Running head: Autism in Alabama: Meeting Developmental Needs

Autism in Alabama: Meeting the Developmental Needs of at Risk Children Who Age out of
Early Intervention but are Too Young for Public School

Autism in Alabama: Meeting Developmental Needs

Table of Contents
Introduction..3
Definition

of

the

Problem..

...3
Formulation of Plan

...

6
Overview

of

Population...

.6
Program Boundaries.....6
Program Feasibility..........7
Available Resources........8
Needs Assessments......8
Conceptualize

the

Problem..

.9
Decision Tree.12
Theoretical Framework..13
Plan Details....11
Plan Activities....15
Plan Evaluation..16
References..17
Appendix A....19
Appendix B20
Appendix C21

Autism in Alabama: Meeting Developmental Needs

Autism in Alabama: Meeting Developmental Needs

Autism in Alabama: Meeting the Developmental Needs of Children Who Age Out of
Early Intervention but are Too Young for Public School
The purpose of this paper is to present a program summary and evaluation of a program,
implemented in the community, that identifies at risk children in the state of Alabama, who may
have autism spectrum disorder (ASD). The age range will be three to four years of age. These
children will be identified as having developmental delay, but, are too old for early intervention
services, and do not receive additional medical or developmentally therapeutic services until they
enter the public school system. Children with both diagnosed and un-diagnosed autism are
studied. The project was initiated May 2016 and will conclude November 2016.
Define the Problem
Many children with autism and autism spectrum disorder(ASD) go undiagnosed. Early
diagnosis and treatment are the keys to helping a child with autism reach his or her full potential.
The average age of diagnosis of autism is over age 4 even though autism can be diagnosed as
early as 2 years of age. One in 68 children in the United States has autism spectrum disorder
which is a 30% increase from the estimate of 1 in 88 children two years ago (Falco, 2014). The
increase in the incidence of autism raises new concerns about access to care, because autism is
life-long issue (Falco, 2014).
Researchers at the University of Alabama at Birmingham, who lead the Alabama
Autism Surveillance project and studied 32 northern Alabama counties as part of the report,
say that Alabama's numbers show that one in 210 children have autism, much lower than the
national average of one in 88 children (Leech, 2012). It is widely felt that the children in
Alabama are not being diagnosed and are not getting proper services (Leech, 2012). Though
studies done by the Center for Disease Control and Prevention (CDC) and Alabama Autism

Autism in Alabama: Meeting Developmental Needs

Surveillance Project gave insight to autism in the state, the studies did not truly reflect how
autism effected the entire state. Out of 67 Alabama counties, only children in nine were
studied in the central and northeast part of the state (CDC, 2016). Traditionally, it was thought
that people with autism had intellectual disability, but some children with autism have normal
intelligence and are high-functioning (Falco, 2014).
There are huge disparities in access to care in poor families and minorities (Falco,
2014). Problems attributed to poor access to care include: single parent homes, lack of
insurance coverage even in states that mandate autism coverage and not enough trained
professionals to aid in autism diagnosis (Falco, 2014). Medicaid does not cover autism
therapy for young children at the most critical stages of their development (Falco, 2014).
Children with disabilities face many challenges. Usually, someone is considered disabled based
on medical models that equate disability with an impairment of one or more body functions or
structures that interfere with daily activities (Sharby, 2015).
One of the challenges, delays in receiving appropriate health care, is an important issue
for this population. Primary care is important to ensure that members of the community have
adequate access to the health care delivery system. Preventative care, such as making sure
important developmental milestones are not lost, also is important. Autism spectrum disorder is
a disability. In 1990, the Americans with Disabilities Act (ADA) defined disability as a person
who is either physically or mentally impaired to a point that limits the performance of at least
one daily activity.
Early diagnosis and identification of risk factors for chronic disease are important to
improve health outcome and reduce the burden of health care funding on community as a whole.
The Americans with Disabilities Act of 1990 was the first comprehensive civil rights legislation

