Making a Difference for Those with Autism

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Making a Difference for Those with Autism

• Alicia Koger, BCBA, LPC, NCC
• Laura Maines, J.D.

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Objectives

• To understand characteristics of Autism
• To be more aware of the challenges faced by those
  with autism and their families
• To understand the scope of need for
  autism-specific services and programs in PA
• To be better able to assist in meeting the needs
  of a rapidly increasing population of children
  and adults with ASD

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Autism Spectrum Disorder

• A developmental disability marked by impairments
  in social interaction, communication, and
  restricted, repetitive, and stereotyped patterns
  of behavior
• Includes Autism, Aspergers, and PDD-NOS

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Pervasive Developmental Disability

• 5 Subtypes
• Autistic Disorder
• Aspergers Syndrome
• Pervasive Developmental Disorder-Not Otherwise
  Specified (PDD-NOS)
• Retts Disorder
• Childhood Disintegrative Disorder

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Autistic Disorder (AD)

• Impaired social interaction  
• Impaired communication
• Restricted, repetitive and stereotyped patterns
  of behavior, interests, and activities

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Aspergers Syndrome (AS)

• Milder symptoms of autistic disorder
• Might have social challenges and unusual
  behaviors and interests
• Typically do not have problems with language or
  intellectual disability

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PDD-NOS

• Meets some, but not all, of the criteria for
  autistic disorder or Asperger syndrome

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Retts Disorder

• Normal development until 5 months
• Deceleration of head growth
• Loss of purposeful hand skills, social
  engagement, language development
• Poorly coordinated gait

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Childhood Disintegrative Disorder

• Normal development for first 2 years
• Loss of acquired skills (before age 10)
  in language, social skills, adaptive behavior,
  bowel/bladder control, play, motor skills 

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Definite etiology is unknown

• Biological origin
• Genetic component
• Environmental influence
• No evidence of a relationship between
  vaccinations and autism

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Impairments in ASD

• Communication and Language
• Intellectual Functioning
• Social skills
• Sensory experiences
• Behavior

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Communication and Language Deficits

• Delay or lack of spoken language
• Literal processing of verbal information
• Impressive vocabulary
• Difficulty with conversation
• Repetitive use of language (echolalia)
• Lack of make-believe play or social imitative play

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Intellectual Functioning

• Intellectual disability or intellectually gifted
• Focus on a minute feature of an object or a
  person rather than the whole
• Obsessive attention to a specific object or
  activity
• Strong aptitude for rote memory of certain things

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Ritualistic and Unusual Behavior Patterns

• Stereotypy - pattern of persistent and repetitive
  behaviors
• Selfstimulatory behaviors
• Need to complete things in a very particular way

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Sensory issues

• Hyper- or hypo-sensitive
• World may seem chaotic
• Manipulating their own environments may help to
  bring order to experiences
• New activities may be scary or overwhelming

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Insistence on Sameness and Perseveration

• Obsessive need for sameness or routines
• Preoccupation with certain topics
• Compulsive adherence to nonfunctional routines or
  rituals
• Persistent preoccupation with parts of objects

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Impaired Social Relationships

• Difficulty perceiving emotional state of others
• Lack of spontaneity in sharing enjoyment with
  others
• Impairment in use of nonverbals
• Attend almost exclusively to words being spoken
• Take words very literally
• Receive only part of the message or receive a
  completely erroneous message

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Perspective taking and empathy

• Studies suggest that children with autism are
  less able than typically developing peers to
  label others emotions, take the perspective of
  others, and respond to others with empathy.

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Challenges for those with ASD

• People will initiate social interaction more
  frequently with individuals who are able to take
  the perspective of and demonstrate empathy toward
  others.

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Deficits in Executive functioning

• Planning and problem-solving
• Helps us to learn new information, remember
  information, and use the information to solve
  problems.

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Severe Problem Behavior

• Property destruction
• Aggression
• Self-injury
• Sleep problems
• Eating problems

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Common co-occurring conditions in ASD

• Emotional behavior problems
• ADHD
• Anxiety
• Depression
• Gastrointestinal problems
• Sensory issues
• Seizures/epilepsy
• Intellectual disability
• Allergies

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Prevalence of ASD

• Estimated average 1 in 110 children
• More common in boys than girls (41)

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Why the increase?

