Understanding Autism & ABA

Autism is a developmental disability that causes social and communication challenges and may occur with significant behavioral challenges as well. According to the Centers for Disease Control, 1 in 31 children have autism. More than 3.5 million Americans live with autism. These numbers translate into huge costs: Autism services in the U.S. are $249 billion per year, more than any other medical condition – greater than cancer, heart disease and strokes combined.

The original estimates of the prevalence of autism indicated that it occurred in around 2 per 10,000 people. However, recent estimates place the prevalence as high as or higher than 1 in 31 children for all autism spectrum disorders combined according to The Centers for Disease Control and Prevention (CDC). It is likely that the increased prevalence of autism is due to increased awareness of the disorder by the population at large as well as by physicians and other providers of service to children and better diagnostic tools that more accurately covers the entire autism spectrum. There is some evidence that suggests that mental retardation is being given as a primary diagnosis less often than in the past. The increased prevalence of autism coincides with this decrease. However, a true increase in the prevalence of autism across time is certainly possible.

Genetic inheritance is involved in the development of autism spectrum disorders (ASD). Genetic factors likely interact with environmental variables to result in the expression of autism. Neurobiological research indicates that autism is likely the result of genetically determined abnormalities in brain development. This abnormal brain development may start before the child is born. It has been difficult for genetics researchers to locate a specific genetic variable involved in autism but recent studies have identified several genetic mechanisms that each lead to autism.

There are no definitive diagnostic tests for autism. The soundest means of determining diagnosis is a thorough review of the child’s developmental history and observation of their behavior in structured and unstructured situations. The diagnostic tools most often turned to by pediatricians, who are the front line of noting developmental problems, are the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD). When a pediatrician suspects autism or another developmental disorder, they should refer the child’s family to a specialist in childhood development. When a child is referred to a specialist for formal testing, a caregiver interview instrument is often the first diagnostic tool used. Two tools require clinicians to receive competency-based training to implement them. One is the Autism Diagnostic Interview (ADI), developed by a panel of autism experts headed by Catherine Lord in 1994, and the other is the Diagnostic Interview for Social and Communication Disorders (DISCO), developed by Lorna Wing and colleagues in the UK. A structured observation of the child should also be conducted and the currently accepted gold standard for this is the Autism Observation Diagnostic Schedule (ADOS). Clinicians are also required to pass competency-based trainings to administer this tool.

According to the CDC, ASD can sometimes be detected at 18 months of age or younger. By age 2, a diagnosis by an experienced professional can be considered reliable. However, many children do not receive a diagnosis until they are much older.

The autism spectrum is broad. The term profound autism refers to those individuals with autism who require 24/7 care throughout their lives, and who have minimal or no verbal communication. Around 27% of autistic individuals have profound autism. For more information on profound autism, visit the Profound Autism Alliance.

Some signs of autism can appear in early infancy, though they often become more noticeable between 18–24 months. The presentation of symptoms of autism can vary greatly; however, the characteristics necessary for diagnosing it are as follows:

1. Impairment in reciprocal social interaction (e.g., limited eye contact, responding to people as if they are objects).
2. Communicative deficits (e.g., limited or no verbal communicative skills, problems using pronouns).
3. Repetitive behavior or marked adherence to specific routines (e.g., body rocking, problems transitioning from one activity or environment to another).

If a child is not meeting key milestones, especially in communication or social interaction (like not babbling by 12 months or not saying single words by 16 months), it’s a good idea to talk with a pediatrician. Early evaluation can lead to earlier support, which can greatly improve outcomes.

Applied Behavior Analysis or ABA is the application of the empirically validated principles of behavior to build skills through directed instruction and to treat problem behaviors by determining the function of them and arranging for effective intervention that addresses the behavior’s function. ABA is an approach to analyzing each individual’s skill deficits and problem behaviors. Though autism is a disorder that involves specific general impairments, each child brings with them a distinct set of difficulties. No single treatment package can be used for all children and ABA is a method for examining the needs of each person. Specific instruction can then be tailored to a child’s unique situation.

