What Is Autism? Symptoms, Causes, Diagnosis, Treatment, and Managing It
Autism spectrum disorder (ASD) is a developmental disorder characterized by the challenges it causes with social interaction, language skills, nonverbal communication; repetitive patterns of behavior; and the display of unique and highly specific strengths and differences compared with other people, explains Jeremy Veenstra-Vanderweele, MD, director of the division of child and adolescent psychiatry at NewYork-Presbyterian Morgan Stanley Children's Hospital in New York City. Typically individuals on the autism spectrum will experience a combination of some or all of those symptoms, with varying degrees of severity. That means the condition can appear to be very different from person to person.
The general public and those who work with people with autism need to be aware of and sensitive to the wide variability of experiences of those who are on the spectrum, notes Thomas Frazier II, PhD, chief scientist at Autism Speaks, an autism advocacy organization. "The first step to understanding what autism is means focusing on each individual's set of difficulties and challenges and needs. You have to think, if you are a provider: 'How can I go about designing a plan to help them?'"
Everyone with autism has different cognitive abilities, social and communication skills, and behavior struggles, Dr. Frazier adds. "Everybody's different, and you have to talk to the person and be empathetic."
There's Only 1 Diagnosis for ASD, but It Includes Individuals With a Range of Disorders
In 2013, the American Psychiatric Association (APA) combined what were once four separate diagnoses under the umbrella of autism spectrum disorders — ASD for short. In its report, the APA stated that the new definition for ASD represents "a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders."
It's important to recognize, however, that many individuals living today with autism were given those diagnoses before 2013 and may still identify with those terms. Understanding the old diagnoses can help explain the range of symptoms and prognoses to expect for people with autism.
Those diagnoses were:
Autistic Disorder This diagnosis was the "classic" case of autism. Symptoms could include any combination of language challenges, repeating specific behaviors, learning disabilities, or problems with speech and nonverbal communication. Someone with this diagnosis might have also had very unique strengths and differences from others.
Learn More About Why Doctors No Longer Diagnose 4 Types of Autism
Signs and Symptoms of Autism
The signs of autism vary widely. But there are red flags parents and caregivers of babies and young children can look for.
For babies and toddlers, the first sign of autism may be difficulty responding to their names when they are called, Frazier says. "A lot of babies and toddlers who don't make appropriate eye contact, or who don't engage in joint attention with others, with a shared experience of observing an object or an event," may have autism, he adds.
Displaying repetitive motor movements and behaviors are other key warning signs to watch out for in children.
Dr. Veenstra-Vanderweele concurs that a person with autism may have trouble with "two-way communication" and may not respond much at all to someone addressing them. Sometimes people on the spectrum also exhibit an almost obsessive attention to very specific details.
"There was one child I worked with who was so interested in sharks I couldn't have a conversation about anything else that didn't include sharks," Veenstra-Vanderweele recounts. "Some of those kids can't leave a topic behind in conversation. And sometimes they can't be motivated to do something or engage with something that doesn't involve that very specific, restricted interest."
- Not pointing at objects when interested in them
- Not looking at things someone else points to
- Difficulty relating to others; or being interested in other people but not knowing how to talk, play, or interact
- Avoiding eye contact and wanting to be by themselves
- Difficulty understanding the feelings of others and talking about their own
- Not enjoying being held or cuddled
- Seeming unaware when people talk to them, but noticing other sounds
- Repeating words or phrases said to them
- Difficulty expressing their needs
- Not playing "pretend" games
- Repeating actions over and over again
- Difficulty switching to new routines
- Unusual responses to sensory stimuli, such as odors, sounds, or flavors
- Loss of skills they used to have
Learn More About Autism Symptoms in Babies, Toddlers, Children, and Adults
Causes and Risk Factors of Autism
The medical community has yet to definitively explain why autism develops in some individuals and not in others. But there are several risk factors, both genetic and environmental, that have been found to be associated with the disorder, Veenstra-Vanderweele says.
There are other potential risk factors. Prenatal exposure to some medications, premature birth, low birth weight, as well as the age of an individual's parents, may raise the odds. But a lot more research needs to be done to better understand those connections, Veenstra-Vanderweele says.
Parents and pediatricians need to work together to communicate to everyone the fact that vaccinations do not cause autism, Veenstra-Vanderweele says. Not vaccinating children puts those children at higher risk for diseases and increases the risk of those diseases spreading to others.
How Is Autism Diagnosed?
There is no blood test or genetic profile (yet) that allows a doctor to conclusively make an autism diagnosis. Frazier says that diagnosing ASD involves looking at a child's behavior and overall development.
