11/6/2016 Early Identification of Autism Objectives for Today - PDF document

11/6/2016 Early Identification of Autism Objectives for Today Spectrum Disorder: Present and Future Directions Participants will be able to:  Recognize the importance of early identification of Elizabeth Crais, Ph.D., CCC-SLP children with autism spectrum disorder (ASD). Division of Speech & Hearing Sciences  Recognize early behaviors that indicate risk of ASD. Department of Allied Health Sciences  Describe screening processes used to indicate risk of ASD. Medical School  Identify barriers to ASD screening, referral, and diagnosis University of North Carolina at Chapel Hill in NC.  Identify potential future directions in NC to enhance ASD UNC School of Social Work 2016-2017 Clinical Lecture Series services. FOCUS ON FAMILY AND DISABILITY SEMINARS November 8, 2016 Where We’re Going Today What is Autism Spectrum Disorder and How Does it Differ From Autism?  Current diagnostic framework for ASD  Autism once viewed as subtypes (Autistic Disorder,  Barriers to early identification of at-risk children Pervasive Developmental Disorder, Asperger’s, High  Early behaviors indicating risk Functioning Autism)  What are they?  Researchers and clinicians have found it hard to distinguish between these groups  When do they appear?  Surveillance and screening for ASD in infants and  Diagnostic and Statistical Manual 5 (2013) now identifies one disorder = Autism Spectrum Disorder toddlers  Children/Individuals viewed on spectrum  North Carolina barriers to accessing services  Some advocates prefer term “Autism” or “Autistic” to  Ideas for what enhancements NC could make avoid “disorder”  Available resources  Discussion Diagnostic and Statistical Manual of the American Factors in ASD Identification Psychiatric Association – Fifth Edition (DSM-5), 2013  Two broad domains of diagnostic symptoms  Continued rise in prevalence of ASD diagnosis (1/68 in  Social-communication U.S., 1/42 boys, 1/189 girls; 1/59 in NC ; CDC, 2016)  Restricted and repetitive behaviors and interests (RRBIs,  Boys out number girls 4:1 includes sensory features)  No expectation of differences in prevalence across  Individuals with ASD vary on multiple dimensions racial, ethnic, geographic groups (U.S. vs other  Severity of symptoms – level of support needed associated countries), but there are differences in identification with each symptom domain  High likelihood that range of professionals will see toddlers with ASD pre-diagnosis  Co-morbid diagnoses or associated characteristics – intellectual deficits, ADHD, language delay/disorder,  Growing body of research on ASD in children age two sensory, repetitive behaviors, etc. years and younger  Potential for very early identification & intervention  Diagnosis of ASD should be accompanied by specification of levels of support needed in each symptom domain, and other diagnoses & characteristics, etc. 1

11/6/2016 How Early is ASD Typically Diagnosed? Disparities in Prevalence of ASD Diagnosis Pre-DSM-5 categories for 8 year olds (CDC, 2016)  Prevalence in 8 year olds:  White, non-Hispanic: 1/65 Mean Age of Diagnosis 80  African-American: 1/75 74 M 60  Hispanic: 1/99 40 50 M 49 M  Substantial numbers of children (especially 20 those from underrepresented groups) 0 Aut Dis PDD-NOS Asperger's continue to miss the opportunity for early intervention Fewer than half of children with ASD identified in their communities by age 5 (Maenner et al., 2013) (CDC, 2016) Statement of Need Barriers To Early ID  Early screening is critical to the well-being of families  Relatively “late” identification has made it difficult – Prevents secondary consequences of late entry into to follow children from early ages to know course EI services & social isolation of early development – Addresses mission of effective health care for NC families  Difficulty identifying behaviors that could be – Growing underserved populations nationally markers for signs of ASD vs other disabilities  Need to translate research into viable clinical practice  Need to look for both absence of typical models. behaviors and presence of atypical behaviors – Few efforts to screen for ASD in infancy (before 18 months)  Limited knowledge of developmental course of – Primary care providers are increasing ASD behaviors that may be common in young children screening efforts, but not enough to identify all at- (e.g., repetitive movements, mouthing) risk children early Social Communication/Interaction Impairments Infants and Toddlers may show: Less responsiveness to people’s overtures  Early Social- Lack of response to name  Communication Atypical eye contact (more aversion, less looking at  Symptoms face/eyes & at others) Limited interest in other children  2

