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Autism Spectrum Disorder

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Introduction

Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Autism Spectrum Disorder module, which is written for primary care clinicians but also may be of help to parents and family members.

What is autism and what causes it?

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 comprehensive review of the genes known to be associated with ASDs here: Autism (OMIM). Genetics alone, however, can not account for all the cases. There may be possible environmental origins, as well as other triggers. Autism Speaks FAQ
Children with ASDs demonstrate impairment in all of the three developmental domains affected in autism spectrum disorders: communication and social interactions, interests and activities, and stereotypical behaviors.

What are the symptoms of autism?

Some children on the autism spectrum form particularly strong connections to a caregiver and experience severe anxiety and disruptive behavior when separated from this attachment figure. Some children with autism will seek and enjoy interactions with other individuals; it is the atypical quality of these interactions that is characteristic of autism.

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, and speech and language pathologists. A diagnosis is made when a detailed history and careful observation of a child's behavior and interaction patterns indicate that he or she meets criteria for an autism spectrum disorder.

What is the prognosis?

Services from the Early Intervention Part C Program have been shown to mitigate the behaviors associated with autism. For some, these treatments have proven to be very successful, helping kids on the spectrum lead a full and active life. Autism Speaks FAQ

What is the risk for other family members or future babies?

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. Autism Program at Yale

What treatments/therapies/medications are recommended or available?

There are data to indicate that the best intervention for autism/PDD is early intensive intervention that utilizes behavioral methods and speech and language therapy to remediate specific deficits. Autism Program at Yale

How will my child and our family be impacted?

The impact on your child and family will depend on the severity of the diagnosis and the services and resources your child has available to him/her. In addition to good health care, quality educational programs, a stimulating home environment and positive support from family, friends, and the community are critical to optimizing functional outcomes.

Are vaccines to blame for autism?

Researchers have not found a link between the 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. Autism Speaks FAQ

Our pediatrician is concerned about our child’s development and has recommended a formal autism evaluation. Would there be any harm in waiting to see if he outgrows his 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.

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?

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

Where can I go for further information?

For Parents and Patients

Support

Autism Parent Focus Group (PDF Document 22 KB)
Read what parents of children with autism have to say about getting a diagnosis, the impact on siblings, where parents get information, and the financial impact on families. The transcript is from a focus group in July 2009 in Utah.

Center for Parent Information and Resources (DOE)
Maintains a large resource library with information related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities and provide information about local conferences, support groups, and finding schools and other local services; Department of Education, Office of Special Education.

General

Helping You Through the Evaluation Process of Your Child with a Possible Autism Spectrum Disorder (PDF Document 636 KB)
A map for parents and caregivers to assist understanding of the process of evaluation and the appropriate services and therapies. Written by the partner organizations of Utah Autism Initiative.

AspergerLife
A good site for basic information for parents and physicians about Asperger's Disorder, written by a clinical psychologist in Michigan.

Asperger Syndrome (MedlinePlus)
From National Library of Medicine and National Institutes of Health, the site offers many links to high-quality sources of information for patients and their families. The Asperger's page is short.

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 (MedlinePlus)
From the National Library of Medicine & National Institutes of Health, offers a brief overview and numerous links to high-quality sources of information for patients and their families.

Autism Information Center (CDC)
Parent-oriented information regarding autism spectrum disorders from the Centers for Disease Control and Prevention, with focused information on early warning signs and vaccines and autism.

Autism Spectrum Disorders (healthychildren.org)
From the American Academy of Pediatrics, information about autism spectrum disorders (ASDs).

Autism Society of America
The ASA promotes autism awareness and is dedicated to providing information regarding research, treatment, advocacy, and family support throughout the lifespan.

Autism Speaks
A national organization dedicated to promoting autism-related research. The web site provides information regarding fundraising for specific research projects as well as general parent information regarding autism spectrum disorders.

Autism Speaks - Technology and Autism
Communication applications for those with autism spectrum disorders. For individuals with autism, some new technologies can improve communication, assist in the development of social skills, and enhance the ability to learn.

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.

Considerations when Looking for Services for Individuals with Autism Spectrum Disorder (ASD) (ACU)
Thoughtful suggestions for selecting services for people with autism spectrum disorders (ASDs). This was developed by a collaborative group through the Utah Autism Initiative and hosted by the Autism Council of Utah (ACU). The suggestions are also helpful when looking for services for other conditions.

Different Roads to Learning
On-line catalogs specializing in learning materials and playthings for children with developmental disabilities, including autism. Focus is on ABA resources.

Future Horizons
Commercial site offering information, training, and resources for families, teachers, and professionals for dealing with autism.

Aquatic Therapy for Children with Autism
Describes the benefits of aquatic therapy for children with autism.

