Welcoming people with all needs and all abilities

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Welcoming people with all needs and all
abilities within the scope of our library
services.
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• Jill Harris, Ph.D.
• Meg Kolaya
• Linda Meyer, Ed.D., MPA
• Adrienne Robertiello
• Dan Weiss

April 23, 2008
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• I have autism.

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I am an individual. I am a person with a life
story. I am a lot like you.
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• What is autism?

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Pervasive Developmental Disorders
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Autism

• Autism was initially misdiagnosed and treated as
  a mental disease or a psychological disorder
  mistakenly thought be to be brought upon by
  cold parenting style, parental neglect or abuse.

Autism is a broad spectrum neurological disorder.
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Diagnosis

• Clinical observation based on criteria in the
  Diagnostic and Statistical Manual of Mental
  Disorders Fourth Edition (DSM-IV)
• The DSM-IV is used to diagnose all psychological
  and psychiatric disorders
• Menu-type format

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Demographics

• Approximately 1 out of 150 people in the U.S.
  population is diagnosed with autism.
• In New Jersey, prevalence of autism is 1 out of
  94.
• Our town is not excluded from this statistic.
• While we may not think we have seen individuals
  with autism in our library, it does not mean that
  they arent already customers.

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True or False ?
Autism

• Autism typically appears during the first three
  years of life.

True
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Autism
True or False ?

• Autism is four times more prevalent in boys than
  girls (4 1).

True
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Autism
True or False ?

• People with autism are not affectionate.

False
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Autism Facts

• A spectrum disorder can vary in presentation
  and severity.
• Lifelong disorder, but symptoms typically appear
  during first three years of life.
• Described and diagnosed behaviorally.
• Four times more common in males.
• Estimated to affect one person in 150(1 in 94 in
  New Jersey).

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More Autism Facts

• Found throughout the world, in every ethnic,
  religious and socio-economic group.
• No known environmental / psychological causes.
• Most have attentional problems.
• Some develop seizures.
• Approximately 2/3 test in the mentally retarded
  range.

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True or False ?
Autism

• The cause of autism is known.

False
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Signs of Autism

• difficulties with social interaction
• communication impairments
• repetitive, restricted or stereotyped behavior

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• What are the impairments?

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Impairments in Social Behavior

• non-verbal behavior
• May have poor eye contact. Limited gestures.
• peer relationships
• May not interact with peers.
• spontaneous sharing
• May not point out objects of interest.
• reciprocity
• May not tolerate hugs. Reduced interest in
  others ideas.

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Impairments in Communication

• comprehension
• May not understand simple questions, jokes,
  sarcasm.
• spoken language
• May lack or demonstrate delay in spoken
  language.
• voice
• May have monotone or have unusual pitch or
  rhythm.

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Impairments in Communication(continued)

• initiation
• May not initiate or sustain a conversation.
• idiosyncratic language
• May echo scripts or cartoons.
• social imitative play
• May not know how to play house.

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• What about learning skills?

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Learning Restrictive, Repetitive, and
Stereotyped Patterns of Behavior

• limited interests
• May only be interested in trains.
• ritualistic
• May line up objects in particular pattern and
  tantrum if pattern is upset.
• stereotypy
• May engage in hand flapping.
• over selectivity
• Preoccupied with parts of objects.

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Functions of Behavior

• Behavior is form of communication.
• Behavior may be communicating the need for
• attention
• escape from demands
• sensory stimulation
• tangible object (for example, toy)

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Tantrums. Why?

• Maybe the person wants attention because he or
  she is bored, hungry, tired, etc.
• Maybe the person wants to escape a task that is
  too hard.
• Maybe the person is feeling overwhelmed with a
  noisy environment and knows if he or she
  tantrums, they will be removed from the
  environment.
• Maybe the person wants an object or toy and will
  get the object when a tantrum occurs, to help
  calm down.

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Restricted Behavioral Repertoire

• May have preoccupations with

• chin-tapping
• head-banging
• clapping
• tearing paper
• breaking glass
• spinning things
• spinning oneself or running in circles
• colored and shiny objects

• matching objects
• blinking compulsively
• switching lights on and off
• dropping things repetitively
• jumping
• rocking
• hand-shaking
• flicking objects

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True or False ?
Autism

• Children with autism can demonstrate learned
  skills in one environment or with one instructor
  and fail to demonstrate these skills in other
  environments.

