Northern Virginia Area Autism Needs Assessment
A comparison of population reported needs, national and best practice standards, and
perceived availability and utilization of supports.
Lisa J. Meier, Ph.D.Evan M. Kleiman, M.A.
ACKNOWLEDGEMENTS
The following report was prepared with the generous assistance of the following organizations:
Parents of Autistic Children of Northern Virginia (POAC-NoVA)
Autism Society Northern Virginia (ASNV)
Organization for Autism Research (OAR)
2
Table of Contents
EXECUTIVE SUMMARY ........................................................................................................... 4
INTRODUCTION ..................................................................................................................... 7
Overview and Purpose .......................................................................................................................................................... 7
Definition of Autism Spectrum Disorders ..................................................................................................................... 7
Epidemiology............................................................................................................................................................................. 8
METHODOLOGICAL OVERVIEW OF THE SURVEY ..................................................................... 8
Development of Survey Questions ................................................................................................................................... 8
Technical Description ............................................................................................................................................................ 9
EPIDEMIOLOGY OF AUTISM SPECTRUM DISORDERS............................................................. 11
Prevalence of ASDs Nationally and Locally................................................................................................................. 11
SURVEY RESULTS ................................................................................................................. 12
Early Identification ............................................................................................................................................................... 12
American Academy of Pediatrics: Identification, Referral and Management ................................................ 12
Age of Diagnosis .......................................................................................................................................................................... 12
Primary Care Physician Awareness and Training ....................................................................................................... 13
Interventions and Services Across the Lifespan ....................................................................................................... 14
Early Intervention Services .................................................................................................................................................... 14
Services Through the Public School System (Special Education)......................................................................... 15
Services Through the Community ....................................................................................................................................... 18
Young Adult and Adult Services ........................................................................................................................................... 18
More Information on Specific Treatments .................................................................................................................. 19
The National Standards Project and Report .................................................................................................................. 19
Speech and Language Therapy ............................................................................................................................................ 20
Applied Behavior Analysis (ABA) ........................................................................................................................................ 22
Psychotropic Medication ......................................................................................................................................................... 22
Barriers to Professional Help Seeking .......................................................................................................................... 23
Help Seeking Behaviors in Crisis Situations ................................................................................................................... 23
The Impact of ASDs ............................................................................................................................................................... 25
Home Training Services ...................................................................................................................................................... 28
RECOMMENDATIONS .......................................................................................................... 29
REFERENCES ........................................................................................................................ 33
APPENDIX A: REPORT OF ALL FINDINGS ....................................... Error! Bookmark not defined.
Appendix B: Glossary ............................................................... Error! Bookmark not defined.
Appendix C: Survey Questions ..................................................... Error! Bookmark not defined.
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EXECUTIVE SUMMARY
Over the past ten years, prevalence rates of Autism Spectrum Disorders (ASDs) in Virginia have
increased dramatically, consistent with the national trend, with most current data suggesting a
prevalence of 1 in every 154 school aged children in Virginia (Office of Special Education Programs;
OSEP, 2010). The Northern Virginia autism community recognizes this increased prevalence as an
emerging public health crisis that puts enormous pressure on affected families and makes
unprecedented demands for services and resources on schools and state and local social services.
By definition, children and adults with an Autism Spectrum Disorder demonstrate deficits in social
interaction and communication and demonstrate the presence of restrictive, repetitive or
stereotyped behaviors to such an extent that there is significant impairment in functioning (APA,
2010). Faced with the daunting challenge of the high prevalence of ASDs and the need for intensive
services across the lifespan, Parents of Autistic Children Northern Virginia Chapter (POAC-NoVA),
the Autism Society of Northern Virginia (ASNV) and the Organization for Autism Research (OAR)
recently engaged the Department of Psychology at George Mason University to conduct a needs
assessment to help guide efforts to identify and meet the service and support needs of affected
individuals and families.
The full report, Northern Virginia Area Autism Needs Assessment: A Comparison of Population
Reported Needs, National and Best Practice Standards, and Perceived Availability and Utilization of
Supports, provides a definition of Autism Spectrum Disorders, describes the methodology of the
survey, summarizes the survey findings, considers best practices and scientific evidence with
regard to services, and offers goals and recommendations for improving the system of services and
supports in Northern Virginia. Relevant demographic characteristics of survey participants, key
findings and recommendations of the full report are summarized below.
Information was collected from 87 families with at least one individual with an ASD in Northern
Virginia between January and June of 2010 via a web based survey. The results represent 97
affected individuals, adults and minors. Low income families were under-represented in the sample
and approximately 43% of families had an annual income of over $120,000. Only 21% of the sample
identified with a race or ethnicity other than Caucasian. In this sample, 100% of families had some
form of health insurance. Despite the sample’s relative affluence and insured status, cost was the
most significant barrier to seeking needed professional services. One can assume that the cost for
needed services is an even greater barrier for lower income or under insured families.
A body of scientific evidence demonstrates that early diagnosis, early and intensive intervention
and an adequate system of supports reduce core symptoms of ASDs and markedly improve a child’s
ability to learn new skills and function in his/her environment, (Inglese, 2009). The American
Academy of Pediatrics (2008) recommends early screening and early intervention even prior to
diagnosis of an ASD. Despite these facts, survey results indicate that on average parents saw three
different health care providers before a diagnosis was made and it took an average of 21 months
following the initial expressed concern to get a diagnosis. Interventions or services did not begin
until a diagnosis was made, meaning these children lost almost two years of critical intervention
time.
4
In general, the frequency and intensity of intervention services
provided through early intervention programs and the public
school system were not perceived to be adequate to meet the
child’s developmental needs and generally did not meet
minimum guidelines for intervention (2009, National Autism
Center). Additional services offered by the community are
perceived as necessary, but not sufficient. Little is available in
the way of young adult/adult services for individuals once they
age out of the public school system and only 17% of respondents
of older children reported that the child’s high school discussed
or helped plan for the child’s needs after high school; only 12%
of families reported feeling prepared for their child to leave high
school.
“[T]here are so many other
therapies which could be
useful … but my insurance
provider views autism as a
learning disability, not a
medical issue, so covers
NOTHING.” (Quote from
survey respondent).
Most interventions to address the core deficits in communication, social interaction, and motor
behaviors are NOT covered by health insurance. Applied Behavior Analysis (ABA), the most
scientifically validated treatment for core symptoms of ASDs across the lifespan is often NOT
covered by health insurance even if the provider is Board Certified. Training parents to provide
ABA services to their own child is also not a covered service, even though well trained parents can
provide quality service. Children with an ASD are nine times more likely to be given a psychotropic
medication than peers despite little research that supports symptom specific efficacy of these
medications.
Respondents were very clear in identifying the barriers to
seeking and obtaining professional services for their
family member. Across all areas of functional need (social,
emotional, communication, behavioral, self care,
academic) cost was the most significant barrier to
professional help seeking. The second most significant
barrier was the long wait for services. Families in this
sample spent an average of $11,282 dollars per year, per
family for ASD related services. In addition, 36% of
primary care givers have given up or lost a job in order to
care for their child. The waiting list for developmental
disability waivers is years long with one family reporting
that they have been on the waiting list for eight years.
Concerns with regard to Medicaid waivers were not adequately addressed in the survey. However,
organizational feedback indicates that the long waiting list, gaps in coverage, and the complicated
eligibility process are a major source of concern and frustration for these families.
“Overall I would just say that
raising a son with ASD is
incredibly difficult and I hope
the results of this survey
demonstrate the need to provide
more support and make services
more easily available to families
and children with ASD. Thank
you.” (Quote from survey
respondent).
Detailed goals for improving the system of services and supports for individuals with Autism
Spectrum Disorders in Northern Virginia and recommendations for how to reach those goals are
provided at the end of the full report. A review of the document, Establishing a Detailed Action Plan
for Serving Individuals with Autism Spectrum Disorders dated November 30, 2010 made available
by the Virginia Department of Behavioral Health and Developmental Services identifies many of the
same services and goals as this needs assessment. Below is a summary of goals and
recommendations from the needs assessment.
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1. It is recommended that the DBHDS in Virginia consider the results of the needs assessment
in determining which services to fund based on their own review.
2. Increase parental and professional awareness of early indicators of developmental delays in
children that may be indicative of Autism Spectrum Disorders and streamline a process of
referral for intervention in any and all areas of delayed development even if a definitive
diagnosis of an Autism Spectrum Disorder has not been made.
3. Address the most significant barriers to professional services for individuals and families
which are affordability and availability.
a. Educate health insurance companies, private and public, that Autism Spectrum
Disorders are neuro-developmental conditions and therefore services to treat core
symptoms should be covered services.
b. Improve and streamline the application and qualification process for receiving
Medicaid waivers and for qualifying for benefits under Social Security.
c. Establish publically funded multi-disciplinary services centers in Northern Virginia
so that families are able to receive the necessary services from qualified providers in
one location at an affordable rate.
4. Establish a network to connect persons with an Autism Spectrum Disorder and their
families to coordinated information and services with an effort to reach individuals who are
English language learners.
