Autism Spectrum Disorder ASD (PowerPoint)

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					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.



                                                     1
                   Objectives

   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



                                                   2
                          Definition
   ASD is a biologically based disorder of
    neurodevelopment. The deficits are as follows:
       Reciprocal social interaction
       Communication impairments
       Stereotyped and compulsive behavior patterns, activity
        patterns, or interest patterns
   ASD is a lifelong developmental, neurological
    disability that affects:
       Speech and language
       Social relationships
       Psychological functioning
       Development of cognition, emotions and behaviors
   Co-occurring disorders are frequently present with
    ASD.
                                                                 3
                        Epidemiology
   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:
       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.



                                                                         4
                       Early Screening
   The American Academy of Pediatrics stresses the use
    of an ALARM in-office approach:
       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.

                                                                 5
             Early Screening (continued)
   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.
       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.



                                                                                        6
                 Diagnostic Assessment
   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.




                                                                                   7
            Psychological Assessment
   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 Non-
      Verbal Intelligence) that have to be adjusted down in scoring


                                                                       8
       Medical Alternative Diagnosis and or
       Co-Occurring Disorders with ASD
   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




                                                       9
         Psychiatric Alternative Disorders or
         Co-Occurring Disorders with ASD
   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


                                                                  10
    Psychiatric Disorders Not Co-Occurring
                   with ASD
   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.


                                                                    11
    The Possible Strengths of an ASD Child
   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



                                                                        12
            Care and Case Management
   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.
       Developmental Pediatrics Office with possible care management
       Pediatric Neurology office
       Child Psychiatry office




                                                                               13
    Care and Case Management (continued)
   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.


                                                                           14
 ASD Treatments Often Discussed and Current Evidence, Efficacy, and Risks

      Intervention          Evidence Basis         Risks Reported              Lead Professional                 Comments
Applied Behavioral         Controversial and   Overuse; high financial    Special                     Requires a coordinated team, a
Analysis (ABA)                   non-                risk; extended             Education/Psycholog         trained parent, and a
                                 replicable          timeframes and             ist                         credentialed ABA
                                                     non-delineated                                         Therapist; better than
                                                     ages                                                   traditional psychotherapy
                                                                                                            for changing abnormal,
                                                                                                            maladaptive behaviors


Chelation                  None                Significant                MD                          Mostly Testimonial

Intravenous                None                Significant                MD                          Mostly Testimonial
       Immunoglobulin

Dimethyl glycine           None                unclear                    MD or nutritionist          Mostly Testimonial

B6-Magnesium               None                unclear                    MD or nutritionist          Some attempts at controls

Casein and gluten-free     None                Can make dietary OCD       MD or nutritionist          The wrong child can get worse
      diet                                          even worse

Secretin Enzyme            None                GI Problems                MD or nutritionist



Cranio-sacral Therapy      None                Can cause spinal           Chiropractor
                                                     complications with
                                                     incorrect
                                                     manipulation
Speech and Language        None alone          None reported              Speech and Language         May be useful as ancillary
      Therapies                                                                 Therapists                 treatment approaches
      including Auditory
      and Sensory
      integration, Sign
      Language



                                                                                                                                        15
                         Effectiveness of Medications Prescribed for ASD Symptom Relief.
                        All Medication Treatment Approaches Should be Low dose and Slow

                          Stimulants     Alpha          SSRI’s        Remeron         Anti-        Glutamatergi   Neurolepic-       Atypical
Type of                                Adenergics                                   Convulsant          cs          Haldol       Antipsychotic
Medications                                                                           Mood                                        s Risperdol
                                                                                    Stabilizers                                     only one
                                                                                                                                 approved by
                                                                                                                                 FDA for ASD
                                                                                                                                      use

Target
Systems
Hyperactivity and         Possibly      Possibly                                                                                 Occasionally
impulsivity               Effective     Effective                                                                                 Effective


Explosivity                                           Occasionally                  Occasionally                                   Possibly
Aggressivity and Poor                                  Effective                     Effective                                     Effective
Conduct Control


Perseveration,                                        Occasionally                                                                 Possibly
Compulsive Behavior                                    Effective                                                                   Effective
and Stereotypic
Behavior

Psychotic Thinking                                                                                                Occasionally   Occasionally
                                                                                                                   Effective      Effective


