Montana Medical Home Portal - Autism Spectrum Disorder

Introduction

The Questions and Answers that follow aim to provide an introduction to autism spectrum disorders for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.

More information about many topics relevant to children with autism spectrum disorder and many other chronic conditions and their families can be found in the left menu. Detailed information aimed at primary care doctors can be found in our Autism Spectrum Disorder module.

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

For Parents and Patients

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 for Autism study
A multi-site national study on the causes of autism. Open to individuals with autism and their family members. Information is gathered online and participants mail in a saliva sample for genetic testing, the results of which 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
The ASA promotes autism awareness and is dedicated to providing helpful information regarding research, treatment, advocacy, and family support throughout the lifespan.

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

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.

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.

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.

Services for Patients & Families in Montana (MT)

Service Categories	MT	NW		ID	NM	NV	RI
Alternative Education/Schools	46		16	55	6	8	12
Applied Behavior Analysis (ABA)	31		4	24	4	17	54
Audiology	50	1	27	264	8	24	50
Autism Programs	3		8	29	3		35
Developmental - Behavioral Pediatrics	8	1	2	2	4	11	9
Early Intervention for Children with Disabilities/Delays	29	2	151	156	29	14	54
General Counseling Services	145		206	96	172	33	380
Nutrition Assessment Services	1		2	84	14	3	13
Occupational Therapy, Pediatric	36		27	298	18	11	40
Pediatric Dentistry	52	2	61	70	29	31	64
Pediatric Gastroenterology	17	1	3	6	6	19	4
Pediatric Genetics	7	1	4	2	3	4	6
Pediatric Neurology	15		2	31	6	13	5
Pediatric Sleep Medicine	4		3			1	3
Psychiatry/Medication Management	18		23	14	39	79	62
Social Skills Training	4		2	23	8	11	17
Speech - Language Pathologists	50	3	68	377	19	23	78

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

SPARK for Autism study
A multi-site national study on the causes of autism. Open to individuals with autism and their family members. Information is gathered online and participants mail in a saliva sample for genetic testing, the results of which are provided to the participant. Funded and led by the Simons Foundation.

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: December 2019

Current Authors and Reviewers:

Author:	Deborah Bilder, MD
Reviewers:	Joey Hanna
	Jennifer Goldman-Luthy, MD, MRP, FAAP

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