Transcript Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder
(ASD)
This disorder includes Autism (299.0), and the
Pervasive Developmental Disorders NOS, and
Asperger’s (299.80). It does not include Rett’s
Syndrome or Childhood Disintegrative
Disorder.
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Objectives
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To describe the definitions for and
epidemiology of ASD
To review the current methods for screening,
diagnosing, care and case managing, and
treating ASD
To review the key features of how ASD
presents in the children enrolled New
Jersey’s Behavioral Health system of care
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Definition
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ASD is a biologically based disorder of
neurodevelopment. The deficits are as follows:
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ASD is a lifelong developmental, neurological
disability that affects:
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Reciprocal social interaction
Communication impairments
Stereotyped and compulsive behavior patterns, activity
patterns, or interest patterns
Speech and language
Social relationships
Psychological functioning
Development of cognition, emotions and behaviors
Co-occurring disorders are frequently present with
ASD.
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Epidemiology
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ASD occurs in approximately 6 out of 1000
children in the United States.
Asperger’s occurs in approximately 3 out of
1000 children in the United States.
The incidence of ASD appears to be
increasing because of the following reasons:
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There are more and more viable births. Therefore, always get a
pregnancy, birth, and developmental history. This history is
hardest to accomplish with adoption, especially with foreign
adoption.
Definitions have become much broader in scope than Kanner’s
original description.
Effective early screening increases the number of children
diagnosed.
The frequency of ASD diagnosis appears to be increasing as
more dollars become available for treating this diagnosis.
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Early Screening
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The American Academy of Pediatrics stresses the use
of an ALARM in-office approach:
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Autism is prevalent
Listen to parents about developmental concerns
Act early with the use of screening
Refer to appropriate professionals, organizations, and
programs
Monitor incoming information and the child and family
Children who are cared for in Neonatal Intensive Care
Units (NICU) are screened and placed in Infant and
Toddler programs, Early Intervention Programs, or
Fetal Alcohol and Drug Syndrome (FADS) Centers.
Child Evaluation Centers (CEC) often screen and
diagnose children who are referred after the first year
of life.
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Early Screening (continued)
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The following are examples of short form screening that can be done in
15-30 minutes with some pediatric office help if necessary. These tests
concentrate on areas such as: emotion and eye-gaze, communication,
gestures, sounds, words, understanding and object use.
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The Communication and Symbolic Behavioral Scales Developmental Profile
(CSBS DP) are 24 screening tools used for ages 6-24 months.
Modified Checklist for Autism in Toddlers (M-CHAT) is a list of 23 questions
for ages 18 months - 3 and one half years. This test is often given at an 18
month Pediatric checkup.
Gilliam Autism Rating Scale – GARS is a 10 minute classroom test for
children ages 3-22 given by school staff to determine if there are
stereotyped behaviors, communication lags, social interaction lags, and/or
developmental disturbances.
Childhood Autism Rating Scale (CARS) is a 15 item 20 minute screening for
children ages 2 and up. It is given by clinician while doing the guardian and
child interview.
ADOS (Autism Diagnostic Observation Scale) is a 40 minute toddler to adult
screening test. The clinician can picks up qualitative impairments in social
interactions and communication. The test also finds restrictive, repetitive
and stereotyped patterns of behavior, interest and activity.
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Diagnostic Assessment
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General Information is gathered from multiple sources.
History includes pregnancy, birth, and, developmental history and the child’s
medical history.
Family medical and psychiatric history are important.
Screening data including a parent checklist is gathered.
Physical and neurological exams are completed usually by a multidisciplinary
team with professionals with specialized training in early childhood development
and ASD.
The diagnosis is likely confirmed by a Developmental Pediatrician, Pediatric
Neurologist, or Child Psychiatrist.
Evaluation data is gathered from the educational system. This includes a
speech, hearing, and language therapist, occupational and/or physical therapist
where indicated, and developmental, and accurate testing psychologist.
The educational data is added to the medical evaluations.
Ear, Nose, and Throat and geneticist evaluations are completed if warranted.
Examination for co-occurring conditions are always part of the process.
Chromosomal studies, metabolic testing for inborn errors of metabolism, EEG,
and Neuro-imaging studies are tests commonly used.
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Psychological Assessment
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Other skills are tested such as Academic testing by the WAIT,
Language development by the Reynell, and socio-emotional
development by the Achenbach.
