How to talk to parents about autism

Marcus Autism Center is an affiliate of Children’s Healthcare of Atlanta. ©2006 Children’s Healthcare of Atlanta Inc. All rights reserved.
How to Talk to Parents
about Autism
Roy Q. Sanders, MD
Medical Director
Director of Psychiatric Services
Director, Pediatric
Neurodevelopmental Center

2 Marcus Autism Center is an affiliate of Children’s Healthcare of Atlanta. ©2006 Children’s Healthcare of Atlanta Inc. All rights reserved.
Autism Spectrum Disorders
A neurodevelopmental disorder that is
characterized by pervasive developmental
problems that must include impairments in
social engagement, difficulties with language
use, and fixations often associated with
repetitive behaviors accompanied by rigidity.

A child labeled today as having an Autism Spectrum
Disorder may look very different from the child
diagnosed 30 years ago with Autism. At that time we
diagnosed children who more closely resembled the
children first described by Dr. Leo Kanner, in the
seminal paper.
Kanner, L. (1943), Autistic Disturbances of Affective
Contact, Nervous Child 2, pp.217-250.
Classic Autism

Screening/Diagnostic Tools
M-CHAT – quick screen 23 items.
CARS –takes about 15 minutes to finish.
ADRS – takes about 20 minutes to complete.
GARS – takes about 20 minutes to complete.
A-DOS – structured observation, “gold standard,” takes about 45
minutes to administer.
A-DI – structured diagnostic interview can take several hours to
complete. Also “gold standard.”

Please fill out the following about how your child usually is. Please try to answer
every question. If the behavior is rare (e.g. you've seen it once or twice), please
answer as if the child does not do it.
1. Does your child enjoy being swung, bounced on your knee, etc.? Yes No
2. Does your child take an interest in other children? Yes No
3. Does your child like climbing on things, such as up stairs? Yes No
4. Does your child enjoy playing peek-a-boo/hide-and-seek? Yes No
5. Does your child ever pretend, for example, to talk on the phone or take care
of dolls or pretend other things? Yes No
6. Does your child ever use his/her index finger to point, to ask for something?
Yes No
7. Does your child ever use his/her index finger to point, to indicate interest in
something? Yes No
8. Can your child play properly with small toys (e.g. cars or bricks) without just
mouthing, fiddling, or dropping them? Yes No
9. Does your child ever bring objects over to you to show you something? Yes No
10. Does your child look you in the eye for more than a second or two? Yes No
11. Does your child ever seem oversensitive to noise? (e.g., plugging ears) Yes No
MCHAT

12. Does your child smile in response to your face or your smile? Yes No
13. Does your child imitate you?
(e.g., you make a face-will your child imitate it?) Yes No
14. Does your child respond to his/her name when you call? Yes No
15. If you point at a toy across the room, does your child look at it? Yes No
16. Does your child walk? Yes No
17. Does your child look at things you are looking at? Yes No
18. Does your child make unusual finger movements near his/her face? Yes No
19. Does your child try to attract your attention to his/her own activity? Yes No
20. Have you ever wondered if your child is deaf? Yes No
21. Does your child understand what people say? Yes No
22. Does your child sometimes stare at nothing or wander with no purpose?
Yes No
23. Does your child look at your face to check your reaction when faced with
something unfamiliar? Yes No
© 1999 Diana Robins, Deborah Fein, & Marianne Barton
Please refer to: Robins, D., Fein, D., Barton, M., & Green, J. (2001). The Modified
Checklist for Autism in Toddlers: An initial study investigating the early detection of
autism and pervasive developmental disorders. Journal of Autism and Developmental
Disorders, 31 (2), 131-144.
MCHAT (cont)

M-CHAT Scoring Instructions
A child fails the checklist when 2 or more critical items are failed OR
when any three items are failed. Yes/no answers convert to pass/fail
responses. Below are listed the failed responses for each item on the M-
CHAT. Bold capitalized items are CRITICAL items. Not all children who
fail the checklist will meet criteria for a diagnosis on the autism spectrum.
However, children who fail the checklist should be evaluated in more
depth by the physician or referred for a developmental evaluation with a
specialist.
1. No 6. No 11. Yes 16. No 21. No
2. NO 7. NO 12. No 17. No 22. Yes
3. No 8. No 13. NO 18. Yes 23. No
4. No 9. NO 14. NO 19. No
5. No 10. No 15. NO 20. Yes

Interventions
There are three well know programs of
intervention
 ABA
 DIR/Floortime
 TEEACH

ABA (Applied Behavioral Analysis)
Applied Behavioral Analysis is a systematic study
and measure of observable behavior and then
manipulating the environment to modify behavior.
The environmental modifications are designed to
increase more socially appropriate and adaptive
behaviors.

ABA (Applied Behavioral Analysis)
Key aspects of ABA are:
 Observation for what behaviors look like and their frequency. What
leads to the behavior and what are the consequences positive and/or
negative for the behavior?
 Breaking down desired skills into steps.
 Teaching the steps through repeated presentation of discrete trials.
 Data on performance is tracked to show changes over time.