11/6/2016 Social Communication/Interaction What Do Parents Describe? Impairments (continued)  Limited interest in reciprocal/social games like peek-a-  May describe child as affectionate - this does not rule boo (unless tickle & chase & roughhouse) out ASD!  Less likely to draw others into play  Often hear child described as “in his own world”.  May not want parents to do things with them (e.g.  Limited facial expressions read books)  Parents may consider child is hearing impaired.  Poor or limited imitation of others  Differences between “shy” children and ASD .  Simple pretend play not emerging Social Communication/Interaction Social Communication/Interaction (continued) Impairments (continued) Joint Attention (RJA and IJA)  No showing, giving, or pointing to share interest  Delayed speech/language  compared to other children with DD but may give to Loss of acquired words  get things to happen (Watson, Crais, et al., 2013) Fewer social gestures (wave bye, patty-cake, nodding  Doesn’t attract attention to own activities  head) than children with other DD Use of another’s hand as a tool  Echolalia/stereotyped speech  Unusual rhythm, intonation of speech  Attention to Eyes Across First two Years Restricted/Repetitive Behaviors, Interests or Activities  Unusual or repetitive play Jones & Klin (2013)  Interest in parts of objects  Attachment to unusual objects  Repetitive, stereotyped movements  Unusual sensory interests  Insistence on sameness 3

11/6/2016 Other ASD concerns Screening Guidelines (AAP, 2007)  Over and/or under reaction to sensory stimuli  Surveillance at every visit (developmental updates) (hyper-responsive, hypo-responsive)  Four risk factors for surveillance:  More children with ASD (than children with other  Sibling with ASD DD) have mixed pattern, also more with ASD have  Parent concern, inconsistent hearing, unusual hypo-responsive pattern responsiveness  Irregular sleep-arousal rhythms  Other caregiver concern  Picky eaters/gastro issues  Pediatrician concern  Specific inquiries about social-emotional milestones (Baranek et al., 2006; Rogers et al., 2003; Watson et al. 2011; Wiggins et al., 2009) Surveillance & Screening: Why Not Just Surveillance? AAP Guidelines Follow-up  Evidence suggests that action on these concerns is  Two or more risk factors  parent education, referral for often delayed (“wait & see”) ASD evaluation & EI services, follow-up visit  Absence of a concern doesn’t mean there is not a  One risk factor, <18 months  evaluate social- problem communication development  Some parents report concerns, others not sure what “red flag” behaviors are or how to interpret their child’s  One risk factor, >18 months  use ASD specific screener behaviors  ALL children at 18 & 24 months  use ASD specific  The younger the child, the harder to recognize the red screener (but no ASD screener recommended) flags without a standardized tool  Any positive screen  parent education, referral for ASD  Considerable evidence that surveillance alone results in evaluation & EI services, follow-up visit under-referral of young children with DD including ASD Parent & Physician Recognition of Parent & Physician Recognition of Concerns First Concerns  Mean time delay of 5.2 months from first concerns to consultation with a professional (Guinchat et al., 2012)  Parent initial concerns (Chawarska et al., 2007)  Time lag of more than 3 years (mean = 39. 3 months) before • 14.7 months for Autism diagnosis (Guinchat et al., 2012)  20% at <11 m  36% at 11-18 m (56% of families by 18 months)  Pediatrician made observations of autistic-like behaviors in children later diagnosed (Niehus & Lord, 2006)  44% at >18 m 10% of children with ASD during 1 st year • Types of concerns 59% of children with ASD during 2 nd year (only ½ referred)  Language & speech 71%  Social difficulties 61%  Number of professionals consulted was positively correlated  Medical problems/motor delays 29% with parents’ stress (Moh & Maaliati, 2012)  Stereotyped behaviors 17%  Extent parents engaged as collaborative partners in process negatively correlated with stress (Moh & Maaliati, 2012) 4