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A Guide to Identifying and Understanding Scientific Research About Autism

Whether you are an individual with autism or a parent to a loved one with an autism spectrum disorder, you may want to stay informed about scientific research related to ASD. You can find information on the internet and other media channels, but how accurate is that information? Knowing how to understand scientific research studies can help you find reliable and relevant information. 

This article is a tool to help you assess information about autism based on scientific principles. As you put these recommendations into practice, remember to use critical thinking and common sense when assessing any claim about autism. Combining an understanding of scientific research studies with your own powers of reasoning can help you: 

• Make evidence-based decisions
• Understand recommendations from your care team and discuss them knowledgeably
• Minimize overwhelm
• Advocate for yourself or your family member with autism. 

Good autism research – like all medical research – meets three criteria: It is based on scientific principles and procedures, it has been peer-reviewed, and the study is able to be replicated. We’ll explore each of these criteria in more detail below.

Special thanks to Anissa Ryland and the staff of The Johnson Center for Child Health and Development for helping to develop some of the guidelines and information included in this article. 

What is a peer-reviewed study?

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. 

Experts who were not involved in the original study check that the study design applies scientific principles and procedures. They also use their own knowledge of the subject to determine whether the results and conclusions make sense based on available data. The editor of the journal takes their recommendations into account when deciding whether to publish the study. 

Some scientific journals have been in print longer than others or are more respected in their field. Readers can use a metric called an impact factor 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 during that span of time. 

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. Keep in mind that a journal must exist for at least two years before its impact factor can be calculated. 

Where to find research

Many groups, organizations, and individuals write about autism. Whenever you come across a new treatment or new information about autism, you can check the validity by seeking out original sources. 

Places to find original sources: 

• Google Scholar
• University websites
• Journal websites

Some of these research aggregation services are free, others cost money. For paid services, check with your local library to see if they can connect you with a free account. You can also ask your clinician to provide you with research related to specific treatments, comorbidities, and symptoms

Types of studies

You may come across several different types of studies as you read and learn about autism. Each study type can be used to investigate topics related to autism, but some have a wider application than others. Get to know the different study types so you can think critically about how the research applies to you or your child with autism. 

• Animal and Cell Studies – Observe and test animals or cell cultures. These types of studies provide initial insight, but the application to humans may not be clear. 
• Case Reports – 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. 
• Case Series – A group of case reports that track multiple subjects. Remember that correlation is not causation. That means that two things can happen around the same time, but that doesn’t prove one caused the other. 
• Case-Control Studies – Look at the experiences of two groups of subjects, one group with autism and one without. The investigation is retrospective, meaning it looks at experiences in the past and attempts to draw conclusions. Causation is hard to prove with this type of study.
• Cohort Studies – Track two groups, ex. One group of people with autism and one group without or one group that receives treatment and one that does not. It notes differences in outcomes for the two groups.
• Randomized Controlled Trials – Randomly assigns subjects to either a test group or a control group. The test group receives the treatment while the control group receives a placebo. This type of study can be blind (study subjects don’t know which group they’re in) or double-blind (experimenters also don’t know which group the subjects are in).
• Systematic Review – Compares and contrasts the results of several randomized controlled trials and draws conclusions based on the quality of the study and on their results. 

Assessing information about autism and autism treatments

The following questions will help you use what you’ve learned to assess information about autism and autism treatments. Remember that critical thinking skills are your most valuable tools in assessing any claim about autism spectrum disorder. 

What is the source of this information? Blog posts, books, pamphlets, social media posts, websites, news stories, or other non-journal sources can bring information to your attention, but it’s up to you to check their sources. Is the information based on studies and research or is it the opinion of the author?

Who performed this research? What people, groups, universities, or businesses were involved in this study? Do they have a track record of producing reliable autism research? 

Who funded this research? Does the researcher or institution have any conflicts of interest that I should be aware of? What businesses, funding sources, products, or services, might benefit from the results of this study?

Has the research been peer-reviewed? Does it appear in a peer-reviewed journal? What is the impact factor of that journal? 

Has it been replicated? Have other scientists used the same method to achieve the same results? If not, why not? Be cautious about accepting any claim that has not been tested by other researchers or studies.

What other works are cited in the study? Are the researchers basing their work on good science? Have they cited earlier studies published in peer-reviewed journals?

Reading and assessing biomedical research studies takes practice. Navigating autism research can be overwhelming at first, but critical thinking and common sense, along with the knowledge you’ve gained in this article, can help you assess information. Stop and think whenever you read a new statement about autism treatments, possible causes, or potential outcomes. Before acting on any new information go to the source to check the validity of the claim. 

For more on understanding autism research, watch this webinar from The Johnson Center.

Scientific Research Glossary

Autism and Sleep – Research Updates

autismAdmin 2024-04-17T17:37:25-05:00 April 16th, 2024 | Autism Spectrum Disorders , Sleep Issues , Ways to Help , Webinar |

Learn research updates on co-occurring sleep disturbances and autism. To participate in the study mentioned in the presentation, see: Participate in our Research - Sleep, Cognition and Neuropsychiatry (SCAN)

Animal study reveals clues that developmental vitamin D deficiency may be associated with gut alterations in autism

Melanie Glock 2023-09-25T12:21:18-05:00 September 25th, 2023 | News |

Vitamin D deficiency is strongly implicated as a risk factor for autism spectrum disorders (ASD), and researchers in Australia report evidence that vitamin D deficiency during early development may increase the

New multi-national study adds to evidence linking alterations of the gut microbiome to autism

Melanie Glock 2023-08-29T16:27:41-05:00 August 29th, 2023 | News |

Strong new evidence linking alterations of the gut microbiome to autism spectrum disorders (ASD) comes from a new multi-national study by James Morton and colleagues. In the study, researchers in North

Editorial: Revisiting Two Lesser-Known Teaching Strategies to Enhance Speech Production in Autism

Melanie Glock 2023-12-05T13:20:21-05:00 August 29th, 2023 | News |

In this editorial, I would like to shed light on two methods for improving the speech production of individuals on the autism spectrum, discuss potential neurological factors that may underlie their effectiveness,

Sleep problems in infancy associated with ASD, autism traits, and social attention alterations

Melanie Glock 2023-07-20T18:49:05-05:00 July 20th, 2023 | News |

A new study from the United Kingdom indicates that sleep problems in infancy may help to predict later social skills deficits, autism traits, and autism diagnoses in children. Jannath Begum-Ali and

Constipation in infancy associated with higher likelihood of autism diagnosis

Melanie Glock 2023-06-26T16:29:40-05:00 June 26th, 2023 | News |

More evidence linking autism spectrum disorders (ASD) to gastrointestinal problems comes from a study by researchers in Taiwan and the United States, who report that ASD occurs at an elevated rate

Privacy Overview

• Patient Care & Health Information
• Diseases & Conditions
• Autism spectrum disorder

Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior. The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity.

Autism spectrum disorder includes conditions that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and an unspecified form of pervasive developmental disorder. Some people still use the term "Asperger's syndrome," which is generally thought to be at the mild end of autism spectrum disorder.

Autism spectrum disorder begins in early childhood and eventually causes problems functioning in society — socially, in school and at work, for example. Often children show symptoms of autism within the first year. A small number of children appear to develop normally in the first year, and then go through a period of regression between 18 and 24 months of age when they develop autism symptoms.

While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children.

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• Children’s Book: My Life Beyond Autism

Some children show signs of autism spectrum disorder in early infancy, such as reduced eye contact, lack of response to their name or indifference to caregivers. Other children may develop normally for the first few months or years of life, but then suddenly become withdrawn or aggressive or lose language skills they've already acquired. Signs usually are seen by age 2 years.

Each child with autism spectrum disorder is likely to have a unique pattern of behavior and level of severity — from low functioning to high functioning.

Some children with autism spectrum disorder have difficulty learning, and some have signs of lower than normal intelligence. Other children with the disorder have normal to high intelligence — they learn quickly, yet have trouble communicating and applying what they know in everyday life and adjusting to social situations.

Because of the unique mixture of symptoms in each child, severity can sometimes be difficult to determine. It's generally based on the level of impairments and how they impact the ability to function.

Below are some common signs shown by people who have autism spectrum disorder.

Social communication and interaction

A child or adult with autism spectrum disorder may have problems with social interaction and communication skills, including any of these signs:

• Fails to respond to his or her name or appears not to hear you at times
• Resists cuddling and holding, and seems to prefer playing alone, retreating into his or her own world
• Has poor eye contact and lacks facial expression
• Doesn't speak or has delayed speech, or loses previous ability to say words or sentences
• Can't start a conversation or keep one going, or only starts one to make requests or label items
• Speaks with an abnormal tone or rhythm and may use a singsong voice or robot-like speech
• Repeats words or phrases verbatim, but doesn't understand how to use them
• Doesn't appear to understand simple questions or directions
• Doesn't express emotions or feelings and appears unaware of others' feelings
• Doesn't point at or bring objects to share interest
• Inappropriately approaches a social interaction by being passive, aggressive or disruptive
• Has difficulty recognizing nonverbal cues, such as interpreting other people's facial expressions, body postures or tone of voice

Patterns of behavior

A child or adult with autism spectrum disorder may have limited, repetitive patterns of behavior, interests or activities, including any of these signs:

• Performs repetitive movements, such as rocking, spinning or hand flapping
• Performs activities that could cause self-harm, such as biting or head-banging
• Develops specific routines or rituals and becomes disturbed at the slightest change
• Has problems with coordination or has odd movement patterns, such as clumsiness or walking on toes, and has odd, stiff or exaggerated body language
• Is fascinated by details of an object, such as the spinning wheels of a toy car, but doesn't understand the overall purpose or function of the object
• Is unusually sensitive to light, sound or touch, yet may be indifferent to pain or temperature
• Doesn't engage in imitative or make-believe play
• Fixates on an object or activity with abnormal intensity or focus
• Has specific food preferences, such as eating only a few foods, or refusing foods with a certain texture

As they mature, some children with autism spectrum disorder become more engaged with others and show fewer disturbances in behavior. Some, usually those with the least severe problems, eventually may lead normal or near-normal lives. Others, however, continue to have difficulty with language or social skills, and the teen years can bring worse behavioral and emotional problems.

When to see a doctor

Babies develop at their own pace, and many don't follow exact timelines found in some parenting books. But children with autism spectrum disorder usually show some signs of delayed development before age 2 years.

If you're concerned about your child's development or you suspect that your child may have autism spectrum disorder, discuss your concerns with your doctor. The symptoms associated with the disorder can also be linked with other developmental disorders.

Signs of autism spectrum disorder often appear early in development when there are obvious delays in language skills and social interactions. Your doctor may recommend developmental tests to identify if your child has delays in cognitive, language and social skills, if your child:

• Doesn't respond with a smile or happy expression by 6 months
• Doesn't mimic sounds or facial expressions by 9 months
• Doesn't babble or coo by 12 months
• Doesn't gesture — such as point or wave — by 14 months
• Doesn't say single words by 16 months
• Doesn't play "make-believe" or pretend by 18 months
• Doesn't say two-word phrases by 24 months
• Loses language skills or social skills at any age

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Autism spectrum disorder has no single known cause. Given the complexity of the disorder, and the fact that symptoms and severity vary, there are probably many causes. Both genetics and environment may play a role.

• Genetics. Several different genes appear to be involved in autism spectrum disorder. For some children, autism spectrum disorder can be associated with a genetic disorder, such as Rett syndrome or fragile X syndrome. For other children, genetic changes (mutations) may increase the risk of autism spectrum disorder. Still other genes may affect brain development or the way that brain cells communicate, or they may determine the severity of symptoms. Some genetic mutations seem to be inherited, while others occur spontaneously.
• Environmental factors. Researchers are currently exploring whether factors such as viral infections, medications or complications during pregnancy, or air pollutants play a role in triggering autism spectrum disorder.

No link between vaccines and autism spectrum disorder

One of the greatest controversies in autism spectrum disorder centers on whether a link exists between the disorder and childhood vaccines. Despite extensive research, no reliable study has shown a link between autism spectrum disorder and any vaccines. In fact, the original study that ignited the debate years ago has been retracted due to poor design and questionable research methods.

