Avoiding Autism Misinformation on Social Media
In 2018, the Pew Research Center reported that social media has surpassed print newspapers as a source of news information in the United States,…
Having a child diagnosed with autism can be a life-changing event for parents. They often turn to early intervention as the key to their child’s development. Their immediate dilemma is determining which interventions to consider. Some are soundly based on research; others, sometimes making claims akin to “miracle cures,” are not. One way or the other, all roads lead to research in some form.
What do we know? What information can we trust? How do we learn more?
Learn how to identify high-quality research that addresses your immediate needs, and about important things to know when participating in research.
Types of Research
Reading and interpreting research can be a difficult task, especially if you don’t have a background in science. The nature of science and scientific examination is built on defining conditions and standards, using specific measures, applying consistent procedures, and observing objectively. In other words, it is predicated on order. Understanding this order—the science model—doesn’t require special expertise, and having a basic grasp of it before you get started reading research will simplify the task. This section introduces you to some key terminology and describes the study framework in which research is conducted.
Five Types of Research Studies
Single Subject Research
A single case study looks at a single subject (ex. an autistic child) or a single case (ex. classroom for autistic students).
Correlational Research
Correlational research looks for relationships between two or more variables or things that naturally occur in the same environment.
Longitudinal Studies
Longitudinal studies can give us information about how people can develop over time.
Experimental Studies
Experimental studies are used to directly study cause and effect.
Clinical Trial Studies
Clinical trial studies are a type of randomized experimental study and are most likely to be conducted in medical or other clinical settings.
Single Subject Research
A single case study looks at a single subject (ex. an autistic child) or a single case, (ex. a classroom for autistic students).
Single-subject studies are typically used in research in therapeutic settings where there is a one-on-one relationship. Many studies with autistic children – particularly those looking at interventions based upon applied behavior analysis – use a single subject design or, more specifically, a “single-subject experimental design.”
The advantages include the ability to control variables which may more clearly identify cause and effect and a substantial amount of information can be gathered about one person or one case.
The disadvantage is the small sample size—information relative to one person or group may not generalize to people or groups in other cases, situations, or settings.
Correlational Research
Correlational research looks for relationships between two or more variables or things that naturally occur in the same environment.
They do not determine anything about cause and effect, i.e., correlation does not mean causation.
The advantage is that a lot of information can be collected about a large number of people at one point in time.
The disadvantage is that the effect of factors outside of the study that might influence the research cannot be controlled.
Longitudinal Studies
Longitudinal studies can give us information about how people can develop over time.
These types of studies follow one group of people (referred to as a cohort) across time, measuring the same behavior multiple times.
The advantage is that longitudinal studies allow researchers to pinpoint times during development when changes occur.
Disadvantages include the long length of time to complete, the expensive cost, and the difficulty in retaining all participants across the life of the study.
Experimental Studies
Experimental studies are used to directly study cause and effect.
Experiments are controlled so that one variable is manipulated by the researcher to determine its effect on other variables. Research using this method entails two groupings of randomly selected subjects, an experimental group (those who receive the intervention being tested) and a control group—ideally an identical sample to the experimental group that completes all the steps except the intervention. Therefore, if the study is well controlled, the differences between the experimental and control groups at the end of the study will be due to the intervention.
The advantage is that it allows researchers to more precisely examine cause and effect relationships.
The disadvantage is that the results do not always easily generalize to the real world, i.e. what occurs in a controlled environment may differ from what might occur in a real-life setting.
Clinical Trial Studies
Clinical trial studies are a type of randomized experimental study and are most likely to be conducted in medical or other clinical settings.
Similar to experimental studies, clinical trial studies employ an experimental/control group protocol, in which subjects are randomly assigned to receive the experimental treatment (for example, a medication to treat autism symptoms) or a placebo (a sugar pill).
The advantage is that it can determine the effectiveness of an intervention because the intervention is compared with a placebo or control condition.
The disadvantage is that, as with randomized experimental studies, the results of the study cannot always be generalized to a real-life setting.
