Judge's Guide to Autism

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disability that is characterized by core deficits in two primary areas: social communication and repetitive and restrictive behaviors. ASD is a lifespan disorder meaning that symptoms may change over time but the diagnosis persists into adulthood. Common symptoms of ASD include:

• • Poor eye contact (either too much or too little)
  • Topics of conversation may be overly focused on details unrelated to the conversation and/or may be “one-sided” (i.e., not a fluid “back and forth” discussion)
  • Repetitive actions (e.g., flapping, spinning, rocking, or flicking)
  • Repetitive language (e.g., “scripting” or repeating words or phrases) and/or overly formal language
  • Rigid behaviors or actions and anxiety/ anger when things deviate from expected routine
  • A flat vocal affect (i.e., voice stays at one tone with little to no inflection) or increased speech latency (i.e., long delays in responding to questions)
  • Sensory sensitivities to light, sound, taste, and/or touch

Individuals with ASD may or may not have a co-occurring intellectual disability or may have an
average, above average, or superior IQ. There is no physical presentation associated with ASD.
ASD occurs in both genders and in all races and ethnicities.

AAW: Adult Autism Waiver

ABA: Applied Behavior Analysis

ACAP: Adult Community Autism Program

ASD: Autism Spectrum Disorder

BAS: Bureau of Autism Services

BCBA: Board Certified Behavior Analyst

BHRS: Behavioral Health Rehabilitation Services

BSC: Behavioral Specialist Consultant

CAO: County Assistance Office

DHS: Department of Human Services

DSP: Direct Support Professional

EI: Early Intervention

ID: Intellectual Disability

IEP: Individualized Education Plan

IFSP: Individual Family Service Plan

MA: Medical Assistance

OCDEL: Office of Child Development and Early Learning

ODP: Office of Developmental Programs

OMHSAS: Office of Mental Health and Substance Abuse Services

OT: Occupational Therapy

PECS: Picture Exchange Communication System

P/FDS: Person/Family Directed Support Waiver

PT: Physical Therapist

SC: Supports Coordinator

SW: Social Worker

ST: Speech Therapist

TSS: Therapeutic Support Staff

Early Intervention

Research has indicated that EI services, from birth to age 5, can greatly improve an individual’s ASD prognosis over time. EI can lead to significant improvements in social communication, as well as gross motor skills and language. EI services in Pennsylvania are available through OCDEL,
Pennsylvania Department of Human Services and the Pennsylvania Department of Education.

Consolidated Waiver

The Consolidated Waiver is administered by ODP and is available statewide as a 1915(c)
Medicaid program which provides home-and community-based services (including: employment services, day habilitation services, and community integration) for individuals with ID or autism beginning at 3-years-old.

Behavioral Health Rehabilitation Services (BHRS)

Under OMHSAS, Pennsylvania DHS administers one-to-one services at home, school, and in the community to improve behavioral and mental health. These services are available to
MA-eligible individuals with a range of disabilities and diagnoses, including ASD, until the day before their 21st birthday.

Person/Family Directed Support Waiver (P/FDS)

P/FDS is administered by ODP and is available statewide as a 1915(c) Medicaid program
which provides home- and community-based services. This includes employment services, day
habilitation services, and community integration for individuals with ID or autism beginning at 3-years-old.

Adult Autism Waiver

AAW is one of two programs administered by BAS of the Pennsylvania DHS to meet the
needs of individuals with ASD age 21 or older throughout Pennsylvania. AAW is a 1915(c)
Medicaid program which provides home- and community-based services including employment services, day habilitation services, and community integration.

Adult Community Autism Program

ACAP is one of two programs administered by BAS of the Pennsylvania DHS to meet the needs
of individuals with ASD age 21 or older. ACAP is a managed care program which provides physical health services as well as home, behavioral, and community-based services. ACAP is available in Chester, Cumberland, Dauphin, and Lancaster counties.

Applied Behavior Analysis

A widely used intervention approach for individuals with ASD which is grounded in behavioral theory to improve behaviors. At this time, ABA is one of few evidence-based interventions for specific symptoms of ASD. The term evidence-based refers to interventions that are found to be effective, beneficial and replicable through extensive research. Individuals who are BCBAs specialize in the delivery of ABA interventions.

