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Running head: AUTISM SPECTRUM DISORDER CLINIC PROGRAM

DEVELOPMENT 1

Autism Spectrum Disorder Clinic Program Development


Abbie Beutler
University of Utah Occupational Therapy Student

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

Introduction
The purpose of this project is to conduct a needs analysis of The Autism Spectrum
Disorder (ASD) Clinic. Data gathered from this assessment will help identify the needs of
this population. Once needs are identified, current research will be used to develop a
meaningful occupation-based program. The overall objective is to serve the current and
future clients of the ASD Clinic.
The occupation-based program being proposed, aims to provide intervention that
is currently lacking at the ASD Clinic. Hypothetically University of Utah occupational
therapy students will deliver the care requested. This will be done with the supervision of
an occupational therapist. The areas with which these children need intervention will be
identified through a needs analysis. These intervention sessions will be customized to
what the caregivers and healthcare professionals voice as most beneficial.
Description of Setting
History & Mission
The ASD Clinic is a branch off of an original neurobehavioral clinic. The idea of
the neurobehavioral clinic was initiated in 1988 with a vision to provide health care to
complex children with developmental disabilities, coupled with psychiatric and medical
problems. This way, patients could have all their health needs cared for in one location.
This would eliminate the blending of funds and keep all healthcare disciplines informed.
The ASD Clinic was an addition to this model and its primary purpose is for the diagnosis
and treatment of those with Autism Spectrum Disorder (ASD).
The mission of the ASD Clinic is to partner with individuals and families, to
improve the lives of those with ASD. The clinic accomplishes this goal by optimizing the

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

quality of life of the people they serve by providing excellent, compassionate, and
integrated health services throughout the lifespan. The main service they provide is an
assessment to determine if a child has ASD. This is a 3-hour process including the
administration of Autism Diagnostic Observation Schedule (ADOS) by a psychiatrist.
Having this diagnosis grants the families opportunity to access healthcare services in
Utah. Medicaid recently passed a law that covers ASD related services to children under
the age of 21.
Disciplines & Services Provided
The team at the ASD Clinic has extensive experience and education in autism
allowing them to provide numerous skilled services as well as access to a variety of
resources. The clinic offers social groups, individual/family therapy, school consultations,
early intervention services, referrals to out-of-house occupational and speech therapy, as
well as behavioral management if another diagnosis is suspected. Professionals within the
ASD Clinic include psychiatrists, medical physicians, recreational therapists, behavioral
workers, case managers and social workers. For all other disciplines they refer to outside
providersout.
Location
The ASD Clinic is located at 650 Komas Drive, Suite 206 in Salt Lake City, Utah
on the University of Utah campus. They work closely with the Department of Psychiatry,
the Neurobehavior HOME Program, and the University Neuropsychiatric Institute. This
grants them a wide variety of resources, which are located in the same business building.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

Population
The majority of clients seen are between the ages of 4-21. More clients tend to be
male. This statistic is supported by the Center for Disease Control who reports there is a 4
to 1 boy to girl ratio with the diagnosis of ASD (Autism Spectrum Disorder, 2016).
Families come from all over the states of Utah, Wyoming, and Idaho. Clients come varied
SES backgrounds, family situations, and ethnicities. Families are referred by their
physicians, through the childs school, or they schedule appointments on their own.
Funding
The ASD Clinic has direct funding from the University of Utah. Thus employees
are paid a salary rate for their expertise. The clinic strives to serve the communitys needs
regardless of their ability to pay. Clients payments come through means of private
insurance or out of pocket. As a clinic they receive limited scholarships from donors, but
these funds can be applied for if there is a financial need. For an understanding of service
costs approximate numbers are displayed in Figure 1 below.

Figure 1 Service Costs

Autism diagnostic testing


Further related testing
Therapy groups
Psychiatric consultation
Individual/family therapy
Behavior/school consultation

$1000-$1400
$225/hour
$40 per session
$600
$110 per session
$110 per hour

Early intervention
Please inquire
(Autism Spectrum Disorder Clinic, 2016)
Plans for Future Programs
In a meeting with Dean Weedon (Program Manager), Court Allred (MSW), an
OTR, and myself, we discussed their future plans to have occupational therapy services.
They envision a program at their clinic that works in conjunction with University of Utah