Avoiding childhood vaccinations can place your child and others in danger of catching and spreading serious diseases, including whooping cough (pertussis), measles or mumps.

Risk factors

The number of children diagnosed with autism spectrum disorder is rising. It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both.

Autism spectrum disorder affects children of all races and nationalities, but certain factors increase a child's risk. These may include:

• Your child's sex. Boys are about four times more likely to develop autism spectrum disorder than girls are.
• Family history. Families who have one child with autism spectrum disorder have an increased risk of having another child with the disorder. It's also not uncommon for parents or relatives of a child with autism spectrum disorder to have minor problems with social or communication skills themselves or to engage in certain behaviors typical of the disorder.
• Other disorders. Children with certain medical conditions have a higher than normal risk of autism spectrum disorder or autism-like symptoms. Examples include fragile X syndrome, an inherited disorder that causes intellectual problems; tuberous sclerosis, a condition in which benign tumors develop in the brain; and Rett syndrome, a genetic condition occurring almost exclusively in girls, which causes slowing of head growth, intellectual disability and loss of purposeful hand use.
• Extremely preterm babies. Babies born before 26 weeks of gestation may have a greater risk of autism spectrum disorder.
• Parents' ages. There may be a connection between children born to older parents and autism spectrum disorder, but more research is necessary to establish this link.

Complications

Problems with social interactions, communication and behavior can lead to:

• Problems in school and with successful learning
• Employment problems
• Inability to live independently
• Social isolation
• Stress within the family
• Victimization and being bullied

More Information

• Autism spectrum disorder and digestive symptoms

There's no way to prevent autism spectrum disorder, but there are treatment options. Early diagnosis and intervention is most helpful and can improve behavior, skills and language development. However, intervention is helpful at any age. Though children usually don't outgrow autism spectrum disorder symptoms, they may learn to function well.

• Autism spectrum disorder (ASD). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/facts.html. Accessed April 4, 2017.
• Uno Y, et al. Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder. Vaccine. 2015;33:2511.
• Taylor LE, et al. Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine. 2014;32:3623.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Overview of management. https://www.uptodate.com/home. Accessed April 4, 2017.
• Autism spectrum disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-5. 5th ed. Arlington, Va.: American Psychiatric Association; 2013. http://dsm.psychiatryonline.org. Accessed April 4, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Complementary and alternative therapies. https://www.uptodate.com/home. Accessed April 4, 2017.
• Augustyn M. Autism spectrum disorder: Terminology, epidemiology, and pathogenesis. https://www.uptodate.com/home. Accessed April 4, 2017.
• Bridgemohan C. Autism spectrum disorder: Surveillance and screening in primary care. https://www.uptodate.com/home. Accessed April 4, 2017.
• Levy SE, et al. Complementary and alternative medicine treatments for children with autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North America. 2015;24:117.
• Brondino N, et al. Complementary and alternative therapies for autism spectrum disorder. Evidence-Based Complementary and Alternative Medicine. http://dx.doi.org/10.1155/2015/258589. Accessed April 4, 2017.
• Volkmar F, et al. Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2014;53:237.
• Autism spectrum disorder (ASD). Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/autism/Pages/default.aspx. Accessed April 4, 2017.
• American Academy of Pediatrics policy statement: Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics. 2012;129:1186.
• James S, et al. Chelation for autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010766.pub2/abstract;jsessionid=9467860F2028507DFC5B69615F622F78.f04t02. Accessed April 4, 2017.
• Van Schalkwyk GI, et al. Autism spectrum disorders: Challenges and opportunities for transition to adulthood. Child and Adolescent Psychiatric Clinics of North America. 2017;26:329.
• Autism. Natural Medicines. https://naturalmedicines.therapeuticresearch.com. Accessed April 4, 2017.
• Autism: Beware of potentially dangerous therapies and products. U.S. Food and Drug Administration. https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm394757.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery. Accessed May 19, 2017.
• Drutz JE. Autism spectrum disorder and chronic disease: No evidence for vaccines or thimerosal as a contributing factor. https://www.uptodate.com/home. Accessed May 19, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Behavioral and educational interventions. https://www.uptodate.com/home. Accessed May 19, 2017.
• Huebner AR (expert opinion). Mayo Clinic, Rochester, Minn. June 7, 2017.

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Learn About Autism Spectrum Disorder

Click on the tabs to expand facts about Autism Spectrum Disorders (ASDs).

• What is autism?
• Signs and Symptoms
• Facts and Figures

Autism is the fastest growing developmental disability in the United States.

Autism spectrum disorder (ASD) is a developmental disability  that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.

— Centers for Disease Control

There is no known cause for autism, which is the primary reason we research. When we do know what causes autism, we will be able to better determine cures and treatments for autism-related symptoms.

We do know that brain scans of people with autism show differences in shape and structure compared to neurotypical people. This is why investigating how these differences appear through neurobiology and anatomy research ( like what we do here at TARF ) is so important.

Researchers share a number of theories, including links among genetics and environment.

Genetic Vulnerability

Some researchers have found that many families tend to have a pattern of autism or related disabilities, which supports the theory that ASDs may have a genetic basis. We have not found a specific gene that causes autism, but researchers are looking for irregular parts of genes that may be more succeptible to autism, and clusters of unstable genes that may interfere with brain development and “trigger” autism under certain conditions.

Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances and exposure to chemicals.

Environmental Factors

Environmental toxins (like mercury) are more prevalent than in the past, which research indicates may be contributing to the increasing prevalence of autism.

Individuals with autism (or those at-risk) may be especially vulnerable to such toxins, as their ability to metabolize and detoxify these exposures might be compromised.

The Bottom Line

Apart from differences in the brain, we do not have any definite answer for what causes autism and researchers are working everyday to understand the relationships between anatomy, heredity, genetics, medical problems, and environmental factors in causing autism spectrum disorders.

People with ASD often have problems with social, emotional, and communication skills. They might repeat certain behaviors and might not want change in their daily activities. Many people with ASD also have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during early childhood and typically last throughout a person’s life.

Children or adults with ASD might:

• not point at objects to show interest (for example, not point at an airplane flying over)
• not look at objects when another person points at them
• have trouble relating to others or not have an interest in other people at all
• avoid eye contact and want to be alone
• have trouble understanding other people’s feelings or talking about their own feelings
• prefer not to be held or cuddled, or might cuddle only when they want to
• appear to be unaware when people talk to them, but respond to other sounds
• be very interested in people, but not know how to talk, play, or relate to them
• repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language
• have trouble expressing their needs using typical words or motions
• not play “pretend” games (for example, not pretend to “feed” a doll)
• repeat actions over and over again
• have trouble adapting when a routine changes
• have unusual reactions to the way things smell, taste, look, feel, or sound
• lose skills they once had (for example, stop saying words they were using)
• Each individual experiences the diagnosis differently.
• There is no medical cure for autism.
• Autism is the fastest growing developmental disability.
• More kids will be diagnosed this year than pediatric AIDS, diabetes and cancer  combined .
• 1 in every 88 children has an autism spectrum disorder (1 in 54 in boys). New estimates suggest that 1 in 50 kids have an autism spectrum disorder now.
• Autism is 4 times more prevalent in boys than girls.
• 1 to 1.5 million people in the United States live with autism.
• Families spend an average of $60,000 each year on autism treatment and therapies.
• Average cost of autism over the lifespan is $3.2 million dollars.
• The National Institute of Health set a funding budget of $30.86 billion dollars in 2012. Autism research received $169 million of this, which totals one-half of a percent (0.55%) of funding.

Autism Spectrum Disorders (ASDs) are not simple to diagnose, so it is extremely important to obtain a diagnosis from a qualified professional. Currently, there are no medical tests (like a blood test) that can detect autism, so professionals look at the child’s behavior and development to make a diagnosis.

Professionals equipped to diagnose ASDs include: developmental pediatricians, child neurologists, child psychologists or child psychiatrists. Parents often choose to consult with multiple professionals. You can read about the unique ways each professional can help you on our Early Intervention Services page.

A universal criterion to diagnose ASD does not yet exist and approaches may differ depending on the expert’s area of specialization. Physicians’ diagnoses usually rely on a combination of clinical observation, parental history and application of the DSM-IV criteria published by the American Psychiatric Association .

Elements you can expect to see covered in a physician’s evaluation include: medical, family and social history, physical exam, neurodevelopmental testing, reviews of outside clinical/academic records, and lab testing.

ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until they are much older, and this delay means that children with ASD might not get the early help they need.

If you think your child may have an Autism Spectrum Disorder:

Step 1:  Schedule an appointment with his/her primary care physician.

Explain that you would like to have your child evaluated for an Autism Spectrum Disorder , so that the receptionist can allocate an appropriate appointment time for you with the doctor.

Step 2: Understand that if your child does receive an autism diagnosis, Early Intervention Services can improve the prognosis of your child significantly.

Plan to be receptive of your physician’s advice and proactive toward helping your child get the services, if any, he/she needs to succeed.

Helpful Links

• Identifying Language Delays : Describes the expected language milestones for developing babies and the signs of a possible language delay, which may be indicators of autism
• Parent Manual : Outlines the basics of Evidence-Based Practice in autism, the different options for treatment, and facts about autism. Also provides research findings on autism and additional resources for families
• Research Basics : A comprehensive outline of research findings in autism and a guide for understanding and utilizing research.
• New Diagnosis, Now What? : A guide for parents trying to make sense of a new autism diagnosis. Provides information on the different treatment forms available, including lists of services the children and their families are legally entitled to.

April 8, 2018

10 min read

Ask Me First: What Self-Assessments Can Tell Us about Autism

Self-report questionnaires gain popularity in Autism spectrum research and clinical practice

By Daisy Yuhas & Spectrum

Chad Hagen for  Spectrum

Assessing adults:

Just moments earlier, the teenager had been laughing so hard he was in tears. He had spent the day doing improv and other drama-based activities—part of a six-week summer camp in Boston designed to help children with autism build social skills. But when his mother showed up and asked about his day, the boy clammed up.

“Do you mean you just sat in a corner and stared at the wall all day?” psychologist  Matthew Lerner  asked him. It was the summer of 2006 and Lerner had launched the program with a colleague two years earlier. He had witnessed the boy’s giggle fit and hoped to prompt more of a response. “Yes,” the boy replied.

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As Lerner soon realized, this teen wasn’t the only camper with autism to react that way at pick-up time. “There were a couple of kids who I remember very vividly,” he says. After a day of smiling and playing with peers, they would respond with silence to their parents’ queries. Lerner saw these teenagers having a good time, but they seemed either to not know it themselves or to be reluctant or unsure how to share that experience with their families.

The disconnect startled Lerner. He continued eavesdropping on end-of-day dialogues between campers and parents and noticed that over the course of the summer, many of those conversations changed in tenor: As the young people with autism gained confidence through their interactions, they began to open up and talk more about their feelings and favorite games. The shift wasn’t just a matter of the campers learning to articulate those experiences, he says. “It was whether they seemed to notice or internalize them at all.”

It was a transformation that helped inspire Lerner’s work today—studying how people describe themselves and why those accounts sometimes differ from other people’s perceptions. He is one of several researchers uncovering ways to use and interpret self-report questionnaires that let people describe and quantify their own traits.

For a long time, such tools were rare in the autism world. Scientists presumed that individuals with severe impairments couldn’t answer questions about themselves, and that most people with autism have poor self-insight to begin with. Now, however, they are rethinking those assumptions. “I think the idea that we can interpret someone’s behavior without asking them [questions] is just not fair,” says  Vanessa Bal , assistant professor of psychiatry at the University of California, San Francisco.

As scientists turn more to self-reports, they are discovering these measures can be difficult to interpret. At the same time, they are finding that no assessment from a single vantage—that of a person with autism, her parents, caregivers, clinicians or teachers—can provide all the answers. “A child with autism may act very differently at home than at school,” says  Stephen Kanne , executive director of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri. That means the child’s  parents and teachers may perceive  her differently, and how she perceives her own experiences may also be different. By recognizing self-report as a valid viewpoint, researchers and clinicians are gaining insight into how people experience autism, rather than relying only on others’ accounts and observations.

