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Autism Spectrum Disorders (ASD) What is Autism Spectrum Disorder (ASD)? The structure and terminology of Autism Spectrum Disorders (ASD) is constantly changing with continued research into the spectrum. However, ASD can be described as a category of individuals with a neurobiological disorder that affects their ability to communicate, understand language, play, and relate to others. The symptoms exhibited by those diagnosed with ASD While individuals with an ASD are all commonly referred to as having “autism,” the particular abilities and symptoms of each individual can vary widely. As such, it is referred to as a spectrum: some people may have mild symptoms, while others may have serious symptoms. You will sometimes also hear ASDs referred to as Pervasive Developmental Disorders (PDD). This term has recently been phased out in favor of ASD, but is still used by some individuals and doctors. The same is true for Asperger’s Syndrome; while it used to be considered a unique diagnosis from autism, doctors have recently reclassified individuals with Asperger’s as individuals with high-functioning ASD. Characteristics of ASDs / Autism There are two main, overarching symptoms that are used for diagnosing an ASD. Again, remember that these specific challenges will manifest differently in each individual, with some individuals having mild symptoms and others having severe symptoms. 1. Difficulty with social communication and interaction. Individuals with autism have a very difficult time with social communication. This can include difficulty making or maintaining eye contact, having reciprocal conversations, understanding nonverbal communication, making friends, and expressing emotion. 2. Restricted, repetitive patterns of behavior, interests, or activities. This can manifest as: repeatedly using motor movements, words, or objects over and over; intense need or desire for order, predictability, and routines; and intense fixation on particular topics. In addition to these symptoms, many individuals with ASD also have heightened sensory experiences (taste, noise, touch, sight, etc.). They may find loud noises, bright lights, or scratchy clothing excessively frightening or hurtful. While this symptom has not historically been a part of autism’s definition, some researchers have recently suggested that it may in fact be its root cause. This is called the Intense World Hypothesis, suggesting that poor social skills and repetitive behaviors are merely the result of individuals with ASD trying to make sense and order out of an overwhelming world. This remains just a hypothesis at the moment, but provides an interesting way of thinking about autism. As you may have noticed, nowhere in the definition of ASD does it mention an intellectual impairment. Some individuals with autism may have an intellectual disability as well, but many individuals with ASD have average intelligence or are exceptionally bright. Partners for Youth with Disabilities 617-556-4075 www.pyd.org How common is ASD? According to the Centers for Disease Control (CDC), approximately 1 in 68 children have an ASD. This number has increased over the past 20 years and is currently at an all-time high, likely due to increased awareness and better diagnosis. It is five times more common among boys than girls. Research is still being done on what causes autism, but so far, our best understanding is that it’s a combination of environmental, genetic, and biologic factors. One thing is excessively clear from the research, though: vaccines do not cause or contribute to autism in any way. Tips for Mentors: Create structure, consistency, and organization. Youth with ASD benefit from routines; a consistent and predictable schedule can reduce confusion and stress for the youth. Be aware of The Hidden Curriculum. The “hidden curriculum” is a term for skills we are all expected to know in order to function in society: non-verbal communication, body language, conversational skills, interpersonal skills, etc. Studies have shown approximately only 7% of communication is the spoken word, the other 38% can be attributed to tone of voice, and 55% non-verbal cues. Therefore even if an individual is highly verbal, missing some of other 93% of communication can be like speaking another language. Since youth with ASD do not naturally pick up on “social cues,” mentors can teach proper communication and relationship skills and behaviors. o Hidden Curriculum of Communication: Role-model proper social etiquette for youth. Practice set phrases the youth can use in social situations, such as what to say when meeting someone new. Role-play difference scenarios with youth and explain why certain behaviors are preferred over others. Practice conversation skills of paying attention, making eye contact, asking questions, etc. Observe other people’s behaviors (social situations, movies, television) and then discuss with youth. o Hidden Curriculum of Relationships: Discuss and role-model proper relationships and friendships. Learn about each other, show caring, trust and kindness, how to play and have fun together, be open to new things. Provide opportunities for social interaction and provide positive feedback and rewards when youth exhibits proper social skills. Discuss boundaries, both physical and emotional. What’s the difference between private and public settings and behavior? The difference between an acquaintance and a friend? Additional Communication Tips o Some individuals with ASD interpret language very concretely and can have trouble detecting sarcasm or humor. Partners for Youth with Disabilities 617-556-4075 www.pyd.org o o o o o Be aware that concrete thinking leads to behavioral responses based on the interpretation of language. What appears to be inappropriate behavior may actually be a very appropriate response, based on literal interpretation of what is said. Some individuals may have trouble with prosody (the pattern of how stress and intonation is used in language). As a result, they may find it very hard to both interpret and express subtle meanings. Use simple and explicit communication. Give short and explicit directions, and do not use excess verbiage. Give youth time to process information and periods of quiet times. If problem arises during outing, go to a quiet place to decompress Avoid triggers that make your mentee uncomfortable or upset. o o Triggers are things that set a child off and may lead to negative behaviors. They can be caused by many things, but with youth with ASD, they may commonly be: Under- or over-stimulation of the senses. (e.g. bright lights, loud noises, etc.) Unexpected changes (e.g. plan changes, late trains, people being late) The family of the youth will be your best resource. They can tell you more about your mentee’s needs and abilities. Mentors should discuss with the family about any potential triggers, as well as how to best redirect repetitive behaviors and reinforce desired behaviors. Resources: Online Resources: 1. Center for Disease Control: Autism Spectrum Disorders http://www.cdc.gov/ncbddd/autism/facts.html 2. National Institute for Mental Health: What is Autism Spectrum Disorder? http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml 3. DSM-5 Fact Sheet on Autism Spectrum Disorders http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf 4. Autism Spectrum Disorders (n.d.). http://www.nichd.nih.gov/health/topics/asd.cfm 5. National Dissemination Center for Children with Disabilities. http://www.nichcy.org/ 6. Working with Restrictive and Repetitive Interests. http://education.jhu.edu/PD/newhorizons/Exceptional%20Learners/Autism/Articles/index.html Print Resources: 1. Barbour, A; Koneya, M. (1976). Louder than words: nonverbal communication. Columbus, OH : Merrill. 2. Fouse, B. A; Wheeler, M. (1997). A Treasure Chest of Behavioral Strategies for Individuals with Autism. Arlington, TX: Future Horizons Inc. Partners for Youth with Disabilities 617-556-4075 www.pyd.org