True
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Learning Characteristics of Autism

• attending to irrelevant stimuli
• failure to generalize

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Learning Stimuli

• Stimulus over selectivity

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The Nature of Things

• The Child Who Couldnt Play

DVD
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Sensory Input

• We might wiggle our foot during a meeting, or
  bite our lip it's serving some purpose we're
  not conscious of.
• Autistic people may flap their hands in front of
  their face or bang their arms against furniture.
  They don't learn socially acceptable ways of
  stimulating themselves the way the rest of us
  do.
• Irene Cook

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Variations in Autism
physical overactivity
difficulty mixing in with other people
no fear of real dangers
echolalic
inappropriate laughter
oversensitive to pain
spin objects
not cuddly
apparent insensitivity to noise
resist changes in routine
poor eye contact
inappropriate attachment to objects
uneven skill level across areas
oversensitive to noise
extreme passivity
sustained by odd play
apparent insensitivity to pain
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True or False ?
Autism

• There is a scientifically proven, effective
  treatment for autism.

True
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Applied Behavior Analysis (ABA)

• Applied Behavior Analysis is the science in which
  procedures derived from the principle of behavior
  are systematically applied to improve socially
  significant behavior to a meaningful degree and
  to demonstrate experimentally that the procedures
  employed were responsible for the improvement in
  behavior.
  
  Cooper, Heron, Heward, 2007

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Examples of Other Interventions ? ? ?
Scientific Support ? ? ?

• developmental approaches
• dietary approaches
• medications

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Interventions that Dont Work

• Auditory Integration
• Facilitative Communication
• Chelation

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Key Features of Effective Interventions

• continuously collect data on outcome/effectiveness
  
• include parent education and involvement
• focus on functional skills

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• What are the lifetime outcomes?

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Autism through the Life Span

• Autism is a lifelong disability, although a small
  percentage of children will lose their diagnostic
  label with intense early ABA intervention.
• Many persons show improvements in functioning
  over time.
• An individual with autism is expected to live a
  typical life span.
• Issues change over time with development
  (infancy, childhood, adolescence, adulthood).

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• What research is being done?

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Research for the Cause

• brain research
• genetic research
• hereditary factors

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Brain Research

• Gross anatomy of brain is the same.
• May have too many immature cells less
  pruning.
• Some differences may be seen in areas of the
  brain that regulate emotions.
• Are differences present from birth or
  degenerative?

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Genetic Research

• 10-15 of cases have a known genetic cause.
• Genetic cause may be new mutation, not
  inherited.
• Siblings have a 3-5 of also having autism, but
  a 10-20 of other, milder impairments.
• If an identical twin has autism, there is a 60
  chance that other twin is also autistic.
• If a fraternal twin has autism, there is no
  extra chance that other twin has autism.

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Environmental Research

• Some chemicals are known to cause brain damage
  (alcohol, valproic acid, etc).
• Lead levels were not higher for people with
  autism.
• No known toxin showing higher levels for people
  with autism.

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• What causes are possible?

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A Genetic Predisposition plus an Environmental
Trigger ?

• Unknown at this time.

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What Doesnt Cause Autism

• vaccines
• parenting styles

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• Why are we here?

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Barriers to Inclusion

• Parents of children with autism often avoid
  community interaction because of the childs
  inappropriate tendencies.
• There are often no outward physical
  characteristics or prosthetics signaling a
  person with autism as having a disorder.
• Onlookers might misunderstand the persons
  behavior and/or the caregivers reactions.

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Parental Goals for Children

• Be able to fit into society as best they can.
• Be as independent as possible, including having a
  stable living arrangement.
• Have friends (including the possibility of
  getting married).
• Hold a competitive job.
• Be happy.
• (Wagner, 2002)

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Parental Stress

• Research indicates that parents of children with
  autism experience greater stress than parents of
  children with other disabilities
• may be attributed to challenging behaviors in
  public.
• Holroyd McArthur (1976)
• Baker, Blancher, Crnic, Edelbrock (2002)

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• What does inclusion mean?

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Inclusion

• Individuals with developmental disabilities have
  the same experiences as neurotypical individuals.

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• Being in the communityis not the same as being
  part of the community.
• Bill Gaventa Sue Henshaw

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Community Inclusion

• Libraries as inclusion opportunities

• happening places
• connections with people, activities,and
  information
• offering services across the life span

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Strategies for Success

• Respect differences.
• Use person-first terminology.
• Greet all who enter.
• Talk to the individual.
• Be clear and concise.
• Use his or her name if you know it.

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Strategies for Success

• Assess communication style.
• verbal
• picture system
• augmentative / alternative system
• sign language

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Some children do not develop oral speech and/or
language. Augmentative and alternative
communication (AAC) attempts to provide an
alternative method(s) of communication.

