Late-in-Life Autism Diagnosis: Why Adults Still Face So Many Barriers and How We Can Do Better

Many of the autistic adult clients who come to my organization for coaching didn’t know they were autistic until their 20s, 30s, 40s or even later. For most of them, learning they are autistic later in life is a very beneficial experience. The diagnosis brings relief, often after a period of grief at not knowing sooner when it could have changed the course of their earlier life, but it can also open the door to new frustrations.

Despite increasing awareness, the road to diagnosis and meaningful support afterward remains riddled with potholes. The challenges don’t just affect autistic individuals; they ripple outward to involve families, employers, and clinicians trying to provide effective support. 

As a result of their autism (rather than despite it), this population possesses incredible strengths and skills, and when they don’t receive the support they need, everyone misses out on the talents they desperately want to bring to the table. We all lose as a result, which is why it’s so important to understand and make reasonable accommodations that enable these individuals to thrive.

Barriers to diagnosis

For many autistic adults, diagnosis comes only years or even decades of being misunderstood, misdiagnosed, or just simply missed. There are several reasons behind diagnostic barriers. The most obvious is lack of clinician training. I think this is changing, albeit slowly, but most diagnostic tools and professional education are still centered on children. Most clinicians aren’t equipped to identify autism in adults who have learned to mask their differences over a lifetime, and the diagnostic tools used to assess children do not correctly identify autism in adults. 

Cost issues are a second barrier common to getting diagnosed as an adult. A comprehensive evaluation is the only way to get an accurate picture of how an individual is functioning, and these evaluations can cost thousands of dollars. Insurance companies typically won’t pay for an adult assessment, and even if they will, waitlists can be months to years long. 

Since the diagnostic criteria were developed around the presentations of autism in young, white boys, women, nonbinary individuals, and people of color are disproportionately underdiagnosed because their presentations don’t match the outdated stereotypes of what autism looks like to diagnosing professionals.

Many autistic adults arrive at an accurate self-understanding, but without the formal documentation that comes with an assessment, they often can’t access accommodations at work or qualify for much-needed disability services.

The therapy and resource desert

Let’s assume the best-case scenario, and a previously undiagnosed autistic adult gets an assessment and is formally diagnosed as autistic. When my son was diagnosed at age eight in 2017, it felt like the insurance company rolled out the red carpet and offered us a host of therapies – mental health therapy, speech therapy, occupational therapy, and ABA therapy. I was overwhelmed and delighted to have so many options.

Autistic adults are not having this experience when they receive their diagnosis. The majority of therapies and community programs are designed for children and to a lesser extent adolescents. Adult services are fragmented, underfunded, or simply nonexistent. 

The patchwork of systems that do exist in education, employment, health care, and disability services operate in silos, and adults are left to navigate them alone, usually without guidance or a coordinator like the one offered to us by our health insurance provider.

And just like diagnosticians who are unfamiliar with adult autism, many therapists, doctors, and career counselors lack training in adult autism, leaving clients the burden of explaining their needs to the very professionals they are relying on to help them.

Autistic adults often report deep loneliness, but adult-focused peer groups and community programs are hard to find or limited to urban areas. The system was built to intervene early, but not to support lifelong development. 

What needs to change

To improve quality of life for autistic adults and unlock their potential so we can all benefit, the systems around them must evolve at multiple levels.

Medical schools and therapist training programs must include recognizing autism across the lifespan and in diverse populations. This also means these providers must be reimbursed by insurance for evaluations and support at parity with those for children. 

Investing more deeply in programs funded by the Rehabilitation Act of 1973 to create more effective coordinated care models that integrate medical, mental health, and vocational supports would 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 in particular need education on how reasonable accommodations can unlock incredible strengths in this underutilized workforce. It’s not about giving charity but really leveraging what autistic individuals can contribute. 

Late diagnosis as opportunity

Awareness of autism has grown, but we need to move beyond this into 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 autistic individuals can flourish throughout their lifespan. 

Every time we reduce a barrier, we widen the path for their insight, precision, creativity, and innovation, all strengths frequently found in autistic individuals. The future will be brighter for everyone when every mind has the freedom and support to contribute fully.

Photo: masik0553, Getty Images

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