Established Interventions: Sufficient evidence is available to confidently determine that an
intervention produces favorable outcomes for individuals on the autism spectrum. That is, these interventions are established as effective.

Emerging Interventions: Although one or more studies suggest that an intervention produces
favorable outcomes for individuals with ASD, additional high quality studies must consistently
show this outcome before we can draw firm conclusions about intervention effectiveness.

Unestablished Interventions: There is little or no evidence to allow us to draw firm conclusions about intervention effectiveness with individuals with ASD. Additional research may show the intervention to be effective, ineffective, or harmful. (National Autism Center, 2015)

There are 14 Established Interventions that have been thoroughly researched and have
sufficient evidence for us to confidently state that it is effective.

There are 18 Emerging Interventions that have some evidence of effectiveness, but not
enough for us to be confident that they are truly effective.

There are 13 Unestablished Interventions for which there is no sound evidence of effectiveness.

Established for children

• • Behavioral Interventions
  • Cognitive Behavioral Intervention Package
  • Comprehensive Behavioral Treatment for Young Children
  • Language Training (Production
  • Modeling
  • Natural Teaching Strategies
  • Parent Training
  • Peer Training Package
  • Pivotal Response Training
  • Schedules
  • Scripting
  • Self-management
  • Social Skills Package
  • Story-based Intervention

Emerging for Children

• • Augmentative and Alternative Communication Devices
  • Developmental Relationship-based Treatment
  • Exercise
  • Exposure Package
  • Functional Communication Training
  • Imitation-based Intervention
  • Initiation Training
  • Language Training (Production & Understanding)
  • Massage Therapy
  • Multi-component Package
  • Music Therapy
  • Picture Exchange Communication System
  • Reductive Package
  • Sign Instruction
  • Social Communication Intervention
  • Structured Teaching
  • Technology-based Intervention
  • Theory of Mind Training

Unestablished for Children

• • Animal-assisted Therapy
  • Auditory Integration Training
  • Concept Mapping
  • DIR/Floor Time
  • Facilitated Communication/Rapid Prompting
  • Gluten-free/Casein-free diet
  • Movement-based Intervention
  • SENSE Theatre Intervention
  • Sensory Intervention Package
  • Shock Therapy
  • Social Behavioral Learning Strategy
  • Social Cognition Intervention
  • Social Thinking Intervention

www.nationalautismcenter.org
National Autism Center (2015). Findings and Conclusions: National
Standards Project, Phase 2. National Autism Center.

There is one Established Intervention that has been thoroughly researched and has sufficient
evidence for us to confidently state that it is effective.

There is one Emerging Intervention that has some evidence of effectiveness, but not enough for us to be confident that it is truly effective.

There are four Unestablished Interventions for which there is no sound evidence of effectiveness.

Established for Adults

• • Behavioral Interventions

Emerging for Adults

• • Vocational Training Package

Unestablished for Adults

• • Cognitive Behavioral Intervention Package
  • Modeling
  • Music Therapy
  • Sensory Integration Package

www.nationalautismcenter.org
National Autism Center (2015). Findings and Conclusions: National
Standards Project, Phase 2. National Autism Center.

Currently, there are no medications approved by the Food and Drug Administration (FDA) to treat the core symptoms of ASD.

• • Risperidone (Risperdal) and aripiprazole (Abilify) are antipsychotic medications that are FDA approved to treat irritability and aggression symptoms associated with ASD
  • It is not uncommon for individuals with ASD to be prescribed other medications to treat co-occurring diagnoses, such as anxiety or depression.

Autism Spectrum Disorder (ASD):

• • ASD a neurodevelopmental disability that is characterized by varying degrees of “persistent deficits in social communication and social interaction” as well as the “presence of restricted or repetitive patterns of behavior, interests, or activities.”
  • In previous iterations of the Diagnostic and Statistical Manual of Mental Disorders (DSM), ASD was comprised of five distinct diagnostic categories: Autistic Disorder, Asperger’s Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rhett’s Disorder, and Childhood Disintegrative Disorder. As of 2013 with the release of the DSM-5, all of these diagnoses were combined into Autism Spectrum Disorder
  • Individuals with ASD can have a range of symptomatic expressions from mildly impaired (previously labeled as Asperger’s) to severely impaired. Individuals with ASD may need varying degrees of ongoing support (from minimal to substantial) depending on how affected their abilities are in the areas of thinking and learning, social communication, social interaction, and restricted/repetitive behaviors. Some individuals who are mildly impaired may still require more substantial support.

