Challenges for

Adolescents and Adults

with Asperger's Syndrome

Terri Daly, Ph.D, BCBA-DUCF Center for Autism and Related Disabilities

(CARD)terri.daly@ucf.edu 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

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