The person who supervises the implementation of an ABA program should be a “behavior analyst.” There is a Behavior Analyst Certification Board® (BACB®) and the criteria for becoming a Board Certified Behavior Analyst® or BCBA® are listed at www.bacb.com (see the consumer information section, click on “Standards for becoming a BCBA or BCABA®”). This certification process is relatively new and if a person were to meet the academic and experiential requirements to sit for the BACB’s certification exam then such persons might be seen as having the appropriate background for supervising a program in Applied Behavior Analysis. In brief, a professional would need a Master’s or PhD in a human service discipline such as psychology, education, or special education and they should have a number of graduate courses specifically in behavior analysis. Another necessary qualification is substantial relevant supervised experience in working with persons with autism. Beyond that, a BCBA or BCABA must remain abreast of developments in the field by obtaining a minimum of 36 hours of continuing education across every 3 years.

No single “treatment package” will serve every child’s needs and no individual can claim to own ABA. ABA, for the treatment of autism, is the application of the principles of learning to 1) build skills and 2) treat problem behavior. It works because each person’s behavior is assessed to determine what skills they have not mastered and what types of problem behavior interfere with learning and social functioning. For skill deficits, direct instruction is provided until the skill is mastered. For problem behavior, specific analysis of why the behavior occurs is used to develop treatment to eliminate the behavior or teach the person to use other more appropriate behavior to serve the same function.

Does it always work? This is a difficult question to answer. Though ABA has been shown to be effective, many of the aspects of applying the principles of behavior analysis in the treatment of autism have not been investigated thoroughly. For example, how many hours per week are necessary to produce a change is not known. Additionally, some skills are very difficult to teach, and the best instructional strategies are not known. It is, however, quite likely that the proficiency of the providers of service, both direct care therapists or teachers and their supervisors will play a significant role in the progress that any child makes.

Scientific evidence indicates that there is no correlation between autism and vaccines though millions of dollars, which might otherwise have gone to funding important research, have been spent investigating this notion. Andrew Wakefield and 12 colleagues published a study in The Lancet tentatively suggesting a link. However, it was discovered that Wakefield was paid over $100,000 by a group of lawyers and parents seeking to sue vaccine manufacturers for damages caused by the MMR injection prior to conducting his research. Additionally, participants were deliberately rather than randomly selected for the study. It is likely they were chosen to suggest a link because they had autism and gastrointestinal difficulties. This link has not been supported by subsequent scientific investigation. Madsen and colleagues (2002) conducted a large scale study in Denmark in which over half a million children born between 1991 and 1998 were studied. Nearly 100,000 were not vaccinated with the MMR vaccine. The prevalence of autism in this group was compared to that observed in the over 400,000 children who did receive the MMR vaccine. If the vaccine was related to autism a difference in prevalence would be apparent, however, prevalence was identical across the groups. This study provides overwhelming evidence against the hypothesis that MMR vaccination causes autism. The CDC, the American Academy of Pediatrics, the National Academy of Sciences Institute of Medicine, the World Health Organization, and the UK’s Medical Research Council have all concluded that there is no evidence that the MMR vaccine is related to autism.

But is there evidence for thimerosal or mercury in vaccines causing autism? Because thimerosal was removed from vaccines several years ago and the prevalence of autism has continued to increase, then thimerosal in vaccines was not a cause of autism. The most definitive study to date was conducted by Danish researchers (Hviid et al., 2003). It looked at thousands of children who received either vaccines containing thimerosal or vaccines without this preservative and found that the rates of autism were identical in the two groups. If thimerosal was causing autism, a difference should have been found. Thimerosal had been removed from the vaccines of other developed countries such as Canada and Denmark prior to it being removed from vaccines in the U.S., however, no decrease in the prevalence of autism has been detected in these countries (NYTimes, retrieved 06/25/05). In 2003 the American Academy of Pediatrics, an organization that called for the removal of thimerosal from vaccines in July 1999, summarizes the evidence of harm from it as follows, “No scientific data link thimerosal used as a preservative in vaccines with any pediatric neurologic disorder, including autism. Despite this, the Centers for Disease Control and Prevention, American Academy of Pediatrics, National Institutes of Health, and US Public Health Service have continued to investigate this issue to put theoretic concerns about this mercury-containing compound to rest.”

