Autism Facts

  • About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from the Center of Disease Control (2012).
  • ASDs are reported to occur in all racial, ethnic, and socioeconomic groups.
  • ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252).
  • 1% of the population in Asia, Europe, and North America have an autism spectrum disorder.
  • The cost of autism over the lifespan is 3.2 million dollars per person. 60% of costs are in adult services.  Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.
  • More children are being diagnosed at earlier ages—a growing number (18%) of them by age 3. Still, most children are not diagnosed until after they reach age 4. Diagnosis is a bit earlier for children with autistic disorder (4 years) than for children with the more broadly-defined autism spectrum diagnoses (4 years, 5 months), and diagnosis is much later for children with Asperger Disorder (6 years, 3 months).
  • ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%. (Read study summary).

According to the California Department of Education DataQuest Report (Dec 2011), just in Riverside and San Bernardino Counties, there are 7,321 students between the ages of 0-21 with an autism spectrum disorder.

Click here for an information sheet on autism.

Transition to Adult Services

Autism is a lifelong condition. As our children grow, their symptoms and needs will continue to change. Children and adults will vary in their capabilities. Some adults will be completely dependent on parents or caregivers; others will be able to live an independent life; and many will be somewhere in the middle.

The Autism Society Inland Empire recently held a Town Hall meeting to discuss the issues families are facing with Adult Services here in the Inland Empire and released a report in June 2013.  Click here for the full report.  Some of the  key findings included:

1. Current adult services are doing a poor job of serving adults with ASD.  The majority of families and individuals with ASD give a poor rating to current Employment programs (71%), Higher Education programs (64%) and Social programs (75%).  However, when asked how many families have used and currently use these service systems, only a small percentage of families have actually accessed these services.

2.  There are a number of barriers that hinder adults with ASD from success in employment, college and social opportunities.  Common barriers continued to show across employment, college and social programs.  The highest reported barriers for all were:  lack of social skills (79% average), lack of motivation (37%), programs that aren’t appropriate (36%), lack of communication skills (35%), sensory issues (24%), lack of transportation (27%) and cost of the program (19% average).

3.  Need for Information and Resources for Current Adult Services.  According to the 2013 Inland Empire Adult Service Survey, most parents and individuals with ASD feel that they are not knowledgeable about Employment programs (70%); Social Programs (60%).

Evidence Based Treatments

Autism Internet Modules (AIM) - Free free modules are geared towards adult learners on this series of topics including assessment and identification of ASDs, recognizing and understanding behaviors and characteristics, transition to adulthood, employment, and numerous evidence-based practices and interventions.  Developed by the Ohio Center for Autism and Low Incidence (OCALI) in partnership with the Autism Society of America (ASA), the Nebraska Autism Spectrum Disorders Network, the National Professional Development Center on Autism Spectrum Disorders and Toronto’s Geneva Centre for Autism, they can be used by schools to train paraprofessionals, by support groups to teach parents, by university faculty members to provide coursework to graduate or undergraduate students.
Early Intervention - National Research Council Educating Children with Autism (2001) – recommends a minimum of 25 hours a week of intensive services as soon as a child is suspected of having autism. Read a summary of the recommendations.

Indiana Resource Center for Autism (IRCA)  headed by Dr. Cathy Pratt has a website loaded with best practice information. The site contains articles, information about all the latest autism-related resources,downloadable training modules that can be reproduced, publications, a collection of articles by Temple Grandin and othersrecommended books, information about conferences and trainings, and more.

National Standards Report:  More than two dozen autism experts looked at 6,400 research abstracts to determine which treatments are considered “established,” “emerging,” or “not established” in the report and then they published a 53 page report

Getting A Diagnosis

There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual’s communication, behavior, and developmental levels. Because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. A developmental pediatrician, a psychiatrist or psychologist, or a neurologist can assist in making a diagnosis.

If you have a Medi-Cal HMO (like IEHP or Molina) we suggest you ask for a referral to a neurologist. The neurologist visit should be covered under your insurance policy.  Visit our resource page for more information on local doctors with experience diagnosing autism.

There is a difference between a medical diagnosis, an educational assessment (for special education services) and a regional center assessment.  It is possible to have a medical diagnosis and not qualify for services.  Contact us or an advocate for more information on obtaining services.

Causes

There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism versus neuro-typical children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single “trigger” that causes autism to develop.

Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors, such as viral infections, metabolic imbalances, and exposure to environmental chemicals.

Genetic Vulnerability

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Read more about related conditions.

Environmental Factors

Research indicates that other factors besides the genetic component are contributing to the rise in increasing occurrences of ASD, such as environmental toxins (e.g., heavy metals such as mercury), which are more prevalent in our current environment than in the past. Those with ASD (or those who are at risk) may be especially vulnerable, as their ability to metabolize and detoxify these exposures can be compromised. Read more about environmental health and autism.

Symptoms of Asperger’s

What distinguishes Asperger’s Disorder from Autism Disorder is the severity of the symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a normal child behaving differently.

Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others; they simply don’t know how to do it. They may be socially awkward, not understanding of conventional social rules, or show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.

Interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.

One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or it may be formal, but too loud or high pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.

Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism experience mental retardation, by definition a person with Asperger’s Disorder cannot possess a “clinically significant” cognitive delay and most possess average to above average intelligence.

While motor difficulties are not a specific criteria for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.

Challenges for Individuals with Asperger’s

Although many individuals are highly gifted, an individual with Asperger’s can face a different set of challenges:

  • Limited Resources: Regional Centers do not serve children with Asperger’s and we have heard many reports from families whose child did not qualify for special educations services through the school districts.
  • Targets for bullies: Because children with Asperger’s are often included in regular education, but still continue to be socially isolated and awkward in conversations, many children are seen as a perfect victim for bullies on the playground. One report advises that 90% of children with Asperger’s are bullied.
  • Lack of professionals with Asperger’s experience: Many of our children with Asperger’s have difficulty with higher levels of thinking and organization. It takes a special professional to understand the challenges and have the skills to teach the necessary skills. We have children that have brilliant IQ’s, yet can’t organize their thoughts onto paper. Children who can talk for 2 hours on their favorite subject, but can’t hold a 5 minute reciprocal conversation. A child who will have a complete meltdown if they can’t find their favorite toy, but doesn’t understand why someone is sad that their loved one died.
  • Acute awareness of their difference: Many individuals with Asperger’s are aware that they are socially awkward and do not fit in to the social scene. This can lead to increase feelings of depression.

Gifts of Asperger’s

  • Highly focused interest
  • Advanced, sophisticated vocabulary
  • Highly imaginative/creative
  • Greater passion to learn
  • Deeply loyal
  • Relationships are free of bias
  • Have the ability to speak their mind regardless of social context
  • Ability to pursue personal ideas or perspective despite conflicting evidence
  • Enthusiastic to share an interest with friends
  • Recognize order, rules and patterns of how things work
  • Truth tellers