Know thyself:

Self-insight is a nettlesome concept. Most people think they know themselves the best, despite the fact that psychology has repeatedly demonstrated the limits of human intuition. Some individuals on the spectrum expect  other people to know them better  than they know themselves—and that is not always the case, either.

Early observers viewed children with autism—a word derived from ‘autos,’ the Greek word for self—as wrapped up in their own private world. But by the 1980s and 1990s, opinions had  swung in a different direction . Some experts argued that autism involves poor introspection, not self-absorption. They noted that people on the spectrum have higher rates of  alexithymia , or difficulty recognizing their own feelings, and a limited ability to  imagine the minds of others . They guessed this might also extend to having limited self-insight.

Over the past decade, many studies have suggested that the truth falls somewhere in between self-absorption and zero introspection. Autism does not always preclude awareness of one’s own or another’s feelings, and if people with autism lack self-insight, those shortcomings may manifest only in their interactions with others. “It may really be something unique to the perception of social ability,” says Lerner, now assistant professor of psychology, psychiatry and pediatrics at Stony Brook University in New York.

Self-report questionnaires support this picture. One 2014 analysis compared how young people with and without autism  evaluate their own personality traits . The researchers reviewed 100 self-reports—half from teens or children with autism and half from those without—plus parent reports for each child. For the most part, the descriptions from parents and children matched well, indicating similar levels of self-awareness. But the young people with autism actually had slightly greater awareness of their own neuroticism, or emotionality, than the typical children. And they agreed less often with their parents on their level of ‘extraversion,’ a measure that calls for insight into social performance and how other people see you.

People with autism don’t always lack self-insight, even in social settings. A study last year found that, like typical people, those on the spectrum answer questions about themselves differently  depending on context . For example, they reported having more features of autism when they thought about their own behavior compared with that of typical individuals, and fewer autism features compared with others on the spectrum. That sensitivity, the researchers argue, is in itself a sign of strong self-awareness.

With the growing realization of this self-awareness among people with autism, self-report questionnaires are becoming more in vogue in research and clinical practice. Some assessments ask about specific autism traits, whereas others evaluate mood and quality of life. A few, such as the  Autism Spectrum Quotient  (AQ) and the  Ritvo Autism Asperger Diagnostic Scale-Revised , aim to quantify many autism features at once. Their breadth has made them tempting as a diagnostic shortcut—but it’s not so simple.

The AQ debuted in 2001 as the first self-report tool for assessing autism traits in adults of average intelligence. The 50-question test was not intended to be a diagnostic measure. Even so, its publication made headlines in the popular press, and soon many people were using it to assess themselves. Clinicians, too, had hoped it might help them diagnose people on the spectrum faster than with traditional tests, but a string of studies soon dashed that idea. “It’s very seductive,” says psychiatrist  Bram Sizoo  of the Dimence Institute of Mental Health in the Netherlands, “but actually, it’s inappropriate.”

Both tests are available online, making them relatively easy to game. People can prep for the tests before seeing a clinician who uses them, particularly if they want—or don’t want—a diagnosis. Also, the tools are not particularly sensitive. In 2015, Sizoo and his colleagues evaluated how well the tests predict whether someone would receive an autism diagnosis from an experienced clinician. In a sample of 210 people and 63 controls, those who scored high were more likely to receive an autism diagnosis, but the tests also  missed a substantial proportion  of the people who should have been flagged.

A year later, a British study  came to a similar conclusion  and added a new wrinkle: Not only do many people with autism score below the AQ’s cutoff, but those with anxiety tend to score high, regardless of whether they have autism. An analysis in 2013 found that depression and anxiety can  misleadingly inflate scores  on the AQ and on another self-assessment tool, the Social Responsiveness Scale.

These findings are not entirely surprising, because the tools are being used in populations they were not designed for. “You’re seeing the evolution of the field as opposed to some type of very considered approach to the development of these tools,” says Kanne, who worked on the 2013 study. “The problem is there’s nothing else out there.”

In 2012, Kanne created a self-assessment called the  Subthreshold Autism Trait Questionnaire , meant to measure autism features in the general population. Like many other self-report questionnaires, though, it’s often applied more broadly. Many tools used for adults are adapted from questionnaires designed for parents or clinicians to evaluate children. Until they are validated for those different populations, experts say, they should be coupled with other assessments.

“Use the screens, but don’t rely on them,” says  Tony Charman , chair of clinical child psychology at King’s College London. A clinician or researcher still has to use good judgment to, as Charman puts it, “triangulate” across as many sources of information as possible. Says Sizoo: “The wrong conclusion would be there’s no use for these tools in clinical practice, let’s do away with them. I think that would be a shame.”

Mind the gap:

There is less doubt about the value of using self-report to understand how people with autism experience the condition. When Lerner was in graduate school, he became fascinated by ‘informant-discrepancy research’—the study of how to interpret different perspectives on the same person or experience. His interest brought him to work alongside a pioneer in this field, psychologist  Andres De Los Reyes  at the University of Maryland at College Park. In 2005, De Los Reyes proposed that conflicting reports between people can expose their beliefs, biases and traits.

“His model really rocked my world,” Lerner says. It contrasted starkly with older views Lerner had encountered that suggested comparing assessments would reveal nothing more than who’s right and who’s wrong.

Since then, Lerner has examined a number of common discrepancies in autism reports from different vantages. Last year, for instance, he found that the more parents and teachers  agree about a child’s autism traits , the more likely it is that a child takes medication, receives services or meets standard criteria for a diagnosis. Looking at either the parent or teacher’s report on a child does not yield as accurate a picture of her impairments as the combination does. “Self-report in isolation is not enough, but neither is parent report in isolation and neither is teacher report in isolation,” says Lerner. “Trying to look at the distance between these things gives us some truly meaningful—clinically meaningful—information that we miss on its own.”

In 2016, his team discovered a discrepancy that helps explain why parents often rate a child’s social impairment to be greater than the child does: When it comes to social skills,  parents view self-control as crucial , whereas children see cooperation as more important. That gap in particular can actually guide clinicians making treatment decisions.

In a 2012 study, Lerner and his colleagues asked 53 teens with autism and their parents to describe the teens’ social ability. They found that when parents saw their children’s skills as much worse than their children did, those children benefited the most from programs designed to build social confidence, and showed significant  decreases in social anxiety .

A small gap between the parents’ and children’s perspectives, on the other hand, predicted depression in the teenager.

In Lerner’s view, that finding lends credence to a larger theory—the so-called self-protective hypothesis, borrowed from the literature on attention deficit hyperactivity disorder. The premise is that people overrate their abilities when they are trying to shield themselves from the pain of acknowledging a weakness. By that logic, if they acknowledge that their social skills are poor, they are not protecting themselves and may need additional support.

Even when people protect themselves and provide inaccurate self-reports, that perspective is valuable. For instance, self-reports have shown that teens with autism may not realize or acknowledge  when they are being bullied  or teased by their peers. “In some ways, that’s really protective, if you don’t think other people are picking on you,” says  Somer Bishop  of the University of California, San Francisco. “But it can also make you really vulnerable.” Those vulnerabilities are important for a clinician to know about.

“Really good clinicians are often already thinking about this stuff,” Lerner says. But he hopes his work will encourage more of them to ask people with autism about their experiences.

Psychologists at the University of North Carolina at Chapel Hill’s  TEACCH Autism program  routinely use self-report tools with adults on the spectrum. But the program’s staff have noticed a problem: Caregivers, including parents, siblings, close friends or spouses, tend to describe the adults’ difficulties as more severe than the adults themselves do.

“It’s not clear whether one reporter is more accurate than the other,” says  Laura Klinger , the program’s executive director. A person with autism might minimize or misunderstand a difficulty, but a loved one might equally misinterpret the magnitude of the problem out of concern.

The researchers are trying to work out whether self-report tools come up short in this domain. In an ongoing study, they are looking at a range of self-reports from 40 adults with autism, all of average or above-average intelligence and who have had a diagnosis since childhood. The participants and their caregivers answer a battery of questions about their social life, daily experiences and quality of life, among other topics.

The preliminary results suggest that caregivers and adults with autism often agree on the severity of their autism features, such as  repetitive behaviors .

But caregivers are more likely to notice problems the adults with autism may have with daily living activities, such as maintaining a tidy home or keeping up on their finances. Klinger has found that these activities are predictors of successful employment and quality of life. But if adults on the spectrum can’t describe these challenges using the existing self-report tools and pass self-report ‘daily living’ assessments with flying colors, they may not qualify for job coaching or other support in the home or workplace. “I want to make sure [adults with autism] have the tools to be the best possible advocates for themselves,” says  Rachel Sandercock , a graduate student in Klinger’s lab.

Self-assessments may also help to untangle how people with autism experience conditions such as  anxiety  or  sleep deprivation  differently from their typical peers. To that end,  Amanda Richdale  of La Trobe University in Australia is using multiple self-assessments to study large groups of young adults with autism. “Obviously, questionnaires are only a place to start, but they’re a really good place to start because the findings can lead to more detailed experimental studies,” she says.

Richdale says a broader variety of self-assessments is needed: “I think we could even do more in trying to get self-report from people who are less able.” Visually driven assessments—such as the color-coded scales doctors use to ask people to rate pain—could help nonverbal individuals communicate their experiences. To reach people at the severe end of the autism spectrum, researchers might also adapt quality-of-life measures developed for the intellectually disabled, which draw on careful observations of a person’s behavior over time.

Many autism researchers echo this call for more and improved self-report assessments—a sign that the field is maturing, Kanne says. “Never did I sit down and go, ‘I’m going to develop the best self-report measure.’” Back then, he says, “none of us thought that way.”

Since Lerner launched his drama-based program 14 years ago, the question has shifted from whether scientists should ask people with autism about themselves to how. “The notion that people with autism are just wrong about themselves all the time struck me as implausible,” he says. Now the research has caught up with his impression: People with autism are often the best judges of their own experience.

FURTHER READING

Mounting evidence links mitochondrial DNA to autism

Explaining ‘resilience’ in autism may seed new therapies

Why we need a mouse version of a diagnostic test for autism

Spotlight on mouse models of autism

This story was  originally published  on  Spectrum .

Vaccines and Autism: What Does the Research Tell Us?

Early Communication Support and Strategies

Where did the idea come from?

In the 1990’s, Andrew Wakefield and colleagues published a paper linking the MMR (measles, mumps, and rubella) vaccine to autism. However, the study only looked at 12 children. Additionally, after it was published, other researchers discovered that the paper contained false data. For example, the study stated that all of the children were developing typically before the vaccine when some already had delays. It also stated that some children showed symptoms days after the vaccine when records show the signs of autism started months later. Additionally, it was discovered that Wakefield had been paid by lawyers attempting to sue the vaccine manufacturer. Due to these findings, Wakefield lost his medical license and the journal retracted the paper. This means the journal no longer supported the study’s conclusions.

What does the research tell us?

The possibility of the link between vaccines and autism has been extensively studied. The scientific evidence overwhelming shows no connection between vaccines and autism or any other neurodevelopment disorder. In 2014, a study was conducted that combined the results from many studies to get a clear picture of what all the data show. In total, the researchers analyzed data from over 1 million children! They found no relationship between vaccines and autism. A 2019 paper looked at over 600,000 more children. It concluded that MMR vaccination does not “trigger autism” in children already at risk, such as those with a family history. In other words, vaccines do not cause autism and vaccines do not increase the risk of autism.

What does cause autism?

There is no single cause of autism. Research does suggest that different genetic and environmental factors can increase the chance that a child will develop autism. Genetic factors include times when a certain gene runs in a family or when a gene changes on its own during development in the womb. Examples of environmental factors include complications that happen during pregnancy and birth, such as a child being born very premature or having a very low birth weight. None of these situations cause autism on their own. Researchers are still trying to understand how different factors interact to cause autism.

What does this mean for my child and me?

Parents are the best advocates for their children. It is important to decide what is right for your individual child. It is also important to be knowledgeable about the latest scientific research so you can make informed decisions. Research tells us that vaccines are safe and effective ways to protect your child, and your community, from serious diseases.

Where can I learn more?