Most pediatricians regularly screen all children for developmental delays and disabilities between 9 months and 30 months. But if your child has a sibling with ASD or if you or another caregiver has concerns that certain symptoms may be signs of autism, you can talk to your child's doctor at any time (or your doctor, if the concerns are about yourself).
Initial autism screening usually involves checking that a child is meeting developmental milestones or if there are developmental delays. This could involve asking a parent questions about the child or interacting or playing with the child to see how he or she behaves.
Duration of Autism
Treatment and Medication Options for Autism
Treatment for autism typically includes a combination of behavioral therapies, dietary approaches, medications, and complementary and alternative medicine approaches that best meet the needs of the individual.
Because autism varies so much from person to person in terms of symptoms and abilities, treatments must be customized, Frazier explains. But in general, early intervention is typically better, and all treatment tends to involve the child's family working closely with a team of doctors and caregivers.
Learn More About Treatments and Therapies for People With Autism
Prognosis
The prognosis for people with ASD is as individual as they are. The extent of their developmental delays and the quality of the interventions they received — particularly early interventions — can make a difference in their outlook for education, work, and independent living.
Complications of Autism
Autism in Adults
As mentioned above, you cannot get autism as an adult. But because there has been less awareness historically about screening for and diagnosing autism, there are individuals who are diagnosed with autism in adulthood, whose condition was missed when they were younger.
And while some people with the disorder who are high-functioning, or those for whom treatment has allowed them to manage their symptoms, go on to college or vocational schools and enter the workforce — others with autism continue to need treatment and support through adulthood.
And once school ends, the transition into adulthood can be difficult for individuals with autism, especially for those who are not high-functioning.
Additionally, for those entering the workforce and for those with autism who are already adults, many other resources are available with information about financial assistance, services, and other support systems to meet an individual's needs.
Research and Statistics: Who Has Autism?
Researchers are currently investigating ASD's origins and early symptoms in an effort to make earlier diagnosis and intervention possible. Scientists are also looking at interventions, the overall health of people with ASD, as well as the health of their caregivers. Some notable areas of research include:
"We need to figure out ways to try to best educate different segments of the population and help them accept and accommodate people with autism," Frazier says. "What is the best way to train police in dealing with people with autism? How do we train employers to do a better job? How do we make living environments that are conducive to people [with autism]? How do we have hospitals that are sensory friendly?
"I think there is a lot of research and more that will be done that will look at how we make these societal improvements," he says. "It's important to keep generating awareness and understanding and [so we] all do better to help people living with this."
There is an enormous opportunity for research when it comes to understanding the genetic risk factors for autism as well, Frazier adds.
Conditions Related to Autism
- Gastrointestinal (GI) problems
- Epilepsy
- Feeding issues
- Disrupted sleep
- Attention-deficit hyperactivity disorder (ADHD)
- Anxiety
- Depression
- Obsessive compulsive disorder (OCD)
- Schizophrenia
- Bipolar Disorder
As noted above, people with autism also face higher risk for allergies, asthma, diabetes, heart disease, hearing loss, sleep problems, obesity, and cerebral palsy.
Resources We Love
One of the world's most-visited websites for autism spectrum disorders, this site is the online presence of the Autism Society of America, an organization founded in 1965 to share high-quality information, and offer support and advocacy for with people on the autism spectrum and their families. You'll find a comprehensive online resource database, Autism Source, access to the group's National Contact Center (800-3-AUTISM) for info and service referrals, and ways to connect with Autism Society affiliates across the United States. One thing we love: Extensive autism information in Spanish, accessible from the homepage by clicking on "¿Que es Autismo?"
This inspiring organization promotes acceptance, support, and solutions for the needs of people on the autism spectrum and their families. One notable feature: Access to the organization’s Autism Response Team (ART), a hotline with a trained staff that provides personalized information and resources to people with autism, their families, friends, teachers, and social workers. Autism Speaks actively supports and promotes research into autism's causes, early diagnosis, better treatment of autism-related health conditions, and more. You can get involved, by using the website's "Participate in Research Search" to find studies and surveys looking for participants.
National Institute of Neurological Disorders and Stroke (NINDS)
A branch of the National Institutes of Health, NINDS provides up-to-date and easy to understand explanations of the science behind autism and other brain disorders, as well as treatments and a round-up of current research. One useful feature: Links to other NIH branches for more information about health conditions often experienced by people with autism and to other autism research and service organizations. You'll also find fascinating and useful background information, including Brain Basics: Know Your Brain, an illustrated guide to how the brain works.
