Autism and Trajectory: Future Outcomes After an Autism Diagnosis

There has always been an interest in understanding outcome trajectories for autistic people. When family and providers notice neurodevelopmental differences and a diagnosis of autism is made, it’s natural to want to know: “What will the future be like?”

There is still not a lot of guidance in the published literature, but what does exist seems to match what we observe in clinical practice. For me, the easiest way to think about it is to generalize into 3 categories, or “trajectories.”

Researchers have called one of these the “optimal outcome” trajectory. This has been loosely defined as individuals diagnosed in childhood with autism spectrum disorder (ASD) who are independent in their home and in the community as adults, and whose core features of autism (difficulties in social communication, narrow interests, sensory differences, etc.) are no longer to the level of “impairing function.” This doesn’t mean autism “goes away.” Features of autism often persist; an individual may still self-identify as autistic and continue to experience co-occurring conditions such as anxiety and ADHD. Studies estimate that 20% of individuals diagnosed in childhood follow this trajectory. This percentage is likely higher if taking into consideration the number of individuals that are diagnosed in adulthood.

On the flip side is a group of individuals diagnosed with ASD who continue to require very substantial supports. Autistic individuals in this group need “24/7” support in adulthood and have a higher likelihood of co-occurring intellectual disability and/or expressive language impairment. Studies estimate this group also in the range of 20% (some more recent studies suggest this number may be higher). The progress for this group is often more subtle although impactful.

The largest group (the remaining approximately 60%) is a middle trajectory, making slow but steady progress with ongoing features of autism, continuing to benefit from community and/or therapeutic supports.

A key point about trajectory for all individuals is how pleasing to see progress extend well beyond age 18. My work is so rewarding because some of the best progress we observe can occur in a person’s 20s. This is important to recognize for individuals, families and our community in general, as we need to keep “fuel in the system” in order to take advantage of this continued neurodevelopmental and maturational progress. Continued opportunities for learning must be maintained even when public school entitlements disappear after age 21.

Another important point is to recognize that numerous factors can influence outcome trajectory. Some of these factors are innate to the individual such as language and social challenges and co-occurring intellectual disability. Other factors such as co-occurring mental health, physical health conditions or challenging behaviors often can become the biggest barrier to optimizing the trajectory. Thankfully, most of these factors we can be influenced in a positive way with appropriate medical, educational and community supports. A person-centered, strength-based approach focused on quality of life can often take individuals on a trajectory where progress continues well into adulthood.

By Dr. Gary Stobbe, clinical professor, University of Washington School of Medicine; medical director, UW Medicine Adult Autism Clinic; director, Adult Transition Services, Seattle Children’s Autism Center

Find resources for navigating the transition to adulthood on our Autism Center Patient and Family Education page and at these links:

• Transition to Adulthood: Getting Started (video)
• Autism and Transition to Adulthood: Overview and Planning Tools (Spanish)
• Transitioning to Adult Healthcare

Is there a topic you’d like us to cover in a future Autism Blog? Send your ideas and feedback to TheAutismBlog@seattlechildrens.org.