Understanding and Understanding and Living with ASDLiving with ASD

Prepared by the 2003-2004 Autism Prepared by the 2003-2004 Autism TeamTeam

Parenting children Parenting children with autism spectrum with autism spectrum

disorders requires disorders requires flexibility, creativity, flexibility, creativity, and a willingness to and a willingness to

change.change.

Autism is referred to as a Autism is referred to as a spectrum disorder to signify spectrum disorder to signify

similarities among a group of similarities among a group of individuals who share a common individuals who share a common diagnosis, but who differ in how diagnosis, but who differ in how

core characteristics are core characteristics are manifested, and in the number manifested, and in the number

and severity of specific and severity of specific characteristics.characteristics.

Spectrum DisorderSpectrum Disorder

• Because of broad variability in:Because of broad variability in:– Measured Cognitive AbilityMeasured Cognitive Ability– Social-Emotional DevelopmentSocial-Emotional Development– Communication AbilityCommunication Ability– Motor Skills: Both Fine and Gross Motor Skills: Both Fine and Gross – Sensory ProcessingSensory Processing

Causes of Autism Spectrum Causes of Autism Spectrum DisordersDisorders

• No Specific Known CauseNo Specific Known Cause• Neurobiological DisorderNeurobiological Disorder• Genetic ComponentGenetic Component• Perhaps Multiple Causal FactorsPerhaps Multiple Causal Factors• Subtypes Based on Predicted Time Subtypes Based on Predicted Time

of Onsetof Onset

Pervasive Developmental Pervasive Developmental Disorders (PDD)Disorders (PDD)

• AutismAutism• Pervasive Developmental Disorder Pervasive Developmental Disorder

Not Otherwise SpecifiedNot Otherwise Specified• Asperger’s SyndromeAsperger’s Syndrome• Rett’s SyndromeRett’s Syndrome• Childhood Disintegrative DisorderChildhood Disintegrative Disorder

AutismAutism

• Characterized by difficulties in Characterized by difficulties in communication, social interaction, communication, social interaction, and imaginative play, and the and imaginative play, and the presence of restricted interests and presence of restricted interests and activities prior to the age of 3.activities prior to the age of 3.

PDD NOSPDD NOS

• Atypical autism presentations that Atypical autism presentations that do meet the criteria for Autistic do meet the criteria for Autistic Disorder because of late age at Disorder because of late age at onset, atypical symptomatology or onset, atypical symptomatology or subthreshold symptomatology.subthreshold symptomatology.

Asperger’s SyndromeAsperger’s Syndrome

• The disturbance causes clinically The disturbance causes clinically significant impairment in social, significant impairment in social, occupational, or other important occupational, or other important areas of functioning.areas of functioning.

• There is no clinically significant There is no clinically significant general delay in language (e.g., general delay in language (e.g., single words by age 2 years, single words by age 2 years, communicative phrases used by 3 communicative phrases used by 3 years).years).

Rett’s DisorderRett’s Disorder

• A genetic disorder, that only occurs in A genetic disorder, that only occurs in girls.girls.

• Normal development for the first 5 Normal development for the first 5 months. Head growth ceases between 5-months. Head growth ceases between 5-48 months with loss of previously 48 months with loss of previously acquired skills.acquired skills.

• Results in difficulties in expressive and Results in difficulties in expressive and receptive communication, poorly receptive communication, poorly coordinated gait and trunk movements, coordinated gait and trunk movements, and cognitive disabilities.and cognitive disabilities.

Childhood Disintegrative Childhood Disintegrative DisorderDisorder

• Extremely rare.Extremely rare.• Develop normally for at least the Develop normally for at least the

first 2 years and then display first 2 years and then display significant regression in significant regression in communication, motor, and social communication, motor, and social interaction skills.interaction skills.

