Serving individuals and their families
BEST PRACTICES
FOR BUSINESSES
autism
the 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
• All communities have people with autism
• You may not be aware of people with autism in the
community but they are potential customers
Autism occurs in every community,
in every geographic location, race, religion,
creed, color, and social status.
the statistics
continued
• Fastest-growing developmental disability
• 10 - 17 % annual growth
• Growth comparison during the 1990s:
– U.S. population increase: 13%
– Disabilities increase: 16%
– Autism increase: 172%
* Source: Autism Society of America
the impact
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.
impact on family life
continued
May hurt 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.’
is for people to be patient, kind, and understanding.”
What I do need
Anonymous Quotes
societal impact
Autism Spectrum Disorder
affects many facets of the community
• education
• recreation
• residential options
• self advocacy
• family relationships
• healthcare / wellness
• day care
• employment / vocations
• life planning / management
the disorder
the autism spectrum
Autism is a spectrum. Each person is different.
Autism Disorder
Childhood Disintegrative Disorder
Asperger’s Syndrome
Rett Syndrome
Pervasive Developmental Disorder Not Otherwise Specified (NOS)
What is autism?
A person with autism has challenges in 3 areas:
• difficulty interacting with others
may have reduced interest in other people, poor eye contact
• difficulty communicating
delayed or no speech, may echo words or expressions
• restricted or repetitive behavior or interests
unusual interests, rituals, hand-flapping
understanding the spectrum
There is a wide-range of skills possible with autism
Some people with autism have an excellent vocabulary and high IQ,
but limited conversational and social skills, and restricted interests.
Others may be nonverbal with a very low IQ.
Not all people with delayed language
or behavior issues have autism
common behaviors
• 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
communication challenges
• 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
social challenges
• may have trouble modifying activities
• may prefer to isolate self rather than
be around others
• may not let others join play
• may have difficulty waiting patiently
social interactions
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 (social hierarchies)
Typically, people on the spectrum do not learn social rules through
observation. Social behavior must be taught directly.
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 of rigid thinking, they may be less likely to lie.
• Due to difficulty recognizing social cues, they may not recognize
when they are interrupting or monopolizing conversations or
being overly 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.
taming the “fear” of autism
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 or herself appropriately
Behavior can be improved by
replacing triggers and teaching skills.
managing difficulties
• Approach the customer who is having difficulties
Courteously observe the situation and ask simple questions to identify
any environmental causes for the challenges. Offer assistance that is
helpful and comforting.
• Engage in calm, undemanding social conversation
Predictable conversations can help to focus and reduce anxiety
(e.g. “I like your cool shoes.” “What’s your name?”
“Where do you live?” “What is your favorite food?”)
• If a situation or task seems to be causing the behavior,
calmly and slowly redirect attention to another place or
activity.
• Attend to other customers who appear anxious
Without passing judgment or personal comments, discreetly offer
to relocate them.
concerns with safety and
disruption
A business operator should intervene
when behaviors are…
• embarrassing for the individual or family
• stigmatizing to the person
• disrupting core business operations
• tantrumming is injurious to self or others
• destructing property
• offensive interactions with customers and/or employees
• inappropriately sexual in nature
harmful behaviors
• Ask the caretaker to help
• If a person is injuring him/herself,
another person, or damaging
physical property, call security
or dial 911
• Protect those who are in harm
as you await help
• Provide adequate space
Avoid standing too close
marketing
People with autism
have interests, talents,
skills, and needs
identifying needs
Families know best what they want and need
Products and services can meet
(or be developed to meet) those needs
Businesses should partner with families,
rather than making assumptions
“Nothing about us, without us!”
Ari Ne’eman, President, The Autistic Self Advocacy Network
an underserved market segment
People with various types of disabilities “represent purchasing power
that continues to grow as they participate more actively in society.
When they attend an event, their parents and friends often do so
as well, which increases the number of visitors to a site. However,
due to a deplorable lack of information, people with disabilities
still run up against closed doors every day.”
José Malo, Access Ability
• People with autism have the same fundamental / functional needs
as customers without disabilities
• All consumers look for quality products and services that meet
their needs, are reliable, and competitively priced
• As the needs of this underserved market are met, these customers
become loyal users and advertisers for the businesses they prefer
avoiding the issue?
Most mainstream businesses have not focused
on building relationships with people and families
challenged with developmental disabilities
• may disregard this market concerned they would offend or
act inappropriately
• may mistakenly assume that including this population would
“classify” their business or reduce their prominence
• local marketing avoided due to…
– uncomfortable topic
– unsure of approach
– unaware of significance of market presence
– assume this population is not interested
– lack of awareness/sensitivity
marketing considerations
Limited business-related information about autism
As a result, many companies may have been insensitive to
consumers and employees with the disorder
This population looks for businesses that make good-hearted
efforts toward meeting their needs
When targeting your mainstream market, consider the
additional needs of this underserved market segment.
