Understanding Autism in the Context of Screening: Where Do We Go From Here ?

1. Understanding Autism in the Context of Screening: Where Do We Go From Here? Ann M. Mastergeorge CIHS/First5 Special Needs Project Consultant UC Davis/M.I.N.D. Institute

2. Overview and Objectives To identify typical development and atypical early indicators of concern for autism-risk. To understand best practice guidelines for screening for at-risk behaviors/autism. To establish rapport and trust with families in the screening process. To develop consistent referral pathways for children with autism risk in screening.

3. Overview and Objectives To identify typical development and atypical early indicators of concern for autism-risk To understand best practice guidelines for screening for at-risk behaviors/autism. To establish rapport and trust with families in the screening process. To develop consistent referral pathways for children with autism risk in screening.

4. 4 MONTHS 6 MONTHS Follow and react to bright colors, movement, objects Turn toward sounds Show interest in faces Reciprocal smiling Relates to others with joy Smile often Coos or babbles when happy Cries when unhappy Key Developmental MilestonesFirst Signs, Inc. (2004) Key Social, Emotional, and Communication Milestones for Your Baby’s Healthy Development

5. 9 MONTHS 12 MONTHS Smile/laugh while looking at you Exchange back and forth sounds Exchange back and forth gestures: give, take, reach Use repeated gestures (give, show, reach, wave, point) Play peek-a-boo, patty cake, other social games Making sounds and single word approximations Turn to person when his/her name is called Key Developmental Milestones

6. 15 MONTHS Many back-and-forth smiles, sounds, gestures Uses pointing or “showing” gestures to gain attention to something of interest Uses different sounds to get needs met and draw attention to interests Use and understand at least three words (“mama”;”dada”; “bye-bye”; “bottle” Key Developmental Milestones

7. 18 MONTHS Use lots of gestures with words (e.g. pointing and says “want juice” Use lots of consonant sounds in single word approximations/words Uses and understands at least 10 words Shows/knows the names of familiar people or body parts Engage in simple pretend play (feeding a doll, putting doll to sleep) Key Developmental Milestones

8. 24 MONTHS Pretend play with more than one action (feed doll and put doll to sleep) Use and understand at least 50 words Use at least two words together (without imitation and repetition) and in a way that makes sense (e.g., “want juice”) Enjoy being next to children of same age, show interest in playing with them, giving toy to another child Look for familiar objects out of sight (when asked) Key Developmental Milestones

9. 36 MONTHS Enjoys pretend play (play different characters talking for dolls or action figures Enjoys playing with children same age Using language to convey thoughts and actions (“sleepy, go take nap”) Answer “what,”; “where”, and “who” questions easily Talks about interests and feelings about the past and future Key Developmental Milestones

10. Common Presenting Features of Autism Spectrum DisordersFrom First Signs, Inc. (2004) Key Social, Emotional, and Communication Milestones for Your Baby’s Healthy Development • Unusual Stereotypic Behaviors • Sensory Aversions • Physiological Concerns • Other Concerns

11. Little or no eye contact Does not respond to name Has a language delay Does not share interest in object or activity with a preferred adult Displays rigidity and gets stuck on certain activities Expresses insistence on sameness and resistance to change Inappropriate play or behavior demonstrated Tantrums easily Unusual motor behaviors or motor planning Odd hand and finger mannerisms Lines up toys or objects in obsessive manner Lacks ability to play with toys Prefers to be alone Likes to spin self or objects Uses repetitive words or phrases (echolalia) Displays self-injurious behaviors Acts as if deaf Lacks normal fear Displays and flapping and/or toy walking Rocks or bangs head Arches back Unusual Stereotypic Behaviors

12. Sensory Aversions • Over-or-under reactive sensory input • touch, sound, taste, sight, hearing • Over-arousal and regulatory issues • Difficulty processing sensory information

13. Large head circumference Regression or loss of skills Low muscle tone Frequent ear infections Difficulty sleeping or unusual sleep patterns Dysmorphic features Frequent gastrointestinal issues (reflux, stomach pains, diarrhea, constipation) Very picky or unusual eating habits Rigid preference for certain foods (dairy, gluten) Other co-morbid disorders (mental retardation, seizures, hyperactivity, immune dysfunction, anxiety, depression, OCD, etc.) Physiological Concerns

14. Other Concerns • Sibling of a child with autism spectrum disorder • Familial presence of other warning signs

15. The Basics of Autism • Onset during first 3 years of life • Chronic lifelong course • Male:female ratio = 4:1 • Underlying neurological dysfunction • Genetic factors in etiology • Spectrum of severity

16. Spectrum of Autism Severity • Kanner’s Description • Leo Kanner (1943) classic paper • Description of 11 children with previously undescribed syndrome • Characteristics • Inability to relate to others • Failure to use language to convey meaning • Obsessive desire for the maintenance of sameness • Anxiety • Congenital onset • Co-morbidity • Observations to empirical support

