The Department of Communicative Disorders (CD)
California State University (CSULB)
Presenters:
Carolyn Conway Madding, Ph.D., CCC-SLP
Professor and Chair, CSULB
Michelle Powers-Lundvall, M.A., CCC-SLP
Full-Time Lecturer, CSULB
Ursula Jarrin, B.A.
International Graduate Student
2
Overview of presentation:
A. Motivation for the Study
B. Autism Spectrum Disorders (ASDs)
Data & Statistics (CDC, 2013)
C. Literature Review – Parental Surveys
D. Presentation of Survey and Findings
E. Highlights & Implications of Survey
F. Data from Interactive Autism Network (IAN)
G. Case Studies
H. Audience Sharing
3
A. Motivation for the Study

Learning more about our
clients with ASD and
their parents, from our
Autism and Culturally &
Linguistically Diverse
(CLD) clinics at CSULB.

Gaining a deeper insight
into parents’
perspectives regarding
autism for further support
and understanding.
4
B. Autism Spectrum Disorders (ASDs)
Data & Statistics (CDC, 2013)
PREVALENCE
-1 IN 88 CHILDREN HAVE BEEN IDENTIFIED w/an
ASD
-ASDs ALMOST 5X MORE COMMON AMONG BOYS
(1 in 54) THAN GIRLS (1 in 252)
-ASDs OCCUR IN ALL RACIAL, ETHNIC &
SOCIOECONOMIC GROUPS
5
RISK FACTORS & CHARACTERISTICS
-AMONG IDENTICAL TWINS, IF ONE CHILD HAS AN ASD,
OTHER TWIN WILL BE AFFECTED 36-95% OF THE TIME
-PARENTS WITH A CHILD w/an ASD HAVE 2-18% CHANCE
SECOND CHILD WILL BE AFFECTED
-CHILDREN BORN TO OLDER PARENTS AT HIGHER RISK
FOR ASDs
-SMALL PERCENTAGE OF CHILDREN BORN PREMATURELY
OR w/LOW BIRTH WEIGHT AT GREATER RISK FOR ASDs
-MAJORITY (62%) OF CHILDREN IN CDC’s MONITORING
NETWORK (ADDM) IDENTIFIED w/an ASD DID NOT HAVE
INTELLECTUAL IMPAIRMENT (Intelligence quotient <=70)
6
DIAGNOSIS
-RESEARCH HAS SHOWN DIAGNOSIS OF ASD AT AGE 2 CAN
BE RELIABLE, VALID & STABLE
-MORE CHILDREN ARE BEING DIAGNOSED AT EARLIER AGES-A
GROWING NUMBER (18%) BY AGE 3
-MOST CHILDREN NOT DIAGNOSED UNTIL AFTER AGE 4
-EARLIER FOR CHILDREN w/AUTISTIC DISORDER (4 years)
-SOMEWHAT LATER FOR CHILDREN MORE BROADLY-DEFINED
ASD (4 years, 5 months)
-MUCH LATER FOR ASPERGER DISORDER (6 years, 3 months)
-STUDIES CONFIRM THAT PARENTS OF CHILDREN w/ASDs
NOTICE DEVELOPMENTAL PROBLEMS BEFORE CHILD’S FIRST
BIRTHDAY
7
C. Literature Review
Gray, 2002 - 77 parents of children with ASD in Queensland,
Australia
10-year longitudinal study
Stages of Family Adaptation to ASD:
1. Onset-intense stress to obtain diagnosis and treatment
2. Stress lessens-but, struggle continues for best treatment
options
3. Adolescence-exacerbation of problems; parental
exhaustion
4. Realization of long-term effects; tenacity of disabilities
8
C. Literature Review
Gray’s study–Showed improved relationships with extended
family over time
-Less concern about public behavior; better
coping skills
-More successful communication
Other changes over the 10 years of Gray’s study:
-More concern about violence; failure of child to
“recover”
-Reduced quality of life
-Criticism of available services
9
C. Literature Review
Phelps, McCammon, Wuensch, & Golden, 2009–295
parents of children with ASD in North Carolina surveyed
re: support
Results:
-Stress was buffered by support from families,
spouse, similar families
-Formal support through early intervention
and other services rated both helpful and
unhelpful
10
C. Literature Review
Bayat (2007)–(N-175)
-Only study reporting positive effect on parents of children
with ASD
-Cited person and spiritual growth
-Greater appreciation of life–more focus on wisdom
and self-actualization
11
C. Literature Review
Other surveys…
-Showed disruption in family functioning
-Resentment of siblings due to restrictions in
family life
-Parent and sibling embarrassment
-Sibling feelings of neglect
12
C. Literature Review
ISSUES WITH BILINGUALISM:
-More than 300 languages spoken in the US
-Approximately 1 in 5 residents of the US over age 5
speaks a language other than English
-Parents seek clarity about bilingualism and ASD
Professionals, including SLPs, often caution parents
to speak English only
Cite confusion and overstressing language system
-Contradicts ASHA position (2011); must show
deference to family preference
13
C. Literature Review
-No research shows detrimental effect of heritage
language on language impaired children
-Intervention should be provided in heritage language of
children with impairments (Kohnert, Yim, Nett, Kan &
Duran, 2005) and others
-Yu (2013) cited biggest challenge to Chinese parents of
child with ASD…
lack of available intervention in Chinese languages
14
D. Presentation of Survey and Findings
1. Participants
2. Examiner
3. Pilot Questionnaire
4. Procedure
5. Findings
15
1. Participants
-18 Parents of children and adults
with an official diagnosis of autism
