1. Challenges for Adolescents and Adults with Asperger's Syndrome Terri Daly, Ph.D, BCBA-D UCF Center for Autism and Related Disabilities (CARD) terri.daly@ucf.eduterri.daly@ucf.edu www.ucf-card.org

2. Aspergers is everywhere

3. History Hans Asperger, 1944 USA, 1994 More boys than girls, 10:1 Current rates: 8.4 per 10,000 Slated for elimination in USA (2013)

4. Diagnostic Criteria In DSM-V... One day your in, the next, youre out

5. In Out ASD Qualifiers Co-morbids PDD Aspergers, PDD-NOS, Autism TOTALLY out: Retts http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.as px?rid=94

6. Autism Spectrum Disorders Childhood Disintegrative Disorder Retts Disorder Pervasive Developmental Disorder Not Otherwise Specified Aspergers Disorder Autistic Disorder Restricted Interests & Attention Social skills Social skills Communication

7. Core Deficits for Autism Spectrum Disorders Repetitive behaviors, interests and activities Differences in socialization Differences in communication ASD

8. Differential Diagnosis Aspergers vs. Nonverbal Learning Disability Aspergers vs ADHD Aspergers vs Obsessive-Compulsive Disorder (OCD)

9. 1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following: –a. Marked deficits in nonverbal and verbal communication used for social interaction: –b. Lack of social reciprocity; –c. Failure to develop and maintain peer relationships appropriate to developmental level 2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following: –a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors –b. Excessive adherence to routines and ritualized patterns of behavior –c. Restricted, fixated interests 3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

10. AS HFAPDD-NOS V/P Diff V>P V<P variable Family HistFrequentUncommon ClumsinessMarkedVariable Intense Interests MarkedVariable Age noted > 24 mo 0-36 movariable IQ rangeNormal variable

12. Prototypical AS Elementary Student Active, but odd Not interested in sports Happy to be doing his own thing Appears inattentive but seems to have heard everything Few true friends Poor penmanship; poor sportsmanship Reads (decodes) above age level Good vocabulary Eager to please with facts I know

13. Prototypical adolescent with AS Unkempt appearance/disheveled Poor facial hygiene Rubs eyes a lot Difficulty with social interactions Gives monologues about pet topics No girlfriend/boyfriend Loner Clumsy Depression Comments largely negative in nature

14. Prototypical Adult On verge of being fired On verge of being evicted Peculiar driving rules Routines May be in relationship Home unkept, dark Air of disbelief about situationlearned helplessness

15. Off the record… Clumsy Literal-minded Pedantic speech Areas of expertise, superior fund of knowledge in restricted areas Writing requires significant effort, which often results in fatigue, and unfinished work Organizational problems

16. Social Interaction Socially isolated Tense & stressed trying to cope with social demands of others Wants friends; lacks strategies for developing lasting friendships Difficulty picking up on social cues May behave in socially inappropriate way

17. To Find A Man Lost In The Woods, You Must Get To Where He Is WHY?

18. Differences in the Brain Picture from: http://www.nationmaster.com/encyclopedia/Autism Larger cerebellum (attention shifting) –Reduction of Purkinje cells (serotonin) Smaller corpus callosum (connectivity) Amygdala (emotions/ aggressions) and hippocampus (learning/ memory- stims) are also different –Densely packed but smaller neurons

20. When shown multiple TV screens, it is hard for children with AS to shift attention to newer visual stimuli.

21. Mirror Neurons

24. Language of the Eyes

28. A: happy B: Afraid C: Disgusted D: Distressed

29. A: Guilty B: Thinking C: Flirting D: Arrogant Harder for AS to recognize Belief- based facial expressions

30. Ami Klin Viewer with ASD (Red Line) Normal Comparison Viewer (Yellow Line)

31. Direct Eye Contact Triggers Threat Response -Dalton, 2005

32. Ask yourself… What must it be like… What is the school experience for the student with Aspergers?? How do they perceive the environmental milieu?

