OVERVIEW OF AUTISM SPECTRUM DISORDERS

1. OVERVIEW OF AUTISM SPECTRUM DISORDERS Created by Autism New Jersey, 2009

2. For reprint permission, please contact 1.800.4AUTISM Autism New Jersey Formerly COSAC (The New Jersey Center for Outreach and Services for the Autism Community) A non-profit membership organization since 1965 Serving the entire state Provides information, support, and advocacy for both families and professionals How many have heard of COSAC?How many have heard of COSAC?

3. For reprint permission, please contact 1.800.4AUTISM Providing Information Helpline (1.800.4AUTISM) Website (www.autismnj.org) Referral lists of service providers Free parent trainings Professional development workshops Annual conference (October 8-10, 2009) When a parent receives the diagnosis of an autism spectrum disorder for their child, they often need someone to listen and a place to start in creating a plan and seeking treatment and services. There is a lot of conflicting information about autism, and we want to provide a framework of the most current, scientific, research-based findings to help them come the decisions that are right for their families. Professionals also need to be certain they’re providing the most effective treatment options for their students or clients, and they need to be well-trained in these methods..When a parent receives the diagnosis of an autism spectrum disorder for their child, they often need someone to listen and a place to start in creating a plan and seeking treatment and services. There is a lot of conflicting information about autism, and we want to provide a framework of the most current, scientific, research-based findings to help them come the decisions that are right for their families. Professionals also need to be certain they’re providing the most effective treatment options for their students or clients, and they need to be well-trained in these methods..

4. For reprint permission, please contact 1.800.4AUTISM Providing Support From the initial diagnosis through the lifespan Helpline Parent support groups Sibling pen pal program

5. For reprint permission, please contact 1.800.4AUTISM Providing Advocacy Educational rights New legislation First Responders Law Currently working on adult initiatives and insurance coverage

6. For reprint permission, please contact 1.800.4AUTISM What are Autism Spectrum Disorders? Neurobiological disorders that are evident in a person’s behavior Impaired social interaction, communication, and behavior Affect approximately 1 in 94 children in New Jersey 4-5 times more common in males Usually diagnosed in early childhood regardless of racial, ethnic, or socio-economic background We’re often asked why the numbers have risen so much lately. The numbers may have risen due to expanded criteria for diagnosis - Other developmental disorders like Asperger’s Disorder are now included in the data where they weren’t a few years ago. There is also greater awareness of autism and its characteristics by both parents and pediatricians, leading to earlier intervention and more diagnoses. regardless of racial, ethnic, or socio-economic background We’re often asked why the numbers have risen so much lately. The numbers may have risen due to expanded criteria for diagnosis - Other developmental disorders like Asperger’s Disorder are now included in the data where they weren’t a few years ago. There is also greater awareness of autism and its characteristics by both parents and pediatricians, leading to earlier intervention and more diagnoses.

7. For reprint permission, please contact 1.800.4AUTISM “Spectrum: A broad sequence or range of related qualities, ideas, or activities”1 Wide range of characteristics among different individuals as well as over one individual’s lifetime “When you have met an individual with autism, you have met one individual with autism.” (Stephen Shore, a person on the spectrum) 1 American Heritage Dictionary of the English Language, Fourth Edition, 2000. We’ll go through some examples on the next slide, but just keep in mind that there is a lot of variety within the three key areas of diagnosis (IQ, language, behaviors, etc.) They could also start on the “lower-functioning end of the spectrum” as a child but make great progress to where they don’t need much support as an adult. Each individual has to be looked at separately, and we need to be careful not to generalize about “all people with autism.” We’ll go through some examples on the next slide, but just keep in mind that there is a lot of variety within the three key areas of diagnosis (IQ, language, behaviors, etc.) They could also start on the “lower-functioning end of the spectrum” as a child but make great progress to where they don’t need much support as an adult. Each individual has to be looked at separately, and we need to be careful not to generalize about “all people with autism.”