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

occupational therapy students. The detail and design of this program were delegated to
me, with direct supervision from Court Allred. The goal of this program is provide to
provide quality services to families and their children with ASD.
Professionals at the ASD Clinic have become very involved in planning and
implementing this program. They have been anticipating occupational therapy for a
while. When occupational therapy services were mentioned, all employees expressed
excitement and support for this potential opportunity. They communicated that
occupational therapy is a referral they often make. If patients could have OT services
provided at the clinic then the clinic can provide more encompassing care for the patient
and their family. AssistanceHelp in delivering surveys was offered by multiple
disciplines.
According to Court Allred (MSW), there are so many clients that need
occupational therapy services; he believes we will have to prioritize who receives them.
This will be an area to consider as the development of this program progresses. A solution
for this is to get university occupational therapy students involved with care for clients.
This way more clients can be served.
Data Collection Current Programming Strengths and Areas for Growth
Strengths
The ASD clinic has a mission to improve lives for those with ASD. That mission
is the biggest strength this facility offers. It was designed around the idea of bringing all
healthcare needs for their clients to one location decreasing the stress of having to go to
multiple settings to receive quality care. It is a place where patients and their families
know they will be exceptionally cared for. Neurobehavior HOME recently asked their

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

clients about the satisfaction of care. They found that patients were unanimously more
satisfied with their current healthcare team than they have ever been in the past. This says
a lot about their model in providing care as a team (Neurobehavioral HOME Program,
2016).
Area for Growth
The biggest concern this clinic battles with is employee turnover rate. Patients
have voiced this as their biggest complaint. Patients feel they build a relationship with
their physician or therapist, and share very personal experiences. Progress is made with
this supporter by their side. When a support like thatthis staff person leaves, clients feel
they have to start over. This area for growth needs to be addressed from a higher
administratorHigher administration needs to address this issue. The reasons for
employees leaving could vary from salary, location, or lack of advancement in the clinic.
As a whole this is the largest area of concern. Information can easily be transferred to the
new hire, but it is the rapport that is difficult to reestablish.
On-Site Data Collection
Data gathering was structured around starting broad and then narrowing in on
specific concerns. Thus observations were done first, to get a holistic view of how the
clinic runs. Observation was also a way to get feedback from clients. These findings then
sparked the second step of interviewing professionals within the clinic. This was done via
face-to-face interviews. After data from interviews was analyzed it became apparent that
a survey needed to be sent to caregivers.
Observation of clients. Administration of the Autism Diagnostic Observation
Schedule (ADOS) was observed. This process is explained to the caregiver in the lobby

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before the child enters the testing room. It is explained that the child will be given
specific opportunities to play and interact. During this time a psychiatrist observes, to
determine if the child has Autism. The psychiatrist will then identify a general care plan.
Obtaining a diagnosis is necessary in accessing services and a great first step for families
to take. From here, it is the clinics responsibility to provide the child with the referrals
they need. Sadly the clinic cannot provide every resource in house.
Observation findings. From these observations, the children were noted to truly
seek sensory input. They were underdeveloped in language and gross motor coordination.
These would be areas to consider for the program. Post observation it became clear that
in order to determine what resource was most needed, employees at the clinic would need
to be interviewed. As stated previously the ASD Clinic provides a gamut of resources, but
still lacks a complete service plan.
Staff interviews. In order to gather an overall perspective of how the clinic
functions, one representative from each discipline was interviewed. The interview
included one simple question, What resource could your patients benefit from that is not
currently offered here? The interviewer recorded notes of their responses. Responses are
displayed below. Some interviewees shared supplemental suggestions for the program
development.
Behavioral Tech: Social interactions with peers need to be more emphasized.
They get it through school and sometimes play dates, but eye contact and
nonverbal communication is so vital for their current and future independence.
C. Thorton (personal communication, September 13, 2016)

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Applied Behavioral Analysis Therapist: As ABA therapists we help children and


their families change the behavior of a child. We do not specialize in sensory
regulation. When a child is hitting their head, or biting their nails, while they are
alone, we do not have an answer to that. This is where we need an OT to
intervene. S. Wheeler (personal communication, October 19, 2016)

Social Worker: We run groups here and do not get as good of a turn out as we
would like. If we could get an OT hired, or even OT students involved with the
care of our patients they could run groups or sessions on life skills, job skills, and
sensory needs. In discussion with the social worker he highly recommends
incorporating OT students within their clinic. The OT department is located up the
road from this clinic. Students and the clinic could both benefit from this
interaction. C. Allred (personal communication September 7, 2016)

Psychiatrist: Having someone who specializes in sensory diet would be a huge


asset for our clients. So many times children have these needs and they go
unnoticed. N. Buergerer (personal communication, September 7, 2016)

Program Director: We have a huge need for occupational therapy at our clinic. If
a sensory screening could be implemented somehow I think our clients would
highly benefit from this. D. Weedon (personal communication, September 13,
2016)

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Recreational Therapist: We run activities for these kids weekly. The hardest thing
is getting them to participate socially or focus. If there were some type of training
in this, running the groups would go much smoother. N. Mortensen (personal
communication, October 5, 2016)

