First Concerns. Wh at if I (o r t h e pa r e n t s) h av e c o n c e r n s a b o u t a pat i e n t? 10 Toolkit for Medical Professionals

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10 Toolkit for Medical Professionals 1 First Concerns Wh at if I (o r t h e pa r e n t s) h av e c o n c e r n s a b o u t a pat i e n t? Remember that the AAP guidelines now indicate that all children should be screened for an ASD at their 18 and 24 month well-baby checks (Johnson, Myers, 2007). If you think you may have a patient with an ASD, begin with a Phase 1 screening. Ask about caregiver concerns (see page 12) Probe for age-appropriate skills in each developmental domain Use direct observation Remember absolute indicators for immediate evaluation include: No babbling by 12 months No gesturing (e.g., pointing, waving bye-bye ) by 12 months No single words by 16 months No spontaneous 2-word (non-echolalic) phrases by 24 months Loss of any language or social skills at any age. If there are concerns from the check or the child demonstrates the absolute indicators, you may want to administer an autism screen: The Checklist for Autism in Toddlers (Baron-Cohen et al., 1996) The Modified Checklist for Autism in Toddlers (Robbins, Fein & Barton, 1999; see page 16) Social Communication Questionnaire (formerly the Autism Screening Questionnaire; Berument, Rutter, Lord, Pickles, & Bailey, 1999 ). Refer those at risk for an evaluation with ASD experts, otherwise referred to as a Phase 2 screening (Filipek et al., 1999). Some referral sources are listed within this toolkit (see page 22) The most conservative method would be to refer at any sign (i.e., see Autism Screening Poster, page 18) for further evaluation.

Section i 11 What is an Autism Spectrum Disorder? Autism Spectrum Disorders is the popularized and lay-term for referring to the disorders referred to in the medical/clinical literature as Pervasive Developmental Disorders (PDDs), with impairments in: Functional communication Reciprocal socialization skills Repetitive behaviors, interests, and activities Autistic Disorder Impaired social skills Impaired communication skills Presence of stereotyped or repetitive behavior Symptoms presents by age 3, diagnosed as young as 2 years Asperger s Disorder Impaired social skills Repetitive behaviors No significant languaged or cognitive delays PDD-NOS Impaired social skills AND Either Impaired communication skills OR Repetitive behaviors AND Not enough symptoms to diagnose another ASD PDD-NOS is NOT the same as PDD, which is the umbrella term for the spectrum of 5 disorders Rett s Disorder Apparently normal development until 5 months with loss of skills after 5 months Social disengagement Poor coordination Severe language impairments Presence of repetitive behavior (especially hand-wringing) Ch i l d h o o d Di s i n t e g r at i v e Di s o r d e r Apparently normal development until 2 years Loss of skills (e.g., language, adaptive behavior) Impaired social skills Impaired communication skills Presence of repetitive behavior The social impairments in autism are significant and pervasive, interfering with functioning appropriate to the individual s developmental age (Posey & McDougle, 2002). Several disorders can be mistaken for ASDs. ASDs must be distinguished from social awkwardness (Posey & McDougle, 2002). ASDs are more common in males, at a 4:1 ratio.

12 Toolkit for Medical Professionals Questions to Ask Families Concerned about ASD Ch i l d r e n u n d e r 2: 1. Does s/he smile in response/clearly notice the presence of other people? 2. Can you soothe your child when s/he is upset? 3. Does s/he show increased/ reduced sensory issues? _ 4. Does s/he point, wave, or use other gestures? 5. Does s/he understand your gestures? 6. Is s/he babbling? 7. Does s/he have any single words yet? 8. Has s/he ever lost social skills? _

Section i 13 Questions to Ask Families Concerned about ASD Ch i l d r e n 2 a n d o v e r: 1. Is s/he using two word phrases? 2. Has s/he ever lost language (i.e., stopped talking)? 3. Has s/he ever lost social skills? 4. Is s/he bothered by small changes in his/her environment? 5. Does s/he engage in repetitive motor movements? 6. Does s/he ever intentionally injure him/herself? _ 7. Has s/he ever lost language (i.e., stopped talking)? _ 8. Does s/he have a high pain threshold? _ 9. Does s/he have difficulty understanding social cues and social rules? _ 10. Does s/he play with toys creatively or as they are meant to be used? 11. Does s/he have a consistent and functional way to express needs and desires?