Adaptive tests are used where verbal skills are quite poor.
Examples are:
 Vineland Adaptive Behavior Scales (VABS)
 Scales of Independent Behavior-Revised (SIB-R)
Cognitive evaluations can start before age 3. A list of commonly
used test include:
 Bayley
 Differential Ability Scales (DAS)
 Stanford-Binet Intelligence Scales (SBS)
 Wechsler Scales-(WPPSI) Preschool and Primary Scale and
(WISC) Scale for Children
 Varying short form or non-verbal measures (TONI)-Test of NonVerbal Intelligence) that have to be adjusted down in scoring
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Medical Alternative Diagnosis and or
Co-Occurring Disorders with ASD
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Hearing Loss or Congenital Deafness
Lead or Heavy Metal Toxicity or Toxin Poisoning like
(FADS) Fetal Alcohol and Drug Syndrome influence
Epilepsy including special syndromes such as
Tuberous Sclerosis or Landau Kleffner Syndrome
Chromosomal Abnormalities such as Fragile X or
Chromosome 15 abnormalities
Central Nervous System (CNS) Physical Abuse
Damage
Other Intra-uterine or neonatal CNS Damage
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Psychiatric Alternative Disorders or
Co-Occurring Disorders with ASD
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Mental retardation occurs up to 75% of the time with Autism
(299). This percentage does not include Asperger’s or PDD
NOS (299.80) diagnosis.
Obsessive-Compulsive Disorder (OCD) – In ASD the
symptoms is not bothersome to the children themselves, it
may bother the parent, sibling, peer, aide, or teacher.
Tourette’s or Tic Disorder
Elimination Disorders – wetting or soiling
Mood Disorders
Anxiety Disorder other than Social Anxiety
Schizophrenia – This diagnosis is included when
hallucinations and or delusions are prominent for over one
month
PTSD
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Psychiatric Disorders Not Co-Occurring
with ASD
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ADHD - This is seen as very controversial in the medical,
neurological, and psychiatric communities.
Personality Disorder Avoidant, Schizoid and Schizotypal
Type - ASD has an earlier onset with more severity of symptoms
Communications Disorders on Axis II - The social features of
ASD aren’t present
Reactive Attachment Disorder (RAD) - This diagnosis occurs
with early and severe abuse and neglect. RAD improves with
consistent care giving and ASD may not.
Selective Mutism
Stereotypic Movement Disorder
Intermittent Explosive Disorder - Other forms of aggression
associated with ASD must be looked at first. This is seen as very
controversial in the medical, neurological, and psychiatric
communities.
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The Possible Strengths of an ASD Child
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Understanding of concrete concepts
Memorization of rote material quickly and easily
Recall of visual images and memories easily
Visual Thinking
Learning discrete chunks of information rapidly
Hyperlexic decoding written language at an early age
Long term memorization capability
Understanding and using concrete rules and sequences
Approaching tasks perfectionistically
Being precise and detail oriented
Maintaining a schedule
Being honest even to a fault
Extreme focusing on a task others may not perceive as pleasurable
Being charming with innocence and without deviousness
Having an excellent sense of direction
Being compliant to poorly understood instructions
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Care and Case Management
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Care and case management are extremely important because they can
provide movement to the correct care venues as soon as possible. This
can prevent secondary effects of delayed language development,
delayed social development, co-occurring pediatric, neurological, and
child psychiatric conditions.
The first possible step usually occurs in NICU, where the child and
family are often directed to Early Intervention Services.
The next likely step occurs in a Pediatric Office (well baby visit, or crisis
visit). Initial care and case management is initiated in the doctor’s office.
The next step depends on the complexity of the child, the age of
diagnosis, the comfort of the child’s Pediatrician and the level of
specialization of the area or state the child and family are in. These are
possible next step referrals.
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Developmental Pediatrics Office with possible care management
Pediatric Neurology office
Child Psychiatry office
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Care and Case Management (continued)
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ASD referrals to school systems follow the law described in the
Individuals with Disabilities Education Act (IDEA). This special
education law is divided into three major venues: Early Intervention
ages 0-3, Preschool disability ages 3-5 and Special Education ages 5
through 21. The management of the psychological , speech and
language, occupational therapy and physical therapy workup can be
evaluated and assigned as needed in all three venues.
The obstacle is ages 0-3 where the state has the choice of which
agency handles the Early Intervention Programs and the servicing of it.
