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Autism Spectrum Disorder

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Answers to questions families often have about caring for their child with autism spectrum disorder (ASD)
Young smiling girl clasping hands by flower bed

What is autism?

Autism spectrum disorder (ASD) is a developmental disorder that usually results in problems with communication and social interactions, and restricted interests and repetitive activities. The types and severity of problems vary a lot, as does intelligence

How do you get autism?

No one knows for sure what causes autism. Recent studies suggest a strong genetic basis for autism—up to 20 sets of genes may play a part in its development. You can find a broad review of the genes known to be linked to ASD here: Autism Spectrum Disorder (OMIM). Genetics alone, however, cannot account for all the cases. There may be environmental origins, as well as other triggers.

What are the symptoms?

To diagnose autism, a child must have these two core problems, though the issues can look very different from one child to the next :
  • Deficits with social skills. Examples include:
    • limited back-and-forth communication
    • decreased ability to build connections with others
    • reduced non-verbal communication like eye contact
  • While people usually think of children with ASD as preferring to play alone, sometimes a child with ASD may seem overly friendly in that they might invade your personal space and not stop talking to you about their topic of interest.
  • Restricted, repetitive interests, activities, or behaviors. Examples include:
    • atypical toy use, like lining up cars
    • repeating words they hear
    • fascination with lights
    • having a profound interest in one topic like trains or dinosaurs
    • getting upset when routines are not followed
    • stimming behaviors, which are repeated movements, sounds, or words. Some common examples of stimming are:
      • hand-flapping
      • rocking
      • head banging
      • tearing paper
      • spinning objects
    • Stimming behaviors are thought to be a protective response to overstimulation and may reduce anxiety.
  • These behaviors and interests may change over time and are not the same in everyone.
While not part of the diagnostic criteria, some children with ASD also have learning disabilities, delayed speech and language skills, problems with attention or hyperactivity, anxiety, depression, sleep problems, constipation, limited diet, seizures, skin picking, or lower or higher awareness of sensations like pain (see Signs and Symptoms of Autism Spectrum Disorders (CDC) for a comprehensive list). Not everyone shows all of these symptoms. Symptoms may also disappear and then return or change over time.
Bonding with a child with ASD looks different than with a typically-developing child. Children with ASD may seem standoffish or may not make eye contact or want a lot of physical contact, but this is not always the case. Children with ASD do form connections with parents and other family members; it is the atypical quality of these interactions that is characteristic of autism. Children with ASD may experience severe anxiety and disruptive behavior when separated from parents or other caregivers .

How is it diagnosed?

Autism spectrum disorders are diagnosed by a clinician or team of clinicians who specialize in child development. These providers may include pediatricians, child psychiatrists, psychologists, speech and language pathologists, and other types of therapists. A diagnosis is made when a detailed history and careful observation of a child's behavior and interaction patterns show that he or she meets criteria for an autism spectrum disorder. Recognition of early signs of autism is key to timely evaluation and starting helpful interventions.

What is the expected outcome?

Outcomes differ for each individual. There is growing acceptance of individuals with autism, with efforts to create space for people with autism in the workplace and society in general. The possibilities for people with autism have never been brighter and outcomes can be positive, especially with early access to evidence-based services. For example, services from the Early Intervention Part C Program have been shown to help with cognitive and speech abilities, manage the behaviors associated with autism, and help with developing social skills. There are many services available for children with autism, as well as supportive communities for their families. Everyone with ASD has unique strengths and needs, so service prescriptions look different for each person and are designed to help children with ASD lead a full and active life.

Will anyone else in the family get autism?

Current data suggest that the likelihood of having a child with autism if the biological parents already have one child with autism is at least 1/20. See the Autism Program at Yale for more information.

What is the treatment?

There are no medical interventions to make autism go away. The treatments for autism most often involve many different options, such as speech and occupational therapy, behavioral interventions, cognitive behavioral therapy, medications for related problems, and social skills training. There are data to show that outcomes are best with early intensive interventions, using behavioral methods and speech and language therapy to help with specific deficits. See the Autism Program at Yale for more information.

How will my family's life be changed?

A child with ASD will likely have a care team that involves many people, such as doctors, speech therapists, and occupational therapists. There may be a lot of appointments with different care providers. Working with a team of people to care for and educate a child with ASD can be intense, time-consuming, and potentially costly, but these interventions are important to help your child build skills. The impact on your child and family will depend on the severity of the diagnosis and the services and resources available to your child. In addition to good health care and quality educational programs, a stimulating home environment and positive support from family, friends, and the community are vital to ensuring the best possible outcomes.

Are vaccines to blame for autism?

No. Researchers have not found a link between vaccinations and autism, a finding supported by organizations such as the Centers for Disease Control and Prevention, the American Academy of Pediatrics, and the World Health Organization. These agencies agree that there is no evidence to support the argument that vaccines—specifically thimerosal-containing vaccines—cause children to develop autism. See Vaccines Do Not Cause Autism (CDC) for more information.

Our pediatrician has recommended a formal autism evaluation. Would there be any harm in waiting to see if my child outgrows language and social delays?

Yes. Research has shown that children on the autism spectrum have the best outcomes when they are identified early and receive appropriate behavioral, language, and educational interventions. There may be a wait time for evaluation and services, so it is crucial to schedule an appointment as soon as possible.

Will my child receive Special Education services if they are on the autism spectrum?

