By Emily Leclerc | Waisman Science Writer
Working to better understand, diagnose, and treat co-occurring autism and ADHD
Note: Both the Li Lab and Travers Lab use identity-first language in response to the growing preference for that language in the autism community. Both Felix and Erin prefer person with autism, so person-first language will be used when referencing Felix.
Felix Benton is a bright and bubbly eight-year-old with more energy than he or anyone else knows what to do with. “Fe (Felix’s nickname) likes to say that he has energy boxes up to Mars,” Felix’s mom, Erin McConnell, says. Constantly bouncing around and looking for something to get into, Felix is a ball of love, curiosity, and enthusiasm. He is currently just a little bit obsessed with engineering and science and spends a lot of time asking questions about how things work.
“He always has these deep questions right before bedtime. They can be about the day or about something ‘sciencey’ he has learned or even just what if things were this other way,” Erin says. Felix is a smart and vivacious kid with no fear of being his true self. “He is so himself like in how he dresses, how he acts, how he speaks, how he finds humor in things. He is just such a gift,” Erin says.
Felix bounces through life with an eagerness all his own. He also has to work through some challenges that not all kids face. When Felix was younger, he was diagnosed with autism and ADHD. This combination can present unique challenges in day-to-day life for Felix.
Autism symptoms can vary greatly in both severity and presentation as they exist across a spectrum. According to the Centers for Disease Control and Prevention (CDC), “Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have [issues] with social communication and interaction, and restricted or repetitive behaviors or interests.” Similar to autism, ADHD is also a neurodevelopmental disorder that originates during childhood and is characterized by developmentally inappropriate levels of either inattention or hyperactivity and impulsivity, says James Li, PhD, Waisman investigator and A. A. Alexander Associate Professor of Psychology and Psychiatry.
Autism and ADHD actually co-occur rather frequently. It is estimated that 40% of children diagnosed with autism will also be diagnosed with ADHD. On their own, autism and ADHD can heavily impact a person’s day-to-day life. But diagnosed together, the two can exacerbate the other’s symptoms, adding even more barriers and challenges than a single diagnosis.
“Having ADHD alone can be impairing. One of the hallmarks of having it is that the individual has a hard time with either being attentive to things they need to be attentive to or they are hyperactive and can’t sit still. That can cause school-based difficulties, peer relationship difficulties, and even familial problems,” Li says. “For an autistic child, they might already have a harder time in certain situations or certain social contexts. Then you add ADHD symptoms on top of it – like the inattention and hyperactivity – and that just exacerbates their abilities to regulate and benefit from social interactions with others.”
And on top of all of that, co-occurring autism and ADHD is poorly understood and very understudied. Autism and ADHD could not even be diagnosed together until 2013. Up until then, the diagnoses were considered mutually exclusive – if you were diagnosed with one then you could not be diagnosed with the other. This made it virtually impossible to receive funding to study the two together. When the guidelines finally changed in 2013, the research was far behind and has spent the last decade trying to catch up.
There are also no standard treatments for the combination of autism and ADHD and many treatments currently available are less effective when both conditions are present. “We’ve seen, based on some data collected over the last several years, that when you give an ADHD treatment to an autistic child it is not going to have anywhere near the same efficacy as giving that treatment to a child without autism,” Li says. The psychosocial interventions used to treat autism also seem to be greatly affected by the child also having ADHD. Currently, there are no evidence-based psychotropic or psychosocial interventions and treatments for kids with autism and ADHD.
This makes it even more difficult for clinicians, school teams, and family members to figure out the best ways to support kids with both diagnoses. It has taken Erin, and the rest of Felix’s family and support team, many years to help him build and implement strategies to make it easier for him to navigate the world with many ups and downs throughout his life.
This lack of information on autism and ADHD co-occurrence not only leads to kids facing more challenges and struggles but also ineffective treatments and therapies. That understanding was the impetus behind why Li and Brittany Travers, PhD, Waisman investigator and associate professor of kinesiology, decided to launch the University of Wisconsin Longitudinal Imaging and Neurogenetics in Kids Study or UW Link Study.