(Ages: 4-43, Male:17, Female:1).
-Participants are enrolled in the
CSULB Speech-Language Clinics
(i.e., Autism, Culturally &
Linguistically Diverse (CLD)).
-Ethnicities of participants:
Latino, Euro-American, African
American, Korean & Chinese.
16
2. Examiner
-International student from Peru.
-Bachelor’s Degree in Psychology,
CSULB (2009).
-Second-year Communicative
Disorders M.A. student at CSULB.
-Administered questionnaire as part
of Directed Studies Course with Dr.
Madding, Autism Clinic with
Michelle Powers, and interest in
autism.
17
3. Pilot Questionnaire
-Developed by Sonja Young, CD
graduate student, and modified by
presenters.
-Twenty-four open ended
questions, including one “sharing”
question for parents to provide
insights/concerns.
-Three versions: English,
Spanish, and Korean.
18
4. Procedure
-Examiner contacted parents of clients in Autism
and CLD clinics.
-Examiner administered questionnaires in English
and Spanish, either in a private room at CSULB or
via telephone, according to each parent’s
preference and convenience.
-Parents were notified of their confidentiality rights
by the examiner before the interview began.
19
5. Findings
-A total of 24 responses were obtained from
pilot questionnaire.
20
1. At what age did your child/children first
receive a diagnosis of Autism Spectrum
Disorder (ASD) ?
17/18 parents reported diagnoses between 2
and 6 years of age.
1/18 parent reported a “very late” diagnosis
(i.e., 13 years-of-age).
21
2. What was your initial reaction to the diagnosis?
Why?
13/18 parents reported feelings of disbelief,
complete shock, sadness, worry and being
upset. In one case, parent reported feelings of
depression.
Reported reasons for feelings:
-Lack of knowledge about autism
-Uncertainty about what to do
-Worries about the child’s future
22
2. What was your initial reaction to the
diagnosis? Why?
A few parents (3/18) reported feelings of relief, and
in one case of “peace”.
The predominant reasons for these feelings were due
to receiving the “Autism Label”:
-Opening the door for services
-Helping explain child’s behaviors to themselves
and others
1 parent reported “being prepared” and encouraged the
evaluation.
23
One mother’s testimony of her initial reaction
towards the autism diagnosis…
“I can remember that day like it was just
yesterday. I couldn't stop crying…there were
days when I would lock myself in a room and cry
and cry and cry. It was really hard to understand
and accept that my child had autism.”
Anonymous
24
3. Do you feel the diagnosis was received at an
appropriate age, or should it have been
received earlier? Why?
Most parents (12/18) felt that the diagnosis
should have been known earlier.
The following reasons were given:
-Mothers or extended family
suspected and felt there
was something “wrong”
-Child presented with autism
“red-flags” (limited communication/
social abilities)
25
3. Do you feel the diagnosis was received at
an appropriate age, or should it have been
received earlier? Why?
Some parents (5/18) felt that the diagnosis was
made at the right time…
Because child was presenting autistic-like
characteristics at the time of the initial diagnosis.
Only 1 parent reported “not being sure.”
26
4. What resources for information and support
were offered to you at the time of diagnosis by
the professional making the diagnosis?
Mixed results:
10/18 parents expressed disappointment for not
having been offered information and support.
8/18 parents reported having been offered
parenting classes, support groups, information
about autism, and/or services for their children.
27
A mother’s testimony of her views on
information/support the time the autism diagnosis
was made…
“There was no support for me when I was first
given the autism diagnosis. It’s like professionals
telling you, your son has cancer, and sending you
home without any solution or at least hope or
moral support…”
Anonymous
28
5. What resources for information and support
have been offered to you in the
days/months/years following the initial
diagnosis?
Most parents (12/18) reported having been
offered resources for information and support at
the time following the initial diagnosis, mainly, in
the form of…
-Support group information, parent classes,
general autism information, and/or services for
their children.
29
5. What resources for information and
support have been offered to you in the
days/months/years following the initial
diagnosis?
Other parents (6/18) reported not having been
offered any information or support at the time
following the initial diagnosis.
Some of them felt as if they had to really “push”
the system to obtain services and information,