5. Mandate availability of high quality comprehensive public school interventions for children
with an AUTISM eligibility coding 12 months of the year.
6. Establish guidelines and programs for adolescents and young adults in the high schools that
support independent functioning such as social interactions, safe relationships, public
safety, grooming/hygiene, money management, cooking, health care, and sex education
even though these areas may not have a direct “academic” impact.
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INTRODUCTION
Overview and Purpose
The Northern Virginia Area Autism Needs Assessment was conducted by members of the
Department of Psychology at George Mason University in cooperation with Parents of Autistic
Children Northern Virginia Chapter (POAC-NoVA), The Autism Society of Northern Virginia (ASNV),
and The Organization for Autism Research (OAR).
This needs assessment was conducted to provide documentation of the critical need for a
comprehensive system of supports for individuals and families in Northern Virginia who have a
diagnosis of an autism spectrum disorder (ASD). A review of the literature was completed to 1)
inform the development of the needs assessment, 2) compare obtained results with best practices
and scientific evidence, and 3) inform recommendations for development and implementation of a
comprehensive system of supports across the lifespan for identified individuals and their families.
Information was collected from 87 families in Northern Virginia with at least one individual with an
ASD diagnosis between February and June of 2010 via a web based survey.
POAC-NoVA, ASNV and OAR are encouraged to share this report with local, state and national
agencies and legislatures so that each individual with an ASD has the opportunity to benefit from,
participate in and contribute to society to his or her fullest potential and achieve a high quality of
life. In particular, results from this needs assessment should be shared with William A. Hazel, Jr.,
MD, Secretary of Health and Human Resources, Commonwealth of Virginia to be considered with
the Virginia Department of Behavioral Health and Developmental Services report titled,
Establishing a Detailed Action Plan for Serving Individuals with Autism Spectrum Disorders. This
report of an action plan was released November 30, 2010. The results and recommendations of the
current needs assessment are remarkably consistent with the goals set forth by DBHDS in the
action plan. The needs assessment results provide an organized summary of how the needs of the
people in Northern Virginia can be considered with the goals of the action plan as decisions for
services and funding are being made.
Definition of Autism Spectrum Disorders
Autism Spectrum Disorders, or ASDs, are a group of developmental brain based disorders that
currently include Autistic Disorder, Asperger’s Disorder, and the more general Pervasive
Developmental Disorder Not Otherwise Specified (APA, 2000). These neuro-developmental
conditions seem to have a genetic basis or vulnerability that is hypothesized to be expressed in the
presence of certain environmental factors, but the specific etiology and exact mechanisms of action
are not known (Inglese & Elder, 2009; Johnson, Myers, & Council on Children with Disabilities,
2007). The current Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text
Revisions (DSM-IV-TR; American Psychiatric Association, 2000) includes these conditions as
individual diagnostic subtypes of pervasive developmental disorders. The DSM-V currently under
development, is likely to eliminate the specific diagnoses in favor of an Autistic Disorder diagnosis
(299.00) that more accurately reflects current knowledge that these disorders seem to represent a
single syndrome defined by a common set of behaviors that exist on a continuum of severity (APA,
2010).
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Autism spectrum disorders share core deficits in social interaction and communication areas of
development and functioning and the presence of repetitive or stereotyped behaviors or restricted
range of interests that form the basis for diagnosis. In order to meet criteria for the diagnosis in the
proposed DSM-V, an individual must show clinically significant, persistent deficits in social
communication and interactions, restricted or fixated behavior, interests, and activities and the
symptoms must be present in early childhood, but may not become fully evident until social
demands exceed limited capacities and supports (APA, 2010). Representing Autistic Disorder as a
single diagnostic entity is more consistent with current knowledge that while there is generally
good reliability and specificity in diagnosing an autism spectrum disorder versus another disorder
or no disorder, differentiating among the different possible autism spectrum disorders has been
difficult and less reliable.
Epidemiology
The current prevalence rate of ASDs is estimated as high as 1 in 110 children according to the
Centers for Disease Control and Prevention (CDC) website (CDC, 2010). A large, multistate study
conducted by the Autism and Developmental Disabilities Monitoring Network of the CDC in 2006
found that 1 in every 150 eight-year-old children living in the United States has an autism spectrum
disorder (CDC, 2010) The prevalence rate for ASDs is 1 out of every 154 school children between
the ages of 6 and 22 years in Virginia according to statistics of the Office of Special Education
Programs (OSEP; 2010).
METHODOLOGICAL OVERVIEW OF THE SURVEY
Development of Survey Questions
The questions included in this survey were based upon the questions contained in similar needs
assessments, such as the needs assessment created by the Alabama Autism Collaborative Group
(2008), as well as a review of the research, information available on the websites for the National
Institutes of Health and the Centers for Disease Control and Prevention, and feedback from
members of the Board of Parents of Autistic Children (POAC) Northern Virginia. An effort was made
to balance out making the survey as inclusive as possible without making it so long that it was a
burden to respondents. Questions were designed to be clear and concise so that all respondents
would interpret them the same way.
Several steps were taken to ensure question clarity. All items that used Likert-type scales were on a
5 point scale and keyed in the same direction (1 = worst, 5 = best). When a list of item choices was
given, choices were alphabetized and when possible put into “logical” groupings. Because it would
be impossible to provide options that covered every event experienced by the participating
families, an “other” option was included for many questions and a large free response area was
provided at the end of the survey and participants were invited to share any and all additional
information.
8
In addition to maximizing clarity, steps were taken to reduce the potential statistical confound of
“stacked data”. Stacked data occurs when multiple participants from the same group (such as a
family) respond about the same key variables and thus create duplicate data. Responses were
limited to one survey per household, and to ensure this, last names and zip codes were required in
the survey (but not included with other data). The entire research protocol, including the survey
questions, was reviewed and approved by George Mason University’s Human Subjects Review
Board (HSRB) to ensure that the survey met all necessary ethical and legal guidelines and
considered any possible risk to participants.
Technical Description
The survey was administered using Limesurvey, an online survey response tool. This software
offers many advantages over traditional paper and pencil survey response techniques and other
online data collection programs. Limesurvey allowed the survey to be presented in an efficient
matter, for example, participants were only presented with questions that pertained to their prior
responses. That is, someone who indicated he/she had two children was asked questions about
both children, while someone who had only one child was asked about that one child. The survey
format also gave participants the option to skip questions that were not relevant and to save
responses and complete the survey at a later date. Finally, Limesurvey allowed the collection of
completely anonymous data using industry standard security (SSL, or Secure Socket Layering).
Before beginning the survey, participants gave electronic informed consent that was approved by
the George Mason University Human Subjects Review Board (HSRB). All responses were optional
and respondents were able to quit the survey at any point. Individuals in the autism community in
Northern Virginia were directed to the survey from the webs sites of sponsoring organizations
(POAC-NV, ASNV, and OAR).
Method of Data Analysis
Given the nature of survey data, descriptive statistics were the most appropriate analytic approach.
The wide range of experiences the families in the sample have had getting services and with
individual symptoms led to a wide range of responses to several of the questions. To that end, the
median score and ranges were given when applicable. Means were not appropriate for many of
these responses because of outliers in both directions on many questions. A median score is less
sensitive to outliers and was used as the summary statistic for the majority of responses in this
report. Many findings are reported using percentages rather than sums because not all items have a
100% response rate, thus raw numbers were less meaningful than percentages.
Characteristics of Survey Participants
The final data collection for this project represented the responses of 87 families in the Northern
Virginia area. Of these 87 surveys, 53 were completed from beginning to end, leaving 34 surveys
that were not fully completed. Respondents were able to skip questions that did not apply. Several
situations could have contributed to incomplete surveys such as a respondent not pressing the final
submit button or being interrupted and not filling out the information required to resume the
survey at a later date. Some individuals did not complete the end of the survey related to adult
needs and services, presumably because the questions did not apply.
9
All responses, including those from incomplete surveys, were counted in each possible question, as
it was assumed that any response on the survey was valid. One respondent had a zip code not in the
Northern Virginia area and was excluded prior to any data analyses. Tables of all referenced data
appear in an Appendix at the end of this report.
The total number of diagnosed individuals (DI), adults and minors, who are represented by the
survey results, is 97. The median age of diagnosed individuals in the sample is 7- years (range 2 to
32 years). Seventy-one of diagnosed individuals in the sample were male (83%) and 15 female
(17%) and one respondent did not provide gender. In the survey, 69% of diagnosed children attend
or attended public school and 11% attend or attended private school. In the sample, 21% of
individuals with an ASD diagnosis have also been diagnosed with a psychiatric condition, 24% are
on one or more psychiatric medications, and 30% have received services from a mental health
professional; 36% have been diagnosed with a medical condition and 56% have been diagnosed
with a developmental condition in addition to the diagnosis of autism. Ten percent of individuals
with an autism spectrum disorder in the sample have also been diagnosed with mental
retardation/intellectual disability. Of individuals included in the survey, 98% live at home and 2%
live in a residential placement.