As Google demonstrates, there are many sources of information about autism. But Google and other search engines give no clues as to the credibility of any source. If you want reliable information drawn from research, it is best to get it “first hand” from the professional journals that publish research, the person or persons who conducted the research, or the associated web sites. This section offers a few tips on where and how to search for evidence-based sources on autism and autism research. For a more in-depth discussion, please consult OAR’s A Parent’s Guide to Research.
The challenges of learning about and understanding autism include:
- Narrowing the search
- Sifting through the array of information
- Determining what applies to your child
With rising awareness of autism, you will see reports through news outlets on television, in newspapers, and in magazines. These sources often cite useful references and report scientific research in condensed form within the limited context of the “story.” It is important to remember that these stories and features are intended to be informational. Don’t consider them as primary sources of evidence-based information.
For primary sources—research reports by the scientists who conduct the studies—consult professional journals. These publications submit articles to a process called “peer review“—evaluation by professional peers—before publishing them. Thus, the articles that appear in professional journals reflect the best of current research.
Resources and information accessed via the Internet can be very difficult to evaluate. Here are things to look for in a website that imply higher reliability and evidence-based information:
- Links to other known, credible sites (eg. autism organizations, research institutions, and professional research articles)
- Is hosted by government agencies or nonprofit organizations with demonstrated expertise
- Clearly cites primary source information
Online databases retrieve information using a “keyword” system, i.e. they identify all articles that contain the keyword. They are very easy to use. The disadvantage is that queries often produce more information than the average person needs or can possibly review. Some online databases are for members only and only accessible to the general public through university libraries. Here are two databases that are accessible to the general public:
- PubMed (Medical Publications) — maintained by the National Library of Medicine at the NIH. It contains an extensive collection of medical and psychological literature.
- ERIC (Education Resources Information Center) — supported by the U.S. Department of Education, Office of Educational Research and Improvement, and the National Library of Medicine. ERIC contains an extensive collection of literature in the field of education. It is an excellent source of school-based research.
Medical and university libraries contain a wealth of autism research. The libraries have searchable databases that are usually more comprehensive than those you can access from home. These also hold collections of professional journals, and they have reference librarians who can you with your search efforts.
There are several good article location services that will either email, fax, or mail copies of articles to subscribers. There is a fee for these services, and users must subscribe to these services.
Researchers frequently welcome inquiries about their research projects and often provide reprints of their articles to interested parents. The best way to contact researchers is through email. Contact information can be found in the author’s information in the article or abstract, agency or corporate Web sites, or by conducting a “person” search on a university (for university-based research).
Reading Research
This section specifically focuses on published research and provides you with a framework for reading, analyzing, and evaluating research articles. There is a standard format used for reporting research in most professional, peer-reviewed journals. This format provides signs that will guide you once you understand what the signs mean. In this context, the signs are the named sections within the standard format. As you will read below, each section has a clear purpose for the researcher. They also help guide the reader to the parts of specific interest.
While you may find some occasional variations, research articles are typically organized into six sections:
Read this first. It is often the only section from an article that you need to read to determine if the article is relevant to your child.
The abstract provides a brief overview or synopsis of the article. As a general rule, it contains a sentence or two from each of the five sections of the article that follow and usually includes the following key points:
- The purpose of the study or why the authors think it was important to conduct the study
- Information about the participants in the study—their ages, ethnic background, etc.
- The procedure used in the study
- The major results or findings of the study
A statement as to why the findings are important
Knowledge is a cumulative process.
Science takes that a step further by making it a deliberate and necessarily repetitive process as well. A research study is not done in isolation; it is connected or related to other research. Thus, research articles begin by summarizing previous research on the topic of interest in order to provide a framework or context for the present study. In addition to summarizing previous research, this section should also state how the study adds to what has already been done.
Researchers design a study to answer a research question and/or test a hypothesis. Often, authors will state their research question(s) in the introduction and make a hypothesis about what they expect the study to find.
This part of the report provides a blueprint of how the study was designed and conducted and is usually divided into four subsections:
— Research Design. Specifies what type of study was used in the research and where the research was conducted.
— Subjects. Reports how many subjects were in the study, the characteristics of the subjects, the inclusion and exclusion criteria for subject selection, and how the participants were assigned to groups.
