The puzzle pieces of this ribbon reflects the mystery and complexity of autism.
The different colors and shapes represent the diversity of people and family living with this disorder.
The brightness of the ribbon signals hope—-hope through research and increasing awareness in people like you.
Practical Information About Autism
- About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
- ASD is reported to occur in all racial, ethnic, and socioeconomic groups. [Read summary] [Read article]
- ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). [Read article]
- Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of about 1%. A study in South Korea reported a prevalence of 2.6%. [Data table] [Read article]
- About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read summary]
The Truth About Autism
Autism Spectrum Disorder (ASD) is a condition most often diagnosed during childhood and is characterized by deficits in communication, emotional expression and connection, and repetitious behavior. ASD is a new DSM-5 distinction that codifies a number of similar conditions under the ASD umbrella. Diagnoses from the DSM-IV now within the bounds of ASD include autistic disorder, pervasive developmental disorder not otherwise specified, childhood integrative disorder, and Asperger’s disorder (Johnson & Carter, 2011). Because the diagnostic criteria for the four DSM-IV diagnoses were so similar, and because the DSM-5 diagnosis of ASD is more broad-based, individuals diagnosed under the DSM-IV should meet the DSM-5 criteria without issue.
The latest research from the Centers for Disease Control places the incidence of ASD at 1 in 68 children (Centers for Disease Control and Prevention [CDC], 2014a), up from 1 in 110 children in 2009 (Johnson & Carter, 2011). While it is uncertain whether this growth is due to an actual increase in the disorder’s prevalence or if it is a result of more diagnoses, what is clear is that it is far more common in boys, who suffer from the disorder at a rate five times that of girls (CDC, 2014a).
Symptoms and Diagnosis of Autism Spectrum Disorder
Children with ASD typically display a lack of social skills and empathetic behavior. There are deficits in communication, the use of inappropriate gestures, and little to no interest in engaging with other children or family members in conversation. As a result, children with ASD have difficulty building relationships, especially with peers. Many individuals with ASD do not like being touched and suffer from continuous learning disabilities. An overreliance on routines is generally observed, as is an extreme sensitivity to changes in the environment, disturbances to which can easily cause anger and aggression in the affected individual (Ho, Stephenson, & Carter, 2012). Some individuals also display fixative behaviors on inappropriate objects (American Psychiatric Association [APA], 2013a).
ASD is most often diagnosed in childhood, but is a condition that persists throughout the lifespan. Two stages of evaluation are used to determine the presence of the disorder. In the first stage, screening and evaluative tools are used to detect the presence of symptoms. This may include data collection from parents regarding the behavior of the child and interviews with the child using the Autism Diagnostic Interview. Stage two of the process involves more comprehensive testing conducted by specialists using instruments such as the Childhood Autism Rating Scale or the Autism Diagnostic Observation Schedule (Johnson & Carter, 2011).
For a DSM-5 diagnosis, symptomology must be present from the early years of life, even if the symptoms are not recognized until adolescence or adulthood. Symptoms must include all of the following (APA, 2013b):
- Deficits of social-emotional reciprocity – the individual lacks the ability to engage in normal give-and-take conversations with others, failure to either initiate or respond to interactions from others, or has little or no desire to share feelings or interests with others.
- Deficits in nonverbal behaviors – the individual displays poor integration of nonverbal and verbal communication, displays abnormal body language or eye contact, or has a complete lack of nonverbal cues, including few, if any, facial expressions when communicating.
- Deficits in relationship building and maintenance – the individual demonstrates difficulty adjusting behavior to reflect the social context, is unable to engage in imaginative play, has trouble making new friends, or shows no interest in making friends.
Additionally, the DSM-5 requires the presence of at least two of the following (APA, 2013b):
- Stereotyped or repetitive behaviors – the individual engages in repetitious speech, motor movements, or use of objects.
- Insistence on sameness or routines – the individual actively avoids change, has difficulties transitioning from one task to the next, or demonstrates highly rigid patterns of thinking.
- Restricted interests of abnormal focus or intensity – the individual is hyper-focused upon or excessively attached to a few objects or shows extremely restricted interests.
- Hyper- or hyporeactivity to sensory input – the individual displays little or no reaction to pain or temperature, shows heightened interest in lights or moving objects, or reacts strongly to specific textures, smells, or sounds.
Challenges of Autism Spectrum Disorder for Families
Because ASD can present with maladaptive behaviors, including self-injurious, disruptive, or destructive behaviors, aggression, ritualism, and inappropriate vocalizations (Manente, Maraventano, LaRue, Delmolino, & Sloan, 2010; Ho et al., 2012), a great deal of patience, love, and awareness is required of parents and other caregivers of children with ASD. It can be a highly emotional and draining process for families as they try to manage their loved one’s condition, which can lead to struggles with one’s own emotions from time to time. Some strategies might appear to satisfactorily mitigate negative behaviors for a period of time, only for the child's behavior to change quickly. This can cause frustration and anxiety for parents and siblings who bear the most responsibility for managing their loved one’s behavior. Children with ASD who show little empathy toward others or who engage in violence can make the situation seem almost unbearable for the entire family.
