1. understanding
in your community

2. understanding
in your community
About Autism

3. Characteristics of Autism
A person with autism has challenges in 3 areas:
difficulty interacting with others
difficulty communicating
restricted or repetitive behavior or interests 3

4. Common Behaviors A person with autism may…
not respond when name is called (may seem deaf)
not share enjoyment
have repetitive, self-stimulatory or “stimming” behaviors (e.g. hand flapping, spinning, rocking, screaming, humming, etc.)
have difficulty shifting from one activity to another
get upset with a change in routine
over-react to things
act unexpectedly 4 4

5. Difficulty Communicating
A person with autism may…
have poor eye contact
have difficulty expressing him or herself or have no language (non-verbal)
use physical contact to get needs met
not use gestures such as pointing, nodding yes, shaking head no
have difficulty following directions
express themselves by crying or screaming
repeat something that was heard earlier
be unable to identify common objects 5 5

6. Difficulty with Social Interactions
A person with autism may…
not use an item appropriately
have trouble modifying activities
go to an isolated area by him or herself
not let others take part in what they are doing
have difficulty waiting patiently 6

7. What causes autism ?
There is no single cause of autism Genetics, environmental factors, and their interaction are currently being studied
Comprehensive research into the causes, prevention and treatments is ongoing

8. Autism is Not Contagious
A person cannot “catch” autism by interacting with someone who has the disorder

9. Autism is a spectrum. Every person is different.
Types of Autism
Autism is a spectrum. Every person is different.
Autism Disorder
Childhood Disintegrative Disorder
Asperger’s Syndrome
Rhett’s Disorder
Pervasive Developmental Disorder - Not Otherwise Specified (NOS) 9

10. General Information Autism is a lifelong disorder
Effects can be reduced through education and intervention
Early diagnosis and appropriate intervention is important

11. Autism Statistics
Approximately 1 out of 100 people in the U.S. population is diagnosed with autism
In New Jersey, the prevalence of autism is 1 in 94 people
Prevalence is 1 in 64 boys in New Jersey
Autism occurs within every community, geographic location, race, religion, creed, color, and social status 11

12. Why the increase ? Clinicians may be better skilled at diagnosing
There may be a more extensive definition: Before, people may have been diagnosed with an intellectual disability OR Higher functioning people may have been viewed as eccentric, without a formal diagnosis
There may be an actual increase in incidence due to unknown factors

13. An Invisible Disability
Often no outward physical characteristics or prosthetics identify a person with autism Mannerisms and interactions may be misinterpreted or misunderstood Onlookers may make assumptions and be critical of odd or unruly behaviors

14. Facts… Not Fiction.
Not all people with autism act the same way. Each person has unique strengths and challenges.
People with autism have feelings. Each person displays them differently.
Because they feel bound by social rules, individuals will not fabricate stories.
Most people with autism don’t realize they are interrupting or monopolizing conversations. Social cues are unfamiliar.
When speaking, a person with autism lacks the understanding of appropriateness, sensitivity, or importance. Comments may be blunt.
Most people with autism are not savants. While many have focused interests, skill level may not be high.
People with autism are able to learn. Methods and pace of instruction may need to be modified. 14

15. Frustration and Attention
If a person with autism shows signs of aggression, most often it is a result of frustration or a need for attention
The person may not have the skills to express him/herself appropriately 15

16. When Harmful Behaviors Happen
Ask the caretaker to help
If a person is injuring him/herself, another person, or damaging physical property, call security or dial 911
In emergency situations take care to protect people with the support of the caretaker as you await help
Provide adequate space Avoid standing too close

17. Interaction and Communication
understanding
in your community
Interaction and Communication

18. A Person has Autism
When talking to or writing about someone with autism, use person-first language
a person on the spectrum
people with autism
a boy with Asperger’s Syndrome
an individual with special needs
a family member with Rett Syndrome 18

19. Approaching a Person with Autism
Approach the person in a calm and friendly manner.
Start a simple social conversation using questions like: “I like your cool shoes.” “What’s your name?” “Where do you live?” “What do you like to do for fun?”
Serve as a positive model. Others will notice your demeanor and interact in the same way.
If the person seems to be agitated, redirecting the activity or asking a simple question may help.

