Serving individuals and their families BEST FOR PRACTICES

Serving individuals and their families BEST FOR PRACTICES 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 1990 s: – 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. ’ What I do need is for people to be patient, kind, and understanding. ” 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 • and Have a written policy statement welcoming patrons resources to meet the individual needs of our customers. with disabilities. _____ is dedicated to our responsibility to attract, assist, and • employ Place welcome statement in business and marketing qualified individuals, regardless of disability, by supporting materials. skills, interests, and talents which will foster the community. For • information Provide information on ways of adapting services, and assistance on 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/civilrights 101/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 t ’ n o D • 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 ’s Children d ze Speciali l Hospita aks pe Autism S ey Jers w e N m Autis

Make with Friends Autism For more information about this initiative, call 1 -888 -CHILDREN Extension 5343 www. makefriendswithautism. org © 2009 Children’s Specialized Hospital