The center for disease control statement on vaccine safety.

https://www.cdc.gov/vaccinesafety/concerns/autism.html

The American Academy of Pediatrics Summary of Vaccine Research

https://www.aap.org/en-us/Documents/immunization_vaccine_studies.pdf

Scientific Journals

• Taylor, L.E., Swerdfeger, A.L., & Eslick, G.D. (2014). Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies, Vaccine. doi: 10.1016/j.vaccine.2014.04.085
• Hviid, A., Hansen, J.V., Frisch, M., & Melbye, M. (2019). Measles, mumps, rubella vaccination and autism: A nationwide cohort study. Annals of Internal Medicine . doi: 10.7326/M18-2101

Reputable websites by medical professionals

• An MD’s challenge of common concerns: http://www.howardisms.com/evidence-based-medicine/should-i-vaccinate-my-child/
• History of vaccines by a physician’s organization: https://www.historyofvaccines.org/content/articles/do-vaccines-cause-autism

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Accelerating Science to Improve Early Autism Screening

April 23, 2024 • Feature Story • 75th Anniversary

At a Glance

• Autism is a neurodevelopmental disorder that affects how people interact, communicate, and learn.
• Making early autism screening part of routine health care helps connect families to support and services as early as possible.
• Despite American Academy of Pediatrics guidelines, only a small fraction of pediatricians reported screening for autism at well-child visits.
• NIMH-supported efforts to close the gap between science and practice have yielded key insights into effective strategies for expanding early autism screening.
• Researchers are identifying new tools for detection, new models for delivering services, and new strategies for embedding early autism screening and rapid referral into routine health care.

As many parents of young children know all too well, visits to the pediatrician typically involve answering a series of questions. Health care providers may ask about the child’s eating and sleeping habits or about their progress toward walking, talking, and many other developmental milestones. Increasingly, they’re also asking questions that could help identify early signs of autism.

Autism is a neurodevelopmental disorder that affects how people interact, communicate, behave, and learn. It is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

Today, thanks to research focused on embedding routine screening in well-baby checkups, the early signs of autism can be identified in children as young as 12–14 months. These efforts, many supported by the National Institute of Mental Health (NIMH), show that making early autism screening part of routine health care can have a significant impact on children and families, helping connect them to support and services as early as possible.

“This progress wasn’t inevitable or linear,” explains Lisa Gilotty, Ph.D., Chief of the Research Program on Autism Spectrum Disorders in the Division of Translational Research at NIMH. “Rather, it’s part of an evolving story that reflects the persistent, collective efforts of researchers and clinicians working to translate science into practice.”

Identifying the disconnect

The modern concept of autism as a neurodevelopmental disorder first emerged in the 1940s and coalesced into a diagnostic label by the 1980s. Diagnostic criteria evolved over time and, by the early 2000s, clinicians had evidence-based tools they could use to identify children with autism as early as 36 months. At the same time, evidence suggested that parents may notice signs even earlier, in the child’s second year of life.

“Reducing this gap—between observable signs and later identification and diagnosis—became an urgent target for researchers in the field,” said Dr. Gilotty. “The research clearly showed that kids who were identified early also had earlier access to supports and services, leading to better health and well-being over the long term.”

Researcher Diana Robins, Ph.D.   , then a doctoral student, wondered whether an evidence-based early screening tool might help close the gap. With support from NIMH  , Robins and colleagues developed the Modified Autism Checklist for Toddlers (M-CHAT)   , which they introduced in 2001. They aimed to provide pediatricians with a simple screening measure that could identify children showing signs of autism as early as 24 months.

The science behind early screening continued to build and gain momentum over the next few years. By the mid-2000s, researchers were exploring the possibility of using various developmental screening tools—such as the Communication and Symbolic Behavior Scales, First Year Inventory, and Ages & Stages Questionnaires—to identify early signs of autism.

The growing body of evidence did not go unnoticed. In 2006, the American Academy of Pediatrics (AAP) issued evidence-based guidelines recommending autism-specific screening   for all children at the 18-month visit. In a later update, they recommended adding another autism-specific screening at the 24-month visit, recognizing that some children may start showing signs a bit later in development.

To the research community, these new guidelines signified a huge step forward for science-based practice. But this sense of progress was soon dashed by reality.

When researchers actually surveyed health care providers, they found that very few knew about or followed the AAP guidelines. For example, in a 2006 study   , 82% of pediatricians reported screening for general developmental delays, but only 8% reported screening for autism. Most of the pediatricians said they weren’t familiar with autism-specific screening tools, and many also cited a lack of time as a significant barrier to screening.

The disconnect between science and practice prompted concern in the research community. A series of conversations in scientific meetings and workshops led to a crystallizing moment for the staff at NIMH.

“There was a period of several years in which researchers would go off and do unfunded work and then bring it back to these meetings and say, ‘This is what I've been working on,’” said Dr. Gilotty. “It was an impetus for those of us at NIMH to say, ‘We’re going to do something about this.’”

Bridging the gap

Gilotty worked with colleagues Beverly Pringle, Ph.D., and Denise Juliano-Bult, M.S.W., who were part of NIMH’s Division of Services and Intervention Research (DSIR) at the time, to synthesize several file drawers’ worth of different measures, meeting notes, and research papers and distill them into an NIMH funding announcement.

The announcement, issued in 2013, focused on funding for autism services research in three critical age groups: toddlers  , transition-age youth  , and adults  . NIMH ultimately funded five 5-year research projects that specifically examined screening and services in toddlers. The projects focused on interventions that emphasized early screening and connected children to further evaluation and services within the first two years of life.

In 2014, Denise Pintello, Ph.D., M.S.W., assumed the role of Chief of the Child and Adolescent Research Program in DSIR. She directed the research portfolio that included these projects, which sparked an idea:

“It was such an exciting opportunity to connect these researchers because the projects were all funded together as a cluster,” she said. “I thought, ‘Let’s encourage these exceptional researchers to work closely together.’”

At NIMH’s invitation, the researchers on the projects united to form the ASD Pediatric, Early Detection, Engagement, and Services (ASD PEDS) Research Network. Although the ASD PEDS researchers were using different research approaches in a range of settings, coming together as a network allowed them to share knowledge and resources, analyze data across research sites, and publish their findings together   . The researchers also worked together to identify ways that their data could help address noticeable gaps in the evidence base.

Building on the evidence

Together, the ASD PEDS studies have screened more than 109,000 children, yielding critical insights into the most effective strategies for expanding early autism screening.

For example, an ASD PEDS study   led by Karen Pierce, Ph.D.   , showed the effectiveness of integrating screening, evaluation, and treatment (SET) in an approach called the Get SET Early model.

Working with 203 pediatricians in San Diego County, California, Pierce and colleagues devised a standardized process that the providers could use to screen toddlers for autism at their 12-, 18-, and 24-month well-child visits. The researchers also developed a digital screening platform that scored the results automatically and gave clear guidelines for deciding when to refer a child for further evaluation.

These improvements boosted the rate at which providers referred children for additional evaluation and sped up the transition from screening to evaluation and services. The study also showed that autism can be identified in children as young as 12–14 months old, several years earlier than the nationwide average of 4 years.

This and other studies showed that incorporating universal early screening for autism into regular health care visits was not only feasible but effective. Working closely with health care providers allowed researchers to build trust with the providers and address their concerns.

“There is this sense that if you sit down and really talk with pediatricians, you can bring them into the fold,” said Dr. Gilotty. “Once you get some key people, you get a few more and a few more, and then it becomes something that ‘everybody’ is doing.”

Meeting the need

At the same time, the ASD PEDS studies have also explored ways to reach families with young children outside of primary care settings. Numerous studies have shown that some families are much less likely to have access to early screening and evaluation, including non-English-speaking families, families with low household incomes, and families from certain racial and ethnic minority groups.

“Screening is most effective when everyone who needs it has access to it,” said Dr. Pintello. “Addressing these disparities is a critical issue in the field and NIMH’s efforts have prioritized focusing on underserved families.”

One way to accomplish this is to integrate standardized universal screening into systems that are already serving these families. For example, in one study , ASD PEDS investigators Alice Carter, Ph.D.   , and Radley Christopher Sheldrick, Ph.D.   , worked with the Massachusetts Department of Public Health to implement an evidence-based screening procedure at three federally funded early intervention sites.

The researchers developed a multi-part screening and diagnosis process that included both clinicians and caregivers as key decision-makers. They hypothesized that this standardized process would minimize procedural variations across the early intervention sites and help to reduce existing disparities in ASD screening and diagnosis.

The results suggested their hunch was correct. All three study sites showed an increase in the rate of autism diagnosis with the new procedure in place, compared with other intervention sites that served similar communities. Importantly, the standardized procedure seemed to address existing disparities in screening and diagnosis. The increased rate of diagnosis observed among Spanish-speaking families was more than double the increase observed among non-Spanish-speaking families.

Looking to the future

Researchers are continuing to explore the best ways to put existing evidence-based screening methods into practice. At the same time, NIMH is also focused on research that seeks to develop new and improved screening tools. Evidence from neuroimaging and eye tracking studies suggests that, although the age at which observable features of autism emerge does vary, subtle signs can be detected in the first year of life. NIMH is supporting a suite of projects that aim to validate screening tools that can be used to identify signs of autism before a child’s first birthday.

“In other words, are there measures we can use to identify signs even before parents and clinicians begin to notice them?” explained Dr. Gilotty. “This is the critical question because the earlier kids are identified, the earlier they can be connected with support.”

These projects leverage sophisticated digital tools to detect subtle patterns in infant behavior. For example, researchers are using technology to identify patterns in what infants look at, the vocalizations they make, and how they move. They’re using technology to examine synchrony in infant–caregiver interactions. And they’re developing digital screening tools that can be administered via telehealth platforms.

The hope is that new tools identified and validated in this first stage will go on to be tested in large-scale, real-world contexts, reflecting a continuous pipeline of research that goes from science to practice.

“As a result of targeted research funded by NIMH over the last 10 years, we are seeing new tools for detection, new models for delivering services, and new strategies for embedding early screening and rapid referral into routine health care,” said Dr. Pintello.

“I feel like it’s just the beginning of the story—we are just now seeing the impact of bringing science-based tools and practices into the hands of health care providers. Over the next few years, we hope that ongoing efforts to bridge science and practice will help us meet the unique needs of children at the exact time that they need services.”

Publications

Broder Fingert, S., Carter, A., Pierce, K., Stone, W. L., Wetherby, A., Scheldrick, C., Smith, C., Bacon, E., James, S. N., Ibañez, L., & Feinberg, E. (2019). Implementing systems-based innovations to improve access to early screening, diagnosis, and treatment services for children with autism spectrum disorder: An Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services network study. Autism , 23 (3), 653–664. https://doi.org/10.1177/1362361318766238  

DosReis, S., Weiner, C., Johnson, L., & Newschaffer, C. (2006). Autism spectrum disorder screening and management practices among general pediatric providers. Journal of Developmental and Behavioral Pediatrics , 27 (2), S88–S94. https://doi.org/10.1097/00004703-200604002-00006  

Eisenhower, A., Martinez Pedraza, F., Sheldrick, R. C., Frenette, E., Hoch, N., Brunt, S., & Carter, A. S. (2021). Multi-stage screening in early intervention: A critical strategy for improving ASD identification and addressing disparities. Journal of Autism and Developmental Disorders, 51 , 868–883. https://doi.org/10.1007/s10803-020-04429-z  

Feinberg, E., Augustyn, M., Broder-Fingert, S., Bennett, A., Weitzman, C., Kuhn, J., Hickey, E., Chu, A., Levinson, J., Sandler Eilenberg, J., Silverstein, M., Cabral, H. J., Patts, G., Diaz-Linhart, Y., Fernandez-Pastrana, I., Rosenberg, J., Miller, J. S., Guevara, J. P., Fenick, A. M., & Blum, N. J. (2021). Effect of family navigation on diagnostic ascertainment among children at risk for autism: A randomized clinical trial from DBPNet. JAMA Pediatrics , 175 (3), 243–250. https://doi.org/10.1001/jamapediatrics.2020.5218  

Pierce, K., Gazestani, V., Bacon, E., Courchesne, E., Cheng, A., Barnes, C. C., Nalabolu, S., Cha, D., Arias, S., Lopez, L., Pham, C., Gaines, K., Gyurjyan, G., Cook-Clark, T., & Karins, K. (2021). Get SET Early to identify and treatment refer autism spectrum disorder at 1 year and discover factors that influence early diagnosis. The Journal of Pediatrics, 236 , 179–188. https://doi.org/10.1016/j.jpeds.2021.04.041  

Robins, D. L., Fein, D., Barton, M. L., & Green, J. A. (2001). The Modified Checklist for Autism in Toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders , 31 , 131–144. https://doi.org/10.1023/A:1010738829569  

Sheldrick, R. C., Carter, A. S., Eisenhower, A., Mackie, T. I., Cole, M. B., Hoch, N., Brunt, S., & Pedraza, F. M. (2022). Effectiveness of screening in early intervention settings to improve diagnosis of autism and reduce health disparities.  JAMA Pediatrics , 176 (3) ,  262–269. https://doi.org/10.1001/jamapediatrics.2021.5380  

• NIMH Health Information Page: Autism Spectrum Disorder
• NIMH Brochure: Autism Spectrum Disorder
• NIMH Statistics Information: Autism Spectrum Disorder (ASD)
• NLM MedlinePlus: Autism Spectrum Disorder 
• HHS Interagency Autism Coordinating Committee 

Study identifies new metric for diagnosing autism

Autism spectrum disorder has yet to be linked to a single cause, due to the wide range of its symptoms and severity. However, a study by University of Virginia researchers suggests a promising new approach to finding answers, one that could lead to advances in the study of other neurological conditions.