Of the 87 families in the final sample, approximately 91% of the families have two or more adults in
the home; 88% were married and 6% are single adult households. In the sample, 8% of families
have divorced parents and 2% are single parent families due to death of a parent. Approximately
90% of families have one child with an ASD, 9% have two children with an ASD, and 1% of the
sample has three or more children with an ASD. In this sample, 84% of families report that the
mother is the primary caregiver, 9% list the father, and 4% list both parents. An additional 4% of
the sample identified another adult as primary
Table 1: Demographics of Diagnosed
caretaker.
Individuals (DI) in Final Sample
Approximately 65% of the parents in the sample have a
Total Numbers
97 Diagnosed Individuals
college degree or above, with approximately 29% of
Age
Median= 7
parents reporting that they have a graduate or
Range= 2-32
professional degree.
Gender
71 male
Low income families were under represented in the
15 female
survey sample, although this may be a reflection of
1 not identified
income level in the Northern Virginia area.
Schooling
68.97% attend public
Approximately 43% of the sample had an annual
school
income of over $120,000 and only 5% of the sample
had an income under $60,000. In this sample, 100% of
Table 2: Final Enrollment of Respondents
families had some form of health insurance.
in the Study
Approximately 21% of the sample identified with a
Total families
87
race or ethnicity other than Caucasian. Information
Total completed surveys
53
about medical and psychiatric conditions was also
With
1
child
with
ASD
89.66%
gathered with regard to parents of children with an
With
2
or
more
children
with
9.20%
autism spectrum disorder. In the survey sample, 24%
ASD
of parents have been diagnosed with a psychiatric
condition, with 27% of parents utilizing the services of a psychiatrist. Additionally, 44% have been
diagnosed with a medical condition, and 13% with a developmental condition such as
speech/language delay.
Tables 1 and 2 give more detailed demographic information.
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EPIDEMIOLOGY OF AUTISM SPECTRUM DISORDERS
Prevalence of ASDs Nationally and Locally
ASDs have become increasingly prevalent in the United States. The average prevalence of ASDs
defined according to DSM-IV-TR criteria for Autistic Disorder, Asperger’s Disorder or Pervasive
Developmental Disorder, Not Otherwise Specified for children aged 8 years was determined to be 9
cases per 1000 children according to the Autism and Developmental Disabilities Monitoring
(ADDM) Network (CDC, 2009) of the Centers for Disease Control and Prevention (CDC). More
conservative estimates report the current rate at just under 5 cases per 1000. The graph labeled
“Prevalence of ASDs in school children” shows the prevalence (number of cases at one time) from
the Individuals with Disabilities Education Act (IDEA; OSEP, 2010) data, a highly accurate report of
cases of Autism from school districts across the county.
Virginia has the 16th highest rate of Autism nationwide, where 1 out of 154 school-aged children
(6-22 years) are diagnosed with the disorder at any point in time. In the 2008-2009 school year,
8,792 cases of autism were identified in the Virginia public school system or 1 out of every 127
children eight years old (Office of Special Education Programs, 2010).
Cases per 1000 children
Figure 1: Prevalence of ASDs in school children (Age 3-17) 2004 to 2009
Over the past 10 years, the prevalence rate of
Autism has increased nearly 17% per year on
average nationwide. Several possible
explanations have been offered for this
increased prevalence, including diagnostic
substitution. Once IDEA allowed services for
children with an ASD, some children who had
been given other special education eligibility
under Developmental Delay, Emotional
Disorder, or Mental Retardation were recoded
under Autism with an immediate increase in
documented prevalence. New children entering
the special education system who met criteria
were given the coding of Autism at the outset. However, diagnostic substitution does not seem able
to account for all of the increase in prevalence (Shattuck, 2006), not does improved identification.
Autism Spectrum Disorders are more common in boys than girls, with a ratio slightly higher than
4:1 typically being cited (Fombonne, 2003). In this survey, 83% of the sample of affected children
was male, consistent with general gender ratios.
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SURVEY RESULTS
Early Identification
American Academy of Pediatrics: Identification, Referral and Management
Early diagnosis, early and intensive intervention, and an adequate system of supports are known to
reduce symptoms and markedly improve a child’s ability to learn new skills and function well in
their environment (Inglese, 2009). The American Academy of Pediatrics (2008) has pulled together
information and resources for Clinicians called Autism-Caring for Children with Autism Spectrum
Disorders: A Toolkit for Clinicians to assist the primary practitioner in particular with the
identification of children who may have developmental delays including Autism Spectrum
Disorders. Information about referral to other professionals and the ongoing management of
children with ASDs is also included.
Age of Diagnosis
Early detection has been highlighted as a key factor that allows earlier intervention at critical
developmental periods leading to better outcomes (Inglese, 2009; Johnson, Myers & the Council on
Children with Disabilities, 2007). The Diagnostic and Statistical Manual (DSM-IV; APA, 2000)
requires that the hallmark symptoms of ASD are manifest before age three years. Most parents
report that they noticed something was “wrong” with their child between 15 and 18 months of age
(Johnson, Myers, & the Council on Children with Disabilities, 2007). The American Academy of
Pediatrics (AAP) recommends developmental screenings of all children at the 9, 18, 24, and 30
month visits to the pediatrician, with the 18 and 24 month visits being particularly important
autism screening visits. Primary Care Physicians (PCP) are also advised by the AAP to become
comfortable with at least one standardized ASD screening instrument for each early age group and
to use that instrument consistently to gain familiarity
”Parents of children with autism are left to fend for
with it (Johnson, Myers, & the Council on Children with
themselves in most circumstances. Services are
Disabilities, 2007).
In this Northern Virginia sample of individuals:




expensive. Insurance doesn't cover it. Doctors
don't know what to do with our children. We need
to seek out and pay for every service for our child
starting from the day of diagnosis. The state of
care for children with autism is dismal, and it is
shameful that our country doesn’t do more to help
this growing population.”
Parents reported that they first became
concerned that their child might have an ASD at
an average child age of 16 months. This is
consistent with the AAP emphasis on the
importance of specific autism screenings at ages
15 and 18 months.
It took an average of 21 months between initial concern and first diagnosis of an ASD.
On average, parents saw three different health care providers before a diagnosis was made.
The average age of first diagnosis in the sample was 37 months.
Although the average time lapse from first concern to diagnosis was over a year in this sample, the
average time from diagnosis to the start of early intervention services, such as Applied Behavior
Analysis or Speech and Language Therapy, was just under two months. This suggests that the most
critical disconnect between initial concern and the child receiving services is not in the lag between
diagnosis and services, but between initial symptom concern and first diagnosis. Interventions or
services did not begin until after a diagnosis was made.
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Primary Care Physician Awareness and Training
The AAP notes that given the current prevalence rate of ASDs, pediatricians are highly likely to have
children, adolescents and young adults with ASDs in their caseload (Johnson, Myers, & the Council
on Children with Disabilities, 2007).The AAP has released two comprehensive clinical reports
entitled Identification and Evaluation of Children with Autism Spectrum Disorders and
Management of Children with Autism Spectrum Disorders (Johnson, Myers, & the Council on
Children with Disabilities, 2007; Myers, Johnson, & the Council on Children with Disabilities, 2007)
and a toolkit entitled, “Autism: Caring for Children With Autism Spectrum Disorders: A Resource
Toolkit for Clinicians.” The reports and the toolkit provide guidance on identification of ASDs, steps
to follow in the event that a child presents as clearly affected or even at risk, how to make referrals
for early intervention services, clinician fact sheets, and handouts for parents.
Primary Care Physicians (PCPs) are encouraged to take
Table 3: Ratings of Primary Care Physicians in
action and not to “wait and see” if a child has a positive
Three Key Areas
screening if the parents express concerns or if the child
Mean
Median
demonstrates two or more risk factors (Johnson,
Work with ASDs
2.79
3
Myers, & the Council on Children with Disabilities,
Recognize ASDs
2.80
3
2007). Risk factors include a sibling with an ASD or a
Informed about ASDs
3.04
3
concern about the child’s development expressed by a
Note: Ratings are on 1-5 scale, 5 = highest
parent or caregiver. The reports and toolkit contain
critical information and a helpful “algorithm” or flow chart for screening, identification and
management of autism spectrum disorders in children at various ages. Physicians are even
provided with the Clinical Procedural Terminology (CPT) code of 96110 to seek reimbursement for
ASD screening activities from insurance.
Studies report that the difficulties in early diagnosis lie in a lack of information to both parents and
health care providers, a lack of early screening tools, and an absence of widespread screening for
ASDs (Crais et al., 2006; Inglese, 2009). Survey participants were asked to respond to three
questions regarding their perception of how well informed and trained their child’s PCP was in
recognizing the child’s ASD, how well trained in
“Overall I would just like to say that
working with the family and child, and how well
raising a son with ASD is incredibly
informed about their child’s service needs.
difficult and I hope the results of this
Participants responded on a Likert scale from 1 to 5
survey demonstrate the need to provide
with 1 being not well trained or informed and 5
more support and make services more
being well trained or informed. In this survey,
easily available to families and children
parents rated their child’s primary care physician
with ASD. Thank you.”
overall as in the middle in each of the three areas as
shown by the median score of 3 for all three areas
and mean scores ranging from 2.79 to 3.04.
