Autism Research: Finding Answers and Improving Experiences and Services

Emily Neuhaus is a psychologist working with families at the Autism Center and a researcher at Seattle Children’s and the University of Washington. In this blog she shares how research improves our knowledge of autism and enhances the lives of autistic people and their families.

Seattle Children’s has a flourishing research community, thanks in great part to the contributions of families and individuals with autism! Autism research supports the entire autism community – autistic people, their families, the clinicians and other professionals who work with them – and benefits society as a whole with its learnings. As a researcher and a clinician working directly with families every week, I see three essential purposes of autism research. 

What positive outcomes does autism research provide? 

First, autism research helps us uncover the variety of experiences, goals, and needs of autistic youth and their families – and to highlight how much these can differ from one person and family to another! The term “autism” includes a whole constellation of different perspectives and experiences, and asking questions through research helps us recognize the uniqueness of each person within the autism community. As one example, our team explored the idea of “social motivation” among autistic children by asking caregivers and children directly using questionnaires. We found that children’s interest and motivation for social interactions and relationships ranged quite a bit, from relatively little social motivation among some participants to levels of social motivation that were similar to neurotypical peers among other participants. Recognizing this variation can help us understand the diversity of experiences and preferences throughout the autism spectrum, and correct assumptions that might not be true for everyone on the spectrum.

Second, in the best cases, research creates a partnership that gives autistic people and their families a place to be heard, and to share firsthand their priorities and needs with clinicians and scientists. This partnership helps us understand what supports and services autistic individuals and their families might want, how the medical providers and others working with them can offer those, and what new resources need to be developed. In the last few years, some recent research has directly asked autistic people and their families what research topics would be most valuable to them. By doing so, that work helped to highlight the need for research on the transition from childhood services to adult supports, mental and physical health, and accessibility of autism services, among other topics.

Finally, autism research helps to clarify the factors that influence development and quality of life for autistic people and their families. For example, research over the past decades has highlighted the role of genetic factors in autism, replacing earlier ideas about autism’s origins. We now know that autism can run in families (when family members have genes in common that increase the likelihood of autism) and it can also emerge without any family history (when certain small genetic changes occur during conception). Research also helps us rule out other factors – like parenting practices or vaccines – that don’t cause autism. As research continues to evolve, we learn more and more about how autism  develops and what factors are part of its development. 

How can I join autism research? 

Families who want to contribute to autism research are welcome – they’re the heart of this work, and there are many ways to get involved.  

• To find research studies that are local to the area, you can check both Seattle Children's and University of Washington websites to look for opportunities for volunteers. You can read about open studies, ask questions of researchers to find out more, and decide whether each study might be a fit for you and your family. 
• SPARK, a national autism research study with a dedicated team at Seattle Children’s Autism Center, is also a great way to join research. Participation can be done completely from home, or with support from our team. Families who join SPARK fill out surveys and share saliva samples. They can also choose to sign up for invitations to other studies that might be on topics important to them. 

What are we learning from SPARK? 

Over 300,000 people have joined SPARK since it began in 2016 (that's an incredible number!) and we’re learning a lot through their contributions!  

One recently published article from the SPARK community explored the idea of special interests among autistic people – strong, focused interests that someone might really enjoy, feel drawn to, or know a lot about. Because autism is identified more often in boys and men than in girls and women, researchers wondered if the number or type of special interests might be different depending on gender. By surveying caregivers of autistic youth, they found that intense interests were common for both girls and boys. Some of the most common interests for the whole group were TV/movies and music, but there were also some differences – interests in animals and arts/crafts were common among girls, while transportation (cars, trains, etc.) and construction were common interests among boys.  Check out a more complete summary from SPARK or the full scientific paper to learn more about this study.