Guiding Principles for Early Intervention Autism Research

These 10 guiding principles represent ideas that we believe should be considered in all Early Intervention (EI) autism research. Following these guiding principles will contribute to research and clinical practice that is helps autistic children and their families within the full context of their lives. It can also guide adaptations to existing approaches so that they are more aligned with community expectations and priorities. The principles listed below represent our group’s values and perspectives about autism research and the goals of the EI system.

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Early Intervention Autism Researchers Should...

1. Consider the long-term effects of therapies and supports for autistic children and families 

2. Consider the real-world application of therapies and supports, including a) how therapies fit existing systems and social/cultural contexts, and b) how systems change as children age 

3. Consider the ways that skills in different areas of development “overlap” and influence each other.

4. Focus on understanding uniquely autistic (and/or neurodivergent) ways of learning and developing 

5. Ask autistic people and families about their actual challenges to develop therapies that are relevant without promoting stigma

6. Design strengths-based therapies, diagnostic evaluations, and systems of support

7. Consider the influence of culture on values, caregiving styles, autism characteristics, and development to create culturally-specific and relevant therapies and supports 

8. Consider the influence of biological sex and gender expression and/or expectations on autism characteristics, caregiver-child interactions, and developmental goals 

9. Focus on individualizing therapies and supports based on unique characteristics and family priorities, rather than treating all autistic people in the same way 

10. Consider ways in which different people in the child’s environment (e.g., caregiver, family, peer, provider, and systems-level interactions) influence autistic children’s development

Guiding Principle 1: Consider the long-term effects of therapies and supports for autistic children and families.

EI is when most families learn about autism for the first time. It affects families’ knowledge and attitudes about autism. EI also supports children’s development and their relationships with family members, which can impact them in the future. So, it’s important to know how EI experiences affect family attitudes, child skills, and family-child relationships as children get older. EI should set a foundation for autistic people to live happy, fulfilling lives. We can do this by treating autistic children with respect, presuming competence, and recognizing their unique strengths. Older autistic children and autistic adults can provide valuable insight about the experience of being a young autistic child and the long-term effects of some practices as well. 

Long-term outcomes that are critical to prioritize for children include: Quality of life and well-being, mental health, anxiety, and depression, functional and meaningful communication, autonomy, self-advocacy, coping skills, daily living skills, feelings of belonging and inclusion in their community, and self-regulation

Long-term outcomes that are critical to prioritize for caregivers and families include: Quality of life and well-being, mental health, quality of family relationships, sustainability, advocacy, feelings of belonging and inclusion in their community, and understanding of their child’s changing needs

Guiding Principle 2: Consider the real-world application of therapies and supports, including a) how therapies fit existing systems and social/cultural contexts, and b) how systems change as children age.

EI should be “family-centered.” This means it should support caregiver decision-making, caregiver capacity to support their child, and the child’s participation in daily activities that are important to the family. But current research often focuses on general skills instead of everyday activities. Autism research has also excluded families of color, multilingual families, and others. This means that current practice is not “family-centered” for many families, and does not address skills that are important for all families. Research-based recommendations about service delivery models or “dosages” may also be incompatible with family priorities, which can perpetuate stigma or guilt for families who cannot meet the recommendations from researchers and clinicians. Researchers must also consider different delivery models based on geographic location, local/state-level policies, and family resources and structures. The feasibility and affordability of EI services for different families must also be prioritized to ensure equitable access to therapies and supports. Partnering with organizations that offer scholarships or other forms of access to therapies/supports will help make EI approaches accessible to more families.

The nature of the goals, service delivery models, and eligibility criteria between EI and services provided by Part B of the Individuals with Disabilities Education Act (e.g., preschool settings) is vastly different. This makes it difficult to translate research to real-world settings depending on the child’s age and characteristics, especially for families who cannot access additional services through insurance or out of pocket.

Guiding Principle 3: Consider the ways that skills in different areas of development “overlap” and influence each other.

Research often only focuses on one type of skill at a time (e.g., language or cognition or motor skills), and may even exclude people from studies who have co-occurring conditions or challenges in multiple domains of development. But these skills can affect each other in many ways. Researchers should consider how supporting development in one area affects development in others, in positive and/or negative ways. This is especially relevant given that autistic children in EI often receive services from multiple specialties. Emotional regulation and sensory regulation are two skills in particular that may have wide ranging influences on other skills, such as academic success, and that may be impacted by therapies and skills in other domains as well.

Guiding Principle 4: Focus on understanding uniquely autistic (and/or neurodivergent) ways of learning and developing.

Differences in development between autistic and non-autistic children should not automatically be treated as “deficits” compared to “typical” development. These differences should be used to create therapies and supports that are aligned with autistic people’s natural ways of thinking and learning. For example, more research about ways that autistic people experience sensory input, stress responses, and process language/information will ensure that therapies are individualized with autistic preferences and norms in mind. This can make therapies more efficient, satisfying, and less stigmatizing for autistic people and families. It is also important to recognize that some autistic people may require accommodations to participate and learn in different environments, and these accommodations should be respected as a fundamental right. Individual children and families should be involved in deciding which accommodations and supports are helpful, and the proactive use of these supports will facilitate genuine inclusion of autistic people in therapies, academic and community settings, and other environments.

Guiding Principle 5: Ask autistic people and families about their actual challenges to develop therapies that are relevant without promoting stigma.