Good research studies randomly assign participants to groups. Random assignment is a lot like flipping a coin—each participant has an equally likely chance of being in any one group. Random assignment helps counter bias being introduced into a study.
Note: Studies that conduct research with people with conditions such as autism will generally have fewer subjects than studies that use participants from the general population. Overall, there are simply fewer autistic people.
— Procedure. The procedure section explains how the study was conducted. It describes:
- Each step the researchers took to set up and complete the study, including the method of collecting data
- What kinds of data were collected and specifics about the data, such as measures of knowledge or behavior
— Measures and Instruments. For a study to produce meaningful results, the measures must be standardized, clear, and consistently applied. The same applies to any instruments used in that process.
Specific points to look at are:
Do the instruments measure what they are supposed to measure? See the term “validity.”
Have other researchers used the instruments? Instruments that have been used by other researchers have more credibility. If a new measure is being used or introduced, the authors should provide a detailed description of the measure and explain why it was chosen for use in the current study.
If a standardized instrument is not used, are the data collected sufficient to answer the research question? In single-case research investigating interventions based on the principles of applied behavior analysis, some topography of behavior change is measured. In this case, it is important that the behavior measured be clearly defined, reliably recorded by two or more recorders (inter-rater reliability), and directly related to the stated research question.
What are the findings of this study?
The results section explains the statistical analyses of the data used in the study and presents the analytical findings in three formats: (1) Narrative (written in text), (2). Graphic (depicted in graphs), and (3) Tabular (presented in tables).
This is not light reading! Research studies use sophisticated statistical methods. The average person (and even some researchers!) will be unable to evaluate the statistical methods used in conducting research. Therefore, a reasonable strategy for evaluating the findings of the study may be for you to get a general idea by looking at the tables and figures provided and seeing to what extent they reflect the outcomes described in the Discussion.
If the abstract suggests the study does apply in some way to your child, read the discussion section next.
It explains the findings of the study in the most understandable terms. It summarizes the findings, offers the researchers’ interpretation of the findings, and presents their conclusions.
In addition, the discussion section should respond to the following questions:
What were the limitations of the study?
Are the findings applicable to different participants and other settings?
In conclusion, researchers often describe the implications of the study in terms of future research.
If the abstract and discussion indicate that the study and research topic do pertain to your autistic loved one…
The references section may be more useful to you than reading the details in the other sections of the study because it represents a focused list of primary source information for you. More importantly, it will give you all the identifying information you need to locate the references listed through an online database or in a library.
Authors conduct a literature review of relevant studies before conducting a study and, as mentioned earlier, cite all applicable references in the Background/Introduction section. In the References section, the authors provide the full references.
Beware of Conflict of Interest
Be aware that researchers may sometimes be influenced by a “conflict of interest.” It is always wise to consider the source of funding behind the research. In most instances, authors acknowledge their source of funding by referencing the funding agency and grant number, if applicable, on the first page of the report or right before the reference section.
In general, be skeptical when evaluating the research. Always bear in mind that you are your child’s most important advocate, and there are many knowledgeable parents and professionals in the autism community with whom you can discuss questions or concerns about the research. In the final analysis, it is up to you to decide if a particular study makes sense, or has what researchers refer to as face validity, for your son, daughter, or other family member. A parent is the leading expert when it comes to their own child and if something doesn’t “ring true” to you, trust your own instincts, gather more information and make the best, fully informed decision you can.
Participating in Research
Autism research studies, especially in the area of applied research, are dependent on participation by individuals with an autism diagnosis. Parents of autistic children 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 autistic children and their 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.
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.
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.
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.
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.
The autism field is filled with articles, websites, books, and testimonials about the potential benefits of various treatments or intervention strategies. From diets to dolphin therapy to discrete trial training, the sheer volume of options along with their purported evidence can be overwhelming.
These resources and tips can help families and practitioners navigate those claims and make informed choices about intervention options.
Several independent research groups have recently conducted rigorous and thorough reviews of the autism literature and have identified a number of evidence-based, effective practices for autistic children and young adults:
- The National Professional Development Center on Autism Spectrum Disorder (NPDC) recently released a report that identifies 27 evidence-based practices. Online modules provide step-by-step instructions on how to understand and implement each of the evidence-based practices. These resources allow families and practitioners to select an intervention that matches the age range of the child/student and targets the desired outcome (e.g. communication, social interaction).