Given how much information is available to physicians and the helpfulness of resources made
available by the American Academy of Pediatrics, parent responses suggest that either PCPs are not
availing themselves of available information and training, are struggling to integrate the
information and training into their practices with confidence, are not good at communicating their
knowledge and information to parents, or are not good at or able to manage services based on their
knowledge and information.
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Interventions and Services Across the Lifespan
It is widely recognized that children with an ASD need intensive early intervention and there is a
need for ongoing interventions and supports across the lifespan. Depending upon overall level of
functioning and comorbid disorders, breadth and intensity of services and supports will vary for
individuals. However, it is highly likely that even as adults, individuals identified as having an
autism spectrum disorder will continue to experience difficulties and continue to need assistance
with higher education, independent living, employment, and socialization (Myers, Johnson, & the
Council on Children with Disabilities, 2007).
Early Intervention Services
“Early Intervention” is a term given to a wide variety of services that are federally mandated by
section C of the Individuals with Disabilities Act (IDEA). Early intervention can be initiated privately
y by parents with an individual care provider, such as a speech-language pathologist or upon the
recommendation of a primary care physician. In Virginia public early intervention services are
available through the Infant and Toddler Connection of Virginia and are available to children from
birth to age two years regardless of ability to pay. Concerned parents can enter the public system
by identifying the contact point for their geographic area and requesting a screening for eligibility
of their child for services. Children are then screened for eligibility. If children are determined
eligible, an Individual Family Service Plan (IFSP) is formed with the participation of the family and
child development professionals. The IFSP creates individual goals for the child to help that child
attain a level of functioning that is within normal limits for age. Early Intervention (EI) services are
typically carried out with one main service provider that comes into the home and assists the family
on a regular basis. Other professionals are used to assist as needed.
If children still need services after age two years, which children with ASDs generally do, they are
eligible to receive services in areas such as speech, language, fine and/or gross motor,
social/emotional, vision and hearing through Early Childhood Special Education Programs or Child
Find. These programs are available to provide services to children ages 2-5 years. Early
intervention services generally include birth to age 5 when the child enters the public school
system in kindergarten. When children formally enter the
“Early intervention services were
public school system, usually at age 5 years, they are then
provided by Infant and Toddler
eligible to receive special education services in the form
Connection of Virginia prior to his ASD
of an Individualized Education Plan or 504 plan. The
diagnosis and were only for speech. We
three programs, Infant and Toddler, Child Find and
were unimpressed with the services and
Special Education can theoretically provide services for
saw no improvement in my son’s speech
children from birth through age 22 years. At that point,
until we began taking him to a private
they “age out” of the public school system and for many
speech clinician at age 3.”
parents the struggle to find and pay for services
intensifies again.
14
Early intervention services were defined by this survey as being services received before the child
entered kindergarten. Within the sample,
 Surprisingly only 63% of the sample indicated that their child received some form of early
intervention service. Because early intervention is critical for children with autism spectrum
disorders, this percentage is quite low.
 The average time between initial diagnosis and the start of early intervention services was
slightly less than two months.
 Parents indicated that their child received an average of 39.9 hours per month of EI services.
 49% of parents indicated that they wanted more early intervention services for the child.
 The average maximum amount of time per month was 39.9 hours; however, some parents
indicated their child regularly received as many as 160 hours per month of EI services.
 Of the early intervention services that were received, the most utilized service was
speech/language therapy (S/L), with 82% receiving this service; followed by occupational
therapy (OT), with 78% receiving OT; with 47% of those indicating that they received
PAC/ABA (preschool autism classes); and 35% receiving social skills training. Please see the
Appendix for complete information on early intervention services.
The early intervention services being received are consistent with the core symptoms of autism
spectrum disorders and with recommendations by the American Academy of Pediatrics. However,
the quality of services is not consistent. Parents in the survey were also asked to evaluate their
overall satisfaction with early intervention services.
On a subjective rating scale of overall satisfaction with early intervention services with 1 indicating
that services were “poor” and 5 indicating that they were “excellent”, parents rated early
intervention services overall as a 3.4 out of 5. Forty-nine percent of parents reported they would
like to receive or would have liked to receive more early intervention services for their child.
Services Through the Public School System (Special Education)
Services through the public school system were assessed beginning with kindergarten, even though
early intervention services through Child Find are also technically offered as special education
services before kindergarten. While school systems will often provide some services in the areas of
speech/language or occupational therapy/physical therapy, special education support services and
social skills, the responsibility of the school system ends with providing services where there is an
academic impact.





15
Approximately 69% of the sample indicated that their child received some form of services
through the public school system.
Of those who received services, 23% said that the public school services met the child’s
needs.
Of the services received, the most frequently received service was speech and language
therapy (S/LT), with 88% of the sample indicating their child received S/LT; next was
occupational therapy (72% of sample received services), followed by ABA (47% received
services); and Social Skills Training (35% of children) through the public schools. Appendix
A has more detailed information on utilization of all services.
Only 42 % of children in the sample had or did have an IEP or 504 plan in the public school.
Parents indicated their child received an average of 1.5 (range 0.0-12.5) hours per week of
one-on-one speech and language therapy and 1.5 (range 0.0-10) hours per week of group
speech/language therapy.

Across all age groups (0-22 years) and services, children received an average of 36 hours of
services per month from the public school system. Below is a specific breakdown of mean or
average number of hours per month of service by age grouping:
Age 0-5 years average 36 hours per month
Age 6-12 years average 31 hours per month
Age 13-18 years average 25 hours per month
Age 19 years and up average 29 hours per month


They also indicated that their child received an average of 0.75 hours per week of
one-on-one occupational therapy, and 0.7 hours per week on average of group occupational
therapy.
Minimal physical therapy intervention was received from the public school system at 0.15
hours per week average (range 0-2 hours).
The percentage of children with an IEP or 504 plan is surprisingly low given that the IEP or 504
plan is designed to serve as the documentation of a child’s individual strengths and weaknesses and
the academic impact of the weaknesses for that child. This document is reviewed and updated
annually so that each child receives current necessary intervention services, supports and
accommodations. It may be that this low percentage reflects the fact that having a diagnosis of an
autism spectrum disorder does not necessarily mean that a child will be found eligible for services
through the public school system. Rather, eligibility is determined by academic impact.
A child with an autism spectrum disorder, usually with more mild impairments and average or
above intellectual functioning, may be performing generally on grade level and may not be
demonstrating any disruptive behaviors in the classroom. Even though the child may have social
communication deficits, poor peer relationships, repetitive or restricted behaviors, or have poor
fine or gross motor coordination, the absence of a significant academic impact will mean that the
child is generally not found eligible for services. This leads to the next finding in the survey.
Although 69% of the sample received services through the public school system, only 23% of those
receiving services reported that these services met their child’s need. This may relate to child needs
that do not have a direct significant academic impact or that services are not comprehensive or
intensive enough to meet the child’s needs. Table 4 below details the number of hours per week
received at school for services in speech/language, occupational therapy, and physical therapy.
Note that on average, a child received 1.5 hours of individual speech and language therapy and/or
2.23 hours of group speech/language therapy. Because children and adults with ASDs have deficits
in social communication (required as part of the diagnosis) evaluation and treatment by a
speech/language pathologist is generally appropriate. However, traditional low frequency and/or
low intensity pull out services are often not effective (Myers et al., 2007).
Table 4: School Based Services
Hours per week of
Speech, OT, and
Physical Therapy in
One-on-one or
group settings
16
Hours per week
Speech Therapy
Occupational
Therapy
Physical Therapy
One-on-One
Mean
Range
1.48
0 – 12.5
Group
Mean
Range
1.46
0 – 10.0
0.76
0.15
0.71
-
0–
0–
4.0
2.0
0 – 5.0
-
Parents were asked to rate the perceived effectiveness of 10 different services offered through the
school system. Table 5 below displays each of the services and the
Table 5: Efficacy of
median score on a 1-5 Likert scale. For this questions a score of 1
School-Age Services
indicates “not effective” and a score of 5 indicates “very effective”
in meeting the child’s needs. Speech/language therapy was rated
Speech Therapy
4
overall as quite effective and rated more highly than any other
Occupational Therapy
3
service. All other services were rated a 3.
Academic Services
3
The Northern Virginia Area Autism Needs Assessment also asked
Physical Services
3
about how well informed and well trained key professionals in
Behavioral Services
3
the schools (teachers, administration, therapists, and support
Social Skills
3
staff) appeared to be about autism spectrum disorders and the
Communication
3
needs of children with autism spectrum disorders. Overall,
Before/after care
3
administrators and support staff were rated as appearing to be
Physical Therapy
3
the most well informed about autism spectrum disorders (4 on a
Summer programs
3
scale of 1-5), but not well trained to meet the needs of children
with ASD. These individuals generally do not provide direct service, but administrators in
particular may participate in meetings where eligibility for services is determined or meetings
where IEPs or 504 plans are developed.