17. Increasing Prevalence • Autism, strictly defined • 4-6 in 10,000 prior to 1980’s (Lotter 1967) • 16-20 in 10,000 today (Chakrabarti & Fombonne 2001) • Autism spectrum disorders • 10 in 10,000 in 1990’s (Bryson et al 1988) • 60-70 in 10,000 today (Chakrabarti & Fombonne 2001)

18. Clinical Features • Five specific spectrum diagnoses used by DSM-IV: • Autistic disorder • Asperger disorder • Rett disorder • Childhood disintegrative disorder • Pervasive developmental disorder-NOS

19. The Autism Spectrum • Milder disorders • Asperger syndrome • Fewer symptoms, no language delay • Pervasive Developmental Disorder-NOS • Sub-clinical manifestations • The broader autism phenotype in family members • Language delay • Shyness, social reticence • Rigidity, focused interests

20. DSM-IV Core Characteristics: Criteria for Autistic Disorder • Deficits in reciprocal social interaction • Impairments in verbal and nonverbal communication • Restricted, repetitive or stereotyped behaviors and interests

21. Meeting Criteria For Autism • Individual must demonstrate at least 6 of the 12 symptoms • At least 2 symptoms from the social domain • At least 1 symptom from communication domain • At least 1 symptom from the restricted behaviors/interest domain • At least 1 symptom must have been present before 36 months of age

22. DSM-IV Social Symptoms • Failure to use nonverbal behaviors to regulate social interaction • Eye contact, facial expression, gesture, intonation, posture • Impairments in peer relationships • Lack of sharing interests and attention with others • Limited social-emotional reciprocity

23. DSM-IV Communication Symptoms • Delay in or total lack of development of language • Unusual language • Echolalia, neologisms, pedantic speech • Poor reciprocity, turn-taking in conversation • Limited pretend play and imitation

24. DSM-IV Stereotyped/Repetitive Behavior Symptoms • Circumscribed interests-narrow in focus • Insistence on sameness, nonfunctional rituals and familiar routines • Unusual motor behavior/mannerisms • Odd toy and object use, focus on sensory features; preoccupation with parts of objects

25. Since Kanner: What Do We Know? • Autism is a Spectrum Disorder • Autism Spectrum Disorders are Not Rare • Autism is a Developmental Disorder • Autism is a Neurodevelopmental Disorder with a Biological Basis • Autism Can be Identified Early

26. Autism is a Spectrum Disorder • Range of potential manifestations • addition to DSM-IV Asperger syndrome diagnosis • Individuals with normal intelligence without marked impairments in structural language • Individuals with severe mental retardation with autism • Complex diagnostic features and range of manifestations

27. Autism Spectrum Disorders Are Not Rare • Increase in prevalence • 3-4 times higher than suggested in 1970s • 1.5 times higher than thought in 1980s and 1990s • Proposed explanations: • Better identification • Sensitive diagnostic tools • Broader classification systems • Environmental factors

28. Autism is a Developmental Disorder • Accurate diagnosis of autism required significant knowledge of typical development in the following areas: social, communication, cognitive skills, and play skills. • Understanding developmental profiles: must know what is typical for development and atypical for development at any age.

29. Autism is a Neurodevelopmental Disorder with a Biological Basis • Genetic factors • Recurrence risk for autism after the birth of one child with disorder is 3-6% • Concordance rate for autism in monozygotic twins is 60% (and up to 90% when social and communication abnormalities included) • Genome projects and molecular genetic studies • Broader Phenotype factors • Organic Brain Disorder • fMRI, MRI studies demonstrate: increased head circumference, brain volume, brain region deficits

30. Autism Can Be Identified Early • Most common initial symptom reported by parents is delayed (or abnormal) speech development • Social-communicative abnormalities in the first and second year of life: • Eye contact • Social referencing • Imitation • Orientation to name • Shared attention and affect • Early recognition and identification of autism-->early behavioral markers of autism

31. Overview and Objectives To identify typical development and atypical early indicators of concern for autism-risk 2. To understand best practice guidelines for screening for at-risk behaviors/autism. 3. To establish rapport and trust with families in the screening process. 4. To develop consistent referral pathways for children with autism risk in screening.

32. Key Screening Questions • How can sensitive information be shared with families when concerns arise during the screening process? • What are ways to remain supportive and family-centered throughout the screening, child study team, referral and linkage process? • What strategies, techniques and tools are available as resources?