Physician: Group home leaders need to be trained and better equipped in


medication management. Education for care managers would help the system
run much smoother at home. So many times they are uninformed on recognizing
pill types, or changes in their clients medications. This is a large responsibility to
undertake, but very important for our patients quality of life. P. Baesae (personal
communication, September 7, 2016)

Therapy: Parents and children in this area would benefit so much if there was a
local developmental preschool. They have no place to take their children during
the day. Another help for families who live remotely would be a list of OTs in
their area so that parents do not have to commute to Salt Lake for care.
Educational sessions for parents would also be helpful post diagnosis. After the
parent has digested the new diagnosis they can come back in with all their
questions instead of asking Google. J. Ng (personal communication, September
7, 2016)
Interview findings. After conducting the interviews, data showed the three main
concerns were sensory regulation, social interaction and education, whether for
caregivers or clients. With this funneled information from interviews and observation,

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caregivers were given a specific survey that provided at platform for parents express their
childs needs and voice how sessions can be more convenient.
Parent/caregiver survey. Using the responses from observation and healthcare
professionals, a survey was developed. This survey was designed to investigate where
parents viewed gaps in services. It also included what type of helps they would be
interested in. Questions were aimed to identify barriers and leave room for
parent/caregiver feedback. This survey was sent out via email with a link for recipients to
click on. The complete survey is depicted in Figure 2.
Survey results. The results to this survey are found in Figure 3. Of the 100
surveys sent out 15% of parents responded. The main diagnosis of all children was stated
as Autism, with secondary conditions of depression, anxiety, ADD, and mood disorder.
There was one child with a primary diagnosis of brain injury. The ages ranged from 5 to
20+. Parents voiced their biggest concerns as There were 3 concerns that parents voiced
most frequently. The first was (1) having to provide supervision. This supervision was
due to aggressive behavior, aid with self-care tasks, and the inability to complete
responsibilities and tasks independently. (2) Social skills were the second mentioned
concern. Friend making was stressed as a difficulty along with maintaining eye contact.
Lastly s(3) Sensory regulation was the next area parents request help for.
Parents were asked to select all interventions their child needed. With that, 90% of
parents selected social intervention and job skills, while 80% of parents also selected
sensory regulation and executive function. They were then asked to list which
intervention they most preferred. Executive function was ranked number one, with social
participation and sensory regulation respectively. It was very interesting to note that the

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least likely classes they would have their child attend were writing, feeding, gross motor,
and self-care.
When a program like this is developed it is important to look at the small details
that will get people to participate. Parents stated the biggest barrier to participation would
be money or cost of services. Another area to consider is when can people attend? Thus,
questions of how parents prefer services delivered were also asked. Forty percent of
parents prefer a one on one session with a professional, while 20% prefer at home, and
20% prefer groups. Seventy-two percent desire at-clinic sessions compared to while at
home (18%), telehealth (9%), and schools (0%). When asked how often they could bring
their child in, 54% suggested one time and would request reminders to be sent through
email and/or text. Parents were unanimous in requesting afternoon and evening sessions.
As well as having the treatments in the clinic.
It was interesting to note that 90% of parents said they were not interested in a
developmental preschool. Although, when data is looked at more closely, this could be
due to age of respondents. As only 10% fall into preschool age range. A handful of
healthcare team members suggested caregiver courses. When asked 63% of parents were
interested in attending those during their childs session. Of that 63% interested, 71%
would prefer a social worker to lead the group. When parents were asked about online
support groups, approximately half said yes and the other half was not interested.

Results
All data collected needs to be weighed out to decipher if parents carry more weight in
their suggestions, if observation tells all, or if the healthcare team has valid concerns. The

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correct answer is, to combine all concerns together in creating a program that will benefit
the child and their support systems. From the data collected, the largest areas of concerns
affect the childs independence with tasks. With the results, this dependence on caregivers
seems to be influenced by a lack of (1) executive functioning and(2) sensory regulation in
the children. This needs to be screened for each child on an individual basis. (3) Social
interactions are also a concern that can be incorporated through small groups, or on an
individual level. This will involve specific social skills and appropriate public behavior.
This program will be developed in correspondence to survey results. Involvement
of caregiver support/lectures will be considered. Also a curriculum will be designed for
children who have specific needs. Others will be done on a client-to-client basis by an
evaluation of an occupational therapist and student.
The need for OT at ASD Clinic
The Autism Spectrum Disorder Clinic (ASD Clinic) currently uses a
transdisciplinary approach to gain holistic treatment for their clients. Within this approach
there is a psychiatrist who diagnoses the clients, there are social workers that support the
childs family, and there are recreational therapists that run groups for the children. The
mission of the ASD Clinic is to partner with individuals and families, to improve the lives
of those with ASD. The clinic strives to optimize the quality of life for people they serve
by providing excellent, compassionate, and integrated health services throughout the
lifespan (Healthcare, 2016). The only trouble is, not all services are offered within the
clinic, and parents are referred out for treatment.
Who is helping them develop all skills needed throughout their lifespan? What
about their self-care tasks, motor skills, decision-making, sensory regulation, sleeping,

