Examining the Impact of the Autism Diagnosis

Brenda Dater, MSW, MPH

Brenda Dater, MSW, MPH

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of Parenting Without Panic. Brenda is a mom of three, and her eldest is an Autistic transgender woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

In 1999, my 3 year old daughter was diagnosed with what was then called “Asperger Syndrome.” The developmental pediatrician and neurologist both said she had “shadow symptoms” of “Asperger’s.” They explained that they expected her to no longer qualify for a diagnosis with the help of speech, physical, and occupational therapies, although they were not sure how long that would take. 

I was reminded of this recently because of a study published in the Journal of the American Medical Association (JAMA) Pediatrics that suggests some school aged children who were diagnosed as Autistic when they were toddlers no longer qualified for the diagnosis by early elementary school. The study looked at 5-7 year-old children who had been previously diagnosed as toddlers, and the children more likely to no longer qualify for a diagnosis had either stronger baseline adaptive skills or were girls. I am concerned that the study’s findings may be misinterpreted and negatively impact our society’s understanding of autism as well as a child’s access to the supports and services they need now and in the future.

Autism is a neurotype – a type of brain or how someone interprets and understands the world around them. At AANE, we work with families and individuals across the lifespan. Autistic children can look very different depending on the environment, activity, and people they are interacting with. The way their Autistic traits manifest can also change as they get older, and they can develop skills to help them navigate the world. However, the type of brain they have doesn’t change. 

I worry that Autistic children and adults are often expected to carry the burden of getting along in a world not designed for them. Autistic children learn what is expected of them and what is tolerated, and sometimes with extraordinary effort, they learn to diminish or mask their Autistic traits in order to avoid things like bullying, exclusion, or punishment. They learn to function in a world that is filled with hidden rules and sensory stressors, which often takes a tremendous amount of energy to navigate. It can also cause a person to be hypervigilant about how they behave and speak, which can create anxiety. No longer qualifying for a diagnosis might be due to a child learning to deny or hide their Autistic traits and needs. We hear from families and individuals who have had their diagnosis or their child’s diagnosis called into question or removed, and it can lead to years of invalidation and lack of access to crucial services and supports. 

When young children receive an autism diagnosis, many parents and caregivers feel overwhelmed at the variety of information available about how to help their child. They often reach out to AANE wondering what an autism diagnosis means for their child’s future. Understanding their child’s emotions, behavior and sensory needs through an autism lens can help them respond with compassion and practical support. But the study’s findings could be easily misinterpreted and lead parents and caregivers to shift away from using the proactive strategies and accommodations their children need, and instead focus on diminishing Autistic traits so their children no longer qualify for a diagnosis. Removing the diagnosis means stripping away supports that make navigating the world easier for our children. This could be harmful and set back years of progress in understanding and accepting Autistic individuals. 

Our diagnostic tools miss people – particularly individuals of color and girls. They were not developed with cultural or gender diversity in mind, nor are they equipped to see behind the masks that Autistic individuals have consciously or subconsciously created out of necessity. These shortcomings often lead to misdiagnosis or delayed diagnosis. Parents of any young child who does not present Autistic traits in the very specific way the current diagnostic testing identifies may experience greater barriers to access services, and have to continuously respond and correct damaging assumptions about their child from the outside world. 

As for my daughter, she gave me permission to share that at 27, she is 100% sure she is still Autistic. Having that knowledge means that she is aware of how her social interactions, sensory experiences, and focus on tasks is influenced by being Autistic. She shared that this self-understanding is helping her learn to accept herself and be less self-critical, especially when she feels worn out by social interactions or forgets to follow up on tasks. And she also feels a sense of belonging when she finds people and activities, like her support and social groups, where her experience is shared by so many other Autistic Trans women.

The fear I have for people who are told they no longer qualify for an autism diagnosis is not only that they will likely lose access to needed support and understanding from others, but that they will miss out on what my daughter has found: the feeling that they are not alone, having others who understand what their life is like, and knowing they belong.

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