Aspergers Syndrome Connection
Provides resources for families, and medical professionals who deal with the challenges of Asperger Syndrome, Autism, and Pervasive Develomental Disorder / Not Otherwise Specified. (PDD/NOS)

Sesame Street and Autism
With the help people who live with autism, families of kids with autism, and people who serve our autism community, the makers of Sesame Street have created a nationwide autism initiative. This initiative is a way to help people better understand autism and offer families ways to overcome common challenges and simplify everyday activities. The website has helpful videos, stories, and printable daily routine cards for social experiences.

Yale Child Study Center Autism Research Studies
The Yale Child Study Center is recruiting patients for multiple autism-related studies.

Autism Program at Yale
Information about autism spectrum disorders (ASD), pervasive developmental disorder (PDD), and Asperger's syndrome with links to research and resources.

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

Interactive Autism Network FAQ
Information about the autism spectrum disorders (ASD) diagnosis, the history of the diagnosis, the benefits of having a diagnosis, the difference between screening and assessment, and more. Updated 2014.

Patient Education

100 Day Kit for Newly Diagnosed Families of Young Children (81 pgs) (Autism Speaks)
Downloadable family-oriented guide from Autism Speaks. Offers an overview of ASDs and aims to help parents organize and prioritize their approach to seeking services for their child. Practical information is provided emphasizing advocacy and family support. Several forms are available to assist in the organization of medical records and tracking the effectiveness of treatments.

100 Day Kit for Newly Diagnosed Families of Young Children, Spanish (84 pgs) (Autism Speaks)
Family-oriented guide, in Spanish, from Autism Speaks, downloadable from the linked site. Offers an overview of ASDs and aims to help parents organize and prioritize their approach to seeking services for their child. Practical information is provided emphasizing advocacy and family support. Several forms are available to assist in the organization of medical records and tracking the effectiveness of treatments.

Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns (AAPC)
This expanded edition of the bestselling AAPC classic offers both parents and professionals tried-and-true solutions to minimize and circumvent the often frightening circumstances that surround the rage cycle – not only for the child with Asperger Syndrome but others in the environment as well. Available for purchase from AAPC publishing.

Autism Fact Sheet (NINDS)
Detailed information about autism and resources; from the National Institute of Neurologic Disorders and Stroke.

Autism Fact Sheet, Spanish (NINDS)
From the National Institue of Neurologic Disorders and Stroke.

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.

Autism Spectrum Disorders: What Every Parent Needs to Know (AAP)
An invaluable resource for parents and caregivers of children who have been diagnosed with an autism spectrum disorder (ASD) (320 pages). Prepared under the editorial direction of two distinguished pediatricians who are autism experts, this book helps you understand how ASDs are defined and diagnosed and provides information on the most current types of behavioral and developmental therapies. Available from the American Academy of Pediatrics bookstore for $14.95 ($11.95 for members).

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

Understanding Autism Spectrum Disorders Pamphlet (AAP), Spanish
Family-oriented information pamphlet (44 pgs), available from the American Academy of Pediatrics bookstore for $40 for a package of 10 ($36 for members).

Services

Audiology

See all Audiology services providers (14) in our database.

Autism Clinics

See all Autism Clinics services providers (2) in our database.

Autism Treatment/Applied Behavioral Analysis (BCBA)

See all Autism Treatment/Applied Behavioral Analysis (BCBA) services providers (29) in our database.

Developmental - Behavioral Pediatrics

See all Developmental - Behavioral Pediatrics services providers (4) in our database.

Developmental Pediatrics

See all Developmental Pediatrics services providers (3) in our database.

Nonpublic Special Schools

See all Nonpublic Special Schools services providers (1) in our database.

Occupational Therapy, Pediatric

See all Occupational Therapy, Pediatric services providers (29) in our database.

Pediatric Dentistry

See all Pediatric Dentistry services providers (23) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (21) in our database.

Pediatric Genetics

See all Pediatric Genetics services providers (6) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (13) in our database.

Pediatric Sleep Medicine

See all Pediatric Sleep Medicine services providers (2) in our database.

Psychiatrist, Child-18 (MD)

See all Psychiatrist, Child-18 (MD) services providers (17) in our database.

Psychologist, Child-18 (PhD, PsyD)

See all Psychologist, Child-18 (PhD, PsyD) services providers (9) in our database.

Social Skills Training

We currently have no Social Skills Training service providers listed; search our Services database for related services.

Speech - Language Pathologists

See all Speech - Language Pathologists services providers (38) in our database.

For other services related to this condition, browse our Services categories or search our database.

Studies

Studies Related to Autism (clinicaltrials.gov)
A current list of clinical trials (active, recruiting, and recently completed) of autism and related conditions.

Authors

Author: Deborah Bilder, MD - 3/2012
Compiled and edited by: URLEND Trainees, 2011-2012 - 3/2012
Content Last Updated: 11/2015

Funding/Support

The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.