understanding
in your community
understanding
in your community
About Autism
Characteristics of Autism
A person with autism
has challenges in 3 areas:
• difficulty interacting with others
• difficulty communicating
• restricted or repetitive behavior or interests
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
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
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
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
Autism is Not Contagious
A person cannot “catch” autism
by interacting with someone
who has the disorder
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)
General Information
• Autism is a lifelong disorder
• Effects can be reduced
through education and intervention
• Early diagnosis and appropriate
intervention is important
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
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
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
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.
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
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
understanding
in your community
Interaction and
Communication
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
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.
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
People with autism
often have challenges
with common
social experiences.
•
•
•
•
•
•
•
•
•
•
eating etiquette
community social rules
bathroom etiquette
waiting in lines
turn taking
privacy
personal boundaries
social language
dress code
regard for authority
Common Mannerisms
continued
You may notice a person with autism…
• matching objects
• flicking objects
• switching lights on and off
• spinning or running in circles
• dropping things repetitively
• clapping
• jumping
• head-banging
• rocking
• tearing paper
• hand-flapping
• spinning objects
Most mannerisms are harmless and can be ignored
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
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
understanding
in your community
Inclusion
“We need to know
there’s a place for us,
not just a space for us.”
Source: HM Government Valuing People Now
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
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
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
(http://www.ncaonline.org/index.php?q=node/742 )
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 101
www.civilrights.org/resources/civilrights101/disability.html
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.
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
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 (http://www.ncaonline.org/index.php?q=node/742 )
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
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.
Library Services
A library serves the needs of all people
– with and without disabilities
www.thejointlibrary.org/autism
understanding
in your community
About Friends
and Families
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.
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
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
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
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, www.autismclean.org
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
understanding
in your community
About Children
and Teens
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
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.
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 - http://www.autismsocialstories.com/autistic_teens/
understanding
in your community
About Adults
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: www.whereicanbeme.com/autism-contagious/
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
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.
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
understanding
in your community
Autism and Safety
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
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.
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
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
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
•http://www.autismlink.com/info/fire_rescue.php
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.
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
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
understanding
in your community
Autism Resources
Autism Resources
Make Friends
with
Autism
For more information about this initiative, call 1-888-CHILDREN Extension 2481
www.makefriendswithautism.org
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