Current approaches to autism research involve observing and understanding the disorder through the study of its behavioral consequences, using techniques like functional magnetic resonance imaging that map the brain's responses to input and activity, but little work has been done to understand what's causing those responses.

However, researchers with UVA's College and Graduate School of Arts & Sciences have been able to better understand the physiological differences between the brain structures of autistic and non-autistic individuals through the use of Diffusion MRI, a technique that measures molecular diffusion in biological tissue, to observe how water moves throughout the brain and interacts with cellular membranes. The approach has helped the UVA team develop mathematical models of brain microstructures that have helped identify structural differences in the brains of those with autism and those without.

"It hasn't been well understood what those differences might be," said Benjamin Newman, a postdoctoral researcher with UVA's Department of Psychology, recent graduate of UVA School of Medicine's neuroscience graduate program and lead author of a paper published this month in PLOS: One . "This new approach looks at the neuronal differences contributing to the etiology of autism spectrum disorder."

Building on the work of Alan Hodgkin and Andrew Huxley, who won the 1963 Nobel Prize in Medicine for describing the electrochemical conductivity characteristics of neurons, Newman and his co-authors applied those concepts to understand how that conductivity differs in those with autism and those without, using the latest neuroimaging data and computational methodologies. The result is a first-of-its-kind approach to calculating the conductivity of neural axons and their capacity to carry information through the brain. The study also offers evidence that those microstructural differences are directly related to participants' scores on the Social Communication Questionnaire, a common clinical tool for diagnosing autism.

"What we're seeing is that there's a difference in the diameter of the microstructural components in the brains of autistic people that can cause them to conduct electricity slower," Newman said. "It's the structure that constrains how the function of the brain works."

One of Newman's co-authors, John Darrell Van Horn, a professor of psychology and data science at UVA, said, that so often we try to understand autism through a collection of behavioral patterns which might be unusual or seem different.

"But understanding those behaviors can be a bit subjective, depending on who's doing the observing," Van Horn said. "We need greater fidelity in terms of the physiological metrics that we have so that we can better understand where those behaviors coming from. This is the first time this kind of metric has been applied in a clinical population, and it sheds some interesting light on the origins of ASD."

Van Horn said there's been a lot of work done with functional magnetic resonance imaging, looking at blood oxygen related signal changes in autistic individuals, but this research, he said "Goes a little bit deeper."

"It's asking not if there's a particular cognitive functional activation difference; it's asking how the brain actually conducts information around itself through these dynamic networks," Van Horn said. "And I think that we've been successful showing that there's something that's uniquely different about autistic-spectrum-disorder-diagnosed individuals relative to otherwise typically developing control subjects."

Newman and Van Horn, along with co-authors Jason Druzgal and Kevin Pelphrey from the UVA School of Medicine, are affiliated with the National Institute of Health's Autism Center of Excellence (ACE), an initiative that supports large-scale multidisciplinary and multi-institutional studies on ASD with the aim of determining the disorder's causes and potential treatments.

According to Pelphrey, a neuroscientist and expert on brain development and the study's principal investigator, the overarching aim of the ACE project is to lead the way in developing a precision medicine approach to autism.

"This study provides the foundation for a biological target to measure treatment response and allows us to identify avenues for future treatments to be developed," he said.

Van Horn added that study may also have implications for the examination, diagnosis, and treatment of other neurological disorders like Parkinson's and Alzheimer's.

"This is a new tool for measuring the properties of neurons which we are particularly excited about. We are still exploring what we might be able to detect with it," Van Horn said.

• Birth Defects
• Medical Devices
• Nervous System
• Brain Tumor
• Learning Disorders
• Disorders and Syndromes
• Autistic spectrum
• Brain damage
• Social cognition
• Rett syndrome
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• Learning disability

Story Source:

Materials provided by University of Virginia College and Graduate School of Arts & Sciences . Original written by Russ Bahorsky. Note: Content may be edited for style and length.

Journal Reference :

• Benjamin T. Newman, Zachary Jacokes, Siva Venkadesh, Sara J. Webb, Natalia M. Kleinhans, James C. McPartland, T. Jason Druzgal, Kevin A. Pelphrey, John Darrell Van Horn. Conduction velocity, G-ratio, and extracellular water as microstructural characteristics of autism spectrum disorder . PLOS ONE , 2024; 19 (4): e0301964 DOI: 10.1371/journal.pone.0301964

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Aimee grant investigates the needs of autistic people.

Her research focuses on reproductive health care

Public health researcher Aimee Grant considers autism a cognitive difference, rather than a deficit.

Matthew Arthur

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By Saima S. Iqbal

April 19, 2024 at 9:30 am

Before becoming a researcher, Aimee Grant worked as a caregiver for six years in Cornwall, England, supporting autistic adults in group homes. But only more than a decade later, after befriending an autistic colleague at a sociology conference, did she realize she was autistic herself.

The stereotypical view of autism as a brain impairment more commonly found in men made it difficult for Grant to make sense of her internal world. From an early age, she struggled to pick up on important social cues and found the sounds and scents in her environment distractingly painful. But like many children in her generation, she says, she grew accustomed to either dismissing or disguising her discomfort. It was by listening to some of the stories of her female peers that Grant saw that the label could fit.

Receiving a diagnosis in 2019 prompted her to “reframe [my] entire life,” she says. She began working with her mind rather than against it. She no longer felt the same pressure to seem as nonautistic as possible with friends and family members, and she began to make use of accommodations at work, such as a light filter for her computer monitor. Today, as a public health researcher at Swansea University in Wales, Grant aims to uncover the lived experience of autistic people. Many scientists and clinicians see autism as a developmental disorder that hinders a person’s ability to understand and communicate with others. Grant believes that their work often obscures the heterogeneity of autism. And because many studies view autism as a disease, they overlook the reality that autistic people can feel more disabled by widespread misunderstanding and a lack of accommodations than by autistic traits themselves.

My work has a purpose: to make lives better for marginalized groups. Aimee Grant

In line with the thinking of the neurodiversity movement that emerged in the 1990s, Grant views autism as a cognitive difference, rather than a deficit: an alternative way of being in the world just as deserving of understanding and acceptance as any other. “I would say I’m disabled because of a range of different things, including being autistic,” she explains. (Grant has dyslexia and uses a wheelchair.) “But were I in a different environment, I don’t think I’d necessarily be disabled by being autistic — I think it’s those kinds of neurotypical expectations that can make life quite difficult.”

So Grant is asking a different research question: What might autistic people need?

She’s among a growing group of neurodivergent researchers whose science seeks to better serve its participants. Large surveys conducted in the United States and the United Kingdom  suggest that the majority of autistic people would choose to spend research dollars on actionable studies on well-being versus studies of the basic science of autism. At conferences and in private Facebook groups, researchers trying to shift science’s focus now number in the hundreds.

Grant’s current work centers on autistic mothers and parents with wombs. Through extensive surveys and interviews, she’s studied the barriers some autistic parents face in breastfeeding and identified ways clinicians can temper the pain of their patients’ pregnancy loss, such as by using clear and direct language or allowing partners or patient advocates into hospital rooms. On a YouTube channel she helped launch last year, autistic people share details of pregnancy and parenting . And she’s cofounded the Autistic Health Research Network , a small but international association of researchers seeking to better health care outcomes in the autistic community.

A passion for improving lives powers her research and outreach, says Karen Henry, a lecturer in midwifery at the University of Suffolk in England. Both Henry and Grant are part of the U.K.-based Maternity Autism Research Group . “I don’t know how she has enough hours in the day.”

Reimagining autism research

Grant’s work aims not only to serve study participants, but also to amplify their voices. By aggregating personal accounts, her research gives participants’ testimonies weight they often lack on their own, Henry says.

In one breastfeeding study, published last November in Maternal & Child Nutrition , Grant’s team surveyed 152 autistic birthing parents in the United Kingdom . The team found that nearly 70 percent of participants enjoyed breastfeeding overall. But 45 percent reported dealing with pain roughly half the time or more. One parent likened the feeling of the let-down reflex that gets breastmilk flowing to “an old-fashioned telephone ringing in my breasts.”

Still, most remained committed to breastfeeding, which the World Health Organization recommends women do exclusively for at least six months. The parents came up with creative solutions to ease their discomfort, including wearing clothing that exposed less of the most sensitive skin, wearing nipple shields and distracting themselves with videos or games on their phones.

Parents who received support from health care professionals, such as midwives or lactation consultants, tended to have a much easier time with breastfeeding. But nearly half of study participants had a negative interaction with at least one clinician, either struggling to access services, receiving incomplete or conflicting health information, or even feeling that their struggles were flat-out dismissed.

In the United Kingdom, just 1 percent of all mothers meet the WHO’s six-month recommendation, according to the latest available data from 2010. Grant and colleagues attribute this low rate to structural impediments, such as inadequate support for breastfeeding parents and aggressive campaigning by the formula industry, not to a lack of trying on the part of parents.

Grant says she has always wanted to “change perceptions about groups,” especially those criticized in the media, in regards to the broader ethos of her work, “to help the wider public recognize just how hard that group is working.”

To shed light on things that might not be known by policy makers, Grant has communicated her findings to the public in news articles and at conferences. The YouTube channel she helped launch now features more than a hundred clips of autistic parents and maternity experts sharing their expertise.

In 2022 Grant won a $3 million grant for an expansive study characterizing the broad reproductive health care needs of autistic people with wombs, from menstruation to menopause. The project, funded by Wellcome, will recruit 100 participants, interviewing them every six months for a total of five years.

“There’s a lot more questions than answers at the moment,” Grant says. Some of her team’s questions include: How can individuals manage the sensation of a period cramp or of ultrasound gel? What contraceptives do participants use, and what are their experiences? Are there differences in how autistic people sense and communicate bodily pain to health care professionals compared with what the research says of nonautistic people?

A project of such size and duration will identify areas where autistic people’s health care needs are not being met, Grant predicts. It may uncover positives of the autistic experience, as well as new avenues for research. Her team plans to keep the interviews loosely structured to “give people the space to talk about the things that are important to them.”

The team — made up entirely of autistic researchers — aims to capture the diversity within the community by partnering with autism organizations that serve individuals of various ethnic backgrounds and learning abilities, by paying participants for their time and for sign language interpreters if needed, and by allowing participants to choose to respond to questions through a video call, on the phone or via email. The researchers will also use their own neurodivergent perspectives to anticipate hurdles for participants: for example, putting text in fonts and colors that are easier to read or eliminating exclusionary phrases such as “autistic women,” which leaves out transgender and nonbinary people with wombs.