Autism in Alabama: Meeting Developmental Needs

for persons with disabilities (Stanhope, & Lancaster, 2014). One of the most important impacts
of the passing of this bill was the emphasis that was placed on community care for the disabled
instead of institutionalizing them and the growing emphasis on providing care in as much of a
home-like environment as possible (Stanhope & Lancaster, 2014). Developed under the
leadership of the Federal Interagency Workgroup (FIW), the Healthy People 2020 framework is
the product of an exhaustive collaborative process among the U.S. Department of Health and
Human Services (HHS) and other federal agencies, public stakeholders, and the advisory
committee. Healthy People 2020 identified and outlined topics of importance related to disabled
Americans (healthypeople,2016).
Objective DH-4: Reduce the proportions of people with disabilities who report delays in
receiving primary and periodic preventative care due to specific barriers, addresses the
differences and difficulties those with disabilities face in obtaining healthcare related to those
who do not have disabilities (heathypeople,2016). Many children are identified at birth as
needing the services of early intervention (EI). Early intervention in the state of Alabama covers
children from birth through 2 years of age. Early intervention in the state of Alabama was a
direct result of the Individuals with Disabilities Act (IDEA)Part C. Early intervention is a way
that children with identified disability, effecting development, can get needed services.
When a child in early intervention services turns 3 years of age, they are immediately no
longer qualified for those services. From 3 years of age to 4years, many children with both
diagnosed and undiagnosed autism are still in need of critical developmental therapy. These are
the children that have aged out of state and federal early intervention services, but due to
culturally, and economic disparities, go under served until they enter the public school system.

Autism in Alabama: Meeting Developmental Needs

Formulate the Plan

Population
The population examined will be children ages three to four years old in the state of
Alabama, who can be identified as at risk for developmental delay and display signs of
undiagnosed autism. The exact reason for autism remains unknown.
associated with disorders of brain development.

ASD and autism is

People with autism have difficulty

communicating (verbally and non-verbally), display awkward behavior that is described as

repetitive and have difficulty interacting with others in social environments. Signs of autism can
be diagnosed in childhood and effects of autism last a lifetime (CDC,2016). 1 in 175 8-year
olds in the state of Alabama in 2010 were identified as having autism and of that number, boys
were more likely to be identified than girls (CDC, 2016). Children that were black or white were
more likely to be identified as having autism than Hispanics, and 53% of the children with
Autism were diagnosed as having developmental delay by the time they were 3 years old. (CDC,
2016). Autism, however, occurs in all cultural and socio-economic backgrounds.
Program Boundaries
The program will be based on developmental concerns related to children in the state of
Alabama. The target group will be children ages 3 to 4 years of age with developmental delays
mimicking autism who no longer qualify for early intervention services or children ages 3 to 4
years of age with undiagnosed autism. The children entering this program will be identified by
their primary care providers, consulting physicians or day care teachers as having normal
physical development but display awkward social interaction or communicative behavior. Upon
identification by caregivers, an Advanced Community Health Nurse (APHN) from Childrens of
Alabama (COA) will do a specialized nursing assessment using the ADOS-2 autism diagnostic

Autism in Alabama: Meeting Developmental Needs

evaluation (see Appendix A) or the M-CHAT Checklist (see Appendix B).