The study’s goal is to investigate the biological underpinnings of co-occurring autism and ADHD in order to understand why the two occur together so frequently. “It seems like there has to be some type of biological aspect to this that we can hope to better understand through this project. Then we can better conceptualize what is co-occurring autism and ADHD and also hopefully have targets to be able to think about whether there are ways we can ameliorate some of those features,” Travers says. Li and Travers are working to lay the foundation for future work into developing more effective treatments, therapies, and interventions.
Felix is a participant in the UW Link Study and Erin says he looks forward to every visit. He is absolutely thrilled to be involved with science and gets even more excited when the researchers ask him questions about himself. Erin knows that the study’s results, once it concludes, may not help Felix right now but it will be able to help all of the future kids who get diagnosed with autism and ADHD.
“I think about how difficult a lot of Felix’s experiences have been and will continue to be. But he is making the choice to be part of a study that helps us understand what is going on, provide more resources for the future, and develop language for how the neurodivergent experience interfaces with the world,” Erin says. “As the discourse gets more open, and everyone at Waisman continues their amazing work, if we can kind of pay it forward and push those benefits into the future, we would all be really excited and grateful for that.” The Waisman Center isn’t the only place researching ADHD and autism either. Work is occurring around the globe to further our understanding of the two conditions and how best to provide the support and resources that the kids need.
Alongside this boom in research, the diagnostic process for autism, ADHD, and related mental health conditions is seeing change as well. Typical diagnoses are done by following the guidelines set out in the DSM (the Diagnostic and Statistical Manual of Mental Disorders), which is the handbook used by healthcare professionals throughout the U.S. The DSM outlines the symptoms and criteria for an official diagnosis. The criteria are very straightforward and do not consider the variances and nuances of mental health. This system can be challenging for individuals with conditions that are on a spectrum – such as autism and ADHD – where individuals very often may not fit neatly into diagnostic boxes.
“We can’t just put people in arbitrary categories based on do you have six or more symptoms of this condition. If it’s six, great you have it. Oh, but you only have five? That means you don’t have it. Its arbitrary and doesn’t make sense biologically,” Li says. “The person with five symptoms may still be impaired and struggling and the way we define it makes all the difference in the world. It’s the difference between whether that person with five symptoms gets supports and resources or doesn’t.”
To address the DSM’s limitations, a consortium of researchers proposed a new diagnostic method – HiTOP. HiTOP stands for the Hierarchal Taxonomy of Psychopathology and focuses on dimensional views of conditions rather than categorical.
“The fundamental goal of HiTOP is to shift the narrative that mental disorders are discrete categories that people fit neatly into. Instead, we want to think about where individuals function across different dimensions of mental health. It’s all about the gray areas and where people fall on them,” Li says.
HiTOP would allow clinicians to look beyond a black and white label to the full gamut of symptoms to see the individual’s challenges and successes. Then treatments and therapies can be targeted to a person’s greatest needs rather than a generalized approach. HiTOP better represents the large variation seen in mental health and human diversity. While not currently used in clinical settings, Li is one of many researchers talking and educating about HiTOP to hopefully make it a diagnostic option in addition to the DSM. It could improve clinicians’ ability to help kids with autism and ADHD because they can more specifically determine where the child may need help and where they don’t. It would also help loosen the constraints seen in DSM diagnoses and potentially aid more kids in getting the necessary supports.
Today, Felix still has struggles in school and at home even with a robust IEP (individualized education plan) in place. His co-diagnoses present him with challenges and they likely will for the rest of his life. But none of that stops him from living life to its fullest, being an absolute bundle of joy, and a delight to be around. While having the diagnoses are helpful for navigating the system, having language to more accurately discuss his experiences, and getting him the access to the supports that he needs, Erin emphasizes that they don’t place a lot of stock in those labels. They are just words after all. Felix is so much more than his diagnoses and he should be recognized as such. “People who have ADHD and autism are often incredibly creative and empathetic. They can make really unique connections, provide different insights, and make amazing friends. They can have quite the sense of humor too. And sometimes people forget that these are qualities that neurodiverse people can have,” Erin says. “Felix embodies all of that and is just so himself and that is such a
great gift.”
So, while the research works on developing a better understanding of co-occurring autism and ADHD and HiTOP works to improve the diagnostic process, Felix will continue to throw himself off playground equipment, ask a million questions, wonder why things work they way they do, and be a bright effervescent kid. Erin and the rest of Felix’s family will follow his lead, doing everything they can to help him have the best life possible. ■