{"id":23986,"date":"2025-08-05T08:07:16","date_gmt":"2025-08-05T13:07:16","guid":{"rendered":"https:\/\/autism.org\/?p=23986"},"modified":"2025-09-23T09:49:29","modified_gmt":"2025-09-23T14:49:29","slug":"understanding-autism-research","status":"publish","type":"post","link":"https:\/\/autism.org\/understanding-autism-research\/","title":{"rendered":"Understanding Autism Research"},"content":{"rendered":"

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ARI’s Statement on Acetaminophen Use and Leucovorin Supplementation\u00a0 (9-22-25)<\/a><\/p>\n

Information regarding autism research and care strategies is widely available across various platforms, including online resources, print media, books, and podcasts. To ensure the reliability of information, it\u2019s best practice to assess its source<\/strong>. This page outlines strategies for identifying high-quality autism information, provides sources for finding original research, explains the components of a peer-reviewed article, and explains how to know if a study is relevant to you.<\/p>\n

PDF version available HERE<\/a><\/strong><\/p>\n<\/div><\/div><\/div>

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How to spot good information<\/strong><\/h2>\n

The following questions will help you to determine whether information concerning autism biology and care is reliable.<\/p>\n<\/div>

<\/i><\/i><\/span>Does it center autistic voices?<\/span><\/a><\/h4><\/div>
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Centering autistic voices through participatory autism research is crucial because it ensures studies address the true needs and priorities of autistic people, shifting focus from “cures” to improving quality of life and promoting acceptance. This inherently enhances research quality by integrating invaluable lived experiences, leading to more valid and effective interventions. Ultimately, including autistic perspectives upholds the right to self-determination and builds trust, fostering ethical and truly beneficial research for the autistic community.<\/p>\n

Learn more about the importance of participatory research and investigations led by people with autism in Dr. Wenn Lawson\u2019s presentation, <\/span>Autism Research: Nothing About Me Without Me<\/span><\/i><\/a>.<\/span><\/i><\/p>\n<\/div><\/div><\/div>

<\/i><\/i><\/span>What is the source of this information? <\/span><\/a><\/h4><\/div>
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Blog posts, books, pamphlets, social media posts, websites, news stories, or other non-journal sources can bring information to your attention, but it\u2019s up to you to check their sources. Is the information based on studies and research, or is it the opinion of the author?<\/p>\n

The most credible source of information is peer-reviewed journal articles because they are reviewed by several experts who suggest revisions or reject the article. Information found in popular media (e.g., Time Magazine, Wall Street Journal, New York Post, Fox News, New York Times, People Magazine) is reviewed by an editor for typos or grammar, but it does not undergo the rigorous expert review that peer-reviewed articles do. Therefore, there is no way of knowing whether it is true.<\/span><\/p>\n

It is essential to approach information on blog posts, social media posts, and websites with skepticism. Some questions you might want to ask yourself when reading information include: <\/span><\/p>\n

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  1. Does the author provide any citations to back up their claims, or are they all anecdotal (such as before-and-after pictures of a person who lost weight with a specific diet, which may or may not be real)? <\/span><\/li>\n
  2. If the authors do provide citations to back up their claim, what are the sources of those citations? <\/span><\/li>\n
  3. If the author claims their treatment has resulted in progress, can it be measured? (e.g., objective and measurable: \u201chis language improved from 0 words per day to 5 words per day\u201d versus subjective: \u201chis language seems better\u201d)<\/span><\/li>\n
  4. Do the authors report any \u201cbaseline\u201d or \u201cpre-treatment\u201d data? If not, it would be like showing the \u201cafter\u201d picture without showing the \u201cbefore\u201d picture.<\/span><\/li>\n
  5. Is the author selling anything? If so, be very skeptical of this information. <\/span><\/li>\n<\/ol>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Who performed this research? <\/span><\/a><\/h4><\/div>
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    What people, groups, universities, or businesses were involved in this study? Do they have a track record of producing reliable autism research? Be cautious if the author has a vested interest in the outcome of the study, especially if they stand to profit from this research, treatment, product, or service. See if the author is selling anything or if they claim to have a treatment or service that provides a \u201ccure\u201d for autism. If so, you should view the information cautiously.<\/span><\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Who funded this research? <\/span><\/a><\/h4><\/div>
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    Does the researcher or institution have any conflicts of interest I should know about? What businesses, funding sources, products, or services might benefit from this study’s results?<\/p>\n<\/div><\/div><\/div><\/div><\/div>

    <\/i><\/i><\/span>What other works are cited in the study? <\/span><\/a><\/h4><\/div>
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    Are the researchers basing their work on good science? Have they cited earlier studies published in peer-reviewed journals?<\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Has the research been peer-reviewed? <\/span><\/a><\/h4><\/div>
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    Does it appear in a peer-reviewed journal? What is the impact factor of that journal? While a journal may appear reputable, many pay-to-publish journals offer minimal or no peer review. These are often referred to as \u201cpredatory journals.\u201d\u00a0 In contrast, articles published in journals indexed in databases such as PubMed.com<\/a>, Medline, PsychINFO, PsycARTICLES, Web of Science, Ovid, ERIC, or Wiley Interscience are generally considered to be of higher quality due to more rigorous editorial and peer-review standards.<\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Has it been replicated? <\/span><\/a><\/h4><\/div>
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    Have other scientists used the same method to achieve the same results? If not, why not? Can this progress be replicated by anyone else, or can only this one person, clinic, or team of researchers achieve good results (e.g., \u201cour program is so special that only we can get good results?\u201d) Be cautious about accepting any claim that other researchers or studies have not tested and replicated.<\/p>\n<\/div><\/div><\/div><\/div><\/div>

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    What is a peer-reviewed study?<\/strong><\/h2>\n