8
Upon autism

confirmation by nursing assessment, the APHN from COA will arrange an appointment with a
physician specializing in developmental medicine for further evaluation and institute nursing
case management until child enters the school system to assure individualized developmental
progress and treatment.
Program Feasibility
Caring for a child with ASD can place a heavy economic burden on families and
communities and it is estimated to cost at least $17,000 more per year to care for a child with
ASD compared to a child without ASD (CDC, 2016). Costs include health care, education, ASDrelated therapy, family-coordinated services, and caregiver time. Taken together, it is estimated
that total societal costs of caring for children with ASD were over $11.5 billion in 2011(CDC,
2016). The American Academy of Pediatrics (AAP) recommends that all children undergo
routine developmental screenings at 9 months, 18 months and 24 months (AAP, 2016).
However, in spite of these recommendations, a little over half of primary care providers report
that they actually do these screenings if obvious developmental delays arent present (AAP,
2016). This adds to the delay in identification of autism and developmental stagnation that can
occur in children who are losing their early intervention services or those who have never been
diagnosed, surprisingly, given the often reported awkward behavior. Early diagnosis and
treatment are the keys to helping a child with autism reach his or her full potential. The average
age of diagnosis of autism is over age 4 even though autism can be diagnosed as early as 2 years
of age. Community leaders and physicians who specialize in developmental medicine both agree
that there are huge disparities present when it comes to early diagnosis and treatment of children
autism in the state of Alabama.

Dr. Morissa Lidinsky says, School administrators and

Autism in Alabama: Meeting Developmental Needs

developmental medicine physicians also agree that there is a need for a common link within the
community to assess, identify, and link children and families with autism with available
resources (personal communication, July 13, 2016). This link, the APHN, will connect the child
and family with both medical and educational community resources.
Resources
APNs, nurses working in primary health care offices and schools, and school
administrators will be educated on signs and symptoms of autism and assessment of children
ages 2 to 4 years in monthly classes at facility or via computer based learning module.
Educational activities will help develop working knowledge of developmental theory, such as the
work of Erik Erikson, and will aid in recognition of deviations in normal progression. Once a
child is identified as having potential autism, the APHN specializing in linking the child and
family with community resources will be asked to do an autism assessment at the childs next
visit to the referring facility or APHN assessment will be done via telephone interview with
caregivers using specified autism assessment tools after appropriate consent is obtained. Once
the child is identified as having risk factors for autism, the child will be referred to the autism or
developmental medicine clinic at COA or Sparks clinic for further assessment by physicians
specializing in developmental medicine.
Needs Assessment Tools
Two assessment tools, developed by experts in the study of psychology and child
development, will be used to assess children at risk for autism, however, there is no one perfect
assessment. The ADOS-2 (see Appendix A) is a tool used to diagnose autism through semistructured assessment (autismspeaks, 2016). The social interaction, ability to communicate and
play of the child is observed using special toys and creates an environment that allows the

Autism in Alabama: Meeting Developmental Needs

10

examiner to see behavior or absence of behavior that is consistent with autism. The ADOS-2
allows for various scenarios that allow for observation of cognitive and behavioral assessment
(autismspeaks, 2016). The ADOS-2 gives clinicians the opportunity to observe social behavior
and communication in standardized, well-documented contexts which are defined according to
the degree in which the examiners behavior elicits an individual response or social interaction
from the participant (autismspeaks, 2016).
The behavior is scored and based on score, a diagnosis of autism is either made or
disputed. For diagnosis, the use of ADOS-2 should be accompanied by information from other
sources, especially, a detailed history from parent or caregiver when possible (autsimspeaks,
2016). The M-CHAT (see Appendix B), another diagnostic tool, is used for children between 16
and 30 months of age and assesses risk of developing autism and is recommended by the AAP
(AAP, 2016). The M-CHAT (see Appendix B) was developed by a neuropsychologist and a
clinical psychologist. This tool consists of an initial screening and M-CHAT-R Follow-Up
Interview (see Appendix C). Often children, based on the initial interview and follow-up will be
screened as autistic, but after further evaluation by physician, do not meet criteria
(autismspeaks,2016).
Conceptualize the Problem
Several literature reviews were carried out looking at studies that identified gaps in the
identification of children with developmental problems. Boolean web searches were
implemented using the Jacksonville State library online data base and CINAHL, PubMed, and
Cochran were utilized. One search revealed a cross-sectional cohort study was conducted by the
New York State Department of Health Early Intervention program in 1999, to develop 6
evidence-based clinical guidelines that assisted stakeholders (health professionals, families,