14 Toolkit for Medical Professionals Basic overview of ASDs http://www.handsinautism.org/autism101.html Places to Go for More Information Information on screening and early indicators http://www.cdc.gov/ncbddd/autism/screening.htm http://www.cdc.gov/ncbddd/autism/actearly/default.htm Links to screeners to help identify ASDs (including the M-CHAT and SCQ) http://www.firstsigns.org/screening/tools/rec.htm http://depts.washington.edu/dataproj/chat.html Information on developmental milestones http://www.nichcy.org/disabilities/milestones/pages/default.aspx Information on local options for diagnosis/assessment: http://www.iidc.indiana.edu/irca/diagassess.html-diagnosis Information on early intervention http://www.nichcy.org/babies/overview/pages/default.aspx - treatment Information on local treatment providers http://apps.nlm.nih.gov/medlineplus/local/indiana/homepage.cfm?areaid=13- treatment Information on the medical home http://aappolicy.aappublications.org/cgi/content/abstract/pediatrics;118/1/405 http://www.medicalhomeinfo.org/screening/dpip/screeningtoolgrid.pdf Re f e r e n c e s 1. Acosta MT, Pearl PL. The neurobiology of autism: New pieces of the puzzle. Current Neurology and Neuroscience Reports. 2003;3:149-156. 2. American Academy of Pediatrics (AAP). Understanding autism spectrum disorders (ASD). Elk Grove Village, IL: American Academy of Pediatrics; 2005. 3. American Academy of Pediatrics. Caring for children with autism spectrum disorders: A resource toolkit for clinicians [CD-ROM]. Elk Grove Village, IL: American Academy of Pediatrics; 2008. 4. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM- IV). 4th ed. Washington, DC: American Psychiatric Association; 1994. 5. Baron-Cohen S, Cox A, Baird G, et al. Psychological markers in the detection of autism in infancy in a large population. British Journal of Psychiatry. 1996;16(8):158-163. 6. Berument SK, Rutter M, Lord C, Pickles A, Bailey A. Autism screening questionnaire: Diagnostic validity. British Journal of Psychiatry. 1999;175:444-451. 7. Centers for Disease Control and Prevention (CDC). How common are Autism Spectrum Disorders? Atlanta, GA: Centers for Disease Control;2004. 8. Cohen DJ, Volkmar FR, eds. Handbook of autism and pervasive developmental disorders. Hoboken, NJ: John Wiley & Sons; 2005.

Section i 15 9. dosreis S, Weiner CL, Johnson CL, Newschaffer CJ. Autism spectrum disorder screening and management practices among general pediatric providers. Journal of Developmental and Behavioral Pediatrics. 2006;27(Supplement):S88-S94. 10. Filipek PA, Accardo PJ, Ashwal S, et al. Practice parameter: Screening and diagnosis of autism. Neurology. 2000;55:468-479. 11. Filipek PA, Accardo PJ, Baranek GT, et al. The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders. 1999;29:439-483. 12. Johnson CP, Myers SM. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120:1183-1215. 13. Nadel S, Poss JE. Early detection of autism spectrum disorders: Screening between 12 and 24 months of age. Journal of American Academy of Nurse Practitioners. 2007;19:408-417. 14. National Research Council. Educating children with autism. Washington, DC: Committee on educational interventions for children with autism, Division of behavioral and social sciences and Autism;2001 15. Pandey J, Verbalis A, Robins DL, et al. Screening for autism in older and younger toddlers with the Modified Checklist for Autism in Toddlers. Autism. 2008;12:513-535. 16. Posey DJ, McDougle CJ. Autism: A three-step approach to making the diagnosis. Current Psychiatry. 2002;1:21-28. 17. Robins DL, Fein D, Barton ML, Green JA. The modified checklist for autism in toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders. 2001;31:131-144. 18. Robins DL. Screening for autism spectrum disorders in primary care settings. Autism. 2008;12:537-556. 19. Siegel B, Pliner C, Eschler J, Elliot G. How children with autism are diagnosed: Difficulties in identification of children with multiple developmental delays. Journal of Developmental and Behavioral Pediatrics. 1988;9:199-204. 20. Snyder DM, Miller K, Stein MT. It looks like autism: Caution in diagnosis. Journal of Developmental and Behavioral Pediatrics. 2008;29:47-50. Online Resources for Diagnosis & Screening American Academy of Pediatrics: http://www.aap.org/healthtopics/autism.cfm Center for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/ Indiana Medical/Autism Waiver: http://www.in.gov/fssa/ompp/2632.htm National Institute of Mental Health: http://www.nimh.nih.gov/ Screening Tools Checklist for Autism in Toddlers (CHAT): http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=128&a=2226 Modified Checklist of Autism in Toddlers (M-CHAT): http://www2.gsu.edu/~psydlr/diana_l._robins,_ Ph.D..html Social Communication Questionnaire (SCQ) (previously known as Autism Screening Questionnaire, ASQ): http://portal.wpspublish.com/portal/page?_pageid=53,70432&_dad=portal&_schema=portal

16 Toolkit for Medical Professionals M-Ch at

Section i 17

18 Toolkit for Medical Professionals Autism Screening Poster

CDC Act Early Resources Sheet Section i 19

20 Toolkit for Medical Professionals