Research FAQs

Profound autism describes autistic people with the most significant support needs — generally those who are minimally verbal or nonverbal, have a significant intellectual disability, and require 24/7 care throughout their lives. The term was introduced by the 2021 Lancet Commission on the Future of Care and Clinical Research in Autism and given a similar definition by the CDC's 2023 prevalence study, which found that roughly 1 in 4 autistic people meet the criteria. Until recently, researchers didn't have a shared, precise definition to work from, which made it hard to compare findings across studies or build reliable evidence. That's why Profound Autism Alliance supported the development of a Consensus Research Definition (see below) — better research starts with a shared language.

As the definition of autism has broadened, most autistic people today can speak for themselves, and many have become active voices in research. They've advocated for studies on the issues that matter to them, and researchers have responded by designing studies around their needs. That's a good thing. But it has also meant that many studies now rely on surveys, lengthy assessments, or verbal feedback, which can unintentionally exclude people who are nonspeaking or have an intellectual disability.

Consent adds another barrier. Many people with profound autism can't give informed consent on their own, so a parent, guardian, or other legal representative must consent for them. That requires extra review and safeguards, and some researchers choose to avoid it by limiting studies to people who can consent for themselves.

One review found that only about 6% of participants in clinical autism research had an intellectual disability (Russell et al., 2019). When people with profound autism aren't included or clearly defined in research, service systems fail to plan for their needs, workforce training doesn't prepare clinicians for real-world challenges, and funding and policy decisions lack reliable evidence.

Developing a Consensus Research Definition for Profound Autism Using a Modified Delphi Method (Siegel, Lord, Tager-Flusberg, et al., Molecular Autism, 2026) establishes a definition researchers can use to study profound autism consistently. It builds on the 2021 Lancet Commission report, which introduced the term, and the 2023 CDC prevalence study. When researchers use the same definition, they can compare findings across studies, better understand health and support needs, evaluate treatments, and build the evidence base needed to improve healthcare, services, and public policy. A robust body of research is needed in order to ensure that a potential diagnosis is considered in upcoming DSM updates.

Anyone connected to someone with profound autism: parents, siblings, other family members, friends, or self-advocates. The Get Involved in Research sign-up form asks for your relationship to the research participant along with basic contact information.

No. Answering yes to being contacted does not mean you agree to participate in any specific research study we mention — you're simply asking to be notified when relevant opportunities come up.

Yes, you can opt out at any time.

Yes. Profound Autism Alliance was founded on the belief that autistic people who require lifetime, 24/7 care can and should be included in research, and we work to support researchers who are committed to meaningfully including this population. Several studies currently listed on Studies Recruiting Now are designed specifically for minimally verbal or nonspeaking participants and their families — for example, studies on brain response to language in children who use few or no spoken words, and on treating self-injury and aggression in people with high support needs.

It depends on the study — compensation isn't standard across every listing. Some studies currently on Studies Recruiting Now offer compensation (for example, a gift card for completing surveys and a game-based task, or compensation plus travel/lodging/meal reimbursement for in-person visits), while others don't mention compensation at all. Check the details on each individual study listing.

A remote/online study can be done from home — through surveys, video calls, mailed equipment (like a sleep headband or saliva kit), or online tasks — with no travel required. An in-person study requires visiting a study site, such as a hospital or university lab, for assessments like EEG recordings, medical exams, or in-person interviews; some studies offer a hybrid option with both an at-home portion and optional in-person visits.

Visit Studies Recruiting Now and filter by participation type (remote or in-person), region, life stage, or keyword to find studies that fit your family's situation. You can also sign up on Get Involved in Research to be contacted when new opportunities open in your area.

Researchers submit their study through our Submit a Study form, which asks for IRB approval documentation, eligibility criteria, and a set of questions about how the study will be made feasible and accessible for people with profound autism, what ethical, participant-centered approach the researchers are taking, what tangible benefits the research offers this population, and how the researchers have engaged with the profound autism community. Profound Autism Alliance reviews each submission and, if appropriate, shares it with community members who've asked to be contacted about research opportunities.

An Institutional Review Board (IRB) is an independent committee that reviews research involving human participants to make sure it meets ethical and safety standards. We require a copy of a study's IRB approval letter as part of the Submit a Study process so that any study we share with families has already been reviewed for participant protection and ethical conduct.

Complete the form on Submit a Study. You'll provide submitter information, study details (title, site, principal investigator), recruitment information (dates, remote vs. in-person, region), your IRB approval letter, a plain-language summary for potential participants, and answers to a set of additional questions about accessibility, ethics, and community engagement.

You'll need: your IRB study/protocol approval letter; the study's eligibility criteria (ages, genetic backgrounds, participant types you're seeking); recruitment start and end dates; whether participation is remote or in-person (and where, if in-person); a summary of study procedures, goals, and time commitment written for potential participants; and written responses covering how your methods are feasible and accessible for people with profound autism, what accommodations you'll provide, your ethical/participant-centered approach, the tangible benefits of your research for this population, and how you've engaged the profound autism community throughout the research.

We review each submission for IRB approval and for how well it addresses accessibility, ethical practice, tangible benefit, and genuine engagement with the profound autism community, then share studies that meet these standards with community members who've opted in to be contacted about research participation. 

The IMPACT Network is part of ARIA (Aligning Research to Impact Autism), a research initiative with a strong focus on profound autism. It brings research sites around the world together to share tools and methods, so promising discoveries can move into clinical trials faster.

PAA does not fund ARIA or the IMPACT Network. We promote ARIA's work, connect families in our community with its researchers and studies, and serve on ARIA's Community Advisory Committee to make sure the profound autism community is heard.

The IMPACT-Ready Study follows children and young adults over time to learn how profound autism develops and changes, laying the groundwork for future clinical trials. During this phase, the study is open to children and young adults up to age 18, and ARIA's research team will confirm eligibility. Participants complete 1 to 5 clinic visits over about two years. Enrollment opens in waves, so sign up on Get Involved in Research and we'll let you know when the study is recruiting in your area.

Visit ariaroadmap.org for study details, site locations, and ARIA's full FAQ.

ECHO Autism: Intense Behavior is a training program that connects community clinicians with leading experts through virtual, case-based learning, so more physicians nationwide can competently treat intense behaviors like severe emotional dysregulation, self-injury, and physical aggression in people with autism. It's designed for psychiatrists, developmental and behavioral pediatricians, neurologists, and other prescribing clinicians.

Clinicians can join a training cohort at https://echoautism.org/intense-behavior/.

Yes — CME credits are available for physicians who participate in the training.