1. Elizabeth Akey, PhD, HSPP Patsy Hoyer, CFNP Lafayette Medical Education Foundation CME May 23, 2012 Adults with Autism

2. Recognizing Autism 2 Elizabeth Akey, PhD, HSPP 5/23/12

3. Prevalence Estimates are rising rapidly 1 in 89 children (CDC; 2012) 2002: 1:150 2011: 1:110 1 in 100 adults (Brugha et al., 2011) 3 Elizabeth Akey, PhD, HSPP 5/23/12

4. Current DSM Classifications Autism Asperger’s Disorder Pervasive Developmental Disorder NOS 4 Elizabeth Akey, PhD, HSPP 5/23/12

5. Autistic Spectrum AutismPDD NOSAsperger’s 5 Elizabeth Akey, PhD, HSPP 5/23/12

6. Core Elements Qualitative impairment in social behavior and communication Qualitative impairment in interests and activities Present since very early childhood Causing significant impairment in daily functioning 6 Elizabeth Akey, PhD, HSPP 5/23/12

7. Autism Limited functional language Severely restricted interests Little social reciprocity IQ<70 PDD NOS Adequate language; weak pragmatics Restricted interests Limited social reciprocity IQ variable Asperger’s Adequate language; weak pragmatics Restricted interests Limited social reciprocity IQ average or high 7 Elizabeth Akey, PhD, HSPP 5/23/12

8. Autism Spectrum Disorders defy generalization Measured IQ Social Interaction Communication Motor Skills Fine Motor Gross Motor Sensory Gifted Active but odd Verbal Coordinated Agile Hypersensitive Severe Aloof Nonverbal Uncoordinated Awkward Hyposensitive Passive S. Andrews, GLASS. Used with permission 8 Elizabeth Akey, PhD, HSPP 5/23/12

9. OUTCOME% Good0 Fair8 Restricted but acceptable13 Poor57 Very poor22 Outcomes: ASD and lower IQ/communication skills Billstedt, Gillberg, & Gillberg (2005), follow up of 120 individuals with autism and atypical autism, childhood diagnosis in early 80’s, to adulthood 13- 22 yrs later ◦ Older, restrictive definition of autism 9 Elizabeth Akey, PhD, HSPP 5/23/12

10. Outcomes: ASD and higher IQ/communication skills Students with disabilities more likely to pursue 2-year degrees than 4-year degrees and more likely to drop out without completing National Center on Educational Statistics, 1999 Students leaving college within 1 st two years National average1/3 Students identifying with disabilities1/2 Students identifying with learning disabilities2/3 10 Elizabeth Akey, PhD, HSPP 5/23/12

11. Behavioral Cues Limited give-and-take Awkward pauses or breaks in conversation Little emotional response Unusual gestures or posture Fixation on details Rigid adherence to routines or instructions May not come for treatment until symptoms are quite serious or painful 11 Elizabeth Akey, PhD, HSPP 5/23/12

12. Cues, cont. Challenging, critical, or unusually blunt responses Not hostile Unusual sensory reactions Unexpected inflexibility Inability to keep a job despite high intelligence Few friends or social activities 12 Elizabeth Akey, PhD, HSPP 5/23/12

13. Behavioral health concerns Comorbidity estimates Mood disorders Depression Bipolar I or II NOS Anxiety Inattention 50% by adolescence 85% 60% 13 Elizabeth Akey, PhD, HSPP 5/23/12

14. Responding to Adults with Autism A: Dealing with the question of diagnosis B: Managing in the office C. Treating comorbid disorders and symptoms 14 Elizabeth Akey, PhD, HSPP 5/23/12

15. A: Diagnosis 15 Elizabeth Akey, PhD, HSPP 5/23/12

16. When diagnosis is established Transfer of care from pediatricians may occur at later ages than typical Gather all available information Cognitive functioning, verbal ability, medical history Caregiver report on behavior and any sensory issues Agencies or organizations involved in person’s care 16 Elizabeth Akey, PhD, HSPP 5/23/12

17. Understand the context Birth to 17y11m 18 + Parents hold legal responsibility Free and appropriate education through public schools GLASS (Tippecanoe County) Schools must identify students in need Parents responsible for financial support Young adult is emancipated Continuing education is responsibility of student/parents Vocational Rehabilitation Services Students must self- identify Possible Social Security or employment ADA protections 17 Elizabeth Akey, PhD, HSPP 5/23/12

18. Young adults must self-identify to college administrators and establish eligibility for supportive services Schools are required to provide certain academic accommodations but not social supports Young adults must self-identify to each instructor Young adults must choose to participate in available programs Context: College Elizabeth Akey, PhD, HSPP 5/23/12

19. When you suspect an ASD Notice possible symptoms Adapt your interactions to person’s needs and abilities Assess severity of impact on functioning Decide on level of disclosure Refer for ancillary services 19 Elizabeth Akey, PhD, HSPP 5/23/12

20. B: Managing in the office 20 Elizabeth Akey, PhD, HSPP 5/23/12

21. Tips Structure visit to person’s needs and abilities Communicate in short and direct statements Tell person what is coming next, and why Use visual aids Go slowly Go gently 21 Elizabeth Akey, PhD, HSPP 5/23/12

22. Be predictable; keep routines Supply information Respect patient’s privacy Act as consultant, not decision-maker Negotiate Ignore some behaviors Tips, cont. Elizabeth Akey, PhD, HSPP 5/23/12 22

23. C. Treating comorbid disorders and symptoms 23 Elizabeth Akey, PhD, HSPP 5/23/12

24. Resources Christian Sarkine Autism Treatment Center, IU School of Medicine, Dept. of Psychiatry HANDS in Autism website http://handsinautism.org/aboutus.html http://handsinautism.org/aboutus.html Toolkit for Medical Professionals http://www.handsinautism.org/toolkit.html http://www.handsinautism.org/toolkit.html Allison Morton-Cooper (2004). Health Care and the Autism Spectrum: A Guide for Health Professionals, Parents and Carers. Jessica Kingsley Publishers. IN*SOURCE: Indiana Resource Center for Families with Special Needs www.insource.org 24 Elizabeth Akey, PhD, HSPP 5/23/12

25. Indiana Resource Center for Autism http://www.iidc.indiana.edu/index.php?pageId=32/ Autism Speaks http://www.autismspeaks.org/family-services/resource- library/adults-autism http://www.autismspeaks.org/family-services/resource- library/adults-autism Indiana Bureau of Developmental Disability Services, District 4, Terre Haute IN Phone 812-232-3603 25 Elizabeth Akey, PhD, HSPP 5/23/12