Autism in Alabama: Meeting Developmental Needs

11

public officials) with identifying children who needed early intervention services. Developmental
problems that fell under these guidelines were: autism, communication disorders, pervasive
developmental disorders, motor disorders, downs syndrome, mental disorders, vision
impairments and hearing loss. These guidelines also helped with identifying differences in
children with developmental delays from other children who experience normal variations in
development. The most relevant recommendation that was concluded from the guidelines was
early identification of at risk children through routine developmental assessment by their primary
care providers (Romanczyk, 2016). The guidelines also recommend that families and all early
childhood professionals with regular ongoing contact with young children are important
resources for identifying developmental concerns (Romanczyk, 2016).
Another search revealed a longitudinal cohort study was done on possible causes and
early signs of autism. Parents and children in South West England were the focus of the study.
Child mannerisms were compared with reported behavior and observations made by parents.
This study investigated the results from the national, routine 18-month developmental
surveillance at Child Healthcare Centers (CHCs) on children later diagnosed with ASD
(Carlsson, 2016). Child Healthcare Centre records of 175 children, diagnosed with ASD before
4.5 years in Stockholm County, Sweden, were reviewed regarding the results of the eight-item
neurodevelopmental surveillance. Results were contrasted with normative data from the general
child population in Stockholm County (Carlsson, 2016). More than one-third of the total ASD
group, including half of the group with ASD and intellectual disability (ID), did not pass the
required number of items, compared to one in 50 in the general child population. Of those with
ASD and ID who had passed, more than one-third experienced developmental regression after 18
months of age. If the CHC surveillance had considered reported regulatory problems crying,

Autism in Alabama: Meeting Developmental Needs

12

feeding and sleeping then another 10% of the children with ASD and ID could have been
identified during this surveillance (Carlsson, 2016).The existing CHC surveillance traced half of
the group of children who were later diagnosed with ASD combined with intellectual disability.
Adding an item on regulatory problems to the 18-month surveillance would have increased this
number by another 10%. (Carlsson, 2016).

Autism in Alabama: Meeting Developmental Needs

Solution

Alternatives

1.Educate clinic
nurses and school
administrators on
developmental theory
and signs and
symptoms of autism in
3-4-year olds

Implement
Program

2. The APHN is
alerted by clinic nurses
or school
administrators of
children ages 3-4 years
with identified
developmental delay
consistent with autism

3. The APHN does

autism assessment and
refers positive screenings
to physicians specializing

in Developmental
medicine or autism at
Childrens of Alabama

No Intervention

13

Possible Risks
4. Children ages 3-4 years
old at risk for autism are
identified and referred to
developmental medicine
clinic. Identified
childrens therapies and
treatments are followed
by APHN until they enter
pre-kindergarten or
kindergarten services

Some clinic nurses and

school administrators
attend developmental
training and learn signs
and symptoms of
autism in 3-4-year
olds

All clinic nurses and

school administrators are
trained on developmental
theory and signs and
symptoms of autism in 34-year olds

All children are not

consistently identified by
clinic nurses and school
administrators. Some
children get referred
S

More children ages 3-4

years old are identified
at risk for autism

Outcomes

Best outcome

Fourth best outcome

Second best outcome

Fifth best outcome

Third best outcome

.
Worst Outcome
3-4-year olds at risk
for autism continue fall
through cracks and not
be identified

Theoretical Framework

Autism in Alabama: Meeting Developmental Needs

14

Eriksons Development
Erik Erikson was an American psychologist, born in and immigrated from Germany, who
developed a theory of human psychosocial development. Eriksons work was based on the work
of Sigmund Freud and his psycho-sexual theory of development. However, in contrast to
Freuds theory that human development follows a pattern based on sexuality, Erikson theorized
that development, particularly child development, was influenced by society and cultural factors.
Erikson did his research by studying Native American children in the Sioux and Yurok tribes.
Eriksons theory involved eight stages of development.
Both Erikson and Freud theorized, in order for a person to develop normally, they must
successfully complete each developmental stage.