and reported “struggling” to find support and
resources on their own.
30
A mother’s testimony of her views on
information/support following the time the autism
diagnosis was made…
“It is very important to share information with
other parents and students. I would have
appreciated having information and support
following my child’s diagnosis. I am now a
volunteer. I organized a group and provided
information to parents of children with autism.”
Anonymous
31
6. From whom did you receive these
additional resources for information and
support?
Parents who reported having been offered
resources for information and support following
the time after the initial diagnosis, often listed the
following sources:
-Regional Center
-Public school
-Other parents & friends
32
7. Do you feel there are additional resources
for information and support that you have
had to research on your own? Where did
you find these resources?
All parents (18) felt there were additional
resources for information and support that they
had to research on their own.
The following chart shows where parents were
able to find additional resources:
33
7. Do you feel there are additional resources for information and support
that you have had to research on your own? Where did you find these
resources?
Additional resources
• The Internet
• Other Parents
• Local Autism Groups
• The Regional Center
• Autism Conferences
• Parent Support Groups
34
8. How many hours per week do you
devote to obtaining services and providing
care for your child/children with ASD?
Range of hours/week devoted for obtaining
services and providing care were reported as
follows:
Hours per
Week
Range
Services
2-13 hours
Care
50-65 hours
35
9. Do you feel your relationships with your
spouse, other children and friends suffer due to
the time you must devote to your child/children
with ASD? In what ways?
Almost equally divided views:
Most parents (10/18) felt that their relationships
with spouse, other children, and friends suffer
due to the time devoted to caring for their
child/children with ASD.
These parents reported having less time for
socializing, keeping in touch, and spending
quality time with others.
36
9. Do you feel your relationships with your
spouse, other children and friends suffer due to
the time you must devote to your child/children
with ASD? In what ways?
Some parents (8/18), however, felt that their
relationships with spouse, other children, and
friends Did Not suffer due to the time devoted
to caring for their child/children with ASD.
37
A mother’s testimony of her views on relationships
and the time devoted to her children’s care…
“I don’t have any friends, I can’t call anybody or
go out, I feel lucky that the relationship with my
husband has not ended. We don’t get to spend
any quality time.”
Anonymous
38
10. How do your other children (if
applicable) react to having a sibling with
ASD?
Question #10 did not apply to 8 of the 18 parents
who were interviewed (7 reported child with ASD as
“only child”, 1 reported both of her children as being
diagnosed with ASD).
Question #10 did apply to 10 of the 18 parents
who were interviewed. The results were as follows:
39
10. How do your other children (if applicable)
react to having a sibling with ASD?
From 10/18 parents,
-6 parents expressed that their other children have a
loving and typical relationship with the sibling with ASD.
-4 parents reported that relationships are affected and are
not typical due to other children experiencing:
-Difficulties in playing and interacting with their sibling
-Feelings of frustration or annoyance with their sibling
40
A mother’s testimony regarding her daughters’
reactions to having a sibling with ASD:
“It was difficult explaining to my other children about autism. I can
remember the day that they told me they didn’t want their brother; they
wanted a brother who wanted to play with them. This made me cry a lot.
I explained to them that their brother was different and that it was not his
fault. They still didn't seem to understand. I took them to Long Beach
Memorial Hospital for an event that was being held for children with
disabilities and handicaps. As my daughters saw the other children with
various issues, I could see something happening within them. Later that
day they told me that what their brother had was nothing compared to
the other children they had seen and that they did accept their brother
the way he was. This made me cry, but this time it was tears of
happiness.”
Anonymous
41
11. How does your extended family react to
having a relative with ASD?
14/18 parents reported a positive reaction from the
extended family. They described the reactions with
