A hopeful future for an overlooked group of the autistic community

Dr. Nathan Call, a researcher at the Marcus Autism Center and member of Autism Speaks’ Autism Care Network (ACNet), is dedicated to tackling some of the most complex and pressing needs of a frequently overlooked segment of the autism community: those with severe and challenging behaviors. Thanks to the transformative Autism CARES Act, policy changes and increased investments in autism research are making it possible for experts like Dr. Call to focus on the urgent needs of children who engage in self-injurious or aggressive behaviors. Now that this important piece of legislation has passed, Dr. Call shares how it has already made a meaningful impact—and how it will continue to improve the lives of autistic people and their families for years to come.  

Many years before I became a researcher at Marcus Autism Center, I volunteered at an orphanage in Egypt where I vividly remember seeing a young girl tied to a piece of furniture, engaging in severe self-harming acts. I later realized that her behavior mirrored what I have seen in some children with autism. Her image has stayed with me, shaping my understanding of the challenges faced by autistic people, including the sometimes dangerous and destructive behavior children with autism can experience. 

During my time in Egypt, autism was poorly understood, as it continues to be in many parts of the world today. This is often why those with severe and challenging behavior remain an overlooked segment of the autism community. However, thanks to ongoing research, driven by legislative support, we continue to improve our understanding and care for this vulnerable population.

The Autism CARES Act is one piece of legislation that has been transformational in producing needed policy changes and investments in autism research and programs. Recently renewed thanks to the advocacy efforts of groups like Autism Speaks and autism centers across the country, the Act’s investment into federal autism research, training and data programs has led to a better understanding of autism prevalence in the U.S., earlier age of diagnosis, improved early intervention services, advanced personalized care for co-occurring health conditions, and training for tens of thousands of health professionals who serve the autism community. 

The Act has also allowed our team at Marcus Autism Center to explore the underlying causes of dangerous and destructive behavior, and develop interventions that are tailored to the individual based on the purpose the behavior serves for them. Our research has contributed to the mounting evidence that alternative means of communication can provide autistic people with new skills and coping strategies that help them better express their needs and reduce chances of harm.

This was the case with one of our patients, a teenager who often had violent outbursts when his mother walked into a room. This patient’s aggressive behavior served as a form of communicating that he wanted to be alone for a moment. In response, we taught him to request privacy and helped him understand that sometimes brief interactions with others are necessary. As a result of the intervention, the time he chose to spend with others gradually increased, not only resulting in drastic improvements in his aggressive behavior, but eventually allowing his mother to reconnect with her son.

In the face of unpredictable, aggressive behavior, families often turn to hospitals, where in recent years, there has been a notable absence of support for autistic individuals. As part of the Autism Speaks ACNet, a network that brings together hospitals and academic institutions tackling some of the most complex and pressing questions about autism, Marcus Autism Center has made strides toward improving the caliber of care for individuals requiring intensive services in specialized settings. We are leading the ACNet’s development of clinical pathways to improve and standardize care in specialized settings to limit the dire effects of dangerous and destructive behavior on the health and well-being of autistic people.

In authorizing approximately $2 billion over five years for federal autism programs at the National Institutes of Health, Centers for Disease Control and Prevention, and Health Resources and Services Administration, the Autism CARES Act of 2024 allows us to build upon this work. Crucially, the Act recognizes that addressing the complex needs of autistic individuals requires more than therapeutic interventions—it demands a systemic approach. Challenges such as navigating insurance coverage, securing reliable transportation and finding stable housing can all significantly impact the efficacy of autism interventions. While past iterations of the Autism CARES Act have paved the way for significant progress, the 2024 renewal promises even greater advancements and opportunity to address these barriers. 

Now, we may learn even more about severe and challenging behavior, explore multi-generational autism interventions, develop evidence-based solutions and implement them on a wider scale. By supporting Autism Speaks’ efforts to disseminate valuable resources to people with autism, drive understanding and promote inclusion, we are moving closer to a future where all people with autism can reach their full potential.