Children with disabilities face additional

challenges in development. It is important that their progress through the healthcare system be
followed appropriately to promote positive health-care outcomes.
Detail the Plan
In an effort to meet the developmental needs of children in Alabama with autism, the
following objectives were created and will serve as a road map for the problem solutions:
Objective 1: Define health and access related issues that are associated with childhood
disability, autism, in the state of Alabama
Objective 2: Identify prenatal and postnatal factors that contribute to the development of
childhood disability, autism.
Objective 3: Examine why disability and disability health are important issues addressed
by Healthy People 20/20.

Autism in Alabama: Meeting Developmental Needs

15

Objective 4: Observe and participate in the medical treatment, associated therapies, long
term care goals, and family stressors associated with the care of children ages 3 to 4 years of age
with disabilities, such childhood demyelinating disease conditions and seizure disorder
Objective 5:

Incorporate and demonstrate the integration and practice of the five

advanced public health sub-roles in a community setting with preceptor supervision

Objective 6: Determine the needs of children and families of children with disabilities
associated with autism spectrum disorder, ages 3 to 4 years of age, childhood in the immediate
community, and establish ways the advance practice nurse can integrate case management into
continuity of care and positive long term outcomes
Objective 7: Implement and evaluate nursing case management strategies and goals of
treatment for children with disabilities associated with autism spectrum disorder, ages 3 to 4
years of age who have aged out of early intervention services, in the immediate community
through communication with primary care physicians, health departments, clinic nurses, school
administrators and families.
Four approaches will be used to solve his problem. The first involves educating clinic
nurses, and school administrators on developmental theory and signs and symptoms of autism.
This will be done through monthly in-services, staff meetings or by computer based learning
modules. Education will focus on identifying children ages 3 to 4 years of age who have
developmental delays consistent with autism who have aged out of early intervention. This will
facilitate early identification and aid in early treatment.
The second approach will deal with the APHN being alerted by clinic nurses and school
administrators of children with identified developmental delay consistent with autism.

Once

identification and appropriate consent is obtained, the APHN will do an autism assessment using

Autism in Alabama: Meeting Developmental Needs

16

the ADOS-2 (Appendix A) or the M-CHAT (Appendix B) at next scheduled office visit or via
telephone interview with caregiver. The third approach will deal with the APHN, based on the
findings of the nurse assessment, referring and scheduling an appointment for further assessment
by a physician specializing in developmental medicine at COA or Sparks Clinic. The final
approach will deal with the APHN engaging in case management for those children identified to
assure medical and developmental therapies until child enters the school system. After entering
the school system, either through pre-school services or kindergarten, the child will be
discharged from the autism assessment program.
Activities
Activities for the project began with the participation in a weekend camp that allowed the
APHN to observe and assess children with disabilities and interview their family members. This
assisted with identification of various challenges faced by the child and the family associated
with a long-term disability.

Another activity was identifying doctors specializing in

developmental medicine. Developmental medicine is a reasonably new concept in medicine. Dr.

Justin Schwartz works in conjunction with other doctors specializing in this unique field and
developed a developmental medicine clinic two years ago which is now a part of Childrens of
Alabama.
After meeting with Dr. Schwartz, and participating in his clinics, a better understanding
of the needs of this community was gained. Learning how to interact with and assessing children
with autism spectrum disorder and becoming familiar with assessment tools is very important.
Time was taken to review various developmental assessment created by experts in psychology
and it was discovered that much comfort in assessments was achieved through use of the MCHAT and ADOS-2 developmental modules. Phone interviews conducted with doctors who