The Individuals with Disabilities Education Act (IDEA) is a federal law that was enacted in 1975 (and revised in 2004) and mandates that each state provide all eligible children with a free public education that meets their individual needs.

Children younger than 3 years may be eligible for early intervention (EI) services, while local school districts are required to provide special education services where EI eligibility ends after the age of 3. If your child is over the age of 3, you should contact your local school district to inquire about special education services for your child. For EI, consult the Autism Speak Resource Guide for assistance.

For more information and resources on IDEA for toddlers, children, and youth with disabilities, visit the IDEA website.

Autism services can begin as early as infancy, with no minimum age, especially when developmental delays are observed. Services are typically broken down by the following age groups:

Early Intervention (Birth to Age 3)

• In the U.S., children under 3 can receive services through Early Intervention (EI) programs, which are federally mandated (Part C of the IDEA law).
• Services can include speech therapy, occupational therapy, and ABA-based approaches—even if a child doesn’t yet have a formal autism diagnosis but shows developmental delays.

Preschool and Beyond (Age 3+)

• At age 3, services transition to the public school system under Part B of IDEA.
• Children may receive an Individualized Education Program (IEP) that includes special education and related services, including ABA in some cases.

Diagnosis and Formal ABA Services

• A diagnosis of autism can typically be made as early as 18–24 months, though signs may be seen even earlier.
• Once diagnosed, ABA therapy can begin immediately, and early intensive intervention (starting before age 4) is often shown to have the greatest long-term benefits.

Yes, insurance often does cover ABA services for individuals with autism, but coverage depends on several factors, including:

• State Laws: In the U.S., most states have mandates requiring certain health insurance plans to cover ABA for autism. However, the specifics (age limits, annual caps, etc.) vary by state.
• Type of Insurance Plan:
  1. Private Insurance: Many employer-sponsored and individual plans cover ABA, especially if they fall under state mandates.
  2. Medicaid: ABA is covered by Medicaid in most states as part of services for children under 21 (through the Early and Periodic Screening, Diagnostic and Treatment benefit).
  3. Self-funded Plans (regulated under federal ERISA laws): These may not be subject to state mandates, so coverage depends on the employer’s policy.
• Diagnosis Requirement: Most insurers require a formal autism diagnosis by a qualified professional before authorizing ABA services.
• Preauthorization and Documentation: Insurance typically requires:
  1. A treatment plan developed by a Board Certified Behavior Analyst (BCBA)
  2. Periodic reviews and progress reports

There are many job opportunities available for individuals with autism, especially as organizations increasingly continue to recognize and support neurodiversity in the workplace. The best jobs often align with a person’s strengths, interests, and sensory or social preferences, which is something students at NECC begin to explore when they turn 14 years old through our Vocational Department.

There are several supportive employment programs that offer job coaching or customized roles for individuals with autism, including vocational rehabilitation services that are available in every U.S. state. To find your state’s Vocational Rehabilitation Agency, visit the Rehabilitation Services Administration (RSA) site.

While an autism diagnosis can often make parents and families feel alone, there are several national and state-level organizations that can help support you and provide you resources to assist your family on this journey.

Autism Speaks has a number of toolkits and resource guides for parents.

The Profound Autism Alliance is committed to the recognition of the unique challenges that people with profound autism and intellectual disability experience. Our mission is to improve their health and connection through inclusive research and focused advocacy that will result in meaningful services and supports.

The Center for Parent Information and Resources helps connect families with individuals with disabilities (from birth to age 26) to one of nearly 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US.  

Hospitals and Autism Centers. Check with your pediatrician or local hospitals to see if they can recommend any parent or family support groups or community resource centers in your area.