33. Decision Tree Areas of Focus

34. Screening results are consistent with typical development. No signs of developmental delays or risk factors identified. Screening results are consistent with typical development; however, presence of risk factors. Screening results indicate a possible delay or disorder. Risk factors may be identified. Routine monitoring Referral for services and supports & heightened monitoring Assessment, referral for services and supports as needed, & heightened monitoring Screening Results

35. Building on What We Know: The Critical Role of the Screener • Introduces the family to the Special Needs Project • Establishes a relationship with the family • Gathers information about the family • Opens the door to services and supports • Sets the tone for follow-up and follow through on recommendations

36. Best Practices for the Process • Work with families during screening • Inform families about the screening results • Work with families to decide on possible services • Support families in accessing services • Link families to services

37. Best Practices (cont.) • Follow up to see if services were accessed • Provide ongoing support throughout the services • Support the family in coping with identified concern • Monitor services for the child • Monitor and assess the need for additional services

38. Integrating Infant Family & Early Mental Health Approaches • Relationship-based approach to services. • Strength-based approaches to services. • Parallel process: modeling a supportive relationship. • Reflection with the family.

39. “Parents and other regular caregivers in children’s lives are “active ingredients” of environmental influence during the early childhood period. Children grow and thrive in the context of close and dependable relationships that provide love and nurturance, security, responsive interaction, and encouragement for exploration. Without at least one such relationship, development is disrupted and the consequences can be severe and long lasting. If provided or restored, however, a sensitive caregiving relationship can foster remarkable recovery” From Neurons to Neighborhoods, National Research Council and Institute of Medicine (2000, p.7).

40. Integrating Infant Family & Early Mental Health Approaches (con’t) • Infant mental health encompasses a continuum of approaches in working with young children and their families. • Pyramid of three approaches: • Promotionof healthy social and emotional development • Prevention-intervention of mental health difficulties • Treatment of mental health conditions in the context of their families

41. Pyramid Promoting Healthy Social and Emotional Development Treatment Prevention-Intervention Promotion

42. Promotion of Healthy Social and Emotional Development • Provide information about social-emotional development in the context of caregiving relationships. • Disseminate information about early foundations for school readiness and apply examples to their children. • Talk routinely about social and emotional milestones as part of developmental anticipatory guidance. • Integrate infant mental health concepts into trainings for personnel working with young children and their families.

43. Prevention-Intervention • Screening and assessment of social and emotional development as part of early identification process • Carefully listening to families to help them identify, clarify, and address issues that may be affecting the developing relationship with their child. • Working with community mental health and public health providers when there is concern. • Assisting parents/caregivers to understand and respond sensitively to the cues the child gives. • Supporting families as they increase their coping skills and build resilience in their children. • Consulting with parents through relationship-based practice to promote the parent-child relationship.

44. Treatment • Assisting eligible children to access mental health providers for appropriate diagnostic treatment services within the family context. • Maintaining collaborative relationship between the parent/caregiver. • Creating or adapting models for cross-disciplinary work between mental health and early intervention providers.

45. Overview and Objectives To identify typical development and atypical early indicators of concern for autism-risk 2. To understand best practice guidelines for screening for at-risk behaviors/autism. 3. To establish rapport and trust with families in the screening process. 4. To develop consistent referral pathways for children with autism risk in screening.

46. Collaboration with Families Infant mental health defined as developing in the context of family: “the developing capacity of the child from birth to age 3 to experience, regulate and express emotions; form close and secure interpersonal relationships; and explore the environment and learn--all in the context of family, community, and cultural expectations for young children. Infant mental health is synonymous with healthy social and emotional development.”(From ZERO TO THREE)

47. Family/Professional Collaboration • Shared goals: promotes relationship in which family members and professionals work together to ensure quality services for child and family. • Mutual respect: recognizes and respects knowledge, skills and experience that families and professionals bring to the relationship. • Trust: development of trust is an integral part of a collaborative relationship. • Open communication: facilitates open communication so families and professionals can feel free to express themselves. • Culturally sensitive: creates an atmosphere in which cultural traditions, values and diversity of families are acknowledged and honored. • Negotiation: essential in a collaborative relationship. • Mutual commitment: brings mutual commitment of families, professionals, and communities to meet the needs of children. Bishop, K. (1993). Family/professional collaboration for Children with special health needs and their families.

48. Family/Professional Collaboration Shared Partnership “If we are to be successful with families,we are going to need to re-orient as professionals. We are going to need to look to parents as leaders, parents as the experts, parents as the bosses. We are going to need to ask them to join us cooperatively as equals in this partnership so that we create a reality that matches what all of us want to see.”

49. Collaboration with Families • Effective skills and strategies: • Building relationships • Meeting with infant/child and parent together • Sharing observation of infant’s/child’s growth and development • Helping the parent find pleasure in the relationship with the infant/child • Allowing the parent to take the lead in the discussion • Identifying capacities that parent brings to care of infant/child • Remaining open, curious, and reflective

50. Overview and Objectives To identify typical development and atypical early indicators of concern for autism-risk 2. To understand best practice guidelines for screening for at-risk behaviors/autism. 3. To establish rapport and trust with families in the screening process. 4. To develop consistent referral pathways for children with autism risk in screening.