Autism in Alabama: Meeting Developmental Needs

17

specialize in developmental medicine, Myriam Peralta, M.D., Morissa Lidinsky, M.D., and Justin
Schwartz, M.D., to get perspectives of care and needs within the community. Phone interviews
were also done with an early intervention therapist who does home therapies with at risk
children.
Phone interviews were done with a mother of a toddler identified to be at risk for autism
at his birth hospital who receives early intervention services but will be three years old in
January, 2017. A site visit was done at a local community based daycare to observe class size,
teacher interaction and visually assess for toddlers with potential delays. Email co-respondence
was requested of an alternative school administrator, however, there was no contact due to school
being out for the summer.
Evaluation of the Plan
After identification of perceived needs within the community related to children with
autism who do not have adequate access to care, a program for the APHN to help identify at risk
children within the community, with referral for further evaluation was talked about with the
doctors specializing in developmental medicine, however, a definite decision on plan
implementation has not been established. The plan is to present the program plan proposal to
developmental medicine leadership in hopes of implementation during fall semester 2016.
Additional information on program development and community benefit will be added to aid in
progression of desired project.

Autism in Alabama: Meeting Developmental Needs

18

References
AAP. (2011, June 27). Are Pediatricians Screening for Developmental Delays? Retrieved from
American Academy of Pediatrics: http://aap.org
Association, A. P. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th E.d).
Washingotn, DC, & London, England: American Psychiatric Publishing.
Autism Speaks. (2016, Retrieved July 18). Retrieved from Modified Checklist for Autism in
Toddlers, Revised (M-CHAT-R): http://www.autismspeaks.org/whatautism/diagnosis/screen-your-child
Autism Speaks. (2016, Retrieved July 18). Retrieved from About the ADOS:
http://www.autismspeaks.org
Carlsson, L. H. (2016). Autism spectrum disorder before diagnosis: results from routine
developmental surveillance at 18 months. Acta Paediatrica, 105(7), 823-828; doi:
10.1111/apa.13418.
CDC. (2016, Retrieved July 12). Community Reports from the Autism and Developmental
Disabilities Monitoring (ADDM) Network. Retrieved from Centers for Disease Control:
http://www.cdc.gov
Falco, M. (2014, March 28). Autism rates now 1 in 68 U.S. children: CDC. Retrieved from CNN:
http://www.cnn.com/2014/03/27/heath/cdc-autism/
Healthypeople. (2016, Retrieved July 13). Disability Health. Retrieved from Healthy People.gov:
http://www.healthypeople.gov

Autism in Alabama: Meeting Developmental Needs

19

Leech, M. (2012, March 29). Autism Diagnoses for Alabama Children Jump 50 Percent Since
2002. Retrieved from Al.com:
http://www.al.com/spotnews/2012/03/autism_diagnosis_for_alabama_c.html
Lidinsky, M. (2016, July 19). M.D. (L. Harris, Interviewer)
Robins, D. F. (2009). M CHAT. .
Robins, D. F. (2009). M-CHAT-R Follow-Up Scoring Sheet.
Romanczyk, R. G.-G. (2016, Retrieved July 13). Clinical clues, developmental milestones, and
early identification/assessment of children with disabilities: practical applications and
considerations. Infants & Young Children: An Interdisciplinay Journal Of Early
Childhood. Retrieved from Ebsco Host: http://www.eds.b.dbscohost.com.libproxy.jsu.edu/ehost/pdfviewer/pdfviewer?vid
Sharby, N. M. (2015). Decreasing Health Disparities for People with Disabilities through
Improved Communication Strategies and Awareness. International Journal of
Environmental Research and Public Health, 12(3)., 3301-3316.
http://doi.org/10.3390/ijerph120303301.
Stanhope, M. &. (2014). Public Health Nursing: Population-Centered Health Care in the
Community (8th E.d). Maryland Heights, MO: Elsevier/Mosby.
WPS. (2012). ADOS-2: Pre-Verbal/Single Words- Age Recommendation: 31 Months and Older.
USA: Western Psychiatric Services.
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Autism in Alabama: Meeting Developmental Needs

Appendix A

Appendix B

20

Autism in Alabama: Meeting Developmental Needs

Appendix C

21

Autism in Alabama: Meeting Developmental Needs

22

Autism in Alabama: Meeting Developmental Needs

23