33. Lonely is the color of the darkest white on a cold day Lonely sounds like wind whispering in your ear Lonely tastes like ice cream with no flavor at all Lonely smells like a poison fruit that was cooked by the devil Lonely is like the ugly duckling that no one really likes Lonely makes me feel who I am deep inside of me By: Blake Carter Age 11

34. more… Some people accuse me of things that somebody else was not supposed to do (when I was reporting that other kids were doing something wrong on the car ramp, I got in trouble; it made me very angry because I was trying to be helpful). And I hate that no one wants my help. It shows stupidity. Why wouldnt people want my help? I wanted to help a girl in my class with a projectshe said, give me a hundred dollars…a thousand dollars…a million dollars! She insulted me. I dont have a hundred dollars. It made me very frustrated.

35. I am trapped between a good life and a bad life. What can I do? The ones who are angry at me…I just make them angrier! Michael H.

36. Feeling Like You are Blind and Everyone Else Can See… Suppose you are colorblind, and cannot distinguish between red and green, You are in a room with other people, all of whom have normal vision. No one--not even you--knows that you are color-blind. Everyone is handed a list of instructions. They are printed in red against a green background. Everyone except you knows exactly what to do. They cannot understand why you just sit there. The paper looks blank to you and you cannot understand how the others know what to do. Think of how you would feel, especially if the others stared at you, or whispered, or laughed. David

37. So… what makes YOU so socially able? -Motivated to learn appropriate actions -Perceive social situations accurately -Able to identify the skills to use -Able to adequately perform the necessary skills -Sensitive to social feedback -Can tweak behaviors to fit situational requirements -Willing & able to emulate behaviors of others -Able to generalize to appropriate situations. And so on.....

38. Well, Thats One Way... of looking at it.... –Conformist –Afraid of sticking out –Cowardly –Lacking Leadership –Insecure –Unoriginal Its all a matter of perspective...

39. NT Quote

40. Mind Blindness & Theory of Mind The ability to think about other peoples thinking …to think about what they think about our thinking …and so on The ability to make inferences about anothers behavior; to appreciate that other people have mental states: intentions, needs, desires & beliefs, which may be different from our own and may not match their speech output

41. Theory of Mind Impairment Difficulty predicting others behavior Difficulty reading the intentions of others Difficulty explaining own behavior Difficulty in understanding emotions Difficulty understanding that behavior affects how others think or feel Difficulty taking into account what other people know or can be expected to know

42. …continued Inability to read and react to the listeners level of interest Inability to anticipate what others might think of ones actions Inability to deceive or to understand deception Lack of understanding of social interactions Difficulty appreciating ambiguity/shades of gray

43. Central Coherence Issues

44. Leads To: Fragmented Experience Thinking in Pictures Black and White Thinking/Literalism Putting things together one step at a time Search for Order, Rules, Play books

46. Teach To Difficulties Model predicting Reward guessing Point out alternatives Devils Advocate Provide experience in demonstrating gradations –Scales of Justice, Stress Thermometer

47. From Garcia-Winner

48. The Emergency Meter

49. The Hidden Curriculum Rules we all know Not instructed Difficult to teach levels of social awareness that we ourselves did not have to learn

50. Hidden Curriculum in the School Examples include: –When you are taking a shower in gym class, dont watch others take their shower –Do no pass gas, pick your nose, or scratch an itch of a private body part in any class. –Rules change from teacher to teacher and it does not do any good to focus on the fact that it may not be fair. –If you do something funny, it is usually only funny once. If you do it repeatedly, it makes you look silly and people might make fun of you.

51. The Urinal Game: Which to Choose? Peter Gerhardt, Bridges to Adulthood, 2005

52. Social Situation: : Neurotypical Behavior: ASDBehavior: What to Teach: Underwear in bad position Covertly move them with hand; unnoticed by peers Obviously move them with hand; unaware of peer perception 1. B-room 2. Move them covertly 3. Make use of private space Itchy Scalp Some itching – unless peers make notice Copious scratching – despite who notices 1. Couple scratches rule 2. Response to comment 3. Response to flakes Bodily Emissions Blame it on others; pretend it didnt happen; make use of context Nothing 1. Teach rules per emission 2. Teach scripts for response 3. Direct Instruction

53. Environmental Supports Home Base Safe Person Hot Pass

54. Why Dont Kids Have Social Skills? (after instruction) What? I was supposed to do it then?? That will never happen Its just easier to avoid those situations Nobody likes me It is exercise!