Grant is “really one of those practice-what-you-preach people,” says Rebecca Ellis of Swansea, one of four research assistants working on the project. “She is continually making sure that she can be as inclusive as possible and amplify the voices that get heard the least.”

Keeping an open mind

Grant doesn’t claim to have the single answer on what research on autism should look like; she’s committed to having an open mind. “I’m sure in 10 years we’ll have even more of a social model of autism,” she says, referring to a well-established view of autism as a disability constructed in large part by society, “and where we are now will seem outdated.” For now, she’s helping to get different perspectives in the room, collecting evidence for the theory that one’s environment can be more disabling than one’s predisposition.

Grant’s path to science may be part of what makes her work so unconventional.

Growing up, she did not expect to become a researcher. Her father was a firefighter, and her mother a housewife. In school, she just kept pursuing “the next thing that was interesting.” She attributes where she is today in large part to chance.

She pursued a Ph.D. in social policy at Cardiff University, where she studied competing political narratives around disability-benefit users, debunking a prominent myth that claimants were exploiting the welfare system. After completing that work, she needed to find a job near her home in order to reserve a spot on a waiting list for much-needed surgery. She worked in Cardiff as a research assistant, studying how well the National Health Service’s smoking cessation programs work, and then was asked to shift her focus to maternity. After her own autism diagnosis, she began to focus on autistic parents.

Along the way, she tended to be drawn to and stick with jobs with a social justice ethos. “My work has a purpose: to make lives better for marginalized groups,” she says. “It’s almost painful for me to do research that isn’t in those areas.”

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Update about “minimally verbal” children with autism spectrum disorder

Atualização sobre crianças “minimamente verbais” com transtorno do espectro do autismo, annio posar.

a IRCCS Istituto delle Scienze Neurologiche di Bologna, UOC Neuropsichiatria Infantile, Bologna, Italia.

Paola Visconti

The authors declare there is no conflict of interests.

Author’s contributions

To review clinical and neurobiological features of minimally verbal children with autism spectrum disorder.

Data source:

We carried out a narrative review using the PubMed database. We considered the following search terms combined through the Boolean operator “AND”: “autism spectrum disorder”; “minimally verbal.”

Data synthesis:

To date, there is no shared definition of minimally verbal children with autism spectrum disorder. The heterogeneity in intellectual functioning and in linguistic abilities among these individuals suggests there is no single mechanism underlying their difficulties in learning to speak. However, the reasons why these children do not speak and the biological markers that can identify them are still unknown. Language impairment in these children can lead to several unfavorable consequences, including behavior problems (such as self-aggression, hetero-aggression, and property destruction), poorer daily living and social skills. Psychiatric comorbidities (including attention deficit/hyperactivity disorder, specific phobias, and compulsions) consist in a serious problem related to the lack of verbal language in individuals with autism spectrum disorder. Although in the literature there are very few evidence-based results, several findings suggest that an alternative and augmentative communication intervention, creating an extra-verbal communication channel, may be effective in these individuals.

Conclusions:

The exact definition, clinical characteristics, associated disorders, etiology, and treatment of minimally verbal subjects with autism spectrum disorder must still be further studied and understood.

Revisar as características clínicas e neurobiológicas de crianças minimamente verbais com transtorno do espectro do autismo.

Fontes de dados:

Realizamos uma revisão narrativa utilizando o banco de dados PubMed. Foram considerados os seguintes termos de pesquisa combinados através do operador booleano “AND”: “transtorno do espectro autista”; “Minimamente verbal”.

Síntese dos dados:

Até o momento, não existe uma definição compartilhada de crianças minimamente verbais com transtorno do espectro do autismo. A heterogeneidade no funcionamento intelectual e nas habilidades linguísticas entre esses indivíduos sugere que não há um mecanismo único subjacente às dificuldades de aprender a falar. No entanto, não sabemos os motivos pelos quais essas crianças não falam, nem os marcadores biológicos que podem identificá-las. O comprometimento da linguagem nessas crianças pode levar a várias conseqüências desfavoráveis, incluindo problemas de comportamento (como auto-agressão, hetero-agressão e destruição de propriedades), pior qualidade de vida diária e habilidades sociais. A comorbidade psiquiátrica (incluindo transtorno de déficit de atenção/hiperatividade, fobias específicas, compulsões) é um problema grave relacionado à falta de linguagem verbal em indivíduos com transtorno do espectro do autismo. Embora na literatura existam muito poucos resultados baseados em evidências, vários achados sugerem que uma intervenção de comunicação alternativa e aumentativa, criando um canal de comunicação extra-verbal, pode ser eficaz nesses indivíduos.

Conclusões:

Muito ainda precisa ser entendido sobre a definição exata, características clínicas, distúrbios associados, etiologia e tratamento de indivíduos minimamente verbais com transtorno do espectro do autismo.

INTRODUCTION

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), 1 the criteria for autism spectrum disorder (ASD) diagnosis include the presence of persisting deficits of social communication and social interaction in different contexts as well as patterns of restricted and repetitive behaviors, interests or activities. ASD symptoms often appear in early childhood, but may fully manifest later, and they significantly impact the daily functioning of affected individuals. One aspect that must not be overlooked is that symptoms are not explained by the global developmental delay or by the intellectual disability that are often associated with ASD. Compared with its previous versions, 2 the DSM-5 proposed more specific diagnostic criteria for ASD, and language disorders are no longer considered as a central feature of ASD. 1 However, a variable degree of verbal language impairment is usually presented by ASD individuals. At first, about 25–30% of ASD children do not develop any functional verbal language or stay minimally verbal (MV). 3 – 5 That is, from an epidemiological point of view, in the general population the number of nonverbal or MV ASD children is not negligible at all. In the United States of America, ASD prevalence at the age of 8 years, according to DSM-5 criteria, 1 is now 18.5 per 1,000 children, that is, 1 child out of 54 has an ASD. 6 Therefore, it could be assumed that, at least in the USA, at the age of 8 years, about 5 out of 1,000 children (i.e., 1 out of 200) have an ASD and, at the same time, are nonverbal or MV. Consequently, the problem of MV children with ASD is very important also because of its considerable social and welfare costs. Nevertheless, there is no exact and broad definition of MV in the field of ASD yet; in this review, the “MV” abbreviation will also be used to refer to ASD children with completely absent speech.

A narrative review using the PubMed database (United States National Library of Medicine) was carried out. The following search terms combined through the Boolean operator “AND” were considered: “autism spectrum disorder”; and “minimally verbal.” Initially, 85 studies were selected and read. Then, studies that only marginally addressed the topic of ASD children who are MV were excluded as well as those addressing very specific aspects of this topic. Both authors of the present review participated in this selection. Thus, 17 studies were finally selected, comprising reviews (either systematic or non-systematic) and original articles written in English, performed anywhere, addressing the subject of definition, diagnosis, neurobiology, clinical findings, associated problems, prognosis, and treatment of ASD individuals who are MV ( Figure 1 ). Additional relevant bibliographic references related to the topic were also considered; such references have been mentioned in the studies selected by PubMed or have somehow been acknowledged by the authors. The references included in this review were analyzed in detail by A.P.

Language and autism spectrum disorder

The impairment of early verbal communication is usually one of the first concerns reported by parents of ASD children. 7 In these individuals, the severity and the characteristics of language impairment greatly varies depending on the case. Strictly speaking, nonverbal children are not MV children; but these two expressions, both in clinical practice and in literature, are actually and often interchangeably used.

Most ASD children develop verbal language in the preschool period, but its progress can occur later as well. 8 , 9 Their language, however, presents a series of irregularities, including in prosody, pragmatics, and semantics, which make it very peculiar, but will not be covered in this article. It is worth mentioning that the problem of communication in individuals with ASD is not limited to verbal language, but also involves other areas of communication including mimicry and gestures. Regardless of ASD, the severe or relative lack of language is a negative factor for intellectual development, as indirectly suggested several decades ago by the pioneering work of Lev Vygotskji, who studied how language acquisition can influence the cognitive development of children. 10 However, according to Munson et al., 11 this does not mean that MV subjects always have a relevant deficit of nonverbal intellectual functioning, as shown by the results obtained by many of these individuals when assessed through standardized tests for intelligence quotient (IQ) bypassing the verbal channel such as the Leiter International Performance Scale. 12 On the other hand, while some MV children with ASD have low expressive and receptive verbal skills, others have good (or relatively good) receptive abilities, which somehow seem to be related to their nonverbal skills, 13 though being difficult to evaluate in these children. 14 This heterogeneity in intellectual functioning and linguistic abilities between MV individuals with ASD suggests there is no single mechanism underlying their difficulties in learning to speak. 3

Language impairment in ASD children, and particularly in MV ones, can lead to various unfavorable consequences, including behavior problems (such as self-aggression, hetero-aggression, and property destruction), 15 – 17 poorer daily living and social skills. 18 Sometimes, behavior problems can become so severe and difficult to manage, and they start being called “challenging behaviors.” 19 As expected, these individuals are affected by negative repercussions regarding the school environment, work opportunities, and independent life, and lower quality of life and reduced opportunities for participation in the community have been reported for MV individuals. 20 , 21

Psychiatric comorbidities consist in a serious problem related to the lack of verbal language in ASD individuals. Plesa Skwerer et al. studied 65 MV children and adolescents with ASD. They found a wide range of concomitant psychopathological disorders (including attention-deficit/hyperactivity disorder [ADHD], specific phobias, and compulsions) and a high degree of maladaptive behavior, not directly due to the severity of autistic symptoms, intellectual disabilities, or limitations in adaptive functioning. 22

Williams et al. have a different perspective; the authors compared individuals with ASD hospitalized in a psychiatric institution (age range: 4–20 years): 169 MV subjects versus 177 individuals with fluent verbal language. They found no significant differences in the severity of self-injury, stereotyped behavior, and irritability (including aggression and anger) when data were controlled for age and nonverbal IQ. However, a problem of sample selection bias can be hypothesized (of which the authors were also aware): all cases were “psychiatric inpatients,” thus they were likely predisposed to behavioral problems. 23

Concerning the prognosis of MV children with ASD, it is known that if a child manages to acquire verbal language, this usually occurs within 5 years of life. 3 However, exceptions to this general rule have been reported, considering that verbal language can be acquired between 5 and 7 years of age or (although more rarely) even later, up to the age of 13 years. 24 Regarding other aspects of the prognosis, the development of useful speech within the age of 5 years seems to be a very important predictive factor of better outcomes in the following years, as it concerns adaptive and social functioning. 3

How to define minimally verbal children?

The lack of a broad definition of MV children is somehow noteworthy. In the context of children with ASD, the proportion of those who are MV depends on the criteria used to identify them. For example, Kasari et al. defined MV children as those communicatively using “[…] a very small repertoire of spoken words or fixed phrases…”; the number of spoken words may greatly vary, ranging from 0 to 20–30, depending on several factors such as age and previous interventions. 25 In order to identify MV children, many researchers utilize clues deriving from the diagnostic tools for ASD. For instance, according to many authors, children are considered MV if they have been assessed through the Autism Diagnostic Observation Schedule (ADOS) — Module 1. 26 The ADOS, currently available in its second edition, is nowadays considered the gold standard for the ASD diagnosis, and the Module 1 of this scale is focused on children aged over 30 months who speak few or no words. 27 This method may be preferable in some respects, considering that ADOS also allows the direct assessment of the individual, but it is not a foolproof method. In fact, Module 1 of the current version of ADOS consists of two submodules, devoted to children with greater or lesser language impairment, respectively; consequently, the language of children who undergo this module can widely vary from the complete absence of speech to the regular use of expressions composed of two or more words (see item A1 of ADOS Module 1). 27 Therefore, including all these ASD children under one definition of MV could be misleading; and it is a fact that, within the definition of MV, there are very different situations. 26

Another method is based on the use of words according to parents’ reports: it identifies children as MV when their language skills are not exceeding those of a baby aged 18 months, who mainly uses single words or gestures for communicating; this is perhaps a less objective method than the previous one, but it gives information on the real everyday life of the child. According to the results obtained in a study on a large sample including 1478 ASD individuals aged 5-18 years, through the method of ADOS Module 1, 28% of ASD children should be MV; instead, according to the method of language skills not exceeding those of a 18-month baby, only 13% should be MV. 28

Therefore, it is evident that issues related to an exact definition of MV are paramount. For instance, in a review addressing a certain ASD intervention, grouping, within the MV phenotype, the data on the evolution of children who, at the beginning of the intervention, speak only one or two words with those of children who speak a few dozen words may lead to significant misinterpretations of the obtained results. 21

Koegel et al. carried out a systematic review of the definitions of nonverbal or MV individuals and the communication assessment measures in intervention studies aimed at improving expressive verbal communication in ASD children. They found relatively few studies focusing on verbal expressive communication in nonverbal or MV children with ASD. The authors verified great inconsistencies in the adopted measures, in the definitions of “nonverbal” and “MV” children, and in the studied ages, which can cause confusion in the interpretation of the results of the various studies. They suggested guidelines for creating a more homogeneous evaluation protocol with systematic descriptions of the samples, in order to understand the heterogeneity in these ASD individuals and to replicate the results of the research that concerns them. The recommendations included in these guidelines refer, among other things, to the importance of: identifying the participants as nonverbal or MV; evaluating the language through standardized and observational measures, also considering a natural sample of interactive communication, if possible with a communication partner who is familiar to the child; and also examining the intellectual functioning of the child. 21

Neurobiology of minimally verbal individuals

Neurophysiological techniques, as well as structural and functional neuroimaging ones, have been applied to look for possible abnormalities in children with ASD, in order to explain the evolution of language. 20 Next, only some of the most relevant obtained results are demonstrated.