Teachers and therapists were rated as appearing to be the most well trained to provide services
(4/5). However, those actually providing special services to children with ASDs such as
speech/language therapists and occupational therapists were rated as poorly informed about
autism spectrum disorders, rated a 2.5 out of 5 on the Likert scale. This discrepancy suggests that
while school therapists may be well trained in their interventions, they are perceived to be less
informed about autism spectrum disorders and characteristics of children with autism spectrum
disorders. Lack of specific information about this target population may increase frustration in both
service provider and child and may reduce the effectiveness of the intervention.
Parents were also asked to rate each of several areas of school service in terms of needed
improvement. These areas included information about treatment alternatives; administrators and
teachers, therapists and support staff being better informed and better trained. Parents rated all
areas as needing much improvement. (4/5 or 5/5 for
Table 6: Ratings of School Officials
improvement needed).
Informed
Trained
Administration
Teachers
Support Staff
Therapists
17
4
3.5
4
2.5
2.5
4
3
4
Services Through the Community
Approximately 45% of the sample indicated that their family
received some form of autism related services through the
community. Of the services received, the most utilized services
were Applied Behavior Analysis (ABA), with 20% of the sample
indicating their child received ABA, 18% of sample received
social activities/opportunities, and 13% Speech and Language
services. Across all age groups and services, children and
families received an average of 25.4 hours of services per
month from the community.
Table 7: Percentage of Individuals
Receiving Specific Services from the
Community
ABA
19.61%
Social/Activity Opportunities
17.65%
Speech/Language Therapy
13.73%
Family respite
11.76%
Recreation/exercise therapy
7.84%
Social Skills Training
7.84%
Behavioral Management
5.88%
Approximately 95% of those receiving services from the
Occupational Therapy
5.88%
community said the services were the necessary services,
Financial Assistance
3.92%
which speaks to the community services being well targeted
Medication Management
3.92%
for this population. However, fewer families received services
Self-help care
3.92%
from the community compared to services received through
Incidental Teaching
1.96%
the public school system and there were some services that
Life Skills
1.96%
were available through the school system that were not
Nutritional Counseling
1.96%
available in the community.
Physical Health Care
1.96%
In terms of participant ratings of specific areas of services, the community services were rated
lowest (3 out of 5) in meeting behavioral and physical needs of the child and were rated highest in
meeting the child’s social needs (4 out of 5). Community services were rated 3.5 out of 5 for
meeting academic and communication needs of the child.
Young Adult and Adult Services
Autism Spectrum Disorders are lifelong conditions. Intensive early intervention services are critical
to a more positive life outcome. However, many individuals with an ASD diagnosis and many
parents of children with an ASD diagnosis look to future needs. Once a child has aged out of the
school system, then what? This survey was still in progress when requests were received to provide
a similar survey to ascertain the needs of adults with an ASD diagnosis in Northern Virginia. Some
data with regard to adult services was included in the current survey.
In this sample:



18
17% of respondents reported that their child’s life plan after high school graduation was
discussed as part of the IEP process in high school.
Only 12% of respondents reported feeling prepared for what will happen after their child
graduates from high school.
8% of respondents reported that they had a long term care plan for their child.
Parents were asked to indicate which services their young adult children currently need or are
likely to need after high school. This includes young adult children who are in a post-secondary
educational environment or plan to attend a post-secondary education environment. The data are
presented below. Please notice the emphasis on the ongoing need for social skills and life skills.
Young adults with ASDs continue to need support in being with people in a comfortable way and
assistance transferring learned skills to adult environments. Conversation skills, job interviewing
skills, working cooperatively in groups or teams, making new friends, emotion regulation and
developing intimate relationships are transition life skills that many young adults struggle with and
they are particular challenges for individuals with ASDs (Baker, 2005). Parents in this survey
expressed that many older children struggled to function independently and at an age appropriate
level in areas of cooking, managing money, and transportation (rated a “1” on a scale of “1-5”
meaning poor functioning) and in the area of responsibility for doing chores ( 2 out of 5). Bathing
was something of a concern (score of 3) with feeding, dressing and toileting rated the highest for
independent skills (4 out of 5).
Table 8: Services Parents Believe Children Will Need in Future (After Graduation from High
School)
Social Skills Training
42.53% Behavioral Management
21.84%
Job Coaching
36.78%
Occupational Therapy
20.69%
Table
8.
Job training
35.63%
Family Respite
18.39%
Social/Activity Opportunities
35.63%
Nutritional Counseling
17.24%
Life Skills
34.48%
Residential Placement
16.09%
Academic Support
31.03%
Medication
12.64%
Recreational Therapy
25.29%
Mental Health
Services
10.34%
Management
Self-Care Help
24.14%
Physical Health Care
3.45%
Speech/Language Therapy
24.14%
Physical Therapy
3.45%
Financial Assistance
22.99%
More Information on Specific Treatments
The National Standards Project and Report
The treatments included in this survey were selected from the National Standards Project and
Report (National Autism Center, 2009). This multi-year project was sponsored by the National
Autism Center to provide a comprehensive analysis of current treatments for ASDs to determine
which treatments were supported by scientific evidence. Seven hundred and seventy-five research
studies on treatments for the core symptoms of autism in individuals under 22 years of age were
selected on the basis of several criteria and used to generate the Strength of Evidence Classification
System.
19
The National Standards Project used a Strength of Evidence Classification System to serve as a
guideline for making decisions about the strength of evidence of treatment effectiveness for
different interventions being offered to address core symptoms in autism spectrum disorders. They
established four different categories of research evidence for treatments that are 1) established
treatments (sufficient research support for efficacy); 2) emerging treatments (some research
support for efficacy but more research needed); unestablished treatments (little or no research
confirmation on efficacy or potential for harm; and 4) ineffective/harmful treatments. The
Standards report was careful to clarify that while some treatments have “compelling scientific
evidence” to support their effectiveness, no one treatment is likely to be helpful to every individual
and individuals may receive greater or lesser benefit from any treatment (National Autism Center,
2009). The reader is referred to the National Standards Project Report for a full description of the
project and lists and definitions of individual treatments and treatment packages
(www.nationalautismcenter.org). Multiple factors need to be considered in selecting a treatment or
treatment package for a specific individual although a good starting point is an established,
evidenced based treatment when one is available.
The Northern Virginia Area Autism Needs Assessment asked families about services their children
received across the lifespan, from early intervention to post high school. Across all age groups and
locations of service, speech and language therapy, occupational therapy, and Applied Behavior
Analysis (ABA) are the most widely used services across all age groups. Additional information
regarding these three types of intervention services is provided as well as medication
interventions.
Speech and Language Therapy
Speech and language therapy includes a variety of interventions with the overall goal of improving
all aspects of communication. Core deficits that define the spectrum disorders include the critical
areas of communication and socialization. By definition, evaluation and treatment by a
speech-language pathologist seems appropriate, although language therapy is considered an
“emerging treatment” in the National Standards Report. This includes development of useful
speech, but also social communication skills, non-verbal communication and language skills for
academic and employment settings. Social skills interventions are often included under the
speech-language umbrella given the integral relationship between communication and
socialization. In this sample, 43% of respondents report that their child has also been given a
diagnosis of speech/language delay.
The National Research Council1 describes four components of effective speech and language
therapy (SLT) for Autism Spectrum Disorders: 1. SLT should begin early in life and be frequent. 2.
SLT should be rooted in practical experiences in the child’s life. 3. SLT should encourage
spontaneous communication. 4. Anything learned should be generalizable to multiple situations.
Approximately 90% of the families in the sample report that their children have received speech
and language therapy from sources that include early intervention (82% of DIs) or public school
programs (88% of DIs), and home training (48% of DIs). This indicated that most people received
speech services from multiple sources.
20
Occupational Therapy
Occupational therapy services as a broad treatment class do not appear to have been included in
the National Standards Report. Sensory Integration Therapy, a subclass of occupational therapy, is
rated as an “unestablished” treatment according to the National Standards Report. Keep in mind
that an unestablished treatment in the report means that there is not sufficient research with the
population of individuals with ASDs to provide evidence to support the efficacy of Occupational
Therapy in treating core symptoms of autism. While motor delays, both fine and gross motor, are
often found in individuals with ASDs, motor delays are currently not considered core symptoms
and are not part of the diagnostic criteria. However, the presence of repetitive and restricted motor
behaviors or interests in ASDs is a core criteria. Until recently, little research had been done in the
area of motor functioning in individuals with an autism spectrum disorder. A recent study of
pre-school children with ASD looking at aspects of sensory and motor functioning found that
avoiding sensory stimulation, an excessive reaction to sensory stimuli, and fine motor skills were
highly correlated with ability to perform daily living skills, even when cognitive level was taken into
account (Jasmine et al., 2009). The authors recommend that interventions aimed at improving
sensori-motor skills should therefore be a target of intervention.