Examples of Social and Communication Impairments:

1. Individuals with ASD may have difficulty understanding social situations and misreading social cues from others.
2. Individuals with ASD may have difficulty integrating verbal and non-verbal communication (e.g., speaking, smiling, and making eye contact) to regulate social interactions.
3. Individuals with ASD may have difficulty forming age-expected social relationships.

Examples of Restricted/Repetitive Behaviors:

1. Individuals with ASD may repeat words or phrases (also called scripting).
2. Individuals with ASD may present with whole-body movements called motor stereotypies or smaller, milder hand or finger mannerisms that are unexpected.
3. Individuals with ASD may have a strict adherence to routine and familiarity and have
   challenges with transitions and new situations.
4. Individuals with ASD may have aversions or attractions to sensory stimuli (e.g., tastes, smells, sounds, sights, textures).
5. Individuals with ASD may have interests in things that are abnormal either in intensity (e.g., interest in child-focus themes as an adolescent) or focus (e.g., unexpected hobby).

• • Individuals with ASD may also present with facial tics or have a history of seizures.
  • Some individuals with ASD have complex communication needs or are “non-verbal.” These individuals may use a device such as an iPad to communicate.
  • ASD is often diagnosed at a young age, but can also not be diagnosed until adulthood if the case is mild or misdiagnosed. There are no blood tests or other biomedical exams to test for ASD. ASD is diagnosed through behavioral observations in multiple contexts and by self- and other-report of symptoms.

According the Centers for Disease Control and Prevention (CDC), as of 2018, ASD occurs in 1 out of every 59 children in the United States. In Pennsylvania, through the Pennsylvania Autism Census, ASERT found that the number of Pennsylvanians with autism receiving publicly funded services was over 55,000 individuals. Although the incidence of ASD has been steadily increasing with time, experts in the field maintain that this increase is a result of improvements in understanding and accurate diagnosis of ASD as opposed to an actual increase in the number of cases of ASD. For example, individuals who may have been misdiagnosed with childhood schizophrenia are now being correctly diagnosed with ASD.

Currently, researchers are evaluating the causes of ASD; however, no cause has been identified
to date. Experts believe that there is a strong genetic component to developing ASD. There is no scientific evidence supporting the claim that vaccines cause ASD. The one published study demonstrating a link between vaccines and ASD was debunked and withdrawn from the literature.

There is no cure for ASD. Treatments and supports, including ABA, have been shown to improve outcomes in individuals with ASD, especially when intervention occurs at a young age.

ASD is four times more likely to occur in males as in females according to CDC surveillance data.
Research is exploring the reason for the differential prevalence. ASD often presents differently in males and in females and some experts believe that females may go undiagnosed; however, research in this area is still ongoing.

ASD assessments vary by individual and by type of provider but often include direct observation of the individual in the clinic and/or a classroom environment, interview with the individual, family members, and/or school personnel, and the completion of self- and other-report
questionnaires. The gold standard assessment for ASD includes administration of the Autism
Diagnostic Observation Schedule, Second Edition (ADOS-2) which is a semi-structured
interview completed by a trained clinician, often a psychologist.

ASD can be screened for by doctors, speech therapists, occupational therapists, teachers, social
workers, and other professionals who will then refer these individuals to behavioral health providers. An ASD diagnosis must officially come from a medical provider (psychiatrist, developmental pediatrician, neurologist, pediatric nurse practitioner) or a psychologist.

According to the CDC, as of 2016, about 1/3 of individuals with ASD have a co-occurring ID (an
IQ less than 70).

The 2011 Pennsylvania Autism Needs Assessment, conducted by ASERT, found that 85% of individuals with ASD have a co-occurring disorder. The most common co-occurring diagnoses for adults aged 21 and up are:

• • Intellectual Disability (51%)
  • Anxiety Disorder (33%)
  • Obsessive Compulsive Disorder (32%)
  • Attention-Deficit/Hyperactivity Disorder (30%)
  • Depression (18%)

For children under age 21, the most common co-occurring diagnoses are:

• • Attention-Deficit/Hyperactivity Disorder (37%)
  • Developmental Delays (35%)
  • Learning Disability (26%)
  • Anxiety Disorder (20%)