Researchers often treat autistic people like a mystery to be solved. They rely on their perceptions of our behaviors to find ways to help or even “fix” us. This has resulted in therapies that are uncomfortable to experience, that target goals that some of us don’t think are important, and that have had some negative long-lasting impacts that have been disregarded because of “favorable” short-term outcomes. Partnering with us will help you understand how your therapies are experienced by autistic people, and the actual effects of these therapies on our whole selves–not just the goals you measure–in short- and long-term capacities. It will also ensure that the methods, therapeutic approaches, and goals targeted in research are important to the community. Including community members at every stage (including the initial stage where the project goals are still being decided) would be a way to ensure that the time, energy, and dedication of the research community becomes a force for good by focusing on the most important issues facing autistic people and caregivers.

Caregivers also play an important role in developing effective therapies for young autistic children. Research and clinical practice tends to treat all caregivers in the same way. But we all have different priorities and preferred ways of interacting with our children, and we have our own strengths and challenges as well. A lot of us face judgment from our child’s clinicians and from the other people in our lives and communities. Many of us are learning about autism for the first time. Some of the things we’re told to do for our child may be uncomfortable. In some cases, this may be healthy discomfort which is part of the process of learning about autism. But in other cases, the discomfort occurs because the therapies and supports we’re told are best for our child are not realistic for us to use in our daily lives, or because they are misaligned with our cultural background, needs, values, or other aspects of our lives. The insistence on using these uncomfortable or impractical therapies can create additional guilt or stress. Researchers need to work with caregivers of diverse perspectives and experiences to develop therapies we will actually be able to use with our child. 

Researchers should also include autistic caregivers of autistic children, who have insight into their own personal experiences as well as the experiences of their child. Autistic caregivers may have unique needs that are not met by supports created for non-autistic caregivers. And, they may have valuable perspectives that non-autistic caregivers would benefit from knowing more about.

You can engage with community members for insight on your study procedures like participant recruitment, survey creation, assessments and more. Autistic people and caregivers can help you create methods that are inclusive of diverse experiences (e.g., sensory differences) that could impact the satisfaction of autistic children and family members participating in your study. Community members can also contribute new and important interpretations of your results. We may have insight into alternative ways to make meaning of expected or unexpected patterns in the data that are only apparent given our personal experiences.  

Research and clinical practice are rooted in its social-cultural context, meaning they may also perpetuate biases present in the culture (and it may contribute to these biases, too). It’s important that your research actively combats these biases. Efforts to overcome these biases not only make your research better, but they also help your community partners feel safer contributing. You should make sure that your community partners are also aligned in these goals.

Research in this field should have an application that will help our community in the way we want help. You should only be in the field to genuinely understand autism and create enriching, meaningful supports for autistic people. You may have entered this field to fix “problems” that you’ve been told exist, and there are indeed many barriers and challenges that do need to be addressed by research. But many of the problems centered in autism research don’t reflect the actual priorities of autistic people and families. For example, some repetitive movements were once considered a nonfunctional behavior to be eliminated, but many autistic people find these movements to be beneficial and calming. Engaging meaningfully with the autistic community, and the diversity of experiences and perspectives within the community, is critical for understanding what challenges are actually prioritized by the community. If you have not meaningfully engaged with people from the community to understand the challenges we actually experience, that’s a sign that your research may not be aligned with community perspectives. Similarly, you should want to partner with us to make your research more applicable and relevant to our lives. You should not engage with us if you only want to use our experiences to further your own agenda, make your own studies more effective (e.g., using our community relationships for recruitment), or to fulfill some sort of grant or publication guideline.

