By Nikhil Chandran on December 12, 2024

Last updated May 20, 2025

Imagine that you were a parent in the 1990s and your child does not respond to their name by the time they’re 9 months old.¹ You suspect something is wrong, so you take them to the doctor. The doctor says that this is a sign of obsessive-compulsive disorder (OCD).*² However, you later find out that it is not. This frustrating situation is what many parents of children with autism experienced during this decade. 

Even though I wasn’t born in the ‘90s, as a person with autism, I was very disappointed upon learning about this. Although I don’t know if I was misdiagnosed or not, I know that the system to diagnose autism is much better than it was 3 decades ago.

Now, I’m sure if you have ever come across the estimated 2.21% of adults who have autism (as of 2017; according to an April 15, 2025 article from the CDC), you might understand the lack of support they received based on their misdiagnosis; some of them were probably born or diagnosed in the ‘90s.  

Which is why today I want to share with you three reasons how, exactly, autism diagnoses were bad in the 1990s. 

First, let’s talk about the fact that there was less awareness and understanding of autism among doctors.  

The primary sources of information for doctors back then were medical literature, training, and professional development; however, these methods weren’t always great at communicating information about this disability.  

To give you an example, one source they used is a diagnostic training manual called the DSM-III-R.  

Released in 1987, it introduced the “standardization of diagnoses”, or the process of creating consistent and uniform criteria for diagnosis, which clinicians could use to properly diagnose autism, according to an April 1, 2025 article from Verywell Mind. Some of these criteria were the qualitative impairments in reciprocal social interaction, impairments in communication, and restrictive interests/resistance to change and repetitive movements.³

A major drawback of these criteria was that they were too broad, often including a wider range of behaviors and symptoms. This meant that more people, including those with intellectual disabilities, were diagnosed with autism based on the criteria, leading to higher rates of false positives.

Additionally, diagnostic practices varied greatly among providers.  

There was no consistent set of tools to diagnose autism, so different doctors relied on various methods, such as observational assessments, parent interviews, or past developmental histories.  

Unfortunately, these methods often relied heavily on subjective assessments made by the doctor. Without consistent criteria, these assessments could be based on the doctor’s own experience, bias, and understanding of autism, which could not be very good.  

Next, let’s talk about the stigma surrounding autism.  

Autism has been widely misunderstood since Dr. Leo Kanner first described it in 1943, according to an August 11, 2024 article from NeuroLaunch. This could be due to people often exhibiting behaviors that are different from societal norms (such as avoiding eye contact, hand-flapping, rocking, or spinning), as well as facing challenges in communication and social interaction.  

One myth that probably spawned from these misunderstandings is that autistic people lack empathy.  

This is not true, as autistic people might express or process empathy differently than neurotypical people, according to a March 30, 2023 article from Medical News Today.  

For example, research from 2021 shows that autistic people have fewer theory of mind (ToM) thoughts, which is the ability to understand that other people’s thoughts and emotions might be different than their own, according to the same article.  

Another myth is that autism is caused by a “refrigerator mother”, which is the myth that autism is caused by a lack of warmth from the mother of the autistic child. In other words, this mother is “cold”, like a refrigerator.  

This is also not true, as genetic and environmental factors are likely to be responsible instead of cold and unloving mothers, according to Goally, a company supporting neurodiverse kids with specialized tools.  

In fact, according to another August 11, 2024 article from NeuroLaunch, neuroimaging studies have revealed structural and functional differences in the brains of autistic individuals, furthering supporting the fact that autism is a brain condition rather than a CMC (“cold mother” condition).  

Finally, let’s talk about the socioeconomic and racial disparities affecting autism diagnoses. 

We usually hear about these topics in education and healthcare, but very rarely do we hear about it in relation to autism diagnosis. This is because the factors contributing to these disparities are complex and multifaceted, often involving systemic issues. Even though this speech covers the 1990s, these issues continued to persist into the 21st century. 

To give you an example, let’s focus on the 10 years between 2006 and 2016.

According to a study published in JAMA Network, which surveyed 4,050 children aged 8 years with autism in 4 New Jersey counties during this time period, only 1,887 of them participated in early intervention programs (EIPs), which are mandated by Part C of the Individuals with Disabilities Education Act (IDEA) of 1990.* Children from underserved communities were less likely to receive EIPs.  

These findings suggest that many children are not receiving the support and services they need because of their socioeconomic status in society and are more likely to struggle academically.  

Now, let’s focus on the racial disparities that are affecting autistic people, particularly African Americans.  

According to the same study, out of the 1,887 participating EIP children, only 801 (19.8%) were “non-Hispanic Black”.  

This is concerning, as approximately 20.23% (269 out of 1,330) of children diagnosed with autism are “non-Hispanic Black”, according to another study published in JAMA Network. As already discussed, these children are more likely to struggle academically if they don’t receive EIP services.  

I’ve given you three reasons why autism diagnoses were bad in the 1990s.  

Now, you’re probably wondering why I’m telling you all this. Well, it’s because I want you to understand the struggles we go through every day. We are not people to be ignored or shunned, we have feelings; we have ideas; we want to make the world a better place. And we want to make sure that you feel seen and cared for, just like the rest of us.  

So the next time you meet someone with autism, talk to them! Get to know them! Make sure you respect them, and maybe, just maybe, they’ll return the respect to you. It might not sound like much, but you’ll feel proud knowing that you have made a real friend for life. 

Remember, we are not invisible, and we never will be.

Additional Resources

Check out this link if the above videos interest you and you want to learn more about what autism was like for kids and their parents during the 1990s.

¹-Summarized from https://www.cdc.gov/autism/signs-symptoms/index.html

²-Autism and OCD are two very different conditions, but they share some overlapping symptoms.

³-Summarized from https://pmc.ncbi.nlm.nih.gov/articles/PMC8531066. Thank you to my professor for finding this for me!

*-denotes a source that was not part of the original MLA sources I used for this blog post