THE TOP TEN THINGS
PROFESSIONALS NEED TO
KNOW TO HELP INDIVIDUALS
WITH AUTISM AND THEIR
FAMILIES
M. E. Van Bourgondien, Ph.D.
TEACCH
Autism Program
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Evidence-based practice is a process of
integrating different sources of
information
Best available empirical evidence
Family wisdom & values
Professional wisdom & values
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Source – Adults with Autism
What did other people do that contributed
to your success as an adult?
What do you wish all parents, teachers and
other professionals knew that would have
helped me prepare for working and living
as an adult?
Interview with David
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Source –Parents of Adolescents and
Adults with ASD
What do you know now that you wish you
knew then?
What do you wish professionals knew that
could have helped you and your child?
What were things professionals did that
were helpful?
Interview with Linda (Alex’s mother)
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1. Recognize, Understand and
Appreciate the Autism
Know about the learning styles of
people with autism
Strengths
Weaknesses
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1. Recognize, Understand and
Appreciate the Autism
Invisible Disability
“Can’t look at someone and make a
diagnosis…not a physical characteristic”
“Others perceived me as not living up to
my potential…lazy”
“Flat affect and monotone can lead to
misperceptions”
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Alex- Learning Style/ Expectations
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1. Understand and Appreciate the
Autism
Every child with autism is different.
“….,therefore my child may require something
different then last year’s student.”
“Everyone assumes everyone is like
them…leads to communication difficulties”
“People start with different assumptions than
where I am starting….I get confused and they
get frustrated”
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2. Goals for Interventions
Encourage and teach independence
Organizational skills
Flexibility
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2. Goals for Interventions
Have clear expectations
Teach, coach and support acceptable
behaviors and skills
Have a balance between expectations of
growth and change in behaviors and
skills and acceptance of who they are as
a person
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2. Goals for Interventions
Uneven development makes
establishing appropriate expectations
hard
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2. Goals for Interventions
Regardless of school setting or
functioning level, teach everyday
functional skills- self care, cleaning,
cooking, setting the table, hygiene,
dental care, making the bed, washing
clothes, ironing, money management
and financial planning, community
survival skills.
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2. Goals for Interventions
Skills to be taught also include
 Social skills
 Communication skills
 Problem solving skills
 Stress management
 How to prevent and respond to bullying
 Safety
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Needs
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3. Intervention –
Use Autism Specific
Intervention Strategies
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Intervention Strategies
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3. Intervention Strategies
Visual learner-Use checklists,
schedules, books with pictures,
diagrams, charts - earlier, more
consistently and throughout their life
(written and picture). Use of videos
and pictures to learn social skills. Give
copies of notes. Write it down, draw a
picture, give them an object- make it
visual!
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Most helpful strategy
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3. Intervention Strategies
Use interests to motivate
Make things meaningful
Recognize literalness-give clear
instructions
Give the “why” behind the activity
Provide an opportunity to do
something he /she enjoys each day
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3. Intervention Strategies
Tone of voice is important
Need extra time to process
information
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3. Intervention Strategies
Stress reduction interventions
Systematic relaxation
Breathing
Take a break
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Relaxation
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3. Intervention Strategies
Speech Therapy
Counseling/therapy
Occupational Therapy
Social skills groups
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4. Parent Perspective
Life as a parent of a child with autism
is very stressful
Physically
Emotionally
Financially
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4. Parent Perspective
Self care needs to be a priority
“Wish I had known how much stress was
involved and how this would affect
family”
“If I could do it again. I would have
taken better care of myself”
“You have got to have a life outside
autism”
Sleep and humor are essential
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4. Parent Perspective
Guilt is a common emotion that
affects perceptions and interactions
“If something bad happens or if there is
no improvement, I feel guilty”
“Feeling guilty is a huge part of having a
child with a disability”
“I need someone to lessen the guilt , not
add to it”
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Parent Perspective
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4. Parent Perspective
Professionals mainly see us when we
have hit a bump in the road
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5. Choosing Appropriate Services
Need information about available
services
Behind every question is a mother
who feels guilty. Provide reassuranceDo not have to do everything .
“Choose what makes sense to you and
what you and your family can
manage.”
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5. Choosing Appropriate Services
Need reassurance that there is not a
small window of opportunity- life long
learners or only one right approach
Pick a circle of real people to
advise you
Parents should be careful and use
their judgment about interventions
and information
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5. Choosing Appropriate Services
Professionals should allow parents to
seek the treatments they would like
to try giving them the parameters for
assessing
Resources change over time (And
resources and needs vary from person
to person). Encourage parents to
check back in from time to time.
