challenges for adolescents and adults with asperger's syndrome terri daly, ph.d, bcba-d ucf...
TRANSCRIPT
Challenges for
Adolescents and Adults
with Asperger's Syndrome
Terri Daly, Ph.D, BCBA-DUCF Center for Autism and Related Disabilities
(CARD)[email protected] www.ucf-card.org
Asperger’s is everywhere
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)
Diagnostic Criteria
In DSM-V...
One day your “in,” the next, you’re “out”
In Out
• ASD• Qualifiers• Co-morbids
• PDD• Asperger’s, • PDD-NOS, • Autism• TOTALLY out:
Rett’s
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94
Autism Spectrum Disorders
Childhood Disintegrative Disorder
Rett’sDisorder
Pervasive Developmental Disorder
Not Otherwise SpecifiedAsperger’s Disorder
AutisticDisorder
Restricted Interests & Attention
Socialskills
Communication
Core Deficits for Autism Spectrum Disorders
Repetitive behaviors, interests and activities
Differences in socialization
Differences in communication
ASD
Differential Diagnosis
• Asperger’s vs. Nonverbal Learning Disability
• Asperger’s vs ADHD
• Asperger’s vs Obsessive-Compulsive Disorder (OCD)
• 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)
AS HFA PDD-NOS
V/P Diff V>P V<P variable
Family Hist Frequent Uncommon Uncommon
Clumsiness Marked Variable Variable
Intense Interests
Marked Variable Variable
Age noted > 24 mo 0-36 mo variable
IQ range Normal Normal variable
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”
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
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 situation—learned
helplessness
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
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
To Find A Man Lost In The Woods, You Must Get To Where He Is
WHY?
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
When shown multiple TV screens, it is hard for children with AS to shift attention to newer visual
stimuli.
Mirror Neurons
Language of the Eyes
A: happy
B: Afraid
C: Disgusted
D: Distressed
A: Guilty
B: Thinking
C: Flirting
D: Arrogant
Harder for AS to recognize
Belief-based facial expressions
Ami Klin
Viewer with ASD (Red Line)Normal Comparison Viewer (Yellow Line)
Direct Eye ContactTriggers Threat Response -Dalton, 2005
Ask yourself…
• What must it be like…
• What is the school experience for the student with Asperger’s??
• How do they perceive the environmental milieu?
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
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 wouldn’t people want my help? I wanted to help a girl in my class with a project—she said, “give me a hundred dollars…a thousand dollars…a million dollars!” She insulted me. I don’t have a hundred dollars. It made me very frustrated.
• “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.
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
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.....
Well, That’s One Way...
• of looking at it....– Conformist– Afraid of sticking out– Cowardly– Lacking Leadership– Insecure– Unoriginal
It’s all a matter of perspective...
• NT Quote
Mind Blindness & Theory of Mind
• The ability to think about other people’s thinking—
• …to think about what they think about our thinking—
• …and so on• The ability to make inferences about another’s
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
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
…continued
• Inability to read and react to the listener’s level of interest
• Inability to anticipate what others might think of one’s actions
• Inability to deceive or to understand deception
• Lack of understanding of social interactions
• Difficulty appreciating ambiguity/shades of gray
Central Coherence Issues
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
Teach To Difficulties
• Model predicting• Reward guessing• Point out alternatives• Devil’s Advocate• Provide experience in demonstrating
gradations– Scales of Justice, Stress Thermometer
From Garcia-Winner
The Emergency Meter
The Hidden Curriculum
• Rules we all know• Not instructed• Difficult to teach levels of social
awareness that we ourselves did not have to ‘learn’
Hidden Curriculum in the School
• Examples include:
– When you are taking a shower in gym class, don’t 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.
The Urinal Game: Which to Choose?Peter Gerhardt, Bridges to Adulthood, 2005
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-room2. Move them
covertly3. 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 didn’t
happen; make use of context
Nothing 1. Teach rules per emission
2. Teach scripts for response
3. Direct Instruction
Environmental Supports
• Home Base• Safe Person• Hot Pass
Why Don’t Kids Have Social Skills? (after instruction)
• What? I was supposed to do it then??• That will never happen• It’s just easier to avoid those situations• Nobody likes me• It is exercise!
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
Self Awareness Difficulties:
• Emotional Regulation – Recognition• Emotional Regulation – Coping skills• Recognition of Other’s Emotions• Peer Perceptions: Cool vs. Not Cool• Bully Target• Social Anxiety• Etiquette of Eating
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? .
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
Stressors impacting performance
• Unstructured/disorganized environment• Inconsistency • Unexpressed expectations• High stimulation levels• Lack of predictability• High auditory/language load• Unfamiliar routines, situations or materials
• Children with Autism experience the same physical and hormonal changes that typically developing children do
Implications for Parents and Teachers
• Engagement is essential• Target core areas early• Prepare for the future with the long view in
mind
• 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
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%
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
Some Useful Transition to Work Skills
Functional Communication
EnduranceSeeking Assistance
Quality Control/ Self Checking
Personal Mobility
Self Monitoring of Behavior
Task Scheduling
Age Referenced Clothing & Hygiene
What is Job Match?
• Job Match is the extent to which a particular job meets the individual’s 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.
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
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
People with AS are as likely to be on the offending end of the situation as they are to be on the victimized end—however,
most people will only hear about the offenses…
• Victims of peer cruelty (invisible disability, goading, acting as front man)
• Victims of extortion• Victims of “love”• Victims of scams and property
theft/vandalism
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
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
www.ucf-card.org