States can initiate it through the department of education, the
department of health, the division of retardation or developmental
disability or even a behavioral health division.
An Early Intervention Program EAP manager can wind up in a case or
care management role or a screening role for a family. They have to
sort out where to start and to make sure follow-up takes place. Much of
the coverage may not be linked to the employee’s mental health plan.
An EAP needs to create medical and educational linkage. They also
may be asked by many parents difficult to answer questions about
diagnosis, treatment qualifications, treatment approaches, progress
measures and times that treatment should be in place. An EAP needs
to stay current to answer these questions or refer them to the personnel
in the treatment team that can.
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ASD Treatments Often Discussed and Current Evidence, Efficacy, and Risks
Intervention
Evidence Basis
Risks Reported
Lead Professional
Comments
Applied Behavioral
Analysis (ABA)
Controversial and
nonreplicable
Overuse; high financial
risk; extended
timeframes and
non-delineated
ages
Special
Education/Psycholog
ist
Requires a coordinated team, a
trained parent, and a
credentialed ABA
Therapist; better than
traditional psychotherapy
for changing abnormal,
maladaptive behaviors
Chelation
None
Significant
MD
Mostly Testimonial
Intravenous
Immunoglobulin
None
Significant
MD
Mostly Testimonial
Dimethyl glycine
None
unclear
MD or nutritionist
Mostly Testimonial
B6-Magnesium
None
unclear
MD or nutritionist
Some attempts at controls
Casein and gluten-free
diet
None
Can make dietary OCD
even worse
MD or nutritionist
The wrong child can get worse
Secretin Enzyme
None
GI Problems
MD or nutritionist
Cranio-sacral Therapy
None
Can cause spinal
complications with
incorrect
manipulation
Chiropractor
Speech and Language
Therapies
including Auditory
and Sensory
integration, Sign
Language
None alone
None reported
Speech and Language
Therapists
May be useful as ancillary
treatment approaches
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Effectiveness of Medications Prescribed for ASD Symptom Relief.
All Medication Treatment Approaches Should be Low dose and Slow
Type of
Medications
Stimulants
Alpha
Adenergics
Possibly
Effective
Possibly
Effective
SSRI’s
Remeron
AntiConvulsant
Mood
Stabilizers
Glutamatergi
cs
NeurolepicHaldol
Atypical
Antipsychotic
s Risperdol
only one
approved by
FDA for ASD
use
Target
Systems
Hyperactivity and
impulsivity
Occasionally
Effective
Explosivity
Aggressivity and Poor
Conduct Control
Occasionally
Effective
Perseveration,
Compulsive Behavior
and Stereotypic
Behavior
Occasionally
Effective
Occasionally
Effective
Possibly
Effective
Possibly
Effective
Occasionally
Effective
Psychotic Thinking
Occasionally
Effective
Social Isolation
Anxiety, Depression
and Self Injury
Possibly
Effective
Irritability and mood
instability
Occasionally
Effective
Sleeplessness
Occasionally
Effective
Occasionally
Effective
Occasionally
Effective
Occasionally
Effective
Occasionally
Effective
Possibly
Effective
Occasionally
Effective
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Side Effects Profile for Different ASD Medications
Stimulants
Alpha
Adenergics
SSRI’s
Remeron
AntiConvulsant
Mood
Stabilizers
Glutamatergics
NeurolepicHaldol
Atypical AntiPsychotics-Risperdol only one approved
by FDA for ASD use
Side Effects
Agitation and
Hypomania
Mild
Moderate
Suicidal
Thoughts
Mild
Sedation
Moderate
Weight Gain
Mild
Mild
Mild
Mild
Mild
Increase
Prolactin Effect
Significant
Mild
EPS
Severe
Higher Sugar
and Lipid
Profile
Moodiness
Moderate
Irritability
Moderate
Tics
Mild
Poor Appetie
Moderate
Poor Sleep
Moderate
Changed Pulse
Rapid
Slowed
Arrhythmia
Mid
Mild
Mild
Moderate
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NJ-ASD Slides (18-25)
ASD in Children Enrolled in New Jersey’s Behavioral Health System
of Care (n=215)
Age Distribution
18-21, 6%
0-4, 5%
Average Age = 11.7 years
5-10, 33%
14-17, 33%
Children 13 and under = 61%
11-13, 23%
Gender Distribution
within ASD sample
Gender Distribution within entire NJ System of Care