one/some of the following attributes:
-Supportive
-Helpful
-Understanding
-Loving
A few parents (4/18) reported extended family as
being “neutral” (i.e., not helpful or not understanding).
42
12. How do members of your community
react to your child/children with ASD?
6/18 parents reported mixed feelings about the
community (e.g., strangers are judgmental &
church/neighbors are accepting).
6/18 parents reported the community is accepting
and understanding.
4/18 parents reported the community is
judgmental.
2/18 parents reported the community is
indifferent.
43
Anonymous testimonies from parents regarding
their feelings towards the community:
“Neighbors and the church are very
understanding, but when out in the
community…people would stare weird at my
son.”
“Out in the community it’s very hard to
have people understand about autism…”
“When we are out, my son is criticized
inadequately, like if he was throwing a tantrum
or misbehaving…”
44
13. In your culture, is ASD widely recognized and
discussed? Why do you thinks so?
CULTURE
Is ASD widely
recognized?
Why parents think so?
Euro-American
&
African
American
Yes
-Autism is in the media
-People talk about autism
-More information & support
groups
Latino
Korean
&
Chinese
Not sure, most
think no
Not sure, most
think no
-Some people talk about
autism
-But, people worry about
other disabilities
-Older generations not
aware, since autism is not
“visible”, younger
generations may be more
aware
45
An Asian mother’s testimony of her views on
autism awareness:
“In the U.S. the media gives a lot of
information on autism, but still people are not
empathetic; they are close minded …people
think children with autism are “crazy” since the
disability is not visible like in mental
retardation or blindness. When the disability is
visible people are empathetic, helpful, and
nicer…”
Anonymous
46
14. In your culture, what is thought to be the cause of ASD?
Do you think this view is accurate?
CULTURE
THOUGHTS ON
CAUSE OF AUTISM
-Vaccinations
Euro-American -Environmental factors
&
-Heredity
African
-Unknown
American
Latino
Korean
&
Chinese
IS VIEW
ACCURATE?
-Most parents lean
towards the
vaccination &
environmental
hypotheses but not
sure if either view is
accurate
-Heredity
-Environmental factors
-Unknown
-Most parents not
sure which view is
accurate
-Karma
-Unknown
-Karma view is not
accurate
47
15. Do you feel your child/children with ASD could
function as an adult in society without ongoing care
from you/other caregiver? Why or why not?
14/18 parents reported that their child/children
could either not function as an adult or that they
were not sure yet.
4/18 parents reported that their child/children
could function as an adult.
The following chart depicts the reasons for both
beliefs:
48
15. Do you feel your child/children with ASD could function
as an adult in society without ongoing care from you/other
caregiver? Why or why not?
Reasons why
parents thought
children could not
function
-Limited
communication skills
Reasons why
parents thought
children could
function
-Motivation
-Difficulties managing -Independent
daily tasks/self-care
personality
-Safety issues,
require supervision
-Ability to learn (slow
pace, but can learn)
49
16. In the event that you are no longer able to
care for your child/children with ASD, what
resources do you have at your disposal for
his/her care?
Half of parents (9/18) reported family members
as designated caregivers for their children.
Other half (9/18) were either “not sure yet” or
reported a group home as a care option for their
children.
50
17. Do you feel these resources will be adequate
to provide the care your child/children requires?
Why or why not?
Almost equally divided views:
Most parents (10/18) reported uncertainty (i.e.,
resources won’t be adequate/don’t know):
“Others will mainly babysit my son and not
teach him how to think…they will
not advocate for him.”
“My son is too much responsibility…”
51
17. Do you feel these resources will be
adequate to provide the care your
child/children requires? Why or why not?
Some parents (8/18) reported that they felt
resources will be adequate since they can trust
their family; “family is supportive and loving.”
52
18. Do you feel your child/children with ASD
have received/is receiving an appropriate
education in the public school system? Why
or why not?
Question #18 did not apply to 4 of the 18 parents who
were interviewed (i.e., child/children enrolled in private
school/home-school or, in one case, son was over 40
years of age).
Question #18 did apply to 14 of the 18 parents who
were interviewed. The results were as follows:
53
18. Do you feel your child/children with ASD