Ortiz-Mantilla et al. performed an electroencephalogram-based study to investigate neural mechanisms that underlie the visual processing of common objects in MV children with ASD. A paradigm consisting of a picture, followed by a word that could be right or wrong, was presented to 10 MV children of 4–7 years old with ASD and to 15 sex- and age-matched controls. Event-related cortical responses during visual stimulus processing were studied. When compared with controls, responses of lower amplitude and longer latency were recorded in MV children with ASD as well as other bioelectric alterations in the occipital and frontal regions. The authors concluded that visual processing, both in the early and late stages, is impaired in MV children with ASD, and at least some of their linguistic alterations could derive from an impairment of cortical representations of the object and its verbal label and also from a reduced allocation of attention to visual stimuli, which would have a negative impact on lexicon acquisition. 29

Concerning neuroimaging techniques, Knaus et al. studied possible anatomical differences between ASD individuals with more or less severely impaired expressive language and ASD individuals without such deficits using volumetric brain magnetic resonance imaging (MRI). They included 34 ASD boys aged 7–11 years divided into two groups: individuals with impaired expressive language (17 cases) and those with average or high language (17 cases) respectively. The first group was further subdivided into a low (9 cases) and an extremely low (8 cases) language subgroup (this latter basically corresponding to MV children). The volume of the planum temporale (PT) was smaller in individuals with expressive language impairment than in those without it. The right PT volume was positively correlated with expressive, receptive, and total language abilities. The volume of the left PT was smaller in the individuals with extremely low language than in those with average or moderately low language. The authors concluded that, in ASD individuals, smaller PT volumes are associated with severe language impairments. 30 Moreover, cortical structural abnormalities in the inferior frontal gyrus have been reported for these children. 31

On the other hand, it has been suggested that microstructural alterations of white matter tracts, such as the arcuate fasciculus (connecting Broca’s and Wernicke’s areas) and the frontal aslant tract (connecting the posterior inferior frontal gyrus and the brain frontomesial region), showed by magnetic resonance with diffusion tensor imaging (DTI), may be involved in the impairment of spoken language of MV subjects with ASD. 32

While ASD individuals often present a more or less severe impairment of language, music skills are usually preserved, although brain regions involved in these functions commonly overlap. Based on this observation, Lai et al. found a higher activation in the left inferior frontal gyrus in response to song stimulation through functional MRI in 36 ASD low-functioning children, who were mostly MV, but a lower activation in response to speech stimulation. These results support the hypothesis of an atypical attention to auditory stimuli in ASD individuals: reduced for speech, but increased for songs. 33

However, despite the described findings, it is still unknown how the reported brain functional and structural alterations might explain the language problems in ASD children. 20 To date, to the best of the authors’ knowledge, there are no biological markers that identify MV individuals with ASD.

Cognitive mechanisms and language in autism spectrum disorder

Several studies have addressed the topic of cognitive mechanisms likely involved in the altered or even absent development of verbal language in ASD children. Although these studies have not achieved unequivocal and conclusive results, they suggested the presence of data supporting the involvement of some variables related to social communication in expressive language development, such as joint attention, spontaneous play, gestures (including pointing), and imitation (both vocal and motor) abilities; moreover, the early nonverbal intellectual ability has been related to the development of expressive language. 34 – 37 In particular, joint attention is the skill (commonly developed in the first year of life) of responding to others’ social initiatives and spontaneously engaging in social interactions with other people, in addition to integrating these two abilities. 38 Joint attention has been found to predict the development of language skills in both typically-developing children and those with ASD 34 , 38 , and this is evidently a very important finding also regarding interventions aimed at the development of long-term spoken language. 39

Thus, an impairment of joint attention, pointing, spontaneous play, imitation skills, together with a more or less severe delay in verbal language development, are likely to be among the early symptoms of autism most often reported by parents when the child ages up to 18 months old. 40

Treatment for minimally verbal children with autism spectrum disorder

Considering that most studies investigated communication-focused interventions in verbal children with ASD, while their efficacy in MV children with ASD is unknown, Brignell et al. performed a systematic review on this last issue. 20 They considered randomized controlled trials (RCTs) related to communication-focused interventions for children with ASD who were MV, that is, according to their definition, children who spoke less than 30 functional words and/or were unable to use verbal language alone to communicate. The authors found only two RCTs that compared MV children undergoing communication-focused interventions with MV controls undergoing their usual treatment. One RCT 41 used a verbally-based intervention performed by parents at home (focused playtime intervention — FPI), while the other one 42 used an alternative and augmentative communication (AAC) intervention carried out by teachers at school through the Picture Exchange Communication System (PECS), which allows individuals to quickly communicate to others, for example, their needs using picture cards. The FPI study considered 70 MV children with ASD and focused on promoting coordinated toy play between the parent (who had received a specific training) and the child. The AAC study considered 84 MV children with ASD who were not using the PECS method yet. Brignell et al. found a very low overall quality of evidence due to the risk of bias (including the lack of blinding for participants and personnel), imprecision (small size of the samples), and also because only one trial was identified for each intervention type (verbally-based and AAC, respectively). Both trials mainly focused on verbal and nonverbal communication outcomes, and the study concerning AAC intervention also focused on social communication skills. The FPI trial showed no significant results in verbal communication. Nevertheless, cases with poorer expressive language before treatment improved more than those with better expressive language, and FPI promoted expressive language improvements in some cases. 41 The AAC study found that cases enrolled immediately postintervention used significantly more verbal initiations and PECS, but unfortunately these gains were not confirmed 10 months later. In immediately postintervention, no significant improvements were found with AAC on speech frequency, verbal expressive vocabulary, or social communication skills or pragmatic language. 42 Overall, in most cases, both FPI and AAC trials showed no sustained gains in verbal or nonverbal communication skills. 20

Assuming that the role of parent education is essential for the treatment of ASD subjects and in particular of MV ones, Koegel et al. performed a systematic review on the procedures of parent education in intervention studies aimed at improving verbal communication of MV children. Unfortunately, they found that only 36 studies have considered a parent education component; in most articles, parent education programs were not clearly described, and only in few studies the implementation of parents’ intervention was scored. 43

However, although the literature on the matter has provided very few evidence-based results, several findings suggest that an intervention, such as the AAC, considering a communication channel for the individual, may be effective in stopping the sequence of events that, in MV children with ASD, can cause frustration to build up and trigger challenging behaviors and, finally, accentuate social isolation ( Figure 2 ). In particular, PECS represents an effective means of enabling functional communication for individuals who have little or no speech, even though it showed a relative lack of relevant gains concerning speech. 44 – 47 It is worth noting that AAC includes, in addition to PECS, other types of interventions, including the use of speech-generating devices (SGDs) that, upon command of the user, are able to produce previously recorded or computer-generated speech. 48 SGDs seem to be most effective for ASD individuals without intellectual/developmental disorders (IDD), especially in preschool age, whereas PECS seems to be most effective for ASD individuals with IDD. 48

First, the limitations of this narrative review should be mentioned, which are basically related to a possible selection bias due to the subjective evaluation of the studies on the part of the authors. However, it is worth highlighting that the study methodology of a narrative review is more indicated than a systematic review in cases when the aim is to provide a broad perspective on a subject. 49

Although to date there are many notions about the clinical aspects of ASD, including diagnostic criteria, associated disorders, prognosis, and effective treatments, there is no agreement yet on the exact and detailed definition of MV children with ASD or on how to precisely identify them. Hence, the exact number of MV children with ASD is unknown, but it is surely high, particularly based on the most recent epidemiological data about the general prevalence of ASD. 6 From the authors’ perspective, in order to better understand the clinical features and the neurobiological correlates of this subgroup of individuals with ASD, it would be appropriate to define them with very rigorous diagnostic criteria, considering individuals as MV only when their language level corresponds, at most, to the level of single words, and their chronological age is at least 5–7 years, considering that a significant recovery of language skills is much more unlikely later in life. 24 It is evident, for example, that the situation of a 3-year-old child who does not speak, still theoretically being susceptible to great improvements, could be very different in prognostic terms from that of a 10-year-old child who does not speak and who probably never will in his/her life. Perhaps also due to these uncertainties regarding a correct definition, the reasons why MV children with ASD do not speak are unknown, although some hypotheses emerged from the results of studies based on neurophysiological and structural/functional neuroimaging data. At a clinical level, in the context of children with ASD, the authors believe that the effort to find any correlate in terms of neuroimaging should be primarily made precisely in those who are MV, seeking — for example — any alterations of the brain connectivity through DTI techniques. Furthermore, behavioral problems are more frequent and complex in MV children than in those who are able to develop language, often involving significant management difficulties, but there is lack of evidence-based demonstration of the effectiveness of ASD interventions focused on communication in MV children. Therefore, further studies must be conducted on these individuals who, not surprisingly, have been called some years ago by some authors as “the neglected end of the spectrum.” 3

Although evidence-based data are lacking, several findings suggest that interventions, such as the AAC, and in particular PECS, may be effective in enabling functional communication in MV children with ASD. 44 – 47 This type of intervention is very important because, by bypassing the lack of verbal language, it can give a means of communication to these individuals who, among people with ASD, are certainly those who require more care and attention and whose management involves high social and welfare costs, regardless of the emotional suffering produced in their caregivers.

In addition, more research is needed to understand the natural history of MV individuals with ASD from the beginning. For example, is it possible that subjects who display developmental regression as their onset mode (the so-called regressive autism) are, therefore, (at least for the most part) the same who remain MV during their life? Still nowadays, it is very difficult to find a clear and conclusive answer to a relatively simple question such as this in the literature. 4

In conclusion, the authors believe that the issue of MV individuals with ASD should be addressed by finding a shared definition of this condition characterized by very rigorous clinical criteria and by systematically studying these patients at a genetic, neurophysiological, and neuroimaging levels, also aiming at finding any distinctive neurobiological correlates that may possibly represent the starting point for more targeted and specific enabling interventions.

ACKNOWLEDGMENT

The authors would like to thank Cecilia Baroncini for linguistic support.

This study did not receive any funding.

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What federal education data shows about students with disabilities in the U.S.

Public K-12 schools in the United States educate about 7.3 million students with disabilities – a number that has grown over the last few decades. Disabled students ages 3 to 21 are served under the federal  Individuals with Disabilities Education Act (IDEA) , which guarantees them the right to free public education and appropriate special education services.

For Disability Pride Month , here are some key facts about public school students with disabilities, based on the latest data from the  National Center for Education Statistics (NCES) .

July is both Disability Pride Month and the anniversary of the Americans with Disabilities Act. To mark these occasions, Pew Research Center used federal education data from  the National Center for Education Statistics  to learn more about students who receive special education services in U.S. public schools.