population – Male 63%, Female 37%
Female
24%
Male
76%
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ASD in Children Enrolled in New Jersey’s Behavioral
Health System of Care (n=215) con’t
Mental Retardation Distribution
Severe
20%
Average IQ = 59
Profound
4%
Mild
46%
71% of sample had an IQ below 70 and are
therefore Mentally Retarded (MR)
Moderate
30%
Common Co-occurring Axis 1 Diagnosis
(reported by providers of NJ Behavioral Health System of Care)
Anxiety Disorders
11%
Bipolar including Mood
Disorder NOS
17%
ADHD
41%
Disruptive Disorders
31%
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Challenges and Complexities
Challenges found on Assessment Tool & Chart History (n=215)
#
%
Developmental Disabilities
215
100%
Special Education
213
99%
Neurological Factors
202
94%
Fragile Medical
185
86%
Mental Health
180
84%
Psychotropic Meds
157
73%
Questionable Best Practice Meds by way of
Texas Algorithms
157
73%
Biological, Adoptive, Relative, Foster Parent or Guardian:
Abuse, Neglect, Medical Disorder, Psychiatric Disorder,
Developmental Disorder or Criminality
118
55%
Reaction to Trauma
112
52%
Protective Services
105
49%
Delinquency
31
14%
Substance Abuse
3
1%
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Challenges and Complexities
(continued)
Dangerousness Breakdown (n=215)
#
%
Dangerousness within study population
163
76%
Danger to Others
103
63%
Self-Mutilation
41
25%
Suicidal
39
19%
Sexual Aggression
20
12%
Firesetting
13
8%
Sub-Categories of Dangerousness
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Medical Features
(despite incomplete histories)
Medical Features of the 215 Children
#
%
Fragile Medical
184
86%
Speech delayed (age 3+), deafness, language board use
78
36%
Fetal Alcohol & Drug Syndrome
36
17%
Seizures (all types)
36
17%
Motor Delay (age 5+)
32
15%
NICU of one or more months or prematurity (35 or less weeks gestation)
22
10%
Respiratory Distress - Low APGAR w/cord strangulation or need for oxygen
respirator or tracheotomy in the newborn period, or sleep apnea
19
9%
Spina Bifida, Movement disorders, Tic disorders, CP, or hypotonia of nervous
system
17
8%
Asthma
14
7%
Chromosome Abnormalities or Severe Case syndromes)
16
7%
Congenital heart or heart rhythm disease with or without surgery or strokes
10
5%
Physical Trauma Pre-birth or Massive injury in the first 2 years
11
5%
Metabolic Problems (Thyroid - Diabetes & other)
11
5%
Eye Surgeries (Abnormalities or retinopathy)
9
4%
Obesity
6
3%
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Family Features
Family Features of the 215 Children
#
%
Percentage of Families with documented
features
119
55%
Physical and/or Sexual Abuse or Neglect
44
20%
Psychiatric Features
35
16%
Substance Abuse Features
33
15%
Physical Illness Features
25
12%
Chronic Stress (Exhaustion) Features
20
9%
Retardation Features
14
7%
Severe Separation or Divorce Conflict
10
5%
Criminal Features
8
4%
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ASD in Children Enrolled in New Jersey’s Behavioral Health System of Care
(n=215) con’t
Referral Source Breakout
Referred by Other
than State - OP or InHome Provider
16%
Due to the complexity of cases the
average time for key parties to
decide services and level of care or
placement is 23hrs
NJ Varying Dept's
and Agencies
53%
Referred by Other
than State Guardian
31%
Referred by State
(53% of total)
Family & Juvenile
Court -1%
Dept of
Children &
Families -44%
Dept of
Developmental
Disabilities 8%
Dept of Children & Families (DCF) Breakout
(44% of total)
Protective Services (DYFS)
18%
DCBHS Administration –
1%
DCBHS Mobile Response –
1%
DCBHS
Case Management
Organizations
24%
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Hard to Place ASD Children
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In state placement may not be possible because of
the combination of special needs. At one time 49
ASD children or 23% of total (215) were placed out
of state.
The problem of Sexual Aggression often leads to
Out of State Placement. Fourteen ASD children or
7% of the total (215) had this dangerous problem.
The same 14 children made up 29% of the ASD Out
of State population (49).