8. For reprint permission, please contact 1.800.4AUTISM Difficulties in Social Interaction Many don’t spontaneously seek to share information or enjoyment Impaired understanding of nonverbal cues (body language, facial expressions, eye contact, gestures, etc.) Trouble with seeing other people’s perspectives Difficulty developing peer relationships I want to focus for a few minutes on the 3 main areas of impairment and give some examples to better illustrate them. Again, everyone is different, so not everyone on the spectrum will act in the way I’m describing, but I just want to make it a little clearer than just these descriptions. 1- Ethan’s mom said that unless he needed her help in getting something he wanted (a snack or toy on a high shelf, for example), a whole day could pass without him interacting with her. He would just entertain himself unless he needed her to provide something. Dustin sat in the middle of his crowded birthday party playing his Leapster, completely oblivious to all of the children playing loudly around him. 2- Many people on the spectrum don’t pick up on how close to stand when talking to you, recognize signs that you’re not interested, make eye contact to show they’re paying attention, etc. 3- Robbie always wanted to play Star Wars. He thought it was the best thing ever, and could not understand that other kids either didn’t like it, might be tired of always doing the same thing, or had a different interest. Different than a typically developing child who is just “spoiled”, he really didn’t understand that others might not share his opinion. Many individuals with autism are said to not have the “filter” that keeps most of us from saying something that would hurt someone’s feelings. When the principal (who was a very large bald man) was walking down the hall, Gabby announced, “He looks like a hippo!” She was not being sassy; she just was saying what she saw and had no idea that he would be hurt. 4- Jack could answer simple questions appropriately but couldn’t carry on a conversation. He usually would just repeat either “Hi Kate!” or “Kate, watch me!” over and over. He wanted to interact but didn’t have the social know-how to do it. I want to focus for a few minutes on the 3 main areas of impairment and give some examples to better illustrate them. Again, everyone is different, so not everyone on the spectrum will act in the way I’m describing, but I just want to make it a little clearer than just these descriptions. 1- Ethan’s mom said that unless he needed her help in getting something he wanted (a snack or toy on a high shelf, for example), a whole day could pass without him interacting with her. He would just entertain himself unless he needed her to provide something. Dustin sat in the middle of his crowded birthday party playing his Leapster, completely oblivious to all of the children playing loudly around him. 2- Many people on the spectrum don’t pick up on how close to stand when talking to you, recognize signs that you’re not interested, make eye contact to show they’re paying attention, etc. 3- Robbie always wanted to play Star Wars. He thought it was the best thing ever, and could not understand that other kids either didn’t like it, might be tired of always doing the same thing, or had a different interest. Different than a typically developing child who is just “spoiled”, he really didn’t understand that others might not share his opinion. Many individuals with autism are said to not have the “filter” that keeps most of us from saying something that would hurt someone’s feelings. When the principal (who was a very large bald man) was walking down the hall, Gabby announced, “He looks like a hippo!” She was not being sassy; she just was saying what she saw and had no idea that he would be hurt. 4- Jack could answer simple questions appropriately but couldn’t carry on a conversation. He usually would just repeat either “Hi Kate!” or “Kate, watch me!” over and over. He wanted to interact but didn’t have the social know-how to do it.