Social Isolation                                      Occasionally                                 Occasionally
                                                       Effective                                    Effective


Anxiety, Depression                                    Possibly      Occasionally                                                Occasionally
and Self Injury                                        Effective      Effective                                                   Effective


Irritability and mood                                 Occasionally                                                                 Possibly
instability                                            Effective                                                                   Effective


Sleeplessness                          Occasionally                                                                              Occasionally
                                        Effective                                                                                 Effective
                                                                                                                                          16
                                Side Effects Profile for Different ASD Medications

                   Stimulants     Alpha       SSRI’s    Remeron     Anti-       Glutamatergics   Neurolepic-                Atypical Anti-
                                Adenergics                        Convulsant                       Haldol      Psychotics-Risperdol only one approved
                                                                    Mood                                                 by FDA for ASD use
                                                                  Stabilizers
  Side Effects

 Agitation and       Mild                    Moderate
  Hypomania

   Suicidal                                    Mild
   Thoughts

   Sedation                     Moderate                 Mild                                                                  Mild

 Weight Gain                                             Mild        Mild                           Mild                    Significant

   Increase                                                                                                                    Mild
Prolactin Effect

     EPS                                                                                           Severe                      Mild

 Higher Sugar                                                                                                                Moderate
  and Lipid
    Profile
  Moodiness        Moderate

  Irritability     Moderate

     Tics            Mild

 Poor Appetie      Moderate

  Poor Sleep       Moderate

Changed Pulse        Rapid       Slowed

 Arrhythmia           Mid         Mild




                                                                                                                                               17
                         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
14-17, 33%                         5-10, 33%
                                                  Children 13 and under = 61%


                    11-13, 23%




                  Gender Distribution
                  within ASD sample

                                               Gender Distribution within entire NJ System of Care
             Female                            population – Male 63%, Female 37%
              24%




                                   Male
                                   76%
                                                                                               18
ASD in Children Enrolled in New Jersey’s Behavioral
       Health System of Care (n=215) con’t

   Mental Retardation Distribution
                                                 Average IQ = 59

  Severe
             Profound
                4%
                                                 71% of sample had an IQ below 70 and are
   20%
                                     Mild
                                                 therefore Mentally Retarded (MR)
                                     46%




  Moderate
    30%




                                 Common Co-occurring Axis 1 Diagnosis
                         (reported by providers of NJ Behavioral Health System of Care)


                                       Anxiety Disorders
                                             11%
                        Bipolar including Mood                       ADHD
                            Disorder NOS                              41%
                                  17%



                                      Disruptive Disorders
                                              31%


                                                                                            19
      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%




                                                                                         20
Challenges and Complexities
        (continued)
   Dangerousness Breakdown (n=215)                               #     %

   Dangerousness within study population                         163   76%

      Sub-Categories of Dangerousness

                                            Danger to Others     103   63%

                                               Self-Mutilation   41    25%

                                                     Suicidal    39    19%

                                           Sexual Aggression     20    12%

                                                  Firesetting    13    8%




                                                                             21
                               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%




                                                                                      22
                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%


                                                      23
          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 In-
                       Home Provider
                                                                                         Due to the complexity of cases the
                            16%                                                            average time for key parties to
                                                                                         decide services and level of care or
                                                               NJ Varying Dept's
                                                                                                 placement is 23hrs
              Referred by Other                                  and Agencies
                 than State -                                        53%
                   Guardian
                     31%
                                                                                             Referred by State
                                                                                                (53% of total)


                                                                                                                      Family & Juvenile
                                                                 Dept of                                                 Court -1%
                                                                Children &
                                                               Families -44%



                                                                                                                    Dept of
                                                                                                                 Developmental
                     Dept of Children & Families (DCF) Breakout                                                  Disabilities 8%
                                             (44% of total)
             Protective Services (DYFS)

                        18%

 DCBHS Administration –
         1%
                                                                                DCBHS
                                                                           Case Management
                                                                             Organizations

                                                                                   24%
DCBHS Mobile Response –                                                                                                                   24
        1%
       Hard to Place ASD Children

   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.


                                                      25
       ASD Summary and Conclusion
   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

                                                          26
    ASD Summary and Conclusion (continued)
   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.




                                                                             27
                            General References
   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




                                                                                                               28
Resources for Families

   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-
    695-0285 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

                                                                                 29