Autism Insights: Honoring Differences and Centering Autistic Perspectives

Simply put, neurodiversity refers to the idea that there are many ways of being, thinking, and experiencing the world. This applies to both autistic and non-autistic people. The neurodiversity movement, started by the autistic community, emphasizes the strengths and differences of this group of individuals. This movement has influenced how clinicians and researchers view and study autism. It has also contributed to greater acceptance.

Autism is one diagnostic label, but it represents many different experiences. For some autistic people, it can be difficult to live independently or even meet their own basic needs. For others, autism is a source of strength, camaraderie, and an asset in their professional and personal lives.

When it comes to services, the goal is not to treat autism itself but rather try to understand each person individually and build supports that fit their needs. This involves considering a person’s unique challenges and strengths—and working with individuals to develop strategies that help improve their lives.

There are no prescriptions or medications to treat autism. Current therapies help people with specific symptoms or problems that interfere with their life. Not every autistic person faces the same challenges, nor do they all experience autism in the same way. To balance this, it is crucial to meet people where they are, avoid assumptions, and honor all forms of autism.

Autism affects many areas of life, including the sensory system, preferences, emotional insight, and social relationships. This means everyone may have some features of autism—but it is appropriately diagnosed when many of these features occur together in one person at one time.

Misunderstandings about what autism is have become more common, with some children and adults being incorrectly labeled as autistic. The diagnostic criteria for autism include interference with daily functioning, but two people with the same diagnosis can have very different support needs. Again, a balanced perspective is necessary.

In terms of causes, research points strongly to genetics as the most important element in the development of autism. In most cases, autism is caused by complex interactions between genes and the environment. We do not fully understand the potential role of environmental factors, which likely act during pregnancy.

Although some people have concerns about vaccines and acetaminophen, strong scientific evidence shows that neither causes autism. Science has helped us to identify some of the brain systems involved, but we still do not know exactly how autism develops.

Many parents want an explanation about what causes autism. If strong evidence showed that something in the environment caused it, clinicians and researchers would warn parents. Scientists want to better understand and answer what causes autism, and we are working hard to accomplish this.

Researchers should account for the perspectives of autistic people to ensure that what they are studying is relevant to their lives. Clinicians should ask whether the supports they are developing for autistic people address areas that matter to them and that they want to use.

At Yale, we have a community advisory council of autistic adults and parents of autistic children. We meet quarterly for open discussion and partnership to ensure that our work aligns with the wishes and preferences of people in the autism community. We ask for input about research ideas, and they advise us on ways to make procedures more comfortable for autistic children.

They also give us guidance on sharing research and clinical opportunities. This has made a real impact on what we do. For example, our discussions with the council led to Autism Community Day, a celebration designed to be comfortable and interesting for autistic people. There’s face painting, board games, food, and demonstrations of how a brain scan works.

In my research lab, we also translate our scientific papers into plain-language abstracts. These article summaries are on our website so that the community can access the discoveries that they helped to generate. Autism research and clinical work are only possible when scientists partner with autistic people and their families. It is so important to acknowledge this, and to offer something in return.

Challenges vary widely by person. For many autistic adults with high support needs, finding a place to live is very hard. Systems are largely engineered to care for children. So, when someone turns 21 and leaves the public school system, it becomes more difficult to find support. This creates great anxiety for parents, and for many autistic young adults.

For people with more moderate support needs, transitioning to adulthood can still be challenging because of the everyday logistics of life. There are no instruction manuals for tasks like dealing with landlords and laundromats. Employment is another major challenge. Even when someone has skills to contribute, parts of the process, such as interviewing, can rely on interpersonal skills that are uncomfortable or challenging for some autistic people.

Many adults, autistic or not, also receive substantial support from their parents. Over time, as parents age, they may no longer be able to provide support. Siblings can end up in a unique role as caregivers. This can be challenging if caregivers are not adequately supported or informed about their sibling's needs or available resources.

Programs that support life-skill development are important for all these reasons. Experts in the field are learning to not assume outcomes, though. What matters is that a person is fulfilled, and independence is maximized. This can mean different things for different people. We are working toward more individualized ways of defining goals and outcomes for autistic adults.

One very simple and important thing we can do is listen to autistic people. We can be flexible and nonjudgmental. Judgment can be discouraging for parents and outright harmful for autistic adults going about their lives. We also need to focus not only on helping autistic people fit into the world, but on adapting the world so that they can thrive.

We can keep an open mind and avoid assumptions about what autism means for an individual. Some people describe their autism as a beautiful contribution to diversity. There are substantial challenges for others. It is important to keep in mind that autistic people enrich the world and the lives of those around them in different ways.