55. Friendships: Elementary vs. Secondary Friendships in elementary school –Focus: shared play –Conversation only while playing (mostly) –Small to Moderate emphasis on comm. skills –Small emphasis on interpersonal skills Friendships in secondary school –Focus: shared feelings/beliefs, shared time, common interests, personalities, social norms –Conversations w/ & outside of activities –Large emphasis on comm. skills –Moderate to Large emphasis on interpersonal skills

56. Self Awareness Difficulties: Emotional Regulation – Recognition Emotional Regulation – Coping skills Recognition of Others Emotions Peer Perceptions: Cool vs. Not Cool Bully Target Social Anxiety Etiquette of Eating

57. Fitting In How comfortable would you feel at: –Motel on OBT –Polish Deli where no English is Spoken –Knighthood induction ceremony Cultural informants: What is needed for success in each of the above settings/events? Might some of us become more socially skilled than others in the above situations. Why? Might some of your children lack social skills for commonly frequented settings (Applebees)? –Why?.

58. School Implications Protect from bullying –Teach coping, self-defense, avoidance skills Provide social judgment training –Dignity of failure, Specific Social Skills –Hidden Curriculum Develop peer webs –Use cooperative learning opportunities Alert them to rudeness, and teach them it is not acceptable –Role play interaction, use story frames, social stories –Social Autopsies, SOCCS, etc

59. Stressors impacting performance Unstructured/disorganized environment Inconsistency Unexpressed expectations High stimulation levels Lack of predictability High auditory/language load Unfamiliar routines, situations or materials

60. Children with Autism experience the same physical and hormonal changes that typically developing children do

61. Implications for Parents and Teachers Engagement is essential Target core areas early Prepare for the future with the long view in mind

62. Beginning early, encourage adherence to societal standards Develop leisure skills that are likely to be available to the child as an adult and are likely to be age appropriate for an adult

63. Survey Says Yes, child has... »Special Needs (N=504) ASD (N=1496) Bank account 55% 37% Cell phone 41% 9% Personal computer 40% 44% MP3 player 49% 23% Cash card 6% 1%

64. Reasons people with ASD are unemployed Lack of social pragmatics Lack of social skills development Behavioral issues Missing supports Social skills are extremely important! Most employers value good social skills over good vocational skills! Herm Fishbein

65. Some Useful Transition to Work Skills Functional Communication Endurance Seeking Assistance Quality Control/ Self Checking Personal Mobility Self Monitoring of Behavior Task Scheduling Age Referenced Clothing & Hygiene

66. What is Job Match? Job Match is the extent to which a particular job meets the individuals needs in terms of challenge, interest, comfort, camaraderie, status, hours, pay & benefits. Ideally, as we move through the job market, we get closer and closer to our ideal job match.

67. Components of The Physical Job Match Hours of employment Acceptable noise levels Pay, benefits, vacations, holidays, etc Acceptably activity levels Physical requirements of the job (e.g. Lifting) Quality control requirements Production requirements

68. Components of the Social Job Match Acceptable level of interaction Clear job expectations Navigation skills Grooming and hygiene Communication skills relevant to environment Personal space Phone/vending/cafeteria Co-worker training and support

69. People with AS are as likely to be on the offending end of the situation as they are to be on the victimized endhowever, most people will only hear about the offenses…

70. Victims of peer cruelty (invisible disability, goading, acting as front man) Victims of extortion Victims of love Victims of scams and property theft/vandalism

71. Why are students with ASD more likely to end up involved with the law? Argumentative/Rigid Lash out when touched Sensory over-stimulation Anxiety Lack of eye contact or attending Inability to grasp a social situation Unusual Non-Responsive

72. Additional Behavioral Complexity Appear intoxicated or tuned out Have intense sensory issues Have tantrums or outbursts that have no explanation Wander or run off Aggression towards self or others Engagement in bizarre behavior May not respond to verbal commands Difficulty judging personal space

73. www.ucf-card.org