1 Autism Spectrum Disorders (ASDs) Pervasive Developmental - PDF document

Autism Spectrum Disorders and the Role of Public Health April 17, 2008 Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification NAACHO Webcast April 17, 2008 Catherine Rice , Ph.D. Katie Kilker , MPH, CHES National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use. What is Autism? 1

Autism Spectrum Disorders (ASDs) Pervasive Developmental Disorders (PDD) PDD = an “umbrella category” Autism PDD-NOS (Atypical Autism) Asperger’s Syndrome Childhood Disintegrative Disorder Rett’s Syndrome 3 Core Areas Affected: ⇒ Reciprocal Social Interactions ⇒ Communication ⇒ Behaviors and Interests ------------------------------------------------------ Development in these areas follows a DIFFERENT path than that of most children. Differences are QUALITATIVE, not only the result of delays. What is Autism? • Developmental Disability not identifiable at birth • Neurological Disorder complex genetic interaction + ??? • Complex Disorder many areas affected • Wide Range of Impairment mild to severe across areas 2

ASD ASD Defies Generalization Measured Intelligence Severe-----------------------------------------------Gifted Social Interaction Aloof-----------------Passive-------------Active but odd Communication Nonverbal-------------------------------------------Verbal Behaviors Intense---------------------------------------------------Mild Sensory Hyposensitive-----------------------------Hypersensitive Motor Uncoordinated-------------------------------Coordinated Diagnosis • Based on observable behaviors • Pattern of development • Social, Communication, Behavioral Profile (DSM-IV Criteria) • Developmental history is important • There is no medical test to diagnose autism or related disorders • Rule out other disorders Myths of Autism • The child with autism… – Is not affectionate – Does not form attachments – Never makes eye contact – Does not communicate – Engages in self-stimulatory and repetitive behaviors all the time – Lack emotional experience 3

Issues of “Autism” Label • Rarely diagnosed before 3 years (improving) • Fear associated with “Autism” • Stereotypes of the person with autism • Boys and developmental milestones • “wait and see” approach • Subtler forms misdiagnosed • Access to services/treatment • Early and intense intervention makes a difference! What is Asperger’s Syndrome? • No delay in basic language skills, but communication may be impaired • Average to above average intelligence • Common issues as high-functioning autism • Pattern of unusual development in social interaction skills and behaviors • Impairment in daily functioning, despite skills • Often not diagnosed until 6+ years • Early diagnoses: ADHD, OCD, LD, NVLD Impact of ASD on Child • Inability or difficulty communicating – frustration • Reduced understanding of what is going on around them • Lack of interest or skill in interacting • Unusual play and learning • Unusual sensory reactions • Variable attention, activity level • Other medical issues or sensitivities (seizures, GI distress, allergies, etc.) • SAFETY (reduced awareness, reaction, and self- injury) 4

Impact of ASD on Family • Lack of support from other family members and community (know something is not going right) • Navigating system to get help – – Just getting recognition of a problem is often a challenge – Hard to get intense intervention – Long waits for diagnosis • Significant stress on parents and entire family • Siblings may also have difficulties, or must act as “caretaker” • Intense and complicated needs of child • Emotional and financial costs of identifying problem and getting support • Bombarded by options of interventions Concerns Over Numbers of People with Autism Low Incidence Disorder? Quarterly Trends in Number of Persons with Autism Added to the System (1994-2004) Past estimates of 4-5 per 900 Number Increased per Quarter 800 700 10,000 children with autism 600 Fourth Qtr 500 Third Qtr 400 Second Qtr 300 First Qtr 200 Service Provider Numbers: 100 0 1 2 3 4 5 6 7 8 9 10 11 show more people Year Number (1994 -2004) Number of Children with Autism Served under IDEA, Part B, 1992-93 to 2000-01, 6-21 years identified with an Autism $���" �� ��( ����) !���* ��� �+�" ����� Spectrum Disorder (ASD) ����� ����� ����� for services ����� ����� ����� ����� � ����� ����� ����� ����� ����� ����� ����� ����� ����� ���� ���� ���� ���� ���� ���� ���� ���� ���� ������ ������ ������ ������ ������ ������ ������ ������ ������ ��������������������������������� ����!"���#$�%�&' Public Health Model Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? 5

CDC Programs Specific to ASDs • Surveillance/Monitoring—Address questions on the prevalence/trends • Epidemiologic Research: Examine risk/protective factors • Prevention— “ Learn the Signs. Act Early. ” What’s in a Number? 1 in 10,000 4-5 in 10,000 1 in 1,000 1 in 500 1 in 200 1 in 166 1 in 150 What’s in a Number? How do we know who is affected? • It is clear that more children are identified with an Autism Spectrum Disorder (ASD) than in the past. – Children receiving services under a specific classification – Children diagnosed in a medical or clinical setting • Who else may have the condition(s)? – Little population-based data of the features of ASDs • Population screening – Direct screening – who participates? – Records-based screening 6

Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) – Ongoing, active monitoring program since 1991 – 5 counties of metro Atlanta – Multiple sources (educational, clinical, service sources) – 5 Disabilities: • Mental Retardation/ Intellectual Disability • Cerebral Palsy • Hearing Loss • Vision Impairment • Autism Spectrum Disorders (since 1996) How do the prevalence of ASDs compare with other DDs? MADDSP Prevalence of Developmental Disabilities per 1,000 8-year-olds in 2000 Intellectual Disabilities 12.0 Autism 6.5 Cerebral Palsy 3.1 Hearing Loss 1.2 Vision Impairment 1.2 Karapurkar-Bhasin, Brocksen, Avchen, Van Naarden Braun. Prevalence of four developmental disabilities among children aged 8 years - the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000. MMWR SS 2005;55;1–9. Prevalence of MR, CP, HL, VI and ASDs Among Children in MADDSP 8 year olds (1991-1994, 1996, 2000, 2002) Mental Retardation Cerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders 1.20412 16.0 15.5 13.2 13.0 13.0 12.8 12.0 10.6 0.90309 8.0 7.6 6.5 Prevalence per 1,000 0.60206 4.2 4.0 3.8 3.6 3.5 3.4 3.1 2.9 2.9 2.0 0.30103 1.4 1.4 1.4 1.5 1.4 1.2 1.3 1.1 1.1 1.0 0 1.0 0.9 1.0 0.5 -0.30103 1991 1992 1993 1994 1996 2000 2002 Surveillance Year 7