Having a child with ASD can have a profound effect on marriages and family relations. The inability of the child to interact with other people on a meaningful level makes it difficult for bonding with parents or siblings and takes a significant emotional toll on all those involved (Ho et al., 2012). The entire family can feel overworked if there is a constant need for assistance and redirecting. In the case that the child needs supervision 24 hours a day, both parents and siblings can feel like they are in a continuous state of exhaustion. Caregivers can often stress about what is going to happen when the child gets older and whether or not they will be eligible for disability services.
The financial strain on the family can be significant given the expense of therapy and treatments, particularly if they are not covered by insurance. Estimates by Manente et al. (2010) place the lifetime cost of supporting a person with ASD at $3.2 million. In some cases, one parent may have to give up work outside the home in order to care for the child on a full-time basis. Parents often have stress in working with educational systems as well, especially when their child is not cooperating with their teachers or is not receiving the appropriate accommodations and treatments guaranteed to them under the Individuals with Disabilities Education Act (IDEA).
Treatments for ASD
There is no cure for ASD, nor is there a medication that can fully treat ASD’s primary symptoms. Some pharmacological options are available to treat secondary symptoms, such as depression or inability to focus (CDC, 2014b), yet many parents are leery of placing their child on medication because of the potential for negative side effects or the development of addiction or dependency. Behavioral treatments, such as Applied Behavior Analysis (ABA), which encourages positive behaviors and improves communication through positive reinforcement, have shown promise. “Floortime” is another popular behavioral treatment in which parents or caregivers engage with the child at their level in order to promote emotional regulation and relationship development (CDC, 2014b).
Early intervention services are among the most efficacious treatments for ASD, with much research showing improved quality of life and prevention of further developmental delays (Coogle, Guerette, & Hanline, 2013). By addressing a child’s behaviors before the age of three, they can learn to talk and interact appropriately with others, better manage their anger, and learn to break out of a reliance on routines. Parental and family involvement in these early intervention activities also fosters relationship growth between family members and promotes knowledge and understanding of the disorder. Families involved in early intervention strategies report positive experiences with the approach, particularly those in which the clinician involves the family (Coogle et al., 2013).
How Therapy Helps Families
Therapy for ASD provides caregivers with knowledge and tools that will help them manage their child’s symptoms to the greatest extent possible. Caregivers learn to cope with their own emotions and learn positive discipline strategies that help keep their child’s behavior from getting out of hand. Being that the child's symptoms can change over time, there are treatment strategies that can be used depending on the child’s behavior. High-structure methods, such as Floortime, are particularly helpful in controlling the child’s responses and fostering empathy (CDC, 2014b).
Therapy is beneficial to other family members as well, by providing an environment in which emotions and frustrations can be released. Therapy is also advantageous because family members can communicate about their concerns, feelings, and difficulties, and learn how to adjust to the challenges of life with ASD. The more understanding families have of the disorder, the more likely they are to remain patient and assertive with their loved one. Therapy can teach methods to improve the functioning between each family member as well. The more counseling families undertake, the more insight will be gained from professionals who can offer the most productive strategies and tools to minimize disturbances to family life that result from ASD (Ho et al., 2012).
American Psychiatric Association. (2013a). Autism spectrum disorder. Retrieved from http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf
American Psychiatric Association. (2013b). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, D.C.: Author.
Centers for Disease Control and Prevention. (2014a). Facts About ASD. Retrieved from http://www.cdc.gov/ncbddd/autism/facts.html
Centers for Disease Control and Prevention. (2014b). Treatments. Retrieved from http://www.cdc.gov/ncbddd/autism/treatment.html
Centers for Disease Control and Prevention. (2014c). Facts About ASD. Retrieved fromhttp://www.cdc.gov/ncbddd/autism/data.html
Coogle, C.G., Guerette, A.R., & Hanline, M.F. (2013). Early intervention experiences of families of children with an autism spectrum disorder: A qualitative pilot study. Early Childhood and Research Practice, 15(1), 1-11. Retrieved from http://files.eric.ed.gov/fulltext/EJ1016155.pdf
Ho, B.P.V., Stephenson, J., & Carter, M. (2012). Anger in children with autism spectrum disorder: Parent’s perspective. International Journal of Special Education, 27(2), 14-32. Retrieved from http://files.eric.ed.gov/fulltext/EJ982857.pdf
Johnson, M.K., & Carter, M.R. (2011). Autism spectrum disorders: A review of the literature for health educators. American Journal of Health Education, 42(5), 311-318. Retrieved from http://files.eric.ed.gov/fulltext/EJ944015.pdf
Manente, C.J., Maraventano, J.C., LaRue, R.H., Delmolino, L. & Sloan, D. (2010). Effective behavioral intervention for adults on the autism spectrum: Best practices in functional assessment and treatment development. Behavior Analyst Today, 11(1), 36-28. Retrieved from http://files.eric.ed.gov/fulltext/EJ911979.pdf