have received/is receiving an appropriate
education in the public school system? Why
or why not?
Mixed results:
Half the parents (7/14) reported not being satisfied with
the education received by their children; other half (7/14)
reported being satisfied.
The following chart depicts the reasons given by both
groups:
54
18. Do you feel your child/children with ASD have received/is
receiving an appropriate education in the public school
system? Why or why not?
Reasons why
parents were not
satisfied
Reasons why
parents were
satisfied
-Curriculum is not
tailored to child’s needs
(too fast/too slow)
-Curriculum is tailored to
child’s needs (small
class, interactive)
-School focuses on
“babysitting” vs.
academics
-Curriculum focuses on
functional
aspects/independent
skills
-No behavioral supports,
learning can’t take place
-Teacher is supportive
and dedicated
55
19. Do you feel your child/children with ASD
has received/is receiving all additional
services due to them from the public school
system? Why or why not?
Majority of parents (i.e., 9/14) whose
child/children attend public school expressed
dissatisfaction regarding provision of services.
4/14 parents were thankful for services and/or
understand school’s limitation of funds, and 1/14
parent reported “not being sure.”
56
19. Do you feel your child/children with ASD has received/is
receiving all additional services due to them from the public
school system? Why or why not?
Reasons why parents were not
satisfied
-Child is not receiving all services
needed
-Child is receiving all services
needed, but not in adequate
frequency nor duration
-Parents feel they have to struggle
to obtain services at school, thus
have to acquire them privately
57
20. If not enrolled in public school, is your
child/children with ASD home-schooled or enrolled in
private school?
As reported by parents:
14
2
Children are
Children are
enrolled in
enrolled in
public schools private schools
1
Child is home
schooled
58
21. Has your child/children with ASD always been
home-schooled/enrolled in private school, or did you
withdraw your child/children from the public school
system?
Type of School
Always enrolled or withdrawn
from public school system ?
Private school
Participant 1 & 2
Withdrawn from public school
Home-school
Participant 3
Always home-schooled
59
22. If you withdrew your child/children from
the public school system, when and why did
you make this choice?
Participants
withdrawn from
public school to
private school
When parents
made choice
Reasons why
parents made
choice
Participant 1
A year ago (i.e.,
2012)
-Safety reasons
-Bullying
December, 2012
-Not receiving
adequate attention
or education
Participant 2
60
23. If your child/children with ASD is not enrolled in
the public school system, how are you obtaining the
full range of services that would be provided through
the public school?
Type of school
Private School
2 participants
Home School
1 participant
Services are obtained:
-Parents own funds and/or
private school
-Parents own funds
-Asking friends and
educational consultant for
advice
61
24. Please share any other information regarding
your child/children with ASD and your concerns
which have not been addressed in the preceding
questions.
“If it wasn’t for my efforts and pushing for services
and resources, both my children with autism could be
doing worse…”
“I worry about my child’s future, I want him to pay
attention and be independent. Maybe through
technology, ipad or computers, he could be able to do
so.”
“My main desire is for my son to have a friend…”
62
E. Highlights & Implications of Survey
Overall, what we learned from the survey on
parental perspectives has implications for…
SLPs and Student Clinicians:
-Counseling courses
-Mentoring the parents
-Mentoring the community
-Being an advocate for ASD
63
F. Data from Interactive Autism Network (IAN)
http: //www.ianproject.org
-
IAN ESTABLISHED IN 2006 & SUPPORTED BY KENNEDY
KIEGER INSTITUTE
-
PURPOSE: TO ACCELERATE ASD-RELATED RESEARCH VIA
A NATIONAL REGISTRY & LONGITUDINAL RESEARCH
DATABASE
-
NATION’S LARGEST ONLINE AUTISM RESEARCH EFFORT
-
SUPPORTS ONLINE COLLABORATION BETWEEN AUTISM
COMMUNITY & AUTISM RESEARCHERS
-
THOUSANDS OF FAMILIES WITH CHILD/CHILDREN ON
AUTISM SPECTRUM ACROSS U.S. SUBMIT INFORMATION
VIA INTERNET
-
LINKS FAMILIES w/RESEARCHERS FOR PARTICIPATION IN
STUDIES
64
FAMILIES: FROM FIRST CONCERN TO DIAGNOSIS
Table 1.
-PARENTS ARE WAITING: LENGTHY GAP BETWEEN PARENTS’ INITIAL CONCERNS
TO FORMAL DIAGNOSIS
-PARENTS ARE LOSING VALUABLE EARLY INTERVENTION TIME
-IMPLICATIONS FOR EVENTUAL OUTCOMES FOR THEIR CHILDREN
65
FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH
REPORT, 2009, N=4028)