Characteristics of Children Characteristics of Children with Autism Spectrum with Autism Spectrum

DisordersDisorders• Social DifficultiesSocial Difficulties• Expressive and Receptive Expressive and Receptive

Communication DifficultiesCommunication Difficulties• Restricted RepertoireRestricted Repertoire• Additional ConsiderationsAdditional Considerations• Sensory Processing DifficultiesSensory Processing Difficulties• Theory of MindTheory of Mind• Executive FunctioningExecutive Functioning

Areas of DifficultyAreas of Difficulty• Social Social • PragmaticsPragmatics• Obsessive Obsessive

InterestsInterests• Black/White Black/White

ThinkingThinking• RigidityRigidity• SensorySensory

• AttentionAttention• MotivationMotivation• MotorMotor• Executive Executive

FunctioningFunctioning• Emotional Emotional

RegulationRegulation• Hidden Social Hidden Social

RulesRules

Behavioral Behavioral CharacteristicsCharacteristics

• Obsessions/RitualsObsessions/Rituals• Compulsive MannerismsCompulsive Mannerisms• Self-Stimulatory BehaviorSelf-Stimulatory Behavior• RefusalRefusal• WithdrawalWithdrawal• Self-Injury/AbuseSelf-Injury/Abuse• AggressionAggression

Sensory Processing Sensory Processing DifficultiesDifficulties

• Each of us have various sensory systems Each of us have various sensory systems which process information and assist us which process information and assist us in making sense of the world.in making sense of the world.

• People with autism spectrum disorders People with autism spectrum disorders have difficulty processing and using have difficulty processing and using sensory input in a meaningful and sensory input in a meaningful and relevant way.relevant way.

• Some individuals are over sensitive and Some individuals are over sensitive and others are under sensitive to sensory others are under sensitive to sensory input.input.

Sensory Processing Sensory Processing DifficultiesDifficulties

• VisualVisual• AuditoryAuditory• TactileTactile• VestibularVestibular• OlfactoryOlfactory• Gustatory (taste)Gustatory (taste)• ProprioceptiveProprioceptive

As a result of these As a result of these sensory difficulties, sensory difficulties,

individuals may individuals may experience sensory experience sensory overloads and or overloads and or

meltdowns.meltdowns.

Common Stressors at Common Stressors at SchoolSchool

• Unstructured Unstructured timestimes– BusBus– Before/after schoolBefore/after school– TransitionsTransitions– LunchLunch– Physical educationPhysical education

• SensorySensory– CrowdsCrowds– SpaceSpace– NoiseNoise

• AcademicAcademic– Understanding Understanding

what to do & how what to do & how to do itto do it

– Breaking down Breaking down taskstasks

– WritingWriting– OrganizationOrganization

• SocialSocial• Novel EventsNovel Events• ChangesChanges

Common Stressors at HomeCommon Stressors at Home

• Sensory Sensory – foodfood– haircutshaircuts– dentistsdentists– medicalmedical– clothingclothing– showersshowers

• Completing routinesCompleting routines– getting ready for getting ready for

schoolschool– doing homeworkdoing homework– choreschores

• Family activitiesFamily activities– Adjusting “their” Adjusting “their”

agenda/interests agenda/interests with family planswith family plans

Lower ExpectationsLower Expectations

• Temporarily, be flexibleTemporarily, be flexible

• This is not the time to teach This is not the time to teach new skills!new skills!

• Adreon & Gitlitz, 1998Adreon & Gitlitz, 1998

Increase Environmental Increase Environmental SupportsSupports

• Make the environment as Make the environment as predictable as possiblepredictable as possible

• Provide consistencyProvide consistency– Prepare the individual for any Prepare the individual for any

unavoidable changesunavoidable changes– If a change is unavoidable, further If a change is unavoidable, further

reduce expectations/demands reduce expectations/demands following the changefollowing the change

• Adreon & Gitlitz, 1998Adreon & Gitlitz, 1998

Remove/Reduce Remove/Reduce StressorsStressors

• Remove/decrease disliked activitiesRemove/decrease disliked activities

• Remove/decrease difficult activitiesRemove/decrease difficult activities– Simplify workSimplify work– Reduce writing assignmentsReduce writing assignments– Simplify all tasks involving organizing, Simplify all tasks involving organizing,

planning & sequencingplanning & sequencing– Eliminate discussions on feelingsEliminate discussions on feelings

• Adreon & Gitlitz, 1998Adreon & Gitlitz, 1998

1. Operate on “Their 1. Operate on “Their Time”Time”

• Twice as Much Twice as Much Time, Half as Time, Half as Much Done = A Much Done = A Successful DaySuccessful Day

• Avoid Rushing!Avoid Rushing!

