You may not know it, but it is very likely that you know someone with autism.

Over 5 million adults in the U.S. are estimated to have Autism Spectrum Disorder (ASD), according to a CDC study from 2017. That is over 2% of the nation’s adult population.

That estimate could very well be low. 

Over the last few decades, the rate of ASD diagnoses skyrocketed, not because more people were born with autism, but because we got better at identifying the condition. From 2000 to 2020, the proportion of young children identified with autism went from one in 150 to one in 36, according to the CDC.

Barbara Luskin, a licensed counselor with the Autism Society of Minnesota, said she does not expect that spike in diagnoses to continue for much longer, as teachers and other professionals now know what signs and symptoms to look for. 

“My guess is, in the next few years, the number of children diagnosed (with ASD) will stabilize,” Luskin said.

But what caused this dramatic increase in autism diagnoses within the 21st century?

One of the main causes of the increase stems from a changing understanding t of what autism is. Much of the social stigma around autism comes from associations with Asperger’s syndrome, which was an outdated diagnosis that was lumped together with autism under the label of ASD in 2013, according to Cleveland Clinic.

This association led to the idea that autism was an easily recognizable condition with set symptoms when, as the name ASD implies, it is a spectrum. 

“It’s only in the past 30 years that we’ve really been looking at this population of more verbal, more academically-able people and saying ‘Yes, they have the same pattern of learning differences,’” Luskin said. “So, I think if you think about it in terms of that time frame, of course we’re still catching up.”

Despite the developments in ASD classification, much of the stigma around autism can still be seen in society’s views of the condition.

Linden, a first-year student at the University of Minnesota Morris diagnosed with ASD in 2023 and wishes to only use their first name due to personal concerns, said numerous signs of neurodivergence were noticed by teachers and doctors, these signs were handwaved as intelligence due to things like high reading speed and good academic performance. 

“It really felt like they had plenty of signs,” Linden said. “But it was literally just the ‘Nope, she’s smart.’” 

Unfortunately, stigma is far from the only thing keeping people from being diagnosed with autism. Insurance coverage, or lack thereof, can also keep people from starting the diagnostic process.

Luskin said Social Security and many major insurance providers will only pay for ASD assessments conducted by a provider with a doctorate, forcing patients to wait in a backlog for a select few providers.

“I think it is a way for insurance companies to do some gatekeeping,” Luskin said. “I think it’s a financial issue and not a competence issue because I have many colleagues at the masters level who are perfectly competent to do a diagnostic assessment.”

Outside of stigma and institutional issues affecting autism, there are also systemic issues within the diagnostic process that should be addressed. Significantly more boys are diagnosed with ASD than girls due to a gender bias within how autism symptoms are tested for and recognized, according to a study from the National Institutes for Health.

While she acknowledged that times are changing, Luskin said there is still a gender gap when recognizing the symptoms of autism.

“I think, particularly for women, there’s still a lot of ‘Oh, you can’t have autism, you’re a woman,’” Luskin said. 

Wait times for an exam, whether caused by a lack of providers, insurance regulations or other factors, can also be a barrier between patients and an ASD diagnosis. Over 60% of specialized autism centers reported a wait time of over four months, according to a study from the Centers for Medicare and Medicaid Services’ Health Equity Conference.

“If you are not in an emergency situation, it can be up to two years at our clinic,” Luskin said. “There are only so many (examinations) you can do in a week.”

Linden said the diagnostic process, from when they first noticed signs of autism to when they received a professional diagnosis, took around eight months.

“The reason I got it so fast is because a ton of appointments were canceled for some reason before mine,” Linden said. “So, out of luck, I got it pretty quick.”

Long wait times for examinations encourage many patients to search for more information on ASD and effectively self-diagnose, only coming in when they want official confirmation, Luskin said. She also acknowledged that this research and introspection can help with the diagnostic process.

“In those two years, they’ve done a lot of reading and a lot of research,” Luskin said.  “And very rarely do I disagree with them.”

While they were a bit more nervous about self-diagnosing, Linden said the research process was incredibly helpful and reassuring to them during their journey to diagnosis.

“Do your research,” Linden said. “I think it is helpful to use, like, professional sources and keep it all in a document.”

People should not have to wait in doubtful limbo for a diagnosis. We must get better at diagnosing ASD, or many more children and adults alike will struggle alone without realizing why they feel different from everyone else.

From changing insurance coverage policies and speeding up the process to lessening social stigma and closing the gender gap, there are plenty of things that can be done to help those wondering if they have autism.

The key is taking action. 

Educating ourselves on neurodivergence and speaking out on these issues is the least that we can do for our neurodivergent friends, colleagues and family members.

You never know if someone you know is questioning why they think differently.