As a result, you may find an additional niche for your business.
approachability
Community businesses and organizations become stronger
and more vital when they welcome and include all members
of the community
A business’ Welcome Statement makes an important first
and lasting impression to customers
• Have a written policy statement welcoming patrons
with disabilities
• Prominently display your welcome statement and
print it in business and marketing materials
• Provide information on ways of adapting services,
programs, and venues
the welcome statement
Sample Welcome Statement
__________ is committed to diversity and ensuring that all customers
and employees are treated equitably, free from discrimination. We
work to make our facilities accessible to all patrons. We strive to
provide a welcome environment and offer the necessary services
•andHave
a written
policy
welcoming
resources
to meet
thestatement
individual needs
of our patrons
customers.
with disabilities.
__________ is dedicated to our responsibility to attract, assist, and
•employ
Place
welcome
statement
in business
andbymarketing
qualified
individuals,
regardless
of disability,
supporting
materials.
skills, interests, and talents which will foster the community.
For
•information
Provideand
information
of adapting
services,
assistance on
on ways
accessibility
and inclusion,
contact
programs, and venues.
___________.
marketing communications
• Inclusion of this market segment needs to be supported
at all levels of the organization
• Clear communication begins at the management level
through front-end operations
• Integrate traditional
marketing messages that
include people with autism
• Avoid communication that
separates, disrespects, or
demeans this or any other
population
marketing communications
continued
• Distribute communications to area agencies that
serve people with developmental disabilities
• Send press releases and announcements to media
that target people with disabilities
• Create marketing materials that
point out accessibility and
inclusion. Provide a contact
to receive requests for
special needs
appropriate terminology
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
inclusion
civil rights – ADA law
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
accessibility and inclusion –
the difference
Accessibility:
Physical Approach/Architecture
Refers to removing environmental barriers so that a person with a
disability can participate and have choices. Physical access is only
the beginning.
Inclusion: Knowledge/Understanding/Acceptance/Adaptation
Offering welcoming, meaningful and purposeful opportunities to
participate in all facets of community life is the goal.
Businesses need to offer the best example
of understanding, willingness to interact,
and valuing participation.
plan for inclusion
Help families prepare for an experience
Offer back-up plans for “the unexpected”
Help families offer
positive and meaningful
reinforcements for
successes –
No matter how small !
Have realistic expectations.
Meet each person at
his/her ability level.
Work with families to use
visual activity schedules
for planned activities.
Activity Schedules
Activity schedules teach skills by using a set of
images and/or written words. Community schedules
can be used to help a person understand the order
of activities. Some community schedules can include:
•
•
•
•
going to the mall
going to a restaurant
going to the supermarket
going to the movies
•
•
•
•
getting a haircut
wearing a seat belt
playing a game
using a public bathroom
“If I can’t picture it, I can’t understand it.”
Albert Einstein
plan for inclusion
Develop/use Social Stories
to increase understanding
and comfort level
- provides information about
a place, activity or situation
- specifies appropriate social
cues and expectations
- explains the order of events
or layout of a location
- helps give appropriate
responses to situations
continued
inclusion strategies
• Recognize each person’s
challenges and abilities
• Provide appropriate modifications
• “Special” programs are appropriate
but should not take the place of
inclusive approaches
“With appropriate resources, sensitivity, and support,
community organizations can include individuals with disabilities
as regular and active participants without the need
to create separate and specialized programs.”
Coalition for Inclusive Communities
inclusion strategies
continued
Inclusion does not need to cost more money
Often it requires only basic adaptations and accommodations
–
–
–
–
–
–
–
slower pace
adjusted rules
altered lighting, sounds, movement
simplified, direct instruction, activities, handouts
use of photographs and other learning tools
understanding and flexibility
being open and prepared for the need to “escape”
and/or return as needed
focus on the family
• assume or presume
• pass judgment
• ask a family to participate
separately
Families with autism are passionate about being
accepted within their community.
special accommodations
• People with autism may need
private, personal assistance
of a parent or caretaker during
their outing
• Support accommodations for family
restrooms, fitting rooms and locker
rooms at your facility
• Post signs that clearly
indicate who to contact for these
types of accommodations
encourage participation
• Value the dignity of each individual
Maintain the respect of all participants.
• Break tasks into small parts. Avoid
multi-step directions. Be patient and
allow person time to complete each task.
• Offer ways to signal when a break, or
help is needed.
• Clearly define boundaries (circles of
intimacy).
• Provide signals or cues to prepare for
transitions in schedules, events, and
locations.
• Use respectful and age-appropriate
ways to modify activities.
encourage participation
continued
• When offering help, first ask what help is
needed. Promote independence by fading
your assistance.
• Environments that are over-stimulating
present additional challenges.
• Encourage activities for family interaction
that relieve dependence on the other
members. This helps create a positive
experience for all.