2. Balance the Agenda2. Balance the Agenda

• Assess the demands for the student when Assess the demands for the student when planning the schedule.planning the schedule.

• Incorporate a balance of LOW-STRESS, HIGH-Incorporate a balance of LOW-STRESS, HIGH-PLEASURE activities for the individual.PLEASURE activities for the individual.

• Include “stress-free” time in the schedule.Include “stress-free” time in the schedule.

Balance the Agenda Balance the Agenda (con’t)(con’t)

• Conserve energyConserve energy

• Assess the upcoming demands on the Assess the upcoming demands on the student for the day.student for the day.

• Remove any stressful tasks/activities that Remove any stressful tasks/activities that are not essential.are not essential.

• Do not remove tasks that the student enjoys.Do not remove tasks that the student enjoys.

First/Then First/Then Use this to assist student in Use this to assist student in managing time and anxietymanaging time and anxiety

3. Manage the 3. Manage the EnvironmentEnvironment

• Provide consistency Provide consistency in the environment.in the environment.

• Avoid sudden Avoid sudden changes.changes.

• Adapt the Adapt the environment when environment when there are changes.there are changes.

4. Set the Tone4. Set the Tone

• Speak in a calm, Speak in a calm, relaxed voice.relaxed voice.

• Give facts in an Give facts in an unemotional tone unemotional tone of voice.of voice.

• Model positive Model positive acceptance.acceptance.

5. Share the Agenda5. Share the Agenda

• Live Out LoudLive Out Loud

• Let the student Let the student know the sequence know the sequence of upcoming of upcoming events.events.

• Provide Provide information about information about time periods.time periods.

Prepare a schedule for daily Prepare a schedule for daily routines. A calendar may be routines. A calendar may be

helpful! helpful!

Arrange schedules from top to Arrange schedules from top to bottom or left to right - allow bottom or left to right - allow

way to check off or remove way to check off or remove task when donetask when done

6. Simplify Language6. Simplify Language

• Keep your language concise and Keep your language concise and simple.simple.

• Tell the student specifically what to Tell the student specifically what to do.do.

• Break down tasks into components.Break down tasks into components.

Giving the child checklists is particularly helpful when they Giving the child checklists is particularly helpful when they has to complete short series of related activities or when has to complete short series of related activities or when they need to organize a group of materials. For a chore at they need to organize a group of materials. For a chore at home they might need a checklist for completing the steps home they might need a checklist for completing the steps

necessary to clean their room.necessary to clean their room.

make your bed _____put away your clean clothes _____put your books on the shelf _____put your school notebook in your backpack _____put your toys in the toy bin _____sweep the floor _____

7. Manage Change of 7. Manage Change of PlansPlans

• Handle changes PROACTIVELY!Handle changes PROACTIVELY!

• Incorporate “back-up” plans for Incorporate “back-up” plans for which you can control the variables.which you can control the variables.

Field Trip to Science Museum

8. Provide Reassurance8. Provide Reassurance

• The student with AS The student with AS NEVER KNOWS NEVER KNOWS WHAT IS COMING WHAT IS COMING NEXT!NEXT!

• Reassure the child Reassure the child about the sequence of about the sequence of events.events.

• Utilize “check-ins”Utilize “check-ins”

9. Be Generous with 9. Be Generous with PraisePraise

• Find opportunities Find opportunities to to build-up/complimebuild-up/compliment the student.nt the student.