According to the American Occupational Therapy Association2, occupational therapy has expanded
considerably from its traditional role to be a highly effective intervention for children and adults
with Autism. Occupational therapy can reportedly help people with Autism develop and improve
social, learning, play, and vocational skills. Services include evaluation, treatment and
consultation to improve individual capabilities as well as modifications to the environment to
improve functioning and decrease distress. Occupational therapy services can focus on improving
the ability to independently carry out daily living skills such as using utensils, getting dressed, tying
laces, and more advanced skills such as meal preparation as well as academic skills such as writing
and using scissors (AOTA, 2005; Myers, Johnson and the Council on Children with Disabilities,
2007).
Sensory integration therapy specifically focuses on helping individuals regulate their responses to
incoming sensory information since individuals with ASDs often seem to be overly sensitive and
responsive to sensory information or under-sensitive and under responsive to sensory information.
The goal of sensory integration therapy is to help the child respond to the environment in a more
adaptive way versus teaching specific skills or behaviors.
In this sample, 78% of children received occupational therapy services as part of early intervention
and 72% of children receive or received occupational therapy through the public school system.
Additionally, 6% of children receive or received occupational therapy through the community and
39% of families received training to provide some occupational therapy services to children at
home.
Among respondents, 28% of children have received a diagnosis of Sensory Integration disorder or
dysfunction, 18% have received a diagnosis of a Sensory Processing Disorder (currently under
consideration for inclusion in the DSM-V) and 20% have been diagnosed with dyspraxia or
Developmental Coordination Disorder, conditions where occupational therapy is considered an
integral part of treatment.
21
Applied Behavior Analysis (ABA)
Applied Behavior Analysis (ABA) is the application of principles of learning and motivation toward
the goal of behavioral change, and demonstrating that the changes in the target behaviors are the
result of the interventions (Myers, Johnson and the Council on Children with Disabilities, 2007).
It includes functional assessment as well as a variety of highly structured intervention methods.
Behavior change can include increasing the frequency, intensity or range of appropriate and
prosocial behaviors, decreasing the frequency, intensity and range of inappropriate or self-injurious
behaviors, teaching new skills, and generalizing skills across situations. It is the most widely
supported and scientifically validated treatment for core symptoms of Autism Spectrum Disorders.
The National Standards Report rated ABA as one of only eleven evidence based treatments to have
beneficial effects and ABA is the only treatment shown to be effective across the lifespan. While
ABA is an evidence based treatment, services provided by Board Certified Applied Behavior
Analysts, the highest credential in the field, are often not covered by health insurance unless the
provider also happens to be licensed in a related field such as speech and language or psychology.
The frequency and intensity of ABA services, up to 40 hours per week, puts this intervention
outside the financial reach of many families. Services provided by the public school system or the
community are generally not sufficient, necessitating that parents learn to be their child’s therapist.
Approximately 47% of the families in the sample report that their children have received ABA
services as part of an early intervention program and 47% of respondents reported that their child
received ABA services through the public school system. Only 20% of individuals received ABA
services through the community. In contrast, 70% of families received training on how to provide
ABA services at home.
Psychotropic Medication
Medication or pharmacological interventions are sometimes considered for treatment of problem
behaviors in individuals with ASDs or for sleep disturbance, irritability, hyperactivity, mood lability
or self-injurious behaviors despite the fact that there is little research consensus on which
medications may be efficacious in treating specific symptoms or behaviors (Myers, Johnson and the
Council on Children with Disabilities, 2007). A recent study found that children with autism
spectrum disorders were almost nine times more likely to be taking a psychotropic medication than
peers without an ASD and total mean annual cost for children diagnosed with a psychiatric
condition was 45% higher compared to children without an ASD due primarily to cost of
psychotherapeutic medications (Croen, Najjar, Ray, Lotspeich, & Beranl, 2006). There is some
support for the effectiveness of Risperidone for short term treatment of irritability in children and
adolescents with ASD. There is some evidence to support the efficacy of selective
serotonin-reuptake inhibitors (SSRIs) in the treatment of repetitive and maladaptive behaviors and
methylphenidate in the treatment of hyperactivity, impulsivity, and inattention in children with
ASDs (Myers, Johnson and the Council on Children with Disabilities, 2007).
In this survey, 24% of children with ASDs were on some type of prescription psychotropic
medication with 17% receiving the services of a psychiatrist. The most widely prescribed
medication in this sample was Risperidone (13% of sample). Approximately 16% of the sample was
on some type of an SSRI, and approximately 25% of the sample was on a medication for symptoms
of ADHD.
22
Barriers to Professional Help Seeking
Help Seeking Behaviors in Crisis Situations
This needs assessment also sought to better understand the help seeking process of parents of
children with autism spectrum disorders, using a model of the “help seeking pathway” that was
constructed by Pavuluri and colleagues (1996) who investigated the help seeking process in
families whose young children had behavior problems. This model was also used by Douma and
colleagues to investigate help seeking in parents of children with intellectual disabilities (Douma et
al., 2006). The help seeking pathway is hypothesized to follow three consecutive steps each of
which must happen in order for parents to seek some sort of professional intervention for their
child. The first step is to recognize or identify a problem. Second the parent must consider getting
help or assistance for the problem and third, parents have to overcome the perceived barriers or
obstacles to receiving help (Douma et al, 2006).
In this survey, parents were asked to respond to questions about the professional help seeking
process with regard to six different areas of child functioning: social functioning, emotional
functioning, behavioral functioning, communication functioning, adaptive (self-care) functioning,
and academic functioning. Parents were asked to assess the target individual’s functioning within
the past year in all six areas on a scale of 1 to 5, with 1 indicating a very poor level of functioning
and 5 indicating a very good level of functioning. Table 9 shows the results of reported overall
median level of functioning for each affected family member in the past year. The median level of
functioning in five of the six areas was a 3, which indicates functioning that was described as
“neither good nor bad.” The median score for academic functioning was a 4, indicating “good”
functioning.
Participants were then asked to focus specifically on areas of functioning where they indicated that
the family member with ASD was functioning very poorly or poorly. For each are of functioning
where a child was rated as very poor or poor
Table 9: Parents’ Ratings of Their Child’s Need in
functioning indicated by a score of 1 or 2,
These Specific Areas of Functioning
parents were then asked to rate the extent to
Crisis Need
Great Need
which the parents or other family members
Social
3.45%
4.60%
perceived a need for professional help.
Emotional
0.00%
9.20%
Responses on a 1-5 scale ranged from “no need”
Behavioral
1.15%
6.90%
to “crisis”. The percentage of respondents who
Communication
2.30%
6.90%
perceived a “great need” for professional help or
Self Care
2.30%
18.39%
a “crisis” situation and need for professional help
Academic
3.45%
9.20%
is below (need was rated a 4 or a 5).
Respondents were then asked to consider if the child or individual with ASD seemed to have a
functional need (step one), and it was perceived to be a great need or crisis (step two), did the
family seek professional help and to what extent did the obtained professional help meet the
perceived need. As indicated in Table 10 below, individuals identified as having a “great need” or to
be in “crisis” in the communication domain were the ones most likely to get professional help;
about 77% of these individuals received professional help. However, on a scale of 1 to 5 with 5
indicating that the help “fully met” the need, the mean/median rating was a 1, which indicates that
the need was not met at all by the professional intervention.
In this sample, 57% of individuals who identified a great need or crisis in the behavioral realm
sought professional help and that help was generally rated as only meeting the need a “little bit.”
23
Fewer than 50% of families who identified a great need or crisis situation in the areas of
social functioning, emotional functioning, self-care functioning or academic functioning of a
child sought professional help. Of those who sought and received help, most families reported
that the professional help only met the need “a little bit.” Self Care intervention fared the best, with
a median score of 3 indicating that the obtained professional help “somewhat met” the individual’s
need.
Why did the other 50% of families who identified a great
need or crisis situation and considered getting professional
help not get professional help? What are the barriers to
professional help seeking among families with a child or
family member with an autism spectrum disorder?
Table 10: Professional Help Seeking in Areas
of Perceived Functional Need
Got Professional Help Met
Help
Needs1
Social
34.78%
2
Emotional
36.36%
2
Behavioral
57.14%
2
Communication
76.92%
1
Self Care
30.00%
3
Academic
40.00%
2
The last question in this section of the survey asked
respondents to rank order the barriers to seeking
professional help when there was a great need or crisis
situation. In other words, what got in the way of seeking
1. People who indicated a great need for services and got
processional help when the problem was recognized and
professional help, ratings of the extent to which the help
the need for professional service was recognized?
met the individual’s need (median of 1-5 scale; 5 is best)
Appendix A details all of the 12 possible barriers to
professional help seeking that were listed for participants
to rank order by area of functional need. Respondents could identify different barriers to
professional help seeking for each of the six functional areas of need. Rank order was determined
by using a weighted sum of responses.
Across all areas of functional need, cost was the most significant barrier to professional help
seeking. The second most significant barrier was the long wait for services. All twelve barriers
in rank order with 1 being the most significant weighted barrier to professional help seeking
despite a great need or even crisis situation and 12 being the least are presented below.