Researchers should not consider all developmental differences as challenges to be addressed. But many things may be challenging for autistic people to experience, or families to support, even with accommodations. Researchers should ask autistic people about experiences they consider to be challenging to create therapies and supports that address these challenges in appropriate, non-stigmatizing ways. Importantly, methods of asking about challenges should consider some capacity-building to help community members fully articulate their challenges and concerns. These methods should also be culturally-sensitive to ensure that researchers understand the diversity of challenges and priorities as influenced by social-cultural context. 

Guiding Principle 6: Design strengths-based therapies, diagnostic evaluations, and systems of support

Current supports for autistic people are deficit-based. In other words, children must show evidence of “substantial deficits” to qualify for an autism diagnosis and to be eligible for EI services. The diagnostic process can also be stigmatizing for families as the focus is on what the child is not doing, without consideration of things they are doing. Strengths-based diagnostic evaluations and therapies will avoid a lens of “neuronormativity” in which there is assumed to be a “typical” way of learning and developing that autistic children do not meet. These approaches will seek to understand unique autism characteristics that the child is displaying instead of viewing characteristics as inherently inferior to a “non-autistic norm” (e.g., “child demonstrates intense interest in a few objects,” versus “child demonstrates a limited repertoire of interests and play skills”). 

Strengths-based therapies do not deny that autistic children face challenges. These therapies focus on promoting autistic children’s strengths and using these strengths, and unique ways of learning, to support development in areas of challenge. This includes incorporating a child’s interests in therapy, creating goals and strategies based on existing skills, and individualizing therapies based on each child’s unique developmental trajectory and apparent styles of learning and processing. EI therapies should meet children where they are at and respect their preferences rather than enforcing a standard based solely on adult preferences. This may better support their autonomy and engagement in the therapy process.

Even after a child has a diagnosis, diagnostic and educational evaluations continue to compare them to a “norm” that is not appropriate instead of focusing on ways the child has grown and changed over time. This can be stigmatizing for children and families in a long-term way as the child enters preschool and school-based services.

Guiding Principle 7: Consider the influence of culture on values, caregiving styles, autism characteristics, and development to create culturally-specific and relevant therapies and supports.  

Autism research has primarily included white, monolingual, affluent, English-speaking boys in their studies. The preferences and needs of different racial, ethnic, religious, and cultural groups are either not considered, or only considered as an afterthought for adaptations, when designing and testing therapies. But culture and language influence skill development, parenting practices, and family’s preferences and priorities. So, current therapies may be uncomfortable for some families, and may not address their priorities for their child’s development. Strengths-based, additive approaches to developing therapies rooted in cultural developmental theories will help researchers identify more acceptable and equitable therapies and supports for all families.

Beliefs about autism may also vary for different cultural and religious groups due to cultural and systemic factors. This must be taken into account when developing supports for autistic children and their families, and when educating families about autism. 

Many families face stigma or systemic barriers to accessing services and information due to structural racism and bias based on language, ethnicity, religion, and more. These systemic barriers must be taken into account when first developing and designing supports, not as an afterthought for adapting interventions. Researchers must prioritize the planning and funding of activities associated with designing culturally-responsive and/or culturally-specific therapies (e.g., hiring a professional translator instead of relying on a bilingual member of the team) to ensure they are appropriate.

Guiding Principle 8: Consider the influence of biological sex and gender expression and/or expectations on autism characteristics, caregiver-child interactions, and developmental goals. 

Autism research has typically included cisgender boys in research, and there is less consideration of potential differences in autism characteristics for girls and non-binary people. This has led to biased and stereotypical understandings of autism, which leads to some autism traits being disregarded or overlooked. This also leads to under- or misdiagnosis of children with autism traits that don’t meet stereotypes based on gender expectations. The presentation and recognition of autism characteristics may be influenced by gender and/or gender expectations placed on the child as they are growing up. For example, it is possible that a girl growing up in a culture which encourages girls to be “passive” and “sweet” may be more likely to internalize stress, whereas a boy who is encouraged to “be tough” may avoid expressing sensitivity or sadness and may have more externalizing behaviors. These potential differences should be accounted for in diagnostic and therapy settings.

Guiding Principle 9: Focus on individualizing therapies and supports based on unique characteristics and family priorities, rather than treating all autistic people in the same way. 

EI services should be family-centered, with therapies and goals based on family priorities and unique child skills and strengths. But research standards require all children to be evaluated according to the same criteria. Researchers should use a wider range of outcomes, or more flexible outcome measurements, to produce results generalizable to real-world practice. They should also utilize statistical models that allow for deeper exploration of individual differences, and consider methodologies such as qualitative and mixed-methods research to fully celebrate individual differences and stories of people’s lived experiences. 

Autistic people vary greatly in their communication, sensory, motor, executive functioning, and daily living skills. These may all have an impact on the supports that they would benefit from. Although it is important to understand “uniquely autistic” development and learning, it is vital not to make assumptions about a child’s needs based on their diagnosis.

Guiding Principle 10: Consider ways in which different people in the child’s environment (e.g., caregiver, family, peer, provider, and systems-level interactions) influence autistic children’s development

Children influence, and are influenced by, their environment. When developing therapies and supports, it’s important to consider the ways in which various skills may also be better accepted and supported by people in their environment. Furthermore, the policies and guidelines of the systems in which autistic toddlers receive support also influence their access to appropriate and effective resources, and consideration of systemic change may also be efficient and effective in addressing the needs of autistic toddlers and their families.

Therefore, to best support autistic toddlers, researchers should also consider ways to support caregivers, family members, peers, and providers (e.g., clinicians, pediatricians). These supports should be made accessible to the diverse caregivers, family members, peers, and providers in the child’s environment (e.g., multilingual supports, culturally-responsive supports).