In this analysis, students with disabilities include those ages 3 to 21 who are served under the federal  Individuals with Disabilities Education Act (IDEA) . Through IDEA, children with disabilities are guaranteed a “free appropriate public education,” including special education and related services.

The 7.3 million disabled students in the U.S. made up 15% of national public school enrollment during the 2021-22 school year. The population of students in prekindergarten through 12th grade who are served under IDEA has grown in both number and share over the last few decades. During the 2010-11 school year, for instance, there were 6.4 million students with disabilities in U.S. public schools, accounting for 13% of enrollment.

The number of students receiving special education services temporarily dropped during the coronavirus pandemic – the first decline in a decade. Between the 2019-20 and 2020-21 school years, the number of students receiving special education services decreased by 1%, from 7.3 million to 7.2 million. This was the first year-over-year drop in special education enrollment since 2011-12.

The decline in students receiving special education services was part of a 3% decline in the overall number of students enrolled in public schools between 2019-20 and 2020-21. While special education enrollment bounced back to pre-pandemic levels in the 2021-22 school year, overall public school enrollment remained flat.

These enrollment trends may reflect some of the learning difficulties and health concerns students with disabilities and their families faced during the height of the COVID-19 pandemic , which limited or paused special education services in many school districts.

Many school districts struggle to hire special education professionals. During the 2020-21 school year, 40% of public schools that had a special education teaching vacancy reported that they either found it very difficult to fill the position or were not able to do so.

Foreign languages (43%) and physical sciences (37%) were the only subjects with similarly large shares of hard-to-fill teaching vacancies at public schools that were looking to hire in those fields.

While the COVID-19 pandemic called attention to a nationwide teacher shortage , special education positions have long been among the most difficult for school districts to fill .

The most common type of disability for students in prekindergarten through 12th grade involves “specific learning disabilities,” such as dyslexia.  In 2021-22, about a third of students (32%) receiving services under IDEA had a specific learning disability. Some 19% had a speech or language impairment, while 15% had a chronic or acute health problem that adversely affected their educational performance. Chronic or acute health problems include ailments such as heart conditions, asthma, sickle cell anemia, epilepsy, leukemia and diabetes.

Students with autism made up 12% of the nation’s schoolchildren with disabilities in 2021-22, compared with 1.5% in 2000-01.  During those two decades, the share of disabled students with a specific learning disability, such as dyslexia, declined from 45% to 32%.

The percentage of students receiving special education services varies widely across states. New York serves the largest share of disabled students in the country at 20.5% of its overall public school enrollment. Pennsylvania (20.2%), Maine (20.1%) and Massachusetts (19.3%) serve the next-largest shares. The states serving the lowest shares of disabled students include Texas and Idaho (both 11.7%) and Hawaii (11.3%).

Between the 2000-01 and 2021-22 school years, all but 12 states experienced growth in their disabled student populations. The biggest increase occurred in Utah, where the disabled student population rose by 65%. Rhode Island saw the largest decline of 22%.

These differences by state are likely the result of inconsistencies in how states determine which students are eligible for special education services and challenges in identifying disabled children.

The racial and ethnic makeup of the nation’s special education students is similar to public school students overall, but there are differences by sex.  About two-thirds of disabled students (65%) are male, while 34% are female, according to data from the 2021-22 school year. Overall student enrollment is about evenly split between boys and girls.

Research has shown that decisions about whether to recommend a student for special education may be influenced by their school’s socioeconomic makeup, as well as by the school’s test scores and other academic markers.

Note: This is an update of a post originally published April 23, 2020.

Katherine Schaeffer is a research analyst at Pew Research Center

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The Autism Self-Harm Connection

How self-harm relates to autism and what we can do about it..

Updated April 22, 2024 | Reviewed by Devon Frye

• What Is Self-Harm?
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• Self-harm affects around 33 percent of autistic individuals.
• Headbanging, scratching, and biting are most common.
• Low self-worth, impulsivity, and depression may predict self-harm in autistic individuals.
• Autistic people tend to have lower self-esteem than neurotypical controls, possibly due to systemic barriers

My first introduction to self-harm in autism was with headbanging. While headbanging is a relatively uncommon version of self-harm in the general population, for autistic individuals, headbanging is much more common; in one study, it represented the most prominent form of self-injury in a sample of autistic youth (Akram et al., 2017).

I had associated headbanging with intellectual disability, yet as a therapist with some specialty in neurodivergence, I have been surprised by the number of autistic folks I have met without an intellectual disability who engage in this kind of self-harm. I wanted to learn more.

Self-Harm in Autism

There is the old trope of a person who reaches a breaking point, snaps, and bashes their head. Sitcoms have pointed fun at this for ages. Yet while overwhelm does appear to play a role in self-harm within autism, when met with the shame and fear of those who engage in behavior, it becomes anything but a joke.

Headbanging can be a dangerous form of self-harm. In addition, many report feeling out of control during these times. It can be scary for all involved.

Self-harm is common in autism, and while estimates of its prevalence vary, studies have indicated that the problem may affect as many as 24 percent (License et al., 2020) to 33 percent of samples (Akram et al., 2017). Low mood and impulsivity have been noted as risk factors for self-harm in at least one autistic sample (License et al., 2020).

In my experience, the patterns of self-harm in autism often differ from how they show up in neurotypicals. In autism, overwhelm, mindstorms (meltdowns), and fatalistic thinking tend to be engaged when self-harm is present. The stress of neurotypical demands, social isolation , sensory overload, and perfectionism can create a perfect storm for overwhelm.

When met with negative self-beliefs—often formed by living in a world set up for neurotypical people—grounds are ripe for self-harm. Research shows that autistic people often carry lower levels of self-esteem and sense of power in their lives than neurotypical controls (Nguyen et al., 2020).

Tragically, this sometimes reaches a level of self-hatred . Repeated interpersonal traumas such as lack of acceptance, pushing away sensory needs, isolation, exclusion, and the need to mask can worsen this already low self-worth while creating extreme, negative beliefs about one's self. When these beliefs are triggered in situations of imperfection, coping can be exceptionally hard. The person may resort to old stories they have told themselves of not being good enough, not belonging, and that this will never change.

Lastly, during these storms, there tends to be a fatalistic quality. It can feel like everything is bad and always will be. The level of upset becomes intense, leading someone to wish for immediate relief. Unfortunately, some find that relief in self-harm.

Emotion Leak

In radically-open DBT (RO-DBT) there is a dialectic balance between under-control and over-control. Under-control involves impulsivity and a dramatic/erratic presentation. Over-control, on the other hand, involves a lot of hypervigilance, black/white (rule-governed) thinking, strong conscientiousness , and control over self.

The person might not come across as openly suffering at first, but inside, the story could be completely different. Overcontrolled individuals have high rates of suicide (Omalan and Lynch, 2018). RO-DBT characterizes most autistics as overcontrolled (Lynch, 2020).

While stereotypically, self-harm has been associated with styles of under-control, such as that often exhibited in borderline personality disorder , RO-DBT points out that self-harm is also common in over-control. For people with a style of over-control, self-harm might represent what RO-DBT calls an " emotion leak," a space wherein after pushing away significant emotion and trying to control everything, the walls break down. Emotion leaks might describe why some autistics may be more apt to self-harm behaviors such as headbanging at the moment as opposed to ones that require gathering tools like cutting.

Still, it should be noted that many autistic people do engage in more traditional forms of self-harm as well. In RO-DBT, it is noted that overcontrolled individuals may be less likely to disclose their self-harm and often take steps to hide it, showing the compounded shame that self-harm can ignite.

Autism, Social Exclusion, and Self-Harm

Loneliness is also a common experience for autistic individuals, which strongly affects mental health. A study of 71 autistic adults found that loneliness was associated with both depression and self-harm (Hedley et al., 2018).

Another qualitative study of autistic adults found that while receiving quality mental health care led to positive outcomes, focus groups indicated that accessing such care was often difficult. They also cited a lack of understanding among mental health professionals of autism-specific needs (Camm-Crosbie et al., 2019).

Navigating a world set up for neurotypical brains creates specific needs for autistic clients in mental health treatment. Yet mental health interventions are not always naturally neurodiversity -affirming.

For example, when a neurotypical client avoids eye contact in a session, this may be an indication of anxiety or withdrawal that prompts a therapist to inquire further. On the contrary, many autistic individuals find it easier to focus when not making eye contact; the same may require nothing more from the therapist than to accept the communication difference without demanding eye contact. This is why there is a strong need for neurodiversity-affirming care.

What Can We Do?

Addressing self-harm in autism is tricky and may involve multiple layers. Most critically, when individuals' needs are heard, and they feel safe to be themselves, self-esteem rises, and the level of risk decreases. Such trends emphasize the need for intervention on a community level through education .

Increasing acceptance of autism and creating communities that are more friendly to the needs of autistic people may help to combat isolation and create spaces of safety. Celebration of neurodiversity to improve the inclusion of neurodivergent people and provision of support in job and education settings to decrease overwhelming demands while giving individuals a chance to show their best in the workplace/school are relevant steps.

Additional prevention measures may include improving access to quality and neurodiversity-affirming autism assessments earlier. While autism onsets close to birth, many do not receive the diagnosis until late childhood , adolescence , or adulthood.

Without the diagnosis of "autism," many youth experience misunderstanding, and exclusion. The weight of neurotypical expectations and pressure to mask can press harder. A study of 396 autistic children found that youth who received an autism diagnosis after the age of 11 were significantly more likely to engage in self-harm (Hosozawa et al., 2021).

Still, psychological assessments traditionally used to diagnose autism are not always covered by health insurance, making access difficult for families without significant means. Even when assessments are accessible, assessment and diagnosis are not always neurodiversity-affirming or precise, particularly for women and those without a comorbid intellectual disability.

For autistic individuals who are engaged in self-harm, there may be an immediate need to readjust stresses and for advocacy. Psychotherapy can also help. Research has shown promising results for the use of dialectical behavioral therapy in autistic individuals struggling with self-harm (Phillips et al., 2024). Approaches such as RO-DBT, which address the fatalistic mind states that often underlie self-harm in autism; acceptance and commitment therapy, which assists with navigating intense emotional states while moving toward one's goals ; and/or approaches bent toward self-compassion are just a few that may be effective.

Self-harm is common in autism, but it doesn't have to be. By addressing the systemic problems that lead to self-harm while also providing necessary mental health support, we can address this under-discussed challenge.

Akram, B., Batool, M., Rafi, Z., & Akram, A. (2017). Prevalence and predictors of non-suicidal self-injury among children with autism spectrum disorder. Pakistan Journal of Medical Sciences , 33 (5), 1225.

Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism , 23 (6), 1431-1441.

Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2018). Understanding depression and thoughts of self-harm in autism: A potential mechanism involving loneliness. Research in Autism Spectrum Disorders , 46 , 1-7.

Hosozawa, M., Sacker, A., & Cable, N. (2021). Timing of diagnosis, depression and self-harm in adolescents with autism spectrum disorder. Autism , 25 (1), 70-78.

Licence, L., Oliver, C., Moss, J., & Richards, C. (2020). Prevalence and risk-markers of self-harm in autistic children and adults. Journal of autism and developmental disorders , 50 (10), 3561-3574.

Lynch, T. (2020). Radically Open Dialectical Behavioral Therapy: Theory and Practice for Treating Disorders of Overcontrol. New Harbinger

Nguyen, W., Ownsworth, T., Nicol, C., & Zimmerman, D. (2020). How I see and feel about myself: Domain-specific self-concept and self-esteem in autistic adults. Frontiers in Psychology , 11 , 913.

O’Mahen, H., & Lynch, T. R. (2018). How to differentiate overcontrol from undercontrol: findings from the RefraMED study and guidelines from clinical practice. RADICALLY OPEN , 41 (3), 132.

Phillips, M. D., Parham, R., Hunt, K., & Camp, J. (2024). Dialectical behaviour therapy outcomes for adolescents with autism spectrum conditions compared to those without: findings from a seven-year service evaluation. Advances in Autism .

Jennifer Gerlach, LCSW, is a psychotherapist based in Southern Illinois who specializes in psychosis, mood disorders, and young adult mental health.

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