Understanding in your community. About Autism understanding in your community

understanding

in your community

About Autism About Autism

understandingunderstanding

in your communityin your community

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

• 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

A person with autism may…

Difficulty Communicating

• 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

• 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

Autism Disorder

Childhood Disintegrative Disorder

Asperger’s Syndrome

Pervasive Developmental Disorder - Not Otherwise Specified (NOS)

Rhett’s Disorder

Types of Autism

Autism is a spectrum. Every person is different.

General Information

• Autism is a lifelong disorder

• Effects can be reduced through education and intervention

• Early diagnosis and appropriate intervention is important

• 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

Autism Statistics

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

• 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 spaceAvoid standing too close

When Harmful Behaviors Happen

Interaction and CommunicationInteraction and Communication



• 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

When talking to or writing about someone with autism, use person-first language

A Person has Autism

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

• 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.

Typically, people on the spectrum do not learn social rules through experience

Social behaviors are taught in both the academic and community environments

Common Mannerisms

• 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

You may notice a person with autism…

Most mannerisms are harmless and can be ignored

continued

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

• gestures• sign language• sounds• objects• photographs / pictures / symbols• voice output devices• computerized and technological devices• writing• physical contact

Alternative Forms of Communication

Some people with autism communicate in ways other than speech

Here are some examples:

Inclusion Inclusion



“We need to know there’s a place for us, not just a space for us.”

Source: HM Government Valuing People Now

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

People on the spectrum have different interests and hobbies

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.

Accessibility vs. Inclusion

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 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

A person with autism and their family should expect…

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 )

• 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

The Americans with Disabilities Act

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

• 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

A person with autism has the right to…

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

About Friends and Families

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

• 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

continued

… 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

About Children and Teens

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.”

• 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

Autism Society of America

Educational Options:

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

• 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

Teens with autism are…

Source - http://www.autismsocialstories.com/autistic_teens/

About Adults 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

VOLUNTEERINGCommunity organizations should realize the desire of many people with developmental disabilities to participate in the community in a meaningful way

EMPLOYMENTBy law, businesses are required to pay all people fair and equal pay to perform the same job

Autism and Safety Autism and Safety



Safety Concerns

• 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

A person with autism may …

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 oncomingvehicle can injure or that a fire can burn. The personmay be attracted to the movement, bright lights, orheat. These factors or the commotion may cause a person to scream, run away or act unpredictably.

Understanding Safety Issues

• 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

A person with autism may …

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

Water Dangers

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

• autism alert cards / decals

• medical ID bracelets or necklaces

• voice IDs

• iron-on garment labels

Many people with autism carry or wear identification to provide helpful information

… 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

Autism ResourcesAutism Resources



Autism Resources

Autism Speaks

Autism New Jersey

Children’s

Specialized

Hospital

MakeMake FriendsFriendswithwith AutismAutism

www.makefriendswithautism.orgFor more information about this initiative, call 1-888-CHILDREN Extension 2481

© 2009 Children’s Specialized Hospital

This program is made possible by the Kohl’s KidsAbilities program

at Children’s Specialized Hospital through the generosity of Kohl’s Cares

Documents

Understanding in your community. About Autism understanding in your community