Montana Medical Home Portal - Autism Spectrum Disorder

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)
Parent centers in every state provide training to parents of children with disabilities and provide information about special education, transition to adulthood, health care, support groups, local conferences and other federal, state, and local services. This link has a search tool to help you find the parent center in your state; Department of Education, Office of Special Education.

General

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

SPARK for Autism
No-cost genetic testing as part of participating in a study to speed up research and advance the understanding of autism. Simple and free. Aims to facilitate a precision medicine approach to autism that includes the DNA, environment and lifestyle of the individual and their family. Participation is online and takes 30 minutes to complete. Incentives for participating. The University of Utah is one of the IRB-approved clinical sites, May 2019.

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 Spectrum Disorder (CDC)
Parent and clinical information regarding autism spectrum disorder from the Centers for Disease Control and Prevention, with focused information on early warning signs, evaluation and treatment, research, and developmental milestones.

Autism Spectrum Disorders (healthychildren.org)
From the American Academy of Pediatrics, information about autism spectrum disorders (ASDs). Materials can be printed in English or Spanish to provide as patient education handouts.

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
Offers a national database for assistive tech resources all over the country.

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.

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.

Autism Program at Yale
Yale's Autism program focuses on developmental disorders such as autism and other neuropsychiatric disorders to understand the developmental trajectory of social cognition. Ongoing studies include children, adolescents, and adults, clinical and using telemedicine.

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

Autism Spectrum Disorder Fact Sheet (NINDS)
A printable, 8-page patient education resource for families. Answers to common questions about ASD, from the National Institute 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 Disorder: What Every Parent Needs to Know, 2nd Edition (AAP)
This guide offers authoritative, accessible advice about autism that parents can trust. It will help them understand how ASD is defined and diagnosed and the most current behavioral, developmental, educational, and medical therapies. Topics covered align with the DSM-5 updates. Paperback and eBook versions available for purchase.

Translated Autism Resources (VFN)
Autism Fact Sheet and Learn the Signs: Act Early Autism Fact Sheet, each translated into multiple languages, Vermont Family Network (VFN). 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 in Montana

Select services for a different state: ID, NM, NV, RI, UT

Audiology

See all Audiology services providers (48) in our database.

Autism Clinics

See all Autism Clinics services providers (3) in our database.

Clinical Trials Research

We currently have no Clinical Trials Research service providers listed; search our Services database for related services.

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 (46) 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 & Reviewers

Initial publication: August 2012; last update/revision: November 2015

Current Authors and Reviewers:

Author:

Deborah Bilder, MD

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