10. Increase 10. Increase Opportunities to Engage Opportunities to Engage

in Activities of High in Activities of High Interests and/or StrengthsInterests and/or Strengths

• Access to preferred Access to preferred peers/adultspeers/adults

• Allow individual workAllow individual work• Schedule for activities Schedule for activities

individual enjoysindividual enjoys– computercomputer– readingreading– drawingdrawing

• Adreon & Gitlitz, 1998Adreon & Gitlitz, 1998

11. Listen to the WORDS11. Listen to the WORDS• Words convey the meaning for children with Words convey the meaning for children with

AS.AS.• Listen to what the child is saying.Listen to what the child is saying.• Interpret what the child is saying literally!Interpret what the child is saying literally!• ““Probe” for further informationProbe” for further information• Encourage clarificationEncourage clarification

Students might also be able to Students might also be able to communicate more effectively if given some communicate more effectively if given some

structure to help talk about their day.structure to help talk about their day. On the way to school today on the bus, I_________________________________________________________________________.One thing that happened in homeroom today was__________________________________________________________________.In science and social studies today, I did two things,They were__________________________________________ and__________________________________________________.In math and English, I did two things___________________________________________________ and__________________________________________________.One more thing that I did today was_____________________________________________________________________________.A difficult thing that I did today was______________________________________________________________________________.A really fun thing that happened today was_______________________________________________________________________.

12. Recognize “Teachable 12. Recognize “Teachable Moments”Moments”

• Orchestrate positive exchangesOrchestrate positive exchanges

• Provide direct feedbackProvide direct feedback

• Capitalize on your child’s Capitalize on your child’s strengths/interests!strengths/interests!

13. Be Realistic!13. Be Realistic!

• You’re only You’re only human!human!

• Do the best you Do the best you can! can!

• Be patient with Be patient with yourself! yourself!

• Remember, the Remember, the child is doing the child is doing the best he/she can!best he/she can!

14. Increase Social 14. Increase Social SupportsSupports

• Utilize Your CommunityUtilize Your Community• Increase ReassuranceIncrease Reassurance• Increase Clarity of FeedbackIncrease Clarity of Feedback• Increase Access to People They LikeIncrease Access to People They Like• Protect from Teasing/BullyingProtect from Teasing/Bullying• Schedule “Support Talk”Schedule “Support Talk”

• D. Adreon, 1998D. Adreon, 1998

15. Set up System for 15. Set up System for Monitoring Monitoring

• Often difficult to recognize signs of Often difficult to recognize signs of stress & anxietystress & anxiety

• Need to carefully monitor how the Need to carefully monitor how the student is doing in various social student is doing in various social situations (through situations (through observation/interviews)observation/interviews)

• Carefully monitor whether Carefully monitor whether schoolwork is being completed and schoolwork is being completed and turned itturned it

• DON’T LET PROBLEMS BUILD UP! DON’T LET PROBLEMS BUILD UP!

Stabilization StrategiesStabilization Strategies

The goal is to help the individual The goal is to help the individual survive each day successfullysurvive each day successfully

– Lower expectationsLower expectations– Do not teach new tasks at this timeDo not teach new tasks at this time– Increase supportsIncrease supports– Reduce stressorsReduce stressors

Five Steps to Five Steps to Remember to Help Remember to Help

Stabilize when Stabilize when Problems OccurProblems Occur1)1) Gather information from a number Gather information from a number

of sources to assess the student’s of sources to assess the student’s emotional state.emotional state.

2)2) Determine the stressors that exist in Determine the stressors that exist in the environment.the environment.

3)3) Decrease the stressors by modifying Decrease the stressors by modifying the requirement for disliked and/or the requirement for disliked and/or difficult tasks and temporarily difficult tasks and temporarily eliminating any emphasis on eliminating any emphasis on teaching new skills teaching new skills (con’t)(con’t)

Stabilization Stabilization (con’t)(con’t)

4.4. Make the environment more Make the environment more predictable and increase the use of predictable and increase the use of home base.home base.

5.5. Balance stressors and learning.Balance stressors and learning.

Be Patient with Be Patient with Yourself!Yourself!

Thank you for Thank you for coming !coming !

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