DIR (Developmental, Individual-Difference, Relationship-
Based)/Floortime
Floortime is based on the premise that children learn skills
from relationships with significant others in their lives. It is
child directed and based on interactive experiences in a low
stimulus environment ranging from two to five hours a day.
There is a stress on early intervention. The longer a child is left
to engage in his/her own world the more difficult engagement
with the “outside” world becomes. Integration with typical
peers is also important.

TEACCH (Treatment and Education of Autistic and Related
Communication Handicapped Children)
The principles and concepts guiding the TEACCH
system have been summarized as:
Improved adaptation through the two strategies of
improving skills by means of education and of modifying
the environment to accommodate deficits.

TEACCH (cont)
 Parent collaboration: parents work with
professionals as co-therapists for their children so
that techniques can be continued at home.
 Assessment for individualized treatment: unique
educational programs are designed for all
individuals on the basis of regular assessments of
abilities.

TEACCH (cont)
 Structured teaching: it has been found that children
with autism benefit more from a structured
educational environment than from free
approaches.
 Skill enhancement: assessment identifies emerging
skills and work then focuses upon these. (This
approach is also applied to staff and parent
training.)

 Cognitive and behavior therapy: educational
procedures are guided by theories of cognition and
behavior suggesting that difficult behavior may result
from underlying problems in
perception and understanding.
TEACCH (cont)

TEACCH (cont)
 Generalist training:
Professionals in the TEACCH system are
trained as generalists who understand the
whole child, and do not specialize as
psychologists, speech therapists etc.
(Extract from Approaches to autism: an
annotated list published by The National
Autistic Society, 1993 revised 2003).

Psychoactive Medication
Classes of medications:
Stimulants
Alpha Adrenergics
Noradrenergic Reuptake Inhibitor
Antidepressants
Antipsychotics
Anticonvulsants
Other medications

Complementary Alternative Treatments
Complementary and alternative treatments can
include vitamin supplements, medications,
antibiotics, antifungals, diet strategies,
chelation/mercury detoxification, and non-biologic
treatments for language and communication or for
sensory problems.

Complementary Alternative Treatments
Complementary alternative medical and other biological
treatments seem to relieve some symptoms, but there is no
rigorous peer reviewed research supporting any
of the treatments.
 Make sure all your treatment professionals, especially your
physicians, know the treatments given your child.
 Avoid treatments with high risks and high costs.
 You don’t have to pursue every treatment option.

Family Stressors
Research indicates that parents of children with
autism experience greater stress than parents of
children with intellectual disabilities and Down
Syndrome. (Holroyd & McArthur, 1976; Donovan,
1988).

Family Stressors
Lack of language can lead to problems with
frustration both for the parents and the child.
Frustrations can lead to tantrums and
aggressive behavior towards self and others.

Family Stressors
Families struggle with the additional challenges
of getting their child to sleep through the night
or eat a wider variety of foods. All of these
issues and behaviors are physically exhausting
for families and emotionally draining.

Family Stressors
Maladaptive behaviors may prevent families from
attending events together. For example, Mom
might have to stay home while Dad takes the
sibling to their soccer game. Not being able to do
things as a family can impact the marital
relationship. In addition, spouses often cannot
spend time alone due to their extreme parenting
demands and the lack of qualified staff to watch a
child with autism in their absence.

Family Stressors
Parents of children on the autism spectrum may
experience a sense of isolation from their
friends, relatives and community.

Family Stressors
One of the most significant sources of stress is
the concern regarding future care giving.

Family Stressors
Having a child on the autism spectrum can drain a
family's resources due to expenses such as evaluations,
home programs, and various therapies. The caregiving
demands of raising a child with autism may lead one
parent to give up his or her job, yet financial strains may
be exacerbated by only having one income to support all
of the families' needs.

Family Stressors
Current theories of grief suggest that parents of children
with developmental disabilities experience episodes of
grief throughout the life cycle as different events (e.g.,
birthdays, holidays, unending caregiving) trigger grief
reactions (Worthington, 1994). Experiencing "chronic
sorrow" is a psychological stressor that can be
frustrating, confusing and depressing.

Family Stressors
There are also potential sources of stress for siblings. Not all
siblings will experience these issues, but here are some to be
aware of:
• Embarrassment around peers. Jealousy regarding amount of
time parents spend with their brother/sister
• Frustration over not being able to engage or get a response
from their brother/sister
• Being the target of aggressive behaviors
• Trying to make up for the deficits of their brother/sister
• Concern regarding their parents stress and grief
• Concern over their role in future caregiving

Strategies to Address Stress
• Individual, marital or family counseling
• Joining others in advocacy efforts at the local, state or
federal level
• Keeping a daily schedule of things to accomplish
• Writing in a journal
• Deep breathing / relaxation exercises / meditation
• Exercise / yoga
• Prayer
Above slides on Family Stressors adapted from ASA website Adrianne Horowitz, CSW, Director of
Family Services for the Eden II Programs for Autistic Children.

Listen
Remember parents are the experts on their
child. Others may be expert on autism spectrum
disorder, behavioral interventions, education,
medication or the like but only the parents are
expert with regards to their child with Autism
Spectrum Disorder.

http://home.san.rr.com/autismnet/research.html
Autism Research

How to talk to parents about autism

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