What is Autism?
Autism is a complex neurobehavioral disorder characterized by impairment in reciprocal social interaction, impairment in communication, and the presence of repetitive and stereotypic patterns of behaviors, interests, and activities. The onset of symptoms is typically before the age of 3 years. The severity of impairment in the given domains as well as the pattern of impairments varies from individual to individual; That is why diagnosticians refer to a “spectrum” of disability.
Impairment in social interaction range from difficulty initiating and maintaining interaction, impaired ability to recognize and experience emotions, and difficulty processing and appreciating the thoughts and feelings of others. Communication deficits range from no useful form of communication to very advanced language abilities, but little ability to use language in a social manner. Repetitive and stereotypic behaviors include perseverative behaviors such as complex rituals, extreme difficulty adapting to change and transition, and unusual movements such as hand flapping or whirling.
Autism is one diagnosis within the larger category of Pervasive Developmental Disorders described in the The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision edition (DSM-IV, TR). Autism, along with related, but slightly different disorders of Aspergers Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified, constitute the conditions commonly referred to as the Autism Spectrum Disorders. Two rare disorders, Rett Syndrome (a genetic disorder) and Disintegrative Disorder of Childhood are the other currently recognized pervasive developmental disorders.
Once thought to be very rare, autism spectrum disorders are estimated to occur in an many as 1: 160 (one in every 160 people).
How is Autism Diagnosed?
Research indicates that early diagnosis is critically important. Therefore, parents and caregivers should be aware of some of the earliest signs of possible autism. Behaviors of concern include:
- regression (loss of) of previously achieved language milestones, including babbling
- lack of pretend play, or even imitative play, such as babbling on a toy telephone
- lack of pointing or looking toward where another points
- lack of response to one’s name, or decreasing response to name
- lack of pointing to indicate needs and lack of response to pointing behaviors of others
Once a suspicion is raised, the diagnosis is dependent on further assessment by an individual or team specializing in the diagnosis and treatment of Autism Spectrum Disorders. There is no single test that is diagnostic of autism. In order to have a diagnosis of Autism or one of the Pervasive Developmental Disorders, an individual must satisfy the diagnostic criteria outlined in the DSM-IV.
Click here for complete diagnostic criteria
Because the DSM-IV criteria are descriptive of behaviors, many diagnostic teams will use comprehensive standardized instrument, specifically developed for the diagnosis of Autism, to demonstrate that observed behaviors are clearly in the atypical range. Such instruments might include one or more of the following: The Childhood Autism Rating Scale (CARS), the Autism Behavior Checklist (ABC), The Gilliam Autism Rating Scale (GARS), or a combination of the Autism Diagnostic Interview- Revised (ADI-R0 and the Autism Diagnostic Observation Schedule (ADOS). See First Signs for similar assessment instruments.
Diagnostic teams will also clarify that the observed difficulties are not better explained by a different diagnosis, such as mental retardation, speech and language delay, hearing loss, and others. Finally, a medical evaluation is recommended to determine if there is a specific, diagnosable medical condition that is associated with the autistic behaviors or whether there are medical conditions commonly associated with autism (e.g. seizure disorder) that require further evaluation and treatment. As part of a comprehensive assessment, audiological evaluation is imperative.
There is evidence to support the fact that early intervention has the potential to make a significant difference for a child with and Autism Spectrum Diagnosis. Therefore, the American Academy of Pediatrics, the Centers for Disease Control, and numerous other organizations supporting early diagnosis and treatment, strongly recommend early autism screening.
How do I find a qualified provider of behavioral intervention?
Qualified providers have specialized training in autism spectrum disorders, developmental disabilities, and applied behavior analysis. Consumer guidelines for identifying qualified providers are available at http://www.abainternational.org/Special_Interests/AutGuidelines.pdf.
Many of these providers are board certified behavior analysts, and you can search for a board certified behavior analyst in your area online. However, not all behavior analysts are qualified providers, so be sure to ask the provider specifically what specialized training and experience he or she has in autism and developmental disabilities
Where can I learn more about Applied Behavior Analysis (ABA)?
The field of behavior analysis is a science focused on the study of behavior. Behavior analysis includes applied, basic research and conceptual aspects of the field. Applied behavior analysis (ABA) has flourished, given its impact on changing socially significant human behavior and is defined by meaningful outcomes to everyday problems (e.g., school, vocational, family life, behavioral difficulties, language acquisition, social interactions, etc.).
Although ABA has received much research support as an intervention for individuals with autism spectrum disorders, it has been broadly applied to general and special education, job skills, self-care, parenting, behavioral safety and employee performance management, to name a few of the areas it has impacted.
The following references can provide more in-depth information on Applied Behavior Analysis:
- The Association for Behavior Analysis (ABA)
This nonprofit professional organization supports behavior analysis through research, education, and practice. The website provides additional information and resources in the field of behavior analysis and lists information on local chapters and special interest groups (e.g., Autism Special Interest Group). The organization holds an annual conference and welcomes parents and professionals alike to participate in sharing of current, data-based information in the field.
- The Cambridge Center for Behavioral Sciences.
Information specific to Autism and ABA is provided under “Behavioral Solutions”. An introductory, online tutorial on behavior analysis is also offered.
- Cooper, J., Heron, T., & Heward, W. (2006). Applied behavior analysis (2 nd ed.). New Jersey: Prentice Hall College Division.
This updated version of a classic text in the field provides an overview of behavior analytic principles and practice along with ethical considerations for those practicing within the field.
- Maurice, C., Green, G., Luce, S. (Eds.) (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Texas: Pro-Ed.
This manual describes implementation of behavioral intervention specifically with young children with autism. Information is provided on selecting effective treatments, teaching programs, instructional staff, and working within school settings.
How do I explain my decision to use science-based treatments for autism when friends and relatives often insist I try something new?
Every few months or so, some "new" treatment or "repackaging" of a known treatment will gain the attention of consumers. Until there is a shared commitment to science, to responsible journalism, and to using data to guide decision making, this will be the sad reality of autism treatment.
Given the large numbers of television programs and articles related to autism treatment, it is not surprising that you may frequently receive advice and suggestions from extended family members, neighbors, and co-workers, particularly after a news item is broadcasted, printed, or otherwise disseminated. Many of these individuals have the best intentions and are eager to share what they believe is "cutting edge" information about autism. In other cases, the advice can be provided in a manner that comes across as critical of what you are choosing to do or not do for your child.
If the information is offered by a more casual acquaintance, it may be best to simply thank him or her and move on; however, such a strategy may not fare as well with individuals with whom you have a closer relationship. In these cases, you probably want to share some of the following:
- That there are dozens of "treatments" for autism that manage to get widespread media attention well before any proponent actually PROVED that the technique works;
- That there is a large body of scientific research published in top notch journals that supports the choices that you made;
- That the interventions that are actually shown to be the most effective often get the least amount of media attention; and
- That for most other medical conditions, a provider that bypasses a proven intervention and uses a fringe treatment may actually be sued for malpractice (you may even consider drawing an analogy to a medical condition of particular interest to the person providing the advice).
Of course, you may also consider addressing this matter proactively. This would involve explaining your choices and commitment to science based treatment to more significant family members on your terms and at your convenience. You may even consider sharing the link to this site and explaining that the information contained in our website may help consumers separate the wheat from the chaff.