I was surprised and delighted that there were so many choices.

Adults with autism don’t have this experience when receiving a diagnosis. Most treatment and community programs are designed for children and adolescents. Adult services are fragmented, underfunded or non-existent.

There is a real patchwork of systems in education, employment, health care, and disability services that are siled and adults are left to navigate these systems on their own, often without guidance or coordinators like those provided to us by our health insurance providers.

Like diagnosticians who are unfamiliar with adult autism, many therapists, doctors, and professional counselors lack training in adult autism, leaving clients having to explain their needs to the professionals they rely on.

Adults with autism often report deep feelings of loneliness, but adult-focused peer groups and community programs are difficult to find or limited to urban areas. The system is set up for early intervention, not to support lifelong development.

what needs to change

Improving the quality of life for adults with autism and unlocking their potential so that we all can interests, and the systems around them must evolve on multiple levels.

Medical schools and therapist training programs must include recognition of autism across the lifespan and in diverse populations. It also means these providers must receive insurance reimbursement for the same evaluation and support as children.

Deeper investments in programs funded by the Rehabilitation Act of 1973 to create more effective coordinated care models that combine medical, mental health and vocational supports will reduce the burden on individuals to navigate complex bureaucracies alone.

We need higher education and workplaces to move beyond compliance and create truly inclusive design, from sensory-friendly environments to more flexible communication norms. Employers especially need to be educated on how reasonable accommodations can provide incredible advantages in an underutilized workforce. This is not about charity, but about truly capitalizing on the contribution that people with autism can make.

Late diagnosis is opportunity

Awareness of autism has increased, but we need to move beyond this and towards understanding and acceptance. Real progress depends on how we translate understanding into action – training more professionals, funding adult services and redesigning workplaces and communities so people with autism can thrive across the lifespan.

Every time we reduce barriers, we broaden their path to insight, precision, creativity, and innovation—strengths commonly seen in people with autism. When everyone has the freedom and support to contribute fully, everyone's future is brighter.

Photo: masik0553, Getty Images

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