Out of state placements can create special needs in
visitation, state expenses and state staff
supervision.
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ASD Summary and Conclusion
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Early childhood onset
Chronic, extensive, pervasive neurologic disorders
Inclusive of more than one developmental domain
Conditions often exist on Axis I, II, and III
Diagnoses are rarely precise
The evaluation, diagnosis and treatment are
COMPLEX
Child psychiatrists and mental health professionals are
often involved after Pediatric, Developmental
Pediatric, and Pediatric Neurological professionals
Much of the intervention is conducted in educational
settings
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ASD Summary and Conclusion (continued)
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Cost of treatment is high. The funding is complex and often involves
federal early screening, diagnosis, and treatment funds; special
education (including speech, occupational and physical therapy) funds;
Medicaid; Medicaid Waiver funds; Medicare funds; and private
insurance funds where applicable.
Individual and adjustable treatment planning is important because of
growth potential and changes in treatment course. The latter includes
vocational training when needed.
A mature integrated system of care works best for an ASD child.
Continued and expanded research is needed in ASD because of its
confusing and complex nature. The federal government through the
2006 Combating Autism Act (CAA) has created a special Road Map for
ASD to gather all the different initiatives, and research proposals in all
federal departments and agencies involved through the Inter-Agency
Autism Committee. This committee will make a yearly report to
Congress on gains in the field of Autism.
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General References
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Summary of best practices and policy recommendations from NIMH Subcommittee:
http://www.nimh.nih.gov/autismiacc/summary.pdf
Autism and Hope, Symposium at the Brookings Institute, December 14, 2005:
http://www.brookings.edu/comm/events/20051216autism.htm#TRANSCRIPT
Dawson, G, Watling, R. (2000) Interventions to facilitate auditory, visual, and motor integration in Autism:
A review of the evidence. Journal of Autism and Developmental Disabilities, 30 No.5 415-422
Filipek, P.A. et.al. (1999) The screening and diagnosis of autistic spectrum disorders. Journal of Autism
and Developmental Disorders, 29, 439-484
Herbert, J. D. , Sharp, I. R. , Guadiano, B. A. (2002) Separating fact from fiction in the etiology and
treatment of Autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice
Lovaas, O. I. (1987) Behavioral Treatment and Normal education and intellectual functioning in young
autistic children. Journal of Consulting and Clinical Psychology 155, 3-9
Posey, D. J, McDougle C. J, Autism: A three-step practical approach to making the diagnosis; Current
Psychiatry Vol. 1, No. 7, July 2002, 20-28
Smith, T. , Groen, A. D. , Wynn ,J. W. (2000) randomized trial of intensive intervention for children with
pervasive developmental disorder. American Journal of Mental Retardation 105,285-296 . Erratumin
Americal Journal of Mental Retardation, 105,508 and 106, 208.
Smith, T. ,Lovaas, N. W. ,Lovaas O. I. (2002) Behaviors of children with high- functioning autism when
paired with typically developing versus delayed peers. Behavioral Interventions 17, 129-143
The National Autistic Society. Diagnostic options: a guide for health professionals:
www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3280
Asperger’s Disorder links: http://www.disabilityresources.org/ASPERGERS.html
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Resources for Families
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Resources are also available through the Center for Disease Control National
Center for Birth Defects and Developmental Disabilities, 1-800 - CDC-INFO and
online at: www.cdc.gov/ncbddd/autism/actearly/
Local resources can also be found by contacting the Autism Society of America
(ASA) at 1 -800 -3AUTISM or online at: www.autism-society.org.
To locate the appropriate resource in specific states, parents can call 1-800-6950285 or log on to the National Dissemination Center for Children with Disabilities
at: www.nichcy.org/
American Academy of Pediatrics:
http://www.keepkidshealthy.com/welcome/conditions/autism.html
National Institutes of Mental Health:
http://www.nimh.nih.gov/publicat/autism.cfm
Reaching for a Brighter Future: Service Guidelines for Individuals with Autism
Spectrum Disorders/Pervasive Developmental Disorders (ASD/PDD):
http://www.psychmed.osu.edu/AutismBook_1.pdf
Autism Society: http://www.autism-society.org
Learn the Signs – developmental milestones:
http://www.cdc.gov/ncbddd/autism/actearly/default.htm
Autism Research Institute: http://www.autismwebsite.com/ARI/index.htm
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