9. For reprint permission, please contact 1.800.4AUTISM Difficulties in Communication Delay in, or lack of, spoken language May instead use single words, picture exchange, sign language, or a voice output device Difficulty initiating or sustaining conversation Literal interpretation of language Unusual tone, pitch, and inflection Many individuals with autism do develop speech, but as we mentioned earlier, there is a huge range of language abilities across the spectrum. Some people have only a few simple words that get their needs across, or their vocabulary could be very extensive. Some may be “echolalic” where they repeat phrases they have heard, either immediately after they’re said or much later. Some have the correct words but are said to sound robotic. Examples: 1- Nicole didn’t say a word but could flip through several screens on her device to find the picture of what she wanted and then activate the machine to request it. Jamie did the same thing with her book of picture symbols (called PECS). 2- Tommy could answer simple questions like “Do you want --?” or “What’s this?” but not open-ended ones like “How was your vacation?” or “What do you think of your new baby brother?” 3- If Matthew heard you say it was raining cats and dogs, he would actually run to the window to see them. He was very upset at his teacher’s baby shower because he could not understand how the baby was going to take a shower at the party when he wasn’t even born yet. 4- Gabby phrased everything as a question and reversed her pronouns. When she fell down and got hurt, she said, “Are you okay?” instead of “I’m okay”. “Do you want chips?” meant “I want chips.” Many individuals with autism do develop speech, but as we mentioned earlier, there is a huge range of language abilities across the spectrum. Some people have only a few simple words that get their needs across, or their vocabulary could be very extensive. Some may be “echolalic” where they repeat phrases they have heard, either immediately after they’re said or much later. Some have the correct words but are said to sound robotic. Examples: 1- Nicole didn’t say a word but could flip through several screens on her device to find the picture of what she wanted and then activate the machine to request it. Jamie did the same thing with her book of picture symbols (called PECS). 2- Tommy could answer simple questions like “Do you want --?” or “What’s this?” but not open-ended ones like “How was your vacation?” or “What do you think of your new baby brother?” 3- If Matthew heard you say it was raining cats and dogs, he would actually run to the window to see them. He was very upset at his teacher’s baby shower because he could not understand how the baby was going to take a shower at the party when he wasn’t even born yet. 4- Gabby phrased everything as a question and reversed her pronouns. When she fell down and got hurt, she said, “Are you okay?” instead of “I’m okay”. “Do you want chips?” meant “I want chips.”

10. For reprint permission, please contact 1.800.4AUTISM Unusual Behaviors Preoccupation with certain interests Resistance to changes in routine Lack of creative play (focused on routine or parts of objects instead) Atypical reactions to sensory stimuli Seemingly odd, repetitive movements Examples: 1- Gabby loved the movie The Incredibles and excitedly talked about it (and nothing else) all the time. It interfered with her ability to have conversations or focus on her lessons or anything else. 2- Dustin got incredibly upset when his dad accidentally put him in his sister’s car seat instead of his own. Dad was tired after a late family event and thought it was no big deal so didn’t switch them back. Dustin screamed and cried the entire long ride home. He was supposed to be in HIS seat and he couldn’t just “get over it”. 3- Dustin lined up all his Thomas trains in the same order everyday instead of playing with them. Tommy preferred holding a toy truck and spinning its wheels rather than joining the other boys in driving or crashing the trucks on the pretend roads. 4- Tommy covered his ears when he turned on the water in the restroom or flushed the toilet. Ethan would stare at the glare coming off the laminated posters in the kindergarten room, rather than look at the fun items for show-and-tell. 5- Ethan flicked his fingers in front of his eyes, made a grimacing face and odd noises during any unstructured downtime. Examples: 1- Gabby loved the movie The Incredibles and excitedly talked about it (and nothing else) all the time. It interfered with her ability to have conversations or focus on her lessons or anything else. 2- Dustin got incredibly upset when his dad accidentally put him in his sister’s car seat instead of his own. Dad was tired after a late family event and thought it was no big deal so didn’t switch them back. Dustin screamed and cried the entire long ride home. He was supposed to be in HIS seat and he couldn’t just “get over it”. 3- Dustin lined up all his Thomas trains in the same order everyday instead of playing with them. Tommy preferred holding a toy truck and spinning its wheels rather than joining the other boys in driving or crashing the trucks on the pretend roads. 4- Tommy covered his ears when he turned on the water in the restroom or flushed the toilet. Ethan would stare at the glare coming off the laminated posters in the kindergarten room, rather than look at the fun items for show-and-tell. 5- Ethan flicked his fingers in front of his eyes, made a grimacing face and odd noises during any unstructured downtime.

11. For reprint permission, please contact 1.800.4AUTISM Variations in Autism