Taking efforts to make projects inclusive from the beginning, instead of putting accommodations into place after the project begins, can make your community partners more comfortable. It shows that you’re dedicated to including our whole community. It may also make us more comfortable asking for additional accommodations if needed. You should also take time to ensure that all your community partners understand the value of accommodations to ensure mutual respect between your partners. For example, providing basic education to your community partners about stimming and sensory processing may help non-autistic partners understand why an autistic community partner may wear noise reduction headphones, use vocal or motor stims, communicate and/or participate in less conventional ways, etc. These accommodations will not only spread a message of respect and acceptance but may open the doors for participation to people who are often excluded from the research process, such as those with disabilities, medical disorders, and mental health challenges.

Many of us haven’t been part of the research process before, so it may take us some time to get used to it. Researchers have treated many people in our community poorly in the past, so it can take some time to build trust. Additionally, some of us may require support to navigate some social situations or situations that cause anxiety and stress. If you do not have the tools to communicate with autistic and neurodivergent community partners, this will make us much less comfortable contributing to the research process.

We can’t be equal partners in the research process if we don’t know how research works. Teach us about the methods in a research study, the grant-writing process, and the politics and logistics that underlie research so we understand the limitations and areas for growth in research.

No two autistic people are the same, and no two families with an autistic child are the same. It’s important that you don’t only collaborate with people who share the same beliefs and background as you, and also keep in mind how to combat beliefs and practices that may actively cause harm to autistic people of all identities (as will be explained later in the tool). Community engagement is critical to expanding research to be more inclusive. There are many members of our community who are excluded from research more than others (for example, autistic people with intellectual disabilities). Take special attention to include people with multiple marginalized identities in the research process and know that this could mean using different methods of engagement for different people.

Community partners may not always agree with you, or with each other. It’s important that you don’t get too defensive if someone challenges your opinion, especially if that challenge is in an area in which you are relatively privileged. You should take time to reflect on why your opinions differ. Reflecting on the underlying worldviews and social-cultural contexts influencing people’s perspectives can help you navigate disagreements and find a solution that helps you set and achieve shared goals. Being open to new opinions and perspectives will 1) reduce prejudices and disparities perpetuated by current research and 2) open the door to new avenues for research that may result in innovative methods for addressing a wide range of priorities. You should also have processes in place to handle disagreements between community partners to ensure everyone is comfortable sharing their opinions and has space to contribute to the project.

You may know more about autism from a research perspective, but there have been many problems in autism research that have led to skewed and incomplete pictures of autism. Autistic adults should be a primary source of knowledge about the experience of being autistic because we live it every day. Caregivers of autistic children should be a primary source of knowledge about the experiences of raising autistic children as we live it every day. Acknowledge and respect our realities as we express them and use this to create therapies and supports that address these realities.  

Our children are not problems to be fixed. They are not just your sources of data; they are people who can be affected by the procedures of your research study, and it’s important to prioritize their well-being over the fidelity and validity of your study procedures. We must appreciate the inherent rights of autistic children as human beings and understand that even if their experiences and preferences are different than what we would expect as adults, they are worthy of respect. Additionally, their happiness and well-being are affected by a lot more than their proficiency in the skills you measure in your studies. Supporting autistic children is therefore more than just helping them develop skills by whatever means necessary. There are no skills worth acquiring if it is going to compromise mental health and well-being. Additionally, presume that all children can think, learn, and feel, even if their ways of doing so look different than other children (whether autistic or not). Also, you should take caregivers seriously in our judgment of what our child can do or understand. 

Autistic children also have important experiences that should be considered when developing and testing therapies. Although autistic toddlers may not have the skills to express the nuances of their experiences, you can look for indicators of distress/happiness/assent/etc. You can make efforts to engage with older autistic children to understand the impacts of therapies as well.

Everyone makes mistakes, even those with a lot of experience in community engagement or who are completely dedicated to transforming autism research. Continuously gathering feedback from your partners, incorporating that feedback, and being transparent about your mistakes will help to maintain your relationships with community partners even when you make a mistake. Also understand that many of us have been wronged by researchers in the past, so we may need a bit more time or effort to regain trust that was potentially lost. We would rather you try in earnest to work with us and grow from mistakes, than to continue to exclude us from the research that impacts our community.