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
Cost
Long wait for services
Lack of information about the type of help needed
Providers could not be located or identified
Time commitment of services
Previous bad experience with helping profession
Transportation problems
Help seeking steps were too complicated
Relied upon family/friends/religious group
Embarrassment/stigma
School intervention
Considered the issue temporary
The standard for quality care in treatment of children established by the American Academy of
Pediatrics is called the medical home model of care. This model lists the essential features for
providing quality care: accessibility, comprehensiveness, family centeredness, compassion,
coordination and affordability (Young, Ruble, & McGrew, 2009). The results of this survey with
regard to barriers to professional treatment indicates that at least two of these key components,
accessibility and affordability, are lacking in services in Northern Virginia.
24
The Impact of ASDs
“We are about as fortunate as possible with regards to the resources we can bring to bear on our son’s
development, yet I still worry constantly and wish that his autism would just go away like a bad dream
upon wakening. I feel like autism is like the opposite of the gift that keeps on giving--it’s the curse that
keeps on punishing. Maybe it’s just because today is Mother’s Day and I’m feeling sorry for myself. Just
now my typical kid came to ask me to play with him and my kid with autism is at adaptive gymnastics.
Maybe everything will be fine...”
Autism is a lifelong condition that by definition includes impairment in the key areas of
development and functioning that are communication, socialization, and flexibility in behavioral
responding. The total need for services and supports depends upon the severity of the symptoms
and whether or not there is a co-occurring condition or conditions such as intellectual disability, a
psychiatric disorder, or physical health complications. The complexity of autism spectrum
disorders means that to improve the likelihood of a positive outcome treatment approaches must
be multidisciplinary, intensive, and ongoing. Research has shown that children ages 2 to 18 years
with an ASD have more inpatient and outpatient medical visits including hospitalizations, require
complex treatment approaches that include care by a number of subspecialities, and have
significantly more visits to the pediatrician, psychiatrist and for medication management even
when compared to other children with special health care needs (Croen, Najjar, Ray, Lotspeich, &
Bernal, 2006).
In this sample:






21% of individuals with an ASD diagnosis have also been diagnosed with a psychiatric
condition, the most common being Attention-Deficit Hyperactivity Disorder (14%)
24% are on one or more psychiatric medications
30% have received services from a mental health professional
36% have been diagnosed with a medical condition
56% have been diagnosed with a developmental condition in addition to the diagnosis of
autism.
10% of individuals with an autism spectrum disorder in the sample have also been
diagnosed with mental retardation/intellectual disability.
The intensity and frequency of interventions and supports for good health, maintaining quality of
life, learning, employment and independent functioning can be enormous and are life-long. The
impact is not only financial, but emotional and professional. Research shows that mothers of
children with autism spectrum disorders report more parenting stress and more psychological
distress than mothers of children with developmental delays (Estes, Munson, Dawson, Koehler,
Zhou & Abbott, 2009). Child behavior problems seem to be more strongly related to parenting
stress and distress than difficulties with daily living skills. For many families, one or both parents
may have a diagnosed developmental, medical or psychiatric condition that needs to be managed in
addition to the needs of the minor or adult child.
25
In this sample of families from Northern Virginia:



24% of parents have been diagnosed with a psychiatric condition, with 27% of parents
utilizing the services of a psychiatrist.
44% of parents have a medical condition
13% of parents have been diagnosed with a developmental condition such as
speech/language delay.
Financial Impact
The current lifetime costs associated with treatment for an individual with autism is over $3 million
dollars. (Leslie & Martin, 2007) Although tremendous public and private resources are spent on
Autism services, families often experience significant financial stress in getting their child,
adolescent or adult family member needed services. Many services are not covered by medical
insurance. Caregivers lose work hours or work days or jobs and income.
Once a child “ages out” of the public school
system, obtaining resources for family members
with autism becomes an even greater challenge.
Autism is a condition that has the potential to
qualify a child or an adult for Social Security
Disability Insurance (SSDI) and/or the
Supplemental Security Income (SSI) program
which is based on need. These programs provide
cash payments and health care coverage for
children and adults who are unable to function
because of a disability. However, the application
process is quite extensive and many children and
adults do not qualify because they are not found
to be “disabled” or because they do not meet
non-medical eligibility requirements.
“On top of that [referring to a desire for social
inclusion in the classroom with typically
developing peers] there are so many other
therapies which could be useful (e.g. feeding
therapies) but my insurance provider views autism
as a learning disability, not a medical issue, so
covers NOTHING.. We try to pay for additional
classes and camps for him, and for training for
ourselves, but we just don't have the money. We
have borrowed money from family to pay for
assessments and therapies. I always feel like I am
not doing enough to help him, that I should be
doing more, I should be getting him more therapy,
or getting him to have more experiences. I feel like
our financial situation means that he will never be
able to be totally independent, he will always need
some level of care, we will never be able to afford
the therapies he needs to learn how to do what he
needs to do to function in society.”
The families in Northern Virginia that
participated in this survey are somewhat
non-representative of the United States as a
whole in that 60% of the sample had a gross
annual income of over $100,000. Also, 100% of
families in the survey had health insurance coverage. Despite being relatively “well off” families still
experience significant financial stress in meeting the needs of their child with ASD and most report
that the child’s needs are not adequately met.
26
In terms of overall availability of needed services, only
physical health care received a median rating of 5 in
terms of availability. This was the only service rated as
a 5 for most affordability as well. Ratings were on a
Likert scale from 1 to 5 with 1 being “not
available/affordable” and 5 being “very
available/affordable”. Table 11 provides a list of
services and perceived availability and affordability
according to results of this survey.
Respondents also perceive little support coming from
most areas. On a scale of 1-5 with 1 being “little
support” and 5 being “much support”, participants
reported “little” support from the workplace, rated
support from the community and religious affiliations a
2 and support from family a 3.
The results from the Northern Virginia Area Autism
Needs Assessment revealed that the costs associated
with ASDs are similar to the large cost across the
United States both in terms of actual money spent and
lost opportunities to earn money. Families in the
survey reported a median of $10,000 per year spent on
ASD services in addition to the services covered by
insurance or received through the community and
school system, with some families reporting spending
as much as $30,000 per year out of pocket. In round
numbers, families spend as much as 10% of gross
income on services for their child or children with
autism.
Table 11: Availability and Affordability of
Professional Services Parents Believe Their
Children Will Need After Graduation
Available
Academic
Support/Accommodations
Behavioral Management
Family respite
Financial Assistance
Job Coaching
Job training
Life Skills
Medication Management
Mental Health Services
Nutritional Counseling
Occupational Therapy
Physical Health Care
Physical Therapy
Recreational therapy
Residential Placement
Self-Care Help
Social Skills Training
Social/Activity
Opportunities
Speech/Language Therapy
Affordable
3
3
2
2
3
2
2
3
2
3
2
5
3
3
2
2.5
2
2
2
2
1
3
3
1.5
2.5
2
2
2
5
2
3
1
1.5
2
3
3
3
3
Table 12: Mean Percentage of Costs
Covered by Health Insurance
Medical Service Costs
57%
Behavioral Service
28%
Costs
Costs Other Services
20%
In this survey sample, families report the following:


An average of $11,282 per year, per family is spent on ASD-related services
93% percent of families had to pay for some percentage of services out of pocket even
though 100% of families had health insurance coverage
While all survey families had health insurance,
“My employment options have been severely limited b/c I
93.46% of families had to pay for services out of
was a stay at home mom for 6 years before my ex left. I
pocket because services were not covered by
now work only PT. When my child ages out of the
insurance or because insurance benefits were
school system, I may have to stop working altogether. I'm
not adequate to meet the child’s needs or
v[ery] concerned about residential and employment
because publicly funded services were not
issues in her future. We have been on ID waiver wait
adequate or available. Table 12 shows that while
list for 8 years. May never get services.”
a little more than half (57%) of medical expenses
were covered by health insurance, only 28% of
needed behavioral services were covered by insurance and only 20% of other related costs such as
speech/language and occupational therapy services were covered by insurance.
27
Behavioral intervention, in particular Applied Behavior Analysis (ABA) is the only evidence based
intervention to increase adaptive behaviors and decrease maladaptive and problem behaviors
across the lifespan. Despite all of the evidence for the effectiveness of ABA treatment, the services
provided by many Board Certified Applied Behavior Analysts (BCBA), the highest credential in the
field, are not reimbursable by insurance. This is because these individuals are not “licensed” and
non-licensed services are not covered. A percentage of some services provided by BCBAs may be
covered if the individual is also licensed in an allied health profession, such as a licensed clinical
psychologist who is also a BCBA or a licensed speech pathologist who is also a BCBA. While insurers
holding providers to a high standard of expertise and credentialing is reasonable, not recognizing
the highest level of credentialing in the field makes the most robust intervention for many
behavioral problems inaccessible to many families.
In terms of time lost in the workplace:



10% of the sample has a primary caregiver that has had to take off work at least once a
week to care for the ASD child.