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and educational development? The gap this leaves for occupational therapists to work
with is enormous. Having all disciplines in the same location working together with the
client is a goal for the future of the ASD Clinic. Currently the clinic refers out for some
services. In a systematic review done by Kuhaneck and Watling (2015), parents
mentioned financial hardships, parental absence from work, and traveling around
multiple appointments to be their biggest stressors in raising a child with autism spectrum
disorder (ASD). The current status of hiring an occupational therapist at the ASD Clinic
is being considered, but funding is a barrier.
Needs Analysis Results
The clinic currently does not have enough funds to provide a full-time
occupational therapist. Occupational therapy may be a possibility, if services were
granted on a minimal budget. If so, then care would need to be prioritized. When a needs
analysis was conducted on-site, healthcare professionals were questioned about what
resources their clients could most benefit from. Different focus areas of occupational
therapy were suggested, such as social interactions, sensory regulation, life skills, job
skills, and caregiver education/support. When parents of the ASD Clinic clients were
surveyed it was unanimous that they would prefer to have in-clinic occupational therapy
services rather than be referred out. Parents also mentioned that the priority of services
for their children would be developing social skills, executive functioning, and sensory
regulation.
Challenges of ASD
There are many challenges associated with ASD. These challenges affect both the
individual diagnosed and his or her family. The prevalence of ASD is on the rise. Tanner,

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Hand, OToole & Lane (2015) revealed that 1 in 68 children being diagnosed. That is a
30% increase since 2008. With the increased frequency of this disorder affecting families,
the need for services becomes apparent. People with ASD experience barriers that affect
their participation in life on a daily basis.
Challenges for the child
The design of this program will be created around input from parents, observation
of children and professional consultation. Executive functioning and social participation
were the top two concerns mentioned by parents of clients receiving services from the
ASD Clinic. Cramm, Krupa, Missiuna, Lysaght, & Parker (2013), interviewed 13
occupational therapists to gather qualitative data exploring if executive functioning
should be considered when doing occupational therapy evaluations. The results suggest
that occupational therapists are qualified to do such training and that if this concern is not
addressed; it leaves the children at risk for secondary mental health problems. These
health problems include lifelong reduction in earning potential, increased likelihood to
access government income, greater risk of dropping out of high school and higher risk of
involvement in the criminal justice system (Cramm, et al. 2013).
Parents, as well as ASD clinic professionals, mentioned improved social
participation as another area of major concern. Tanner et al., (2015) found that
occupational therapist practitioners are well placed to implement social training programs
to improve social skills in people with ASD. One of the main determinants of an ASD
diagnosis is the childs ability to participate in social reciprocity in early development.
When this impairment is present it affects social, occupations, and other areas of
functioning (Kuhaneck, Madonna, Novak, & Pearson, 2015).

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The third area of concern mentioned was sensory regulation. A childs ability to
interact socially and demonstrate executive function skills may be directly related to their
sensory regulation ability. Ermer and Dunn (1998) suggest that some performance
difficulties may be associated with poor sensitivity processing. With this being said
interventions centered on the evaluation and treatment of sensory regulations may benefit
the child in multiple areas of their life.
Challenges for parents
When a parents child is diagnosed with ASD, parents and families are flooded
with new fear and anxiety. Regular routine changes and days are designed around a rigid
schedule to accommodate the child with autism and their needs. There are multiple
studies regarding the stress that parents experience when they have a child who has ASD
(Kuhaneck, 2015, Steiner 2012, and Tanner, 2015).
According to a study done by Kuhaneck and Watling (2015), children with ASD
experience delayed performance in feeding, toileting, oral care, sleep, educational
performance, play, and social interactions. These all impact their family and parental
stress levels. The need for family support is essential for optimal care and must be part of
program planning.

Screenings
In this outpatient setting it would be appropriate for an occupational therapist to
do screenings for newly diagnosed children with ASD. This would give the families some
direction on whether attention needs to be given to occupational family-centered
intervention. There are a few screening tools that will be used in conjunction with the

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specific needs discovered from the needs analysis. These screenings are to be conducted
by a registered occupational therapist.
Sensory Regulation
The Sensory Profile was developed by Dunn and colleagues (1998). It was
designed to assess the responses of children in their common sensory experiences. This
screening is a questionnaire completed by the childs caregiver or child if old enough. It
connects performance strengths and barriers with the childs sensory patterns by using a
series of questions. The information provides the professional and parent with