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6. Siblings- Parents wish they had
known more about
How siblings would affect the child with
autism
How the sibling with autism would affect
the siblings now and in the future
How the siblings role would change over
time
Many siblings have increased
responsibilities, decreased time, impacts
their friendships, concerns about genetics
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Morrell and Palmer, 2006
Siblings have a unique perspective
May need permission to discuss
feelings
May need outside support +/or special
times
Not all activities have to involve
whole family
Appreciate normal sibling behavior
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7. Developmental Issues
Professionals need to be
knowledgeable about how having
autism interacts with normal
developmental processes.
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7. Developmental Issues
Parents need more information on
developmental changes
What steps will they take?
How does typical development interact
with autism?
What will adolescence be like/ puberty?
How will needs change?
How will children/teens/ adults thinking
change?
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7. Developmental Issues
Biological Issues
Psychological Issues
Emotional Issues
Cognitive Issues
Social Issues
5 year old
Enters school
Teenager
Puberty
Young
adult
Adult
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Typical Development
 Physical changes with age
 Stages characterized by impulse for
change
 Looking for meaning in life’s
activities
 Checking progress toward goals and
aspirations
 Looking for areas of life to control
and make choices
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Complications in Development for
Individuals with Autism
 Fewer areas of life where they can
exert control and make choices
a. Relationship with family
b. Social Relationship
c. Recreational activities
d. Living Situation/chores
e. Educational/vocational
activities-Job
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Complications in Development for
Individuals with Autism
 Trouble seeing big picture and
problems with abstract thinking make
it hard to evaluate meaning of life
 Trouble making connections between
how what he/she is doing affects
reaching goals or objectives
 Supervised settings can lead to
extended adolescence
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Complications in Development for
Individuals with Autism
 Physically seem to age faster
 Rituals and obsessions become more
predominant if environment is
stagnant. Less use of visuals in
environment with familiar routines
results in greater inflexibility and preoccupation with non-functional
routines
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Implications of Developmental
Differences
 Highlight areas of control/choices
 Make visual connections between
the sequence of the day, behavior
and consequences immediate
 Provide opportunities for novel
experiences- new people, new
activities, new contexts
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7. Developmental Issues
Know the needs of families
Transition services
Service changes
Team approach
Draft at 18 for males- register or get
waiver
Guardianship
Financial issues/Wills/ Trusts
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7. Developmental Issues- Parent
Emotions the same during this
transition to adulthood as they were
when first received the diagnosis
Guilt continues as parent and child
get older parent wants own time and
may “forget about the autism”
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8. Preparing for Employment
Education does not always prepare
for work
Pick job based on match with skills
and interest
Beware of jobs which require team
work or social interactions
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Employment
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8. Preparing for Employment
Jobs with specific way of doing things
easier than less rigid jobs
Single task jobs easier
Single boss who gives concrete direct
feedback best
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8. Preparation for Employment
and Living away from home- Skills
that transfer
Organizational skills, setting
priorities, or managing time still
important skills
Coping with stress
Leisure skills- taking a break
Asking for help
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Asking for help
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9. Good Communication is Essential
for Positive Collaboration
Collaboration=Interpersonal
collaboration is a style for direct
interaction between at least two coequal partners voluntarily engaged in
shared decision making as they work
toward a common goal. (Friend and
Cook, 2007)
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Collaboration
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9. Communication/ CollaborationKey Ingredients
Listening without judgment or making
assumptions
Develop a communication system between
teacher or parent- child can not tell what
happened during the day
Be sensitive in how we say things to a
family
Power of compliments
Power of apology
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10. WHAT DID I LEARN FROM THIS
EXERCISE?
 Importance of perspective
taking
 Do not make judgments or
assumptions
 Individualization applies to
parents and professionals
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10. WHAT DID I LEARN FROM THIS
EXERCISE?
 Life is stressful for
individuals with autism
and their families
 Stressors resurface at new
stages of development
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10. WHAT DID I LEARN FROM THIS
EXERCISE?
Needs change with age
for individual and the
family- Look for
threads
 Self advocacy
 Independence
 Flexibility
 Generalization
 Well being
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Reference
Morrell, M.F. and Palmer, A. (2006) Parenting
Across the Spectrum; Unexpected lessons we
have learned. Philadelphia: Jessica Kinsley
Publishers.
Lehman. A.L. (2009) Life Lessons from My
Silent Son.
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Thank you to David and Linda and
all the parents and adults with
autism who shared their stories
with me
Special thanks to Kathy Hearsey, Mike Chapman and
Pam DiLavore for the help making the video clips
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