• Picture Exchange Communication System (PECS)
• picture boards
• picture binders / wallets
• photographs
• sign language
• gestures

• single level limited messages
• BIG Mack
• multi-level many messages
• TechTalk / TechSpeak
• comprehensive system delivers multiple messages
  with rate enhancements, computer compatible
• Dynamyte / MT4 / MiniMo

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Special Needs Communication Guide
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Strategies for Success

• supplemental information presented with an
  instruction to increase the probability of a
  correct response
• Types
• gestural
• model
• verbal
• physical
• textual
• photographic

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Adapted Materials

• Materials should be simple.
• few words on a page
• pictures to explain them
• Use hands-on and meaningful activities.
• Use adapted books.
• Depend on social stories step-by-step activity
  descriptions with words and pictures.

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This Is My Library
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Strategies for Success

• Know your job.
• limit waiting time
• be organized
• Have a plan for possible incidents and
  emergencies.

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Strategies for Success

• Provide a continuum of Services.
• special sessions and activities
• opportunities for inclusion
• peer activities
• family activities
• sibling days / events / activities

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Strategies for Success

• Focus on relationship building.
• Understand the characteristics of the disability
  and relate them to the situation.
• Have realistic expectations (meet child where
  he/she is at).
• Ignore or intervene appropriately.
• Teach skills.
• Promote independence.
• Be reinforcing.

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Interactions

• Be concise (limit the amount of words you use to
  communicate with the person, while conveying your
  message).
• Speak more slowly and pause between spoken words
  and phrases, giving time to process information.
• Use gestures to accompany words to help
  understanding.
• Over-exaggerating facial expressions may help.
• Limit environmental noises, visual challenges,
  and distractions (bright lights, loud noises,
  crowds, etc.).

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Show Respect

• the way you talk with anyone else
• people-first language
• correct disability terms
• protecting privacy and confidentiality
• listening to the person
• providing opportunities for expression
• allowing the person to make choices
• having developmentally-appropriate expectations

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Show Respect

• When talking or writing about someone with
  autism, use people-first language.

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• How should we communicate?

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Communicating

• Dont be condescending.
• Talk to a person as a person talk to adults as
  adults.
• Be genuine and honest. People with autism have
  likes and dislikes, wants and needs, just like
  you do.

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Communicating

• Choose topics you think will interest the person.
• Be clear and concise.
• Talk with a person even though he or she may not
  be able to respond verbally.
• Speak directly to the person, not to a friend or
  companion.

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• We dont have anyone here.

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Protection

• The Individuals with Disabilities Education Act
  (IDEA) and the Americans with Disabilities Act
  (ADA) were passed specifically to ensure that
  people with disabilities have equal access to
  community life and facilities.

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• Although there has been some real progress
  toward making people aware of the needs of
  persons with disabilities, there are still many
  persons with disabilities who have been
  disenfranchised in society
• The challenge for us is to encourage and
  implement ways which fully integrate persons
  with disabilities and thus to bring wholeness to
  the entire community.
• 
  
  
  More than just Ramps

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• Individuals with autism need a source for
  interaction and for finding direction and support.

Many persons with autism would like to
participate in the life of the community in a
meaningful way.
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• We are challenged not only to accept, but also
  to help persons with autism, and view them as
  equal and valuable members of our community.
  

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Volunteers

• Dont exclude volunteers who have a disability.
  Determine what accommodations, if any, a
  volunteer needs.
• When speaking about people with disabilities,
  emphasize their achievements, abilities and
  individual qualities. Portray them as they are
  in real life as parents, employees, business
  owners, etc.

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Welcomea person with autism as you would a
personwithout a disability.
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Never underestimate or discount an individuals
capabilities or offerings.
If a person is qualified for a paid position,
provide equal consideration.
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Participation

• Be patient and allow the person time to complete
  tasks.

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Participation

• Think of respectful and age-appropriate ways to
  modify activities so a person can participate.

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Participation

• When offering help, first ask what help is
  needed.

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Participation

• Value the dignity of each individual.

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Participation

• Promote independence
• schedules
• signs
• give choices

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Sample Schedule

• 1000 Arrival/remove coat and hat
• 1005 Put books in return box
• 1010 Walk to story time
• 1015 Story time
• 1030 Choose a book
• 1035 Check out books
• 1040 Get coat
• 1045 Say, Good bye
• 1145 Leave

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Participation

• Maintain respect.

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Participation

• Encourage inclusion for all persons with autism
  and their families.

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Environmental Modifications

• Create cozy places
• Reduce florescent lighting if possible
• Reduce loud noises
• Try to limit people talking all at once

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Practice

• How might you adapt the following library
  activities for someone with autism?
• story time
• arts and crafts activity
• book club
• educational presentations
• others

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Problem Situations You Have Faced in Your Library
Discussion
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