    Peer-review is a process that academic journals use to understand if the studies they publish are based on good research. Before including a study in their publication, the journal sends the research out to other experts in the field.\u00a0The most credible source of information is from peer-reviewed journals articles. That is because these articles must undergo a rigorous evaluation process by several experts (\u201cpeers\u201d) in the same field before being accepted for publication; this helps to ensure the quality of the research.<\/p>\n

    In peer-reviewed journal articles, experts (\u201creviewers\u201d) not involved in the original study check that the study design applies scientific principles and procedures. They also use their knowledge of the subject to determine whether the procedures are methodologically sound and whether the results and conclusions make sense based on available data. The journal editor considers the reviewers\u2019 recommendations when deciding whether to publish the study.<\/p>\n

    Some scientific journals have been in print longer than others or are more respected. Readers can use an impact factor metric to decide if the journal that printed a particular study is a reliable source of information. The Impact Factor is the total number of times articles from that journal were cited, divided by the total number of citable articles in that journal.<\/p>\n

    The impact factors of various journals are calculated and printed yearly in Journal Citation Reports. You can find the current impact factor of most journals with a quick web search. Remember that a journal must exist for at least two years before its impact factor can be calculated.<\/p>\n

    Types of studies<\/strong><\/h3>\n

    You may encounter several different types of studies as you read and learn about autism. Each study type can be used to investigate autism-related topics, but some have a wider application than others. Knowing the different study types supports critical thinking about how the research applies to you or your child with autism.<\/p>\n<\/div>

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    <\/i><\/i><\/span>Animal and Cell Studies<\/span><\/a><\/h4><\/div>
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    Observe and test animals or cell cultures. These studies often provide initial insight, but the application to humans may not be clear.<\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Case Reports<\/span><\/a><\/h4><\/div>
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    A written record on a single subject. Each case study represents an individual experience. This can be a starting point for research. It does not prove that what worked for one individual will work for others. <\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Case Series<\/span><\/a><\/h4><\/div>
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    A group of case reports that track multiple participants. Remember that correlation is not causation. That means that two things can happen simultaneously, but that doesn\u2019t prove one caused the other. <\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Case-Control Studies<\/span><\/a><\/h4><\/div>
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    Examine the experiences of the participant groups\u2014typically, one group consists of individuals with autism and the other without autism (allistic). The investigation is retrospective, meaning it looks at experiences in the past and attempts to draw conclusions. Causation is complex to prove with this type of study.<\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Clinical Trials<\/span><\/a><\/h4><\/div>
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    Test new medical treatments, interventions, or devices on human volunteers. They are carefully designed, often prospective (looking forward in time), and aim to establish cause-and-effect relationships between an intervention and an outcome. Clinical trials are the gold standard for proving the efficacy and safety of new medical approaches.<\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Cohort Studies<\/span><\/a><\/h4><\/div>
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    Track the groups receiving the intervention and those who do not. Participants in the intervention group may receive the treatment at varying levels, while those in the control group often receive a placebo. Control participants may be related to those in the treatment group (e.g., siblings) or unrelated individuals.<\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Randomized Controlled Trials<\/span><\/a><\/h4><\/div>
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    Randomized clinical trials (RCTs) are the gold standard for providing evidence to support the efficacy and safety of new medical approaches. RCTs randomly assign participants to either the <\/span>experimental group<\/span><\/em><\/strong> (the group that receives the intervention being assessed) or a <\/span>control group<\/span><\/em><\/strong> (the group that does not receive the intervention; they may receive no intervention, treatment as usual, a \u201cplacebo\u201d intervention, or even another active intervention). It is essential to randomly assign participants to groups because it helps ensure that each participant has an equal chance of being assigned to either group, minimizing the potential for selection bias.\u00a0This prevents researchers from unintentionally favoring certain groups or individuals.<\/span><\/p>\n

    Randomization also makes it more likely that \u201cconfounding variables\u201d (factors that may influence the outcome but are not the focus of the study, such as participants in one group being in poorer health than participants in the other) are evenly distributed across groups.\u00a0This means that outcome differences between groups are more likely to be caused by the treatment rather than other confounding factors. Before randomization, participants are often matched on one or more variables\u2014such as sex, age, or communication level\u2014to ensure comparability between groups. The test group receives the treatment while the control group receives a placebo (this can be a placebo pill, as in a study of a medication treatment, or a psychological placebo that controls for attention from a therapist [e.g., supportive therapy], as in a study of a behavioral or psychotherapy treatment). This type of study can be blinded or \u201cmasked\u201d (study participants don\u2019t know which group they\u2019re in) or double-blind (the researchers who are assessing the outcome also don\u2019t know which group the participants are in).<\/span><\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Single-Subject Experimental Designs<\/span><\/a><\/h4><\/div>
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    Single-Subject Experimental Designs (SSEDs) are research methods that focus on how interventions affect an individual case rather than groups. These designs involve repeated measurements of a behavior over time, comparing baseline performance to performance during intervention phases. Researchers use SSEDs to establish a causal link by observing consistent changes in an individual’s behavior when an intervention is introduced or removed. They are particularly useful for in-depth understanding of individual change and for situations where large group studies aren’t feasible.<\/p>\n<\/div><\/div><\/div>

    <\/i><\/i><\/span>Systematic Review<\/span><\/a><\/h4><\/div>
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    Compares and contrasts the results of several randomized controlled trials and draws conclusions based on the quality of the studies and their results.<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div>

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    Where to find sources<\/strong><\/h2>\n

    Many groups, organizations, and individuals write about autism. You can check the validity by seeking sources whenever you come across new information, whether biomedical research or otherwise.<\/p>\n

    You can often find original research publications\/sources in:<\/p>\n<\/div>

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