• Learn a person’s interests and provide
opportunities for involvement and sharing.
paving the way
“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.
moving forward…
• Show your compliance with the mandates
of the U.S. Americans with Disabilities Act (ADA)
– Demonstrates business accessibility and inclusion of all
people, regardless of their abilities or disabilities
– Presents a friendly, understanding, and welcome message
to all consumers
• Assess how your marketing strategy illustrates
your business commitment to reaching people
with developmental disabilities
• Research the specific local needs of families
experiencing autism within service industries
moving forward…
continued
• Consider distinctive selling strategies for products
or services to reach this niche market
• Attend to this growing population in promotional
events and awareness campaigns
social networks
• People with autism and their families
look for “safe” places to interact
• They want to participate free of
criticism or judgment
• Businesses can create inclusive
social settings
• Families will want to share their
positive experiences with others
recreation and leisure
Recreation providers have a role to
help people with and without disabilities…
• become valued and active through communitybased leisure activities
• develop meaningful and supportive relationships
• overcome physical and attitudinal barriers that
deter participation
recreation and the law
The Americans with Disabilities Act (ADA)
• Right to the Most Integrated Setting
• Right to Participate
• Right to Reasonable Accommodations
• Right to Adaptive Equipment
• Right to an Assessment or Evaluation
• Disparate Impact
(policies cannot have a greater impact on
people with disabilities than on people without disabilities.)
• Fees
(no higher fee or surcharge for the cost of
accommodations
or for providing the most integrated setting.)
welcoming participants
Sample Recreation Welcome Statement
__________ is committed to inclusion and accessibility for individuals
with disabilities and strives to provide equal, integrated participation in all
programs, activities and services. __________ ’s policy is to reasonably
accommodate all program applications in accordance with the Americans
with Disabilities Act (ADA). We welcome persons with special needs in our
programs. __________ is committed to providing quality recreation and
leisure opportunities for everyone. We encourage those with special needs
to participate in our programs and to make us aware of what we can do to
make your experience with us the best it can be.
entertainment venues, theaters
and sports arenas
• Guest services staff should be knowledgeable and sensitive
to people with autism and their families.
• A person with autism, caretaker or family member may need
to make specific requests based on needs. Be careful not to
challenge or criticize the request.
• Some individuals choose to disclose the diagnosis, others do
not. This is a personal choice. Respect privacy.
• Be flexible (e.g. waiting on long lines, entry with
food, special seating, etc.).
entertainment venues, theaters
and sports arenas
Written material may help people with autism
prepare for the outing
Information may include:
• available products and services
• background information about the event
• disability accommodations
• “escape routes”
• expected audience participation
• general timeframes
• order of activities
• overall facility layout (bathrooms, exits, customer service, etc.)
• rules
• sensory input (intensity of volume, lights, movement, etc.)
• what to expect (plan of activities)
library services
A library serves informational, literary, and recreation needs
People expect it to be a welcoming environment
for all community members
www.thejointlibrary.org/autism
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
interacting
personal interactions
• 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
distractions
• Limit environmental distractions
– loud, unexpected, unnecessary
sounds/noises
– visual challenges (bright
lighting, complex layouts,
numerous colors, excessive
wording, etc.)
– sudden transitions
– unnecessary interactions,
movements, changes in a
physical arrangement or
a schedule
alternative communication
Some people with autism use
alternate forms of communication
Here are some examples:
• gestures
• sign language
• sounds
• objects
• photographs / pictures / symbols
• voice output devices
• computerized and technological devices
• writing
• physical contact
approaches
win–win approaches
Be flexible
Have a family-centered approach – discourage criticism,
judgment, exclusion
Ensure front-end employees are understanding and
compassionate
Make personal connections
Offer inclusive and adapted programs and events
Offer respite or childcare opportunities
Build life-long relationships, creating potential vocational
opportunities
pre-vocational skills
Offer pre-vocational activities to teach functional,
employable skills
Task level may start at a basic level, gradually
increasing the level of difficulty and independence
Partnerships can be made with schools, therapeutic
providers, and others as needed
functional skill sets
• categorizing
• collating
• copying
• data entry
• folding
• following a sample
• handicrafts
• handling
• horticulture activities
• laundering
• machine operation
• making lists
• manipulation of objects
• matching
• money exchange
• number application
• packaging
• preparation
• printing
• quality control
• sequencing
• sewing
• simple assembly
• sorting
• stuffing
• weighing
employment/vocational options
• Offer collaborative programs with
school and/or governmental organizations
• Provide experiential learning opportunities
with families
• Offer resources for career education
• Provide on-the-job training
• Assist individuals with functional living skills
community service
vs. paid employment
Many people with autism have functional skills,
can work or volunteer
VOLUNTEERING
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
assistance
autism resources
Make Friends
with
Autism
For more information about this initiative, call 1-888-CHILDREN Extension 5343
www.makefriendswithautism.org
© 2009 Children’s Specialized Hospital