Probably, but not always. The public school system is required to provide "free and appropriate education" for children with disabilities, including autism, in order to help them progress. The Special Education system evaluates each child to determine what services, if any, are needed to help the child succeed in the least restrictive educational setting. Special Education services are re-evaluated periodically so they may change over time for a specific child with ASD. Some children with ASD do not need any special supports to progress in school.
Federal law requires that children with disabilities, including autism, should be in the least restrictive learning environment. As a result, many school-aged children with autism participate in regular education classes, although some may need additional, focused support or specialized educational programs.

My child is receiving Special Education services with an Asperger or PDD-NOS diagnosis, will these services continue or do we need to get re-evaluated?

In the past, Asperger and PDD-NOS were diagnoses related to autism, but are now considered to fall within the autism spectrum. There are a few people who, if retested now, would not meet criteria for an autism spectrum disorder since the definitions have changed. However, if your child was previously diagnosed with Asperger or PDD-NOS, your child should continue to receive Special Education services until his or her eligibility expires. At that time, the school is required to perform a re-evaluation to determine the best classification under which the child should be served.

Resources

Information & Support

Related Portal Content
Autism Spectrum Disorder
Assessment and management information for the primary care clinician caring for the child with autism spectrum disorder (ASD).
Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.

For Parents and Patients

Rhode Island The Autism Project
The Autism Project is a Hub of Hope© that connects people - with a spectrum of needs - to the available resources and education that support independent and purposeful lives.

Rhode Island The Autism Project Trainings
Provides FREE training to parents and professionals serving the needs of children from birth-5 years old in Woonsocket, Bristol, Warren, and Central Providence.

Rhode Island ABA Fact Sheet (EOHHS) (PDF Document 152 KB)
ABA discrete trial learning is a medically necessary, highly specific and curriculum-driven approach with rigorous goals, objectives, and measurement for children diagnosed with an Autism Spectrum Disorder (ASD). ABA provided in the home or an agency setting. Medicaid, RIteCare or RIteShare eligibility. Revised 2017; Rhode Island Executive Office of Health and Human Services.

Rhode Island Hoja Informativa de Terapia de Analisis Conductual Aplicado - Spanish (EOHHS) (PDF Document 181 KB)
La enseñanza de tareas discriminadas como parte de la terapia de Análisis Conductual Aplicado, ABA por su sigla en inglés, es un método de necesidad médica altamente específico, guiado por un plan de estudios con metas, objetivos y mediciones rigurosos para niños y jóvenes diagnosticados con trastornos del espectro autista. Revised 2016; Rhode Island Executive Office of Health and Human Services.

Association for Science in Autism Treatment (ASAT)
A nonprofit organization that provides information, lists of conferences, suggested readings, and articles about evidence-based autism treatments for clinicians and parents.

Autism Resource Center (AACAP)
Autism resources from the American Academy of Child & Adolescent Psychiatry. Choose a topic, frequently asked questions, and a locator for child and adolescent psychiatrists.

SPARK National Autism Study
Studies genetic, behavioral, and medical information from hundreds of thousands of people to advance research and discovery in autism. Information is gathered online and participants mail in a saliva sample for genetic testing. The results are provided to the participant. Funded and led by the Simons Foundation.

Autism Spectrum Disorder (CDC)
Focused information about early warning signs, safety of vaccines, and autism; Centers for Disease Control and Prevention.

Autism (healthychildren.org)
Answers to questions such as: How is autism diagnosed? If autism is suspected, what next? What are early signs? How do I keep a child with autism from wandering?

Autism Society of America
Includes information about symptoms, inheritance, diagnosis, finding a specialist, related diseases, and support organizations; Genetic and Rare Diseases Information Center of the National Center for Advancing Translational Sciences.

Autism Watch
Part of QuackWatch, an online "Guide to Quackery, Health Fraud, and Intelligent Decisions." Provides reliable information and links about proposed causes of autism and treatments, and lists of reliable and not reliable web sites for more information.

Sesame Street and Autism
An initiative to help people better understand autism and offer families ways to overcome common challenges and simplify everyday activities using helpful videos, stories, and printable daily routine cards for social experiences.

Autism Research Institute
Information about autism, autism research, free webinars for parents and professionals, and other resources.

Patient Education

Autism Spectrum Disorder FAQ (NINDS)
Answers to common questions about ASD and a long list of other places to go for more information; National Institute of Neurologic Disorders and Stroke.

Translated Autism Resources (VFN)
Autism Fact Sheet and Learn the Signs: Act Early Autism Fact Sheet, each translated into Arabic, Bosnian, Burmese, English, French,Nepali, Somali, Spanish, Swahili, and Vietnamese; Vermont Family Network.

Autism Spectrum Disorder, A Parent's Guide (NIMH)
The link takes you to the National Institute of Mental Health website, from which the 27 page autism booklet may be downloaded at no cost.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Studies Related to Autism (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

SPARK National Autism Study
Studies genetic, behavioral, and medical information from hundreds of thousands of people to advance research and discovery in autism. Information is gathered online and participants mail in a saliva sample for genetic testing. The results are provided to the participant. Funded and led by the Simons Foundation.

Authors & Reviewers

Initial publication: August 2012; last update/revision: December 2019
Current Authors and Reviewers:
Author: Jennifer Goldman, MD, MRP, FAAP
Reviewer: Joey Hanna
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.
Authoring history
2012: first version: Deborah Bilder, MDA
AAuthor; CAContributing Author; SASenior Author; RReviewer