A passion project started by four women (all moms; one is an ER nurse, one is a special education teacher, and two of them have children with special needs), Spectrum Inspired features candid photography and heart-felt stories of people with autism and their families. You can browse and purchase Spectrum Inspired magazine, as well as read and view the site's blog full of stories and beautiful, sensitive photo essays.
With more than 600 local chapters, The Arc — one of America's longest-running support and advocacy organizations for people with intellectual and developmental disabilities (I/DD) — tackles big, important issues for people with I/DD, like employment, treatment by law enforcement and the criminal justice system, and obesity and chronic disease. One valuable, online resource: Future Decisions, a detailed guide to help families and people with I/DD plan for the future.
The Color of Autism Foundation
With the goal of "ending the stigma of autism spectrum disorders in communities of color," this Michigan-based nonprofit offers support to African American families with children on the autism spectrum, including online training for parents on how to advocate for their needs.
A personal family blog about autism, special needs travel, work-life balance, family entertainment, and more. The blog by mom and writer Lisa Quinones-Fontanez is a follow-up to her blog AutismWonderland, which chronicled the early years of her son Norrin, who has autism. That award-winning blog was recognized for boosting autism awareness in the Latinx community. Atypical Familia continues the tradition. One moving post: Teaching My Son About Puerto Rican Pride.
Additional reporting by Sari Harrar.
Editorial Sources and Fact-Checking
- Autism Statistics and Facts. Autism Speaks.
- Autism Spectrum Disorder. American Psychiatric Association. 2013.
- Asperger Syndrome. Autism Speaks.
- Charan SH. Childhood Disintegrative Disorder. Journal of Pediatric Neurosciences. January 2012.
- PDD-NOS. Autism Speaks.
- What is Autism Spectrum Disorder? Centers for Disease Control and Prevention. March 25, 2020.
- After the Autism Diagnosis: What You Need to Know About Genetic Testing. Fragile X Foundation. May 20, 2019.
- FMR1 gene. U.S. National Library of Medicine. April 2020.
- Vaccine Safety: Examine the Evidence. American Academy of Pediatrics. January 26, 2017.
- Caramaschi D, Taylor AE, Richmond RC, et al. Maternal Smoking During Pregnancy and Autism: Using Causal Inference Methods in a Birth Cohort Study. Translational Psychiatry. November 29, 2018.
- Zhang T, Sidorchuk A, Sevilla-Cermeño L, et al. Association of Cesarean Delivery With Risk of Neurodevelopmental and Psychiatric Disorders in the Offspring: A Systematic Review and Meta-Analysis. JAMA Network Open. August 28, 2019.
- Autism Spectrum Disorder (ASD) Screening and Diagnosis. Centers for Disease Control and Prevention. March 13, 2020.
- Autism Spectrum Disorder. National Institute of Mental Health. March 2018.
- Signs and Symptoms of Autism Spectrum Disorders. Center for Disease Control and Prevention. August 27, 2019.
- Autism Spectrum Disorder (ASD): Treatment. Centers for Disease Control and Prevention. September 23, 2019.
- Cuomo BM, Vaz S, Lee EIL, et al. Effectiveness of Sleep-Based Interventions for Children with Autism Spectrum Disorder: A Meta-Synthesis. Pharmacotherapy. May 2017.
- National Center for Complementary and Integrative Health. September 2017.
- Guide to Individualized Education Programs (IEP). Autism Speaks.
- Croen LA, Ousseny Z, Qian Y, et al. The Health Status of Adults on the Autism Spectrum. Autism. October 2015.
- Related Disorders. Autism Research Institute.
- Autism Spectrum Disorder: Symptoms and Causes. Mayo Clinic. January 6, 2018.
- What Are My Rights? Autism Speaks.
- Transition Tool Kit. Autism Speaks.
- Data & Statistics on Autism Spectrum Disorder. Centers for Disease Control and Prevention. March 25, 2020.
- Research on Autism Spectrum Disorder. Centers for Disease Control and Prevention. September 24, 2019.
- Corsi D. Maternal Cannabis Use in Pregnancy and Child Neurodevelopmental Outcomes. Nature Medicine. August 2020.
- Rowberry J, Macari S, Chen G, et al. Screening for Autism Spectrum Disorders in 12-Month-Old High-Risk Siblings by Parental Report. Journal of Autism and Developmental Disorders. January 2015.
- Picardi A, Gigantesco A, Tarolla E, et al. Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicenter Study with Two Comparison Groups. Clinical Practice and Epidemiology in Mental Health. July 2018.
- Medical Conditions Associated With Autism. Autism Speaks.