Introduction to Autism Spectrum Disorders (ASD) for Adult Service

Providers

Ann N. Garfinkle, PhDUniversity of Montana

Fast Facts• Autism is the fastest-growing serious developmental disability

in the U.S. • More children will be diagnosed with autism this year than

(children )with AIDS, diabetes & cancer combined• Autism costs an individual $3.6 million over the (Ganz, 2006)• By 2023, there will be 380,000 people diagnosed in the US • Cost to the nation from present to 2023, $27 Billion (Davis,

2009)• Autism receives less than 5% of the research funding of many

less prevalent childhood diseases• Leading cause of death=drowning

AGENDA

• ASD defined.• ASD diagnosed.• Is ASD on the rise?• What Causes ASD?• Is there a cure?• Current Challenges• Future Challenges

ASD Defined

Past, Present and Future Diagnostic Criteria

• History of the diagnosis– First reference 1912– First diagnosis, 1934, Leo Kanner• Around the same time Dr. Asperger describes another

group

Pervasive Developmental Disorders (PDD)—1980s (DSM III)

autism CDDRhett’s Aperger’s PDD-NOS

Autism

• A behaviorally diagnosed developmental disability characterized by:– Deficits in communication skills– Deficits in social skills– A restricted range of interests or behaviors

PDD-NOS

• Stands for Pervasive Developmental Disorder-Not Otherwise Specified

• Similar to autism, but without meeting all the criteria

Asperger’s

• Characterized by:– Deficits in social skills– Restricted ranges of behaviors/interests

• Children meet early communication markers– May have difficulties with pragmatic skills though

Core Deficits

Communication Social Skills

Restricted repetoire

Currently: Autism Spectrum Disorders (ASD) formerly Pervasive Developmental Disorders (PDD) (DSM IV-R)

autism CDDRhett’s Aperger’s PDD-NOS

Core Deficits with related disordersGastro- intestinal dysfunctionSleep disturbancesMotor problems (paraxial)EEG abnormality

Communication Social Skills

Restricted repetoire

ASD

Social anxiety

OCD

Cognitive delay

Language delay

ADHD

aggression

Also, symptoms change over time

• As children enter adolescence– Accidents/injuries and safety issues increase– Issues with mood and depression– Trouble with law increases due to over reliance on

rules (i.e., while crossing the street the sign turns to stop)

– Continued issues with social skills

2013 DSM V

• “Autism Spectrum Disorders” includes autism, Asperger’s, PDD-NOS

• Moves from a triad of deficits to two deficit areas

• CDD and Rhett’s go elsewhere

• No more autism, Asperger’s or PDD-NOS

• New social-communication category

• A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

• 1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

• 2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

• 3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

• B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

• 1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

• 2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

• 3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

• 4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning

Reasons for New Diagnostic Criteria

• Data-based• Easier diagnosis• Potentially more interventions

Controversy rising

• Who will not be included• Access to treatment

Regardless, ASD

• Impacts development• As much as 90% of social information is lost

(eye gaze studies, theory of mind studies• Many think of this as a primarily social issue• Few studies on restricted repertoire

Autism Diagnosed

Early Identification

• Key for best treatment outcomes• Can be done under the age of 2• Soon screeners for 1 year olds• Average age of diagnosis is 4.5– Nation wide push to “Move the Needle.”– National “Learn the Signs. Act Early.”– Montana State Team and Ambassador

Diagnosis

• Behavioral diagnosis• Recent advances suggest that very young

children can be diagnosed– Some infants at high-risk, at 9 mos.?– Retrospective research, at age one– Early checklist (1 year)– Clinically children about the age of two– Multiple tools for 3 years and up

High-Risk—9 months

• Developmental Factors– Onset of Joint Attention

• Risk Factors– Having a sibling with ASD– Odd motor movements– Low-birth weight– Maternal obesity– Advanced paternal age

Retrospective Research on 1 Year Olds

• Birthday party video tapes• Differences in:– Responding to name – Lack of affect– Lack of communicative behavior– Joint attention (including protodeclarative

pointing)

1 year old screening measures

• Two measures being validates

2 year old diagnosis

• Heavily based on motor imitation skills– Stability in diagnosis through age 8 (at least)

3 years and older

• Many diagnostic tools-ADOS etc• Traditional DSM-IV criteria

Description

• Autism Speaks and University of Southern Florida have just released a video-dictionary of symptoms

Is ASD on the Rise?

If so are there really more affected people or just more diagnosed?

• Prevalence studies mainly on children and in high-resource countries (Canada, US, Sweden, Norway, Denmark, UK, France, Japan)

Prevalence Studies Over Time

Year Best Estimate Prevalence SummaryPrior to 1990 1 in 2,000 children (autism)

• about 75% with Intellectual Disability (ID)Mid 90’s 1 in 500

Mid ‘00’s 1 in 150

Most recent About 1% of children with an ASD• about 40-50% with Intellectual Disability (ID)

• 1 in 88 children in the (4 to 5 times more likely in boys than in girls)—internationally rates range from .6%-1%; 2.6% on South Korea (1 in 38)

• All racial, ethnic, and socioeconomic groups • Figures will change with new diagnostic criteria

Today’s Prevalence Data

Currently, (nationally)

• 70% of people diagnosed with ASD are UNDER the age of 14

Number of Medicaid-eligible children Diagnosed with ASD who will turn 18 by year with year 1 as 2012

1 2 3 4 5 6 7 8 9 10 11 12 130

10

20

30

40

50

60

• Changes in diagnostic criteria over time• Increased awareness in the community • Changes in availability of services• Changes in children diagnosis• Recognition that ASDs can occur across the

spectrum of intellectual functioning, and other medical and psychiatric disorders (comorbidities)

• Improved identification among some groups • (Asperger’s, PDD-NOS, girls, Hispanic children and others)

• Improved early identification• True increase in symptoms cannot be ruled out

Increasing ASD Prevalence

What Causes ASD?

Nobody Knows!• It’s NOT:– Poor parenting

• Possibilities:– Problems in the social environment– Problems in the physical environment– Brain dysfunction

• Current best guess?– Genetics (and?)

Support for genetic basis

• Boys more common then girls• Non-twin siblings 5-10%• Incidence rate among fraternal twins 0-10%• Incidence rate among identical twins 60-92%

Co-morbidityw/ know genetic basis

• Fragile X syndrome• Rhetts• Tubular scholorsis• Angelsman Syndrome

New Animal Models

• Mice models• Rat models

Current Funded Research

• Genetic• Genetic plus environmental insult

Who is at Risk?

• Sibling with ASD• Males• Older parents• Very premature birth/Low birthweight• Family history of autoimmune disorders• Parents with history of psychiatric

conditions• Multiple, complex genetic and

environmental interactions are likely

Is there a cure?

In a word, “No”

• But, some do respond very well to treatment• “Best Outcome”– No need for services (i.e., Special Education)– Reduction in symptom severity (below clinical

levels)– Normal IQ

• 25% (Howlin, 2005); 45% (Lovaas, 1985)

What we do know about education and treatment:

• Mixed results with medical and educational approaches– (medical has limited research, off-label use, significant side

effects, but some meds decrease primary/secondary symptoms (risperidone decreases agitation)

• No known “autistic-specific”• Earlier may be better• Most (90%) info on programs for young children• Several approaches from various philosophical

backgrounds, predominately ABA however

What is ABA?

• Applied Behavior Analysis• Applied, Behavioral, Analytic, Conceptual,

Technological, Capable of Generalized Outcomes

Thank you!

Ann.garfinkle@mso.umt.edu