26% of care providers have taken off more than one to four days per month to care for their
child
36% of primary care providers have lost or given up a job to care for their child
Lost time at work, lost employment, and lost opportunities for advancement all result in fewer
financial resources to meet the demands for intervention and associated costs.
Many parents and caregivers have trained to become therapists to their children in order to
provide the range and intensity of services needed. In home services can also help with transfer of
results of interventions to real world situations and can help provide a more natural behavior and
language learning environment. However, it is important that parents receive the appropriate
training to provide therapies to their children.
Table 13: Percent of Sample Receiving
Applied Behavior Analysis (ABA) 70.45%
Services
Home Training Services
Therapy
Speech/Language
Therapy
47.73%
In this sample, 67% of parents report having read a book
Occupational Therapy
38.64%
on how to provide services to their child at home, 51%
Parenting Skills Training
31.82%
reported that they received specific training in providing
Social
Skills
Training
29.55%
one or more services and 15% of parents said that they
Toilet
Training
Assistance
20.45%
would like to receive some or additional training in how
Mand
Training
18.18%
to provide needed services. The most common in home
1
DIR/Floortime
15.91%
training received is for ABA services, with over 70% of
Nutritional Counseling
15.91%
parents reporting that they have received training in ABA
Respite
Care
9.09%
for their child or children. Because ABA services are
Mental
Health
Counseling
6.82%
expensive and intensive, as much as 40 hours per week at
Peer
Training
6.82%
over $100.00 dollars per hour, and because there is a
Physical Therapy
6.82%
wealth of scientific evidence supporting the efficacy of
Auditory
Integration
Training
4.55%
ABA services, it makes sense that so many parents have
2
CBTYC
4.55%
been trained in ABA. Those services that parents have
Joint
Attention
Intervention
4.55%
most commonly been trained to provide at home are
Massage/Touch Therapy
4.55%
listed below. A complete list is in the Appendix.
1. DIR = Developmental Individual Difference, Relationship Based
2. CBTYC= Comprehensive Behavior Training for Young Children
28
Despite all that is known from research and clinical practice about the importance of early
identification, intensive intervention for symptoms, lifelong management of the disorder and the
need for comprehensive supports many parents and family members of individuals with ASDs in
Northern Virginia report that a diagnosis was delayed. Evidence based and necessary interventions
are not covered by medical insurance, necessary interventions are not available or affordable to the
extent needed, and adequate supports for the individuals and families are just not there. The
following recommendations are made based on the results of this needs assessment survey, a
review of current and relevant research and recommendations of the American Academy of
Pediatrics.
RECOMMENDATIONS
The results of this Needs Assessment Survey support the following goals and recommendations for
improving the system of services and supports for individuals with Autism Spectrum Disorders in
Northern Virginia.
Purpose: Earlier identification and intervention
Increase parental awareness of the early indicators of developmental delays and possible Autism
Spectrum Disorders in children.
1. Develop and conduct an ongoing educational and awareness campaign that reaches
expectant parents. Have materials available in office of OB/GYN
2. Develop and conduct an ongoing educational and awareness campaign for persons of
diverse cultures and/or with limited English proficiency.
3. Increase professional awareness of early indicators of Autism Spectrum Disorders in
primary care pediatricians and all allied health professions that have contact with
infants and young children.
a) Promote widespread use of a reliable and valid standardized screening assessment
to detect indicators of Autism Spectrum Disorders for all children at age 15-18
months.
b) Initiate a process of referral for intervention in any and all areas of delayed
development immediately even if a definitive diagnosis of an autism disorder has
not been made.
c) Consistent with recommendations by the American Academy of Pediatrics (2007),
all children should receive an initial standardized screening assessment for Autism
Spectrum Disorders at age 15 or 18 months, but no later than 18 months.
d) An “autism screening well child visit” at a specific age such as 15, 16 or 18 months
can become a standard of care that is provided to every child and covered by
insurance.
e) Pediatric nurses need to be trained to screen for ASDs in children and are an
underutilized valuable resource in identifying and caring for children with an
autism spectrum disorder (Inglese, 2009).
29
f) Interventions for “delays” in communication, socialization, or motor development
need to be initiated even in the absence of a definitive ASD diagnosis. Quote from
the National Standards Report: “The committee recommends that educational
services begin as soon as a child is suspected of having an autistic spectrum
disorder. Those services should include a minimum of 25 hours a week, 12 months a
year, in which the child is engaged in systematically planned, and developmentally
appropriate educational activity toward identified objectives.” p 31 (2009, National
Autism Center).
g) The Board of Medicine in the Commonwealth of Virginia could consider making
continuing education on the screening, diagnosis, and management of children with
autism spectrum disorders mandatory for license renewal for pediatricians and
pediatric nurses.
h) Funding for research for the identification or development of a reliable and valid
screening measure for children 15-18 months of age to be used as a part of standard
care in all primary care pediatric practices and clinics.
4. Develop and conduct an ongoing educational and awareness campaign that reaches all
allied health professionals including pediatric nurses, child psychologists, school
psychologists, behavior therapists, speech/language pathologists, occupational/
physical therapists, pediatric psychiatrists, and audiologists.
Purpose: Affordability of therapies and interventions
1. Increase awareness of health insurance companies, private and public, that Autism
Spectrum Disorders are a neuro-developmental condition and treatment of core
symptoms needs to be covered services.
2. Increase awareness of local, state and national policy makers that autism spectrum
disorders are a neuro-developmental condition and treatment of core symptoms and
supports for families are a public health crisis that require more public funding.
3. Affordability of established treatments at the very least needs to be a goal for those with
the power to authorize funding for services in Northern Virginia.
4. Provide funding for parents to be professionally trained to provide services for Applied
Behavior Analysis to their children.
5. Address the complicated process, long waiting list, and considerable frustration that
families experience in trying to obtain a Medicaid waiver for Intellectual Disability and
Developmental Disability.
6. Interventions provided by or supervised by Board Certified Behavior Analysts need to
be covered by health insurance regardless of licensure in another discipline.
7. Provide information on SSDI and SSI to families of children as part of the IEP/504
process in the public elementary and middle schools.
30
Purpose: Availability of quality therapies and interventions
1. Provide accessible funding for higher education and continuing education in disciplines that
provide direct care to individuals and families.
2. Provide increased and affordable training options for teachers and other providers of direct
service to children with Autism Spectrum Disorders.
3. Establish publically funded multi-disciplinary service centers in Northern Virginia so that
families are able to receive all necessary services in one location.
4. Establish minimum acceptable standards for education, training and demonstrated
competence of all personnel providing services.
5. Provide a venue for parent training in delivering some services to their own children such
as Applied Behavior Analysis or DIR.
Purpose: Connect persons with an Autism Spectrum Disorder and their families to
coordinated information and services.
1. Establish an autism resource center in northern Virginia that serves as a centralized
resource for information and referral for evidenced based services and providers to
streamline the process.
2. Connection to valid autism related information and evidence based services needs to
happen immediately and at a level of breadth and intensity that is known to be critical to a
best outcome.
3. Establish publically funded multi-disciplinary service centers in Northern Virginia so that
families are able to receive all necessary services in one location.
4. Disseminate information related to local information and referrals to primary care
pediatricians for distribution to parents.
5. Ensure that information and referral services are accessible to individuals with limited
English.
Purpose: Ensure availability of high quality public school services for children 12 months of
the year
1. For all children with AUTISM eligibility for special education services, extend academic
programs through the summer including academic interventions, social opportunities,
speech/language therapy and occupational therapy.
2. Provide education and training to all direct service providers and classroom aids on how to
understand and work with children with autism spectrum disorders.
31
Purpose: Promote independent functioning and high quality of life for adults with Autism
Spectrum Disorders.
1. Support additional research on matching family and individual needs with available
services and supports across the lifespan.
2. Provide information on SSDI and SSI to families of children as part of the IEP/504 process in
the public high schools in preparation for loss of insurance coverage.
3. Improve and expand longer term care and service options for adults with Autism Spectrum
Disorders.
4. Improve access to public transportation.
5. Enhance, develop and coordinate support services in the home for persons with Autism
Spectrum Disorders.
6. Establish partnerships with community colleges and universities to provide a program of
support for young adults in areas of academic, social, and mental health need.
7. Establish training programs within the public high school system to address specific life
skills needs that may not have an obvious direct academic impact such as public safety,
social interactions, interpersonal relationships and safe relationships, cooking, money
management, grooming/hygiene, sex education, self-awareness of mental health needs and
personal health care.
Purpose: Identify gaps in the system for providing comprehensive care and support for
individuals and families with an Autism Spectrum Disorder
Establish a committee to review the expressed needs of affected individuals and families expressed
in this report in conjunction with the report titled Establishing a Detailed Action Plan
for Serving Individuals with Autism Spectrum Disorders released November 30, 2010 so that
public needs can inform decisions for funding services.
1. Create partnerships with educational institutions, faith based organizations, and public
community organizations to meet specific service needs.
2. Increase the availability of case management services for families of individuals with
Autism Spectrum Disorders.
32
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