NEARLY 70% OF PARENTS (N=2819) REPORTED A
“MODERATE” OR A “GREAT DEAL OF NEGATIVE IMPACT”
CAUSED BY DIFFICULTY GETTING TREATMENTS

BROAD RANGE OF SERVICES MAY BE REQUIRED FOR
CHILDREN w/AUTISM DEPENDING ON THEIR SPECIFIC
ISSUES INCLUDING:
-SPEECH & LANGUAGE THERAPY
-PHYSICAL THERAPY
-OCCUPATIONAL THERAPY
66
Continuation…

BROAD RANGE OF SERVICES MAY BE REQUIRED FOR
CHILDREN w/AUTISM DEPENDING ON THEIR SPECIFIC
ISSUES INCLUDING:
-SOCIAL SKILLS TRAINING
-MEDICATION MANAGEMENT
-ABA
-DISORDERS THAT CO-OCCUR w/AUTISM: ADHD, DEPRESSION,
ANXIETY

ONE IAN MOTHER SAID, “This is absolutely the MOST
difficult part of having a child with ASD. I am so tired of
fighting.”

ONE FRUSTRATED IAN FATHER COMMENTED, “We are told
early intervention is vitally important but we have no support
in getting or paying for the services. We are completely on
67
our own to help our child.”
FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH
REPORT, 2009, N=4028)

OBTAINING & MANAGING MULTIPLE INTERVENTIONS
IS ASSOCIATED W/
-FINANCIAL BURDENS
-INCREASED STRESS
-MENTAL HEALTH ISSUES

QUALITY & AVAILABILTY OF SERVICES REPORTED BY
IAN PARENTS VARIED WIDELY
-PARENTS IN ONE LOCATION REPORT SATISFACTION
w/ “AUTISM-FRIENDLY” THERAPIES AT CHILD’S
SCHOOL WHILE PARENTS IN ANOTHER LOCATION
EXPRESS DISAPPOINTMENT
68
FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH
REPORT, 2009, N=4028)

IAN PARENT RESPONDED, “The greatest part of this
stress is being considered a ‘difficult’ mother because
every issue is a fight with the school.”