20. Social Interactions
Typically, people on the spectrum do not learn social rules through experience
Social behaviors are taught in both the academic and community environments
eating etiquette
community social rules
bathroom etiquette
waiting in lines
turn taking
privacy
personal boundaries
social language
dress code
regard for authority
People with autism often have challenges with common social experiences. 20

21. Common Mannerisms You may notice a person with autism…
continued
You may notice a person with autism…
matching objects
switching lights on and off
dropping things repetitively
jumping
rocking
hand-flapping
flicking objects
spinning or running in circles
clapping
head-banging
tearing paper
spinning objects
Most mannerisms are harmless and can be ignored

22. Let’s Talk !
Talk directly to the person, not a family member or caretaker
Listen carefully to understand the real meaning
Don’t speak too forcefully or loudly
Don’t use slang, sarcasm, or complex language
Try to keep the conversation on topic
Pause between statements to allow for processing Allow sufficient time for them to respond
Using pictures helps understanding 22 22

23. Alternative Forms of Communication
Some people with autism communicate in ways other than speech Here are some examples:
gestures
sign language
sounds
objects
photographs / pictures / symbols
voice output devices
computerized and technological devices
writing
physical contact 23

24. understanding
in your community
Inclusion

25. “We need to know there’s a place for us, not just a space for us.”
Source: HM Government Valuing People Now

26. People on the spectrum have different interests and hobbies
Many of these interests have related organizations that meet socially (e.g. art, chess, book, movie clubs, etc.) Participation should be encouraged for all people – with and without disabilities

27. Accessibility vs. Inclusion
Accessibility: Physical Access
Refers to removing environmental barriers so that a person with a disability can participate and have choices. Physical access is only the beginning.
Inclusion: Understanding and Acceptance
Every person should have welcoming, meaningful and purposeful opportunities to participate in all facets of the community.
Communities offer a forum to build relationships from which people learn from and support one another and make an impact in the community as a whole 27

28. Expectations A person with autism and their family should expect…
a professional and knowledgeable staff
courteous and welcoming staff
an invitation to be part of the decision-making process
the opportunity to participate in every… program, use every facility, register for every child care agency, and use every business in town
John McGovern, JD President, Recreation Accessibility Consultants
Adapted from the National Center on Accessibility and National Center on Physical Activity and Disability monograph: Recreation Access Rights Under the ADA ( )

29. The Americans with Disabilities Act
Prohibits discrimination against Americans with physical and mental disabilities in such areas as employment, public accommodations, and transportation
Prohibits job discrimination against individuals with disabilities who, with or without a reasonable accommodation, can perform a job's essential functions
Includes provisions requiring agencies to make public transportation and other public services accessible to individuals with disabilities
Bars discrimination in a wide range of public accommodations, including hotels, restaurants, museums, schools, and sports arenas
Civil Rights 29 29

30. Some Tips
Be patient, flexible, and realistic. Accept and respect all participants as they are.
Learn a person’s interests and offer opportunities for sharing.
Be patient, allowing the person time to complete each part of an activity.
When offering help, first ask what help is needed. Offer encouragement and acceptance.
Activities can be modified respectfully, in an age-appropriate manner.
Loud noises, bright lights and other triggers may be over-stimulating.
Protect and respect privacy and confidentiality. 30 30

31. Offer an invitation to…
join a group, class or social activity
sit next to you at a function or event
volunteer in a project or recreational activity
participate, not just observe

32. Inclusive Recreation A person with autism has the right to…
get an assessment to determine needs and interests
a plan developed by staff with you to meet those needs
participate alongside people without disabilities
participation with supports (e.g. extra staff, rules changes, adaptive equipment, and more)
participation at the same fee charged people without disabilities
John McGovern, JD President, Recreation Accessibility Consultants
Adapted from the National Center on Accessibility and National Center on Physical Activity and Disability monograph: Recreation Access Rights Under the ADA ( )

