Autism research studies, especially in the area of applied research, are dependent on participation by individuals with an ASD diagnosis. Parents of children with autism often seek to include their child in ongoing research studies in part to increase our understanding of autism and for the potential benefit to the child from receiving the intervention being used in the research study.

Researchers also actively recruit children with autism and family members to be participants in research studies. Participation in a research study is a decision that is both voluntary and personal. If you decide that you would like to have your child, family members, or yourself participate in a research study, please consider the following points and questions.

Ethical Considerations in Research with Human Participants

The American Medical Association and the American Psychological Association have strict codes of ethics that all researchers must follow when conducting research with human participants. As a participant, you should be informed about all aspects of the research, including information about:

  • Potential risks of participation: You should be informed of any potential risks to you or your child as a consequence of participating in a study.
  • Potential benefits of participation: You should be informed of the benefits of participation.
  • Assurance of confidentiality: You should be informed of how researchers are going to ensure the confidentiality of you and your child’s identity.
  • The right to withdraw from the research at any time: Your participation is voluntary and you have the right to withdraw from the study at any time with no penalty.
  • Informed consent: Researchers must obtain your written informed consent for participation and this consent must be provided freely and without coercion (i.e., “If you don’t agree, we can no longer work with your child.”).

If you are not informed of any of these aspects of the research, do not participate in the study.

Questions to Answer before Participating in Research Studies

Assuming that you have been fully informed and that the human subjects’ protection requirements have been approved by an institutional review board (IRB), please ask yourselves the following questions and consider OAR’s accompanying advice before enrolling your child, other family member or yourself in any study.

Q. Will I learn more about my child from participating in a study?

A. Be sure you understand the purpose of a study. Generally, research studies are conducted to answer a very specific question, so you will probably not receive any information specific to your child as an individual.

Q. How can I be sure that it is safe for my child to participate in a study?

A. Inquire about the review process that the study had to undergo. Be sure that the research is being conducted in a controlled environment that is committed to the protection of participant rights. Studies conducted at universities and medical institutions must receive approval from institutional review boards (IRBs) whose job it is to make sure that the research is ethical and safe. Private facilities are not always as closely regulated, so be sure to inquire about their systems of review and safeguards.

Q. How can I be sure that the study will not demand too much of my time?

A. Be sure you understand the requirements of participation. Find out how long the study is expected to last, how much time you will have to commit, if you will have to participate on a daily or weekly basis, how many hours per day are required, etc.

Q. If the study is using a randomized control design, how will I know if my child is in the control or the treatment group?

A. Please see the definition of random assignment in the Glossary. Your child has a 50/50 chance of being assigned to either a treatment or a placebo group, and you will not be told of your child’s group assignment until the conclusion of the study. For this reason, it is very important to be sure you understand whether or not you will be offered an opportunity to receive the treatment at the conclusion of the study if they are assigned to the placebo group. Sometimes, researchers use a “cross-over” design, in which groups switch conditions after a period of time. If this is the case, your child will be assured to receive the intervention. However, to keep you and your child “blind” to your group assignment, you will not always know that the research is using a “cross-over” design in advance of the study.

Research Participation Opportunities

If you are interested in participating in a research study, click here to find a list of opportunities that have been shared with OAR. Please note that the research studies listed there are not conducted by OAR staff; you are encouraged to ask yourself the questions above as you explore these opportunities.