- The National Autism Center’s National Standards Project (NSP) conducted a similar review of interventions for autistic children and adults. The NSP identified 14 “Established Treatments,” its rating for interventions with the strongest evidence. The NSP also developed a manual for school staff and parents to assist in the treatment decision process.
The Internet is filled with testimonials about “cures” or “miracle treatments” for autistic individuals. These strategies can assist families, autistic people, and practitioners in sorting truth from fiction:
- Review the source of the claim.
Look first to see if the described results have been published in a peer-reviewed journal. This is the highest standard for quality and ensures that experts in the field have reviewed the methods and results to ensure rigor and accuracy.
If the results are from an unpublished study or dissertation, website, pamphlet, or interview, however, there are no safeguards to ensure that the study was well-conducted (or that any study was conducted) and the results are meaningful. The same caution should be used with books since they typically do not follow the same peer-review process. Review the author’s credentials carefully.
Several online databases can help in finding reputable sources for claims related to intervention results, including PubMed, SCIRUS, ERIC, and the use of Google Scholar. These do not include unpublished work, Internet claims, or unfounded testimonials, allowing families and practitioners to “weed out” questionable sources.
- Be aware of a sales pitch.
Certainly authors who publish studies in peer-reviewed journals about specific interventions or strategies may also earn money by delivering these interventions to autistic individuals in schools, homes, and clinics. However, if someone is promoting a service or product, that person should not be the only one conducting research on and promoting the use of that intervention. Also, if a researcher cites himself frequently in a study or claim, it may indicate that others in the field have not been enthusiastic about trying to replicate or extend the work.
In addition, ethical researchers disclose any perceived conflict of interest when earning money related to their research findings. For example, researcher Sally Rogers discloses in her work related to Early Start Denver Model, an early intervention model, that she earns money from the sales of a book on the same topic.
As part of OAR’s Life Journey Through Autism series, OAR and Danya International developed A Parent’s Guide to Research, which serves as a comprehensive guide to reading and understanding a journal article. This resource provides step-by-step support from the initial reading of the abstract to deciphering the results and their significance, including these tips to help you get started:
- Review the study participants in the Methods section.
If you are reviewing an article to see if the results might apply to your child/student, it is important to note if the study participants are similar in age, skills, and other relevant characteristics to your child/student. - Review the study design in the Methods section.
The most rigorous studies use both random assignment (e.g. all students have a 50/50 chance of receiving the intervention), as well as a treatment and control group (a group that does not receive the intervention). This allows researchers to compare the effects of the intervention across both groups and assume that any differences between the groups at the end of the study are a result of the intervention. There are other viable study designs, including single-subject design and designs that do not randomly assign groups, but they should be interpreted with additional caution. - Review the findings of the study in the Results section.
When reviewing the findings, it is important to consider if what the study is measuring is applicable to what the family or staff wants for their child/student. For example, if a study were examining the use of music therapy to increase the use of single words in young autistic children, but your child/student is already speaking in four-to-five word phrases, this would not be a relevant outcome, so the study may not be worth full review.
For most study designs, look for the term “statistically significant,” which indicates that there is a difference between the groups that is not likely due to chance, but likely due to the intervention studied. Often studies use a number of measures to gauge change across a number of skills. Note which outcomes were statistically significant, because an intervention may improve one skill area but not another.
Research in the field is growing and changing at a rapid pace, and it is difficult to keep up with the newest findings, as well as ensure that those findings are from a reputable source. With the support of the tips and resources included here, families and practitioners can navigate this process with additional confidence knowing that they are more discerning and more informed during the intervention selection process.
Related Posts
Check Out OAR’s Educator’s Guide to ASD
Many autistic students have learning and social difficulties that require support from educators. OAR’s ninth Life Journey Through Autism guidebook is intended to help…
Rate of Autism Without Intellectual Disabilities Is Rising
Researchers at Rutgers University recently reported that, between 2000 and 2016, autism rates among children without intellectual disabilities rose by five times— from 3.8…