33. At Play
Physical, social and sensory demands of playgrounds can be overwhelming and frustrating for people with autism Inclusive play is important because children of all abilities come together to interact and support each other Encourage and support acceptance and positive interaction during play

34. Entertainment Venues, Theaters, Amusements, and Sports Arenas
A person with autism, caretaker or family member may need to make specific requests based on needs. Be careful not to challenge or criticize.
Some individuals choose to disclose the diagnosis, others do not. This is a personal choice. Respect privacy. 34

35. Library Services
A library serves the needs of all people – with and without disabilities 35

36. About Friends and Families
understanding
in your community
About Friends and Families

37. The Impact on Family Life
Harder to get things done because of excess demands
Strains on marriage and personal relationships
Increased demands on family members
Minimal respite options; burnout and or depression can result
Strains and changes to employment of parent or caretaker
Increased financial burdens from issues relating to employment, therapies, medical bills, etc. 37

38. The Impact on Family Life
continued
Affects self esteem as a result of criticism, exclusion, etc.
Changes in social opportunities (perceived and actual)
Change in priorities
Decreased recreation and leisure activities (limited options and time)
concerns for future care giving
… and more 38

39. Families Talk
“ My son has taken a stranger’s food right off his plate. What could I possibly say… to apologize? ”
“ I don't know the last time I've actually seen the end of the movie because of the crowds, sounds, and lights. It just gets too difficult and we have to leave. ”
“ When we go to the supermarket, so many people roll their eyes and start whispering. When we have to stand in a long line, she starts making noises and grabbing stuff. So now I just avoid taking her in public.”
“ Simple situations like haircuts, grocery shopping and community gatherings are not so simple at all.”
“ I don’t want sympathy or pity like, ‘Oh, I’m so sorry.’ What I do need is for people to be patient, kind, and understanding.”
Anonymous Quotes 39

40. Faith Communities
Many families turn to religious congregations for support and acceptance
Congregations will experience personal benefits as a result of inclusion
Help organize and sustain supports and services to meet individual spiritual needs 40

41. Friendships
Harassment and bullying usually happens as a result of not understanding the reasons for the differences By understanding that many behaviors and habits are not by choice, people are more likely to be accepting With increased knowledge, people will be more open to interactions and developing friendships
Adapted from: Autism Awareness at School,

42. Care Providers
Having trained and caring community care providers is important to the quality of life of many families
ADA mandates apply to daycare, school programs, and other businesses
Supportive training is available for providers

43. About Children and Teens
understanding
in your community
About Children and Teens

44. Academic Options
“The Individuals with Disabilities Education Improvement Act (IDEIA) is a federal mandate that guarantees students with disabilities a free, appropriate public education.”
Autism Society of America
Educational Options:
Mainstreamed in a public school setting
Placed in a specialized private school
Participating in a home school program
Provided with various therapies to support the academic program

45. Social Skills
Teaching functional social skills like going to the movies, going out to eat, and going shopping can be done through visual aids, schedules, role playing, and actual experiences
Social skills are taught through academic lessons and community interactions
Inherent social skills like facial expressions, suitable language, body language, team work, and friendship are difficult to understand
Appropriate social expectations vary by culture, geographic location, age, gender, etc.

46. Teenagers with Autism Teens with autism are…
more socially inexperienced than others their age
affected by puberty in various ways
more likely to be rejected and bullied by their peers
troubled to understand common social situations
confused and stressed, often leading to run away from play, school, or work activities
Source -

47. understanding
in your community
About Adults

48. Recognizing Potential
“Some adults with autism argue that they are disabled more by the view society holds of them than by autism itself.”
Isa Marrs:

49. Capabilities
Generally, higher-functioning individuals with autism can work, care, and support themselves in many ways
Many adults with autism can function as contributing members in their communities
There are adults with college degrees, that are entrepreneurial, and are resourceful. There are others that are employed with simple, yet purposeful jobs
Many people with autism are taught how to pay bills, cook, and other independent life skills 49

50. Functional Supports
“Employment supports are services, benefits, policies, tools and equipment that make it possible for us get to work and do our jobs. We may not consider things like transportation, child care, access to health care, technology, and flexible work schedules as ‘supports,’ but for many Americans they can mean the difference between working and not working.”
United States Department of Labor Office of Disability Employment Policy: Workforce. Opportunity. Leadership.