DISAPPOINTING TREATMENTS WERE REPORTED BY
46% of PARENTS (N=1611)

STRESSFUL FOR PARENTS TO INVEST TIME, MONEY,
ENERGY & HOPES FOR INTERVENTIONS THAT DO NOT
YIELD EXPECTED RESULTS
69
FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH
REPORT, 2009, N=4028)

ALTERNATIVES TO QUALITY & AVAILABLILTY OF SERVICES
CAN ALSO BE STRESSFUL

PAYING FOR PRIVATE SERVICES OR GIVING UP
EMPLOYMENT TO HOME SCHOOL A CHILD CAUSES
ADDITIONAL FINANCIAL PROBLEMS

STRUGGLES w/INSURANCE COMPANIES FOR REFUSAL TO
PAY FOR AUTISM INTERVENTIONS ESCALATES THE
STRESS

ONE UPSET IAN MOTHER SAID, “The fact that we have health
insurance, but our HMO refuses to pay for many treatments,
such as Sensory Integration Therapy, ABA Therapy, and
Social Skills Therapy (when offered by a Speech Pathologistinstead of a Psychologist) is incredibly stressful.”
70
FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN RESEARCH
REPORT, 2009, N=4028)

A STAGGERING 89% of PARENTS (N=3585) REPORTED A
“MODERATE” or ‘GREAT DEAL” of NEGATIVE IMPACT DUE
TO WORRY OVER CHILD’S FUTURE

AS THEIR CHLDREN AGE, PARENTS CONCERNS MOVE
TOWARD:
-PROSPECTS FOR INDEPENDENT LIVING
-OPPORTUNITIES FOR EMPLOYMENT
-POTENTIAL ROMANTIC RELATIONSHIPS
-HOW THEIR CHILDREN WILL FARE WHEN PARENTS CAN
NO LONGER ADVOCATE & CARE FOR THEM
71
FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN RESEARCH
REPORT, 2009, N=4028)

MORE PARENTS FELT STRESS ABOUT THEIR CHILD’S FUTURE
THAN ANY OTHER ISSUE INVESTIGATED, EVEN IF THEIR CHILD
WAS HIGHER FUNCTIONING:
89%
72%
70%
68%
48%
46%
WO
C
SE
GE
EX
T
TB
HA R EA
TT
R R HILD
TM
US
Y
BE A C K ING
FO
EN
TI
H
T
S
ON
R
R
A
T
EA
VI
FU
DI
O
T
SA
TU
R
ME
PP
RE
NT
OI
S
NT
ME
NT
72
FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN
RESEARCH REPORT, 2009, N=4028)

ONE IAN MOTHER SAID, “I cannot even put into words
the fear that I feel for my child when I think of his future
without his father and me.”

ANOTHER IAN MOTHER, “I am worried about what
would happen to her if I was no longer around. I don’t
want her brother to be responsible for her for the rest of
his life, but, in probability, he will.”

DESPITE FEARS, MANY PARENTS REMAIN POSITIVE
HOLDING ON TO THEIR SENSE OF OPTIMISM & HOPE
FOR THEIR CHILDREN

ONE IAN PARENT SAID, “What parent doesn’t worry?
But she is such a joy and incredible in her own way that
I know she will find her place.”
73
WHAT DO OUR FAMILIES NEED?

GREATER UNDERSTANDING & MEANINGFUL
SUPPORT ON WHAT MAY BE A LONG JOURNEY

A RESPECTFUL & COMPASSIONATE COMMUNITY

INSURANCE COVERAGE!! or “BETTER” INSURANCE
COVERAGE

INFORMATIVE RESEARCH: EVIDENCE-BASED INTERVENTIONS FOR ALL
INDIVIDUALS w/ASD

TRAINED EDUCATIONAL PROFESSIONALS ACROSS DEVELOPMENTAL
DISABILITIES w/SPECIALIZATION IN ASD

BETTER DISSEMINATION OF CURRENT KNOWLEDGE & PUBLISHED
RESEARCH IN ASD

FOR SLPs: ESTABLISHING RESPECTFUL PROFESSIONAL PARTNERSHIPS
WITH OUR PARENTS/CAREGIVERS
74
SNAPSHOTS OF
OUR CLIENTS
AND CLINICIANS
Photos by Diana Manuel
G. Case Studies
76
H. Audience Sharing
77