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PREVALENCE & DIAGNOSIS IN THE UNITED STATES

Autism is no longer considered a rare disorder. About 1 in 68 children has been identified with an autism spectrum disorder (ASD) according to recent estimates from the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network.

Currently, diagnosis of autism is based on observation of behavioral symptoms outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). Because symptoms vary considerably from individual to individual, diagnosis can be quite challenging, and because it is a developmental disability, autism may affect an individual differently at different stages of their lifespan.

In the DSM-5 (2013), diagnostic criteria for autism spectrum disorder (ASD) have been categorized into two main areas: 1) social communication and social interaction, and 2) restricted and repetitive patterns of behavior, interests, or activities.

All of the following symptoms describing persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, must be met:

  • Problems reciprocating social or emotional interaction, including abnormal social approach, difficulty establishing or maintaining back-and-forth conversations and interactions, inability to initiate or respond to an interaction, and problems with shared attention or sharing of emotions and interests with others.
  • Severe problems in developing and maintaining relationships. This can range from difficulties with making friends and lack of interest in other people to difficulties in engaging in pretend play and age-appropriate social activities, and problems adjusting to different social expectations.
  • Nonverbal communication problems such as abnormal eye contact, body language, posture, facial expressions, tone of voice and gestures, as well as an inability to understand these.

At least two of the four symptoms related to restricted and repetitive behavior need to be present:

  • Stereotyped or repetitive speech, motor movements or use of objects.
  • Excessive, inflexible adherence to routines, ritualized patterns of verbal or nonverbal behavior, or insistence on sameness.
  • Highly restricted, fixated interests that are abnormal in intensity or focus.
  • Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment.

Symptoms must be present in early childhood but may not become fully manifest until social demands exceed capacities or may be masked by learned strategies in later life. Symptoms need to be functionally impairing and not better described by another DSM-5 diagnosis such as intellectual developmental disorder or global developmental delay.

With support from the NLM Family Foundation, Massachusetts Advocates for Children has published a fact sheet for parents and educators entitled, DSM-5 Autism Changes: Impact on Special Education. This fact sheet provides a brief explanation of the new DSM-5 ASD diagnostic criteria, and explains how the DSM-5 changes should not change or eliminate a child's IEP services. The fact sheet also describes special education rights and procedures parents can use to ensure that children continue to receive necessary services and supports. You can access the fact sheet by visiting Massachusetts Advocates for Children's website.

CAUSE, CURE & INTERVENTIONS

Although many theories regarding the etiology of autism have been proposed, the cause is not yet clear. It has been suggested that autism may be caused by genetic, immunological, metabolic, and environmental factors. This issue is the topic of much debate and is currently the focus of many autism research endeavors.

Additionally, there is no known cure for autism, and there are diverse views amongst those in the autism community regarding the possible benefits of a cure. However, common treatments and interventions target early and intensive education which can help the individual improve their social, communication, and cognitive skills. Common treatments and interventions include sensory integration therapy, nutritional therapy, intensive educational therapy, music therapy, play therapy, Developmental Individual-Difference Relationship-based Model/Floortime, Relationship Development Intervention, Treatment and Education of Autistic and Related Communication-handicapped Children (TEACCH), Applied Behavior Analysis (ABA), pharmacological treatments, augmentative and alternative communication (AAC) strategies, including facilitated communication, and comprehensive treatment programs.

AUTISM ACROSS THE LIFESPAN

Autism is a developmental disorder which often affects an individual throughout the lifespan; however, only a very small proportion of autism research, education, and service endeavors address issues that affect adults with autism. The vast majority of autism research focuses on children with autism, a disproportionate number of interventions for autism are appropriate only for children, and most autism services available are geared primarily towards children. The reality is that the majority of these children with autism do grow up to become adults with autism who are then left with significantly fewer resources and options.

As an individual with autism transitions from high school, there are a number of post-school issues that must be considered, such as postsecondary education, vocational training, supported employment, independent living, and community participation. As individuals with autism and their parents or caregivers get older, the issue of long-term life planning becomes more salient. Caregivers must ensure that the needs and desires of their loved one with special needs will be addressed once they are gone. This can be a complex process as the individual and caregiver must make decisions regarding the individual's medical care, living arrangements, daily activities, community participation, employment, religious involvement, guardianship, and long-term financial planning. As more communication strategies become available, individuals with autism are increasingly able to communicate their own lifespan needs and desires and take a more active role in the decision-making process.

REFERENCES

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA: American Psychiatric Association, 2013.


Centers for Disease Control and Prevention (2014). Prevalence of Autism Spectrum Disorders Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, Morbidity and Mortality Weekly Report 2014: 63(No. SS-02), 1-21.

Hyman, S.L. (2013). New DSM-5 includes changes to autism criteria. AAP News, June 2013.

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