• Greater awareness
• Changes in federal and state policy
• Younger age of diagnosis
• Broadening of diagnostic criteria
• More widespread screening and better assessment
• Greater availability of services for diagnostic
  category
• An actual increase in the true incidence of ASD

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Prevalence in PA (2005)

• Close to 20,000 people with ASD
• Predicted to be 25,000 by 2010 (without mortality
  or new diagnosis)
• 93 were under age 21

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Adults with autism

• Lack of empirical data
• Lack of data in ASD residential or employment
• Direct care staff average turnover rate for
  adults with ASD is 50

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Legal system

• Juveniles and young adults with ASD are being
  arrested and prosecuted
• Often related to sexual harm or stalking
• Many do not know/understand intricacies of
  relationships, personal space/boundaries

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Risk of sexual abuse

• Difficulty in communicating, perspective taking,
  and self-advocacy
• Not able to adequately defend themselves, either
  to explain their actions or to deny involvement
  in such actions. 

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Abuse Developmental Disabilities

• Children with DD are abused 2-3 times more than
  non-disabled kids
• 68-80 of DD females are sexually molested or
  raped by age 18
• 30-70of DD males are molested or raped by age 18
• 49 of DD individuals who are abused will
  experience 10 or more abusive incidents in their
  lives
• 90 of people with DD who are abused know their
  abuser

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Other risks/impacts

• 25 of PA adults with ASD have unwanted police
  involvement
• 7 of PA kids with ASD related behaviors have had
  detention
• Only 30 of PA parents surveyed and 50 of their
  spouses had no job impact due to ASD

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Employment housing

• Individuals with ASD have minimal funding
  available to them after age 21
• 74 of adults with ASD live at home
• 11 live in group homes
• 7 are on their own with or without support
• Results in poor vocational training
  opportunities, few housing options, low quality
  of life

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Employment

• 75 say they experience discrimination
• 15 say its due to underutilization of their
  skills
• 9 of adults with ASD work full time
• 26 work part time
• 80 say its hard to find work

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Educational support

• 39 report needing social supports
• 29 report needing tutors
• 31 report needing academic counseling
• 50-60 of adults with ASD are in a student group
  or peer mentor group, but only 50 of those
  result in friendship.

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Results of PA census

• Need to plan for thousands of children with
  autism who will transition into adulthood in the
  near future
• Need to plan for housing needs
• Need cross systems coordination
• Need consistent data collection for accurate
  census
• Need to increase capacity of professionals to
  evaluate, diagnose, educate and provide services

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Act 62

• Requires commercial insurance to cover cost of
  ASD services up to 36,000
• TPL applies (Third Party Liability) CMS
  regulations related to MA being payer of last
  resort
• Requires DPW to license Behavior Specialist
  Consultants (BSCs)
• Many children are not affected
• Insurers still determine medical necessity

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Act 62 Impact on families

• Interruptions of care if
• Current provider does not contract with familys
  commercial insurance company
• Clinician working with the family does not have
  the credentials required by the commercial
  insurer
• Denials from commercial insurer when plan does
  not have autism benefit

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Act 62

• Providers are experiencing increased complexity
  of process as a result of
• Concurrent authorizations
• Varying commercial insurers requirements for
• Medical Necessity
• Contract Negotiations
• Authorizations
• Billing Processes
• Increased demand on credentialed clinicians for
  supervision or provision of care

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Parity?

• Mental health benefits must be equal to/no less
  than comparable physical health benefits
• Example go to OP physical health PCP as much as
  you need based on however you feel that year,
  then you must do the same for Mental Health
• Pennsylvania has not determined whether it
  affects Act 62. The impact would be the removal
  of the 36,000 limit of payment for services under
  the act.

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Summary

• PA providers need to increase their capacity to
  serve individuals with ASD
• Need to collaborate with others

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References

• Centers for Disease Control and Prevention
  (2009).
• Diagnostic and Statistical Manual of Mental
  Disorders - Fourth Edition (DSM-IV). (1994)
  American Psychiatric Association
• Gerhardt, P. (2010). ABA and Older Learners with
  Autism Evidence-based applications to promote
  competence and quality of life. PEP conference at
  University of California.
• Mendell, D. (2010). Statewide Needs Assessment.
  ASERT.
• National Research Council (2001). Educating
  Children with Autism. National Academies Press
• Pennsylvania Autism Census Report (2009). DPW
  Bureau of Autism Services.

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Contact info

• Alicia Koger
• akoger_at_wesleyspectrum.org
• 724-443-4888
• Laura Maines
• lmaines_at_wesleyspectrum.org
• 412-342-2300

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• Wesley Spectrum
• Autism Services
• Intake Department 724-443-4888