Autism Spectrum Disorder (ASD)

1. 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.

2. 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

3. 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.

4. Epidemiology • ASD occurs inapproximately 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.

5. 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.

6. 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.

7. 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.

8. 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

9. 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

10. 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

11. 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 SchizotypalType - 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.

12. 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

13. 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

14. 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.

15. ASD Treatments Often Discussed and Current Evidence, Efficacy, and Risks

16. Effectiveness of Medications Prescribed for ASD SymptomRelief. All Medication Treatment Approaches Should be Low dose and Slow

17. Side Effects Profile for Different ASD Medications

18. NJ-ASD Slides (18-25)ASD in Children Enrolled in New Jersey’s Behavioral Health System of Care (n=215) Average Age = 11.7 years Children 13 and under = 61% Gender Distribution within entire NJ System of Care population – Male 63%, Female 37%

19. ASD in Children Enrolled in New Jersey’s Behavioral Health System of Care (n=215) con’t Average IQ = 59 71% of sample had an IQ below 70 and are therefore Mentally Retarded (MR)

20. Challenges and Complexities

21. Challenges and Complexities (continued)

22. Medical Features (despite incomplete histories)

23. Family Features

24. ASD in Children Enrolled in New Jersey’s Behavioral Health System of Care (n=215) con’t Referral Source Breakout Due to the complexity of cases the average time for key parties to decide services and level of care or placement is 23hrs Family & Juvenile Court -1% Dept of Children & Families -44% Dept of Developmental Disabilities 8% Protective Services (DYFS) 18% DCBHS Administration – 1% DCBHS Case Management Organizations 24% DCBHS Mobile Response – 1%

25. 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.

26. ASD Summary and Conclusion • Early childhood onset • Chronic, extensive, pervasive neurologic disorders • Inclusive of more than one developmental domain • Conditions often exist onAxis 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

27. 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.

28. 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

29. 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