51. Community Service versus Paid Employment
Many people with autism have functional skills
If a person can work, they can also serve as volunteers…
if they choose
VOLUNTEERING
Community organizations should realize the desire of many people with developmental disabilities to participate in the community in a meaningful way
EMPLOYMENT
By law, businesses are required to pay all people fair and equal pay to perform the same job

52. understanding
in your community
Autism and Safety

53. Safety Concerns A person with autism may …
misinterpret words, gestures, and symbols
have difficulty relating appropriately with people of authority
have trouble understanding disorderly or disruptive situations
not understand safety-related issues

54. Potential Dangers
Lacking the fear of real danger, many people with autism can find themselves in potentially harmful environments.
For example, a person may not know that an oncoming vehicle can injure or that a fire can burn. The person may be attracted to the movement, bright lights, or heat. These factors or the commotion may cause a person to scream, run away or act unpredictably.

55. Understanding Safety Issues
A person with autism may …
be unaware or unresponsive to people and warnings
be unable to express distress or warn of danger
have a tendency to wander and may not know where they are or that he/she is lost
not understand the context of the word or hand gesture for safety commands like “STOP!” or “LOOK OUT!”
be attracted to certain unsafe objects that spin, move quickly, or have repetitive movement
seem unaware of pain, heat, or cold
try to hide in places that are insecure or unsafe
act or behave inappropriately when confused by a situation

56. Water Dangers Many people with autism are attracted to water
swimming pools and spas (home, neighbor, public, hotel/resort, etc.)
rivers, ponds, lakes, beaches, reservoirs
sewer treatment facilities
Pool operators need to ensure sufficient number of lifeguards for the size of the pool and the types of programs
Event organizers need to assess abilities and challenges of all participants in and around areas with water
Pool areas must be equipped with protective fences (as mandated by law) and locked at all times
Special attention should be made during social gatherings surrounding water

57. Challenges for First Responders
Communication
Individuals may struggle when approached
Problems with rescue
forced entry due to locks (inside and out)
barred or nailed windows
fences with locked gates
“personal safe place” may be in danger
risk of running away

58. Safety Alert
Traffic control devices are placed on the roadway to heighten a driver’s awareness
Even under a parent or caretaker's protective guard, a person with autism may inadvertently or unexpectedly place himself in a harmful situation or dangerous location.

59. Helping a Lost, Missing or Vulnerable Person
Many people with autism carry or wear identification to provide helpful information
autism alert cards / decals
medical ID bracelets or necklaces
voice IDs
iron-on garment labels
… and others

60. Helping a Lost, Missing or Vulnerable Person
continued
Do not touch or attempt to restrain the person
Ask basic informative questions (e.g. “What’s you name?”, “Where do you live?”, “What help do you need?”, “Where are you hurt?)
“Yes/No” questions may not provide the information you need to help (Avoid questions such as “Are you lost?”, “Do you need help?, “Are you hurt?”)
Call the police department to notify them of a lost, missing, disoriented, or hurt person

61. understanding
in your community
Autism Resources

62. Children’s Specialized Hospital
Autism Resources
Autism Speaks
Autism New Jersey
Children’s Specialized Hospital 62 62

63. © 2009 Children’s Specialized Hospital
Make
Friends
with
Autism
For more information about this initiative, call CHILDREN Extension 2481
This program is made possible by the Kohl’s KidsAbilities program at Children’s Specialized Hospital through the generosity of Kohl’s Cares
© 2009 Children’s Specialized Hospital