Introduction to Autism Spectrum Disorders (ASD) for Adult Service Providers

1. Introduction to Autism Spectrum Disorders (ASD) for Adult Service Providers Ann N. Garfinkle, PhD University of Montana

2. 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

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

4. ASD Defined

5. 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

6. Pervasive Developmental Disorders (PDD)—1980s (DSM III) CDD autism Aperger’s PDD-NOS Rhett’s

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

8. PDD-NOS • Stands for Pervasive Developmental Disorder-Not Otherwise Specified • Similar to autism, but without meeting all the criteria

9. 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

10. Core Deficits Communication Social Skills Restricted repetoire

11. Currently: Autism Spectrum Disorders (ASD) formerly Pervasive Developmental Disorders (PDD) (DSM IV-R) CDD autism Aperger’s PDD-NOS Rhett’s

12. Core Deficits with related disorders Gastro- intestinal dysfunction Sleep disturbances Motor problems (paraxial) EEG abnormality ADHD Social anxiety Social Skills Language delay Communication aggression ASD Cognitive delay Restricted repetoire OCD

13. 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

14. 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

15. 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

16. 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).

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

18. D. Symptoms together limit and impair everyday functioning

19. Reasons for New Diagnostic Criteria • Data-based • Easier diagnosis • Potentially more interventions

20. Controversy rising • Who will not be included • Access to treatment

21. 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

22. Autism Diagnosed

23. 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

24. 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

25. 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

26. 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)

27. 1 year old screening measures • Two measures being validates

28. 2 year old diagnosis • Heavily based on motor imitation skills • Stability in diagnosis through age 8 (at least)

29. 3 years and older • Many diagnostic tools-ADOS etc • Traditional DSM-IV criteria

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

31. Is ASD on the Rise? If so are there really more affected people or just more diagnosed?

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

33. Today’s Prevalence Data • 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

34. Currently, (nationally) • 70% of people diagnosed with ASD are UNDER the age of 14

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

36. Increasing ASD Prevalence • 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

37. What Causes ASD?

38. 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?)

39. 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%

40. Co-morbidityw/ know genetic basis • Fragile X syndrome • Rhetts • Tubular scholorsis • Angelsman Syndrome

41. New Animal Models • Mice models • Rat models

42. Current Funded Research • Genetic • Genetic plus environmental insult

43. 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

45. Is there a cure?

46. 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)

47. 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 (risperidonedecreases 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

48. What is ABA? • Applied Behavior Analysis • Applied, Behavioral, Analytic, Conceptual, Technological, Capable of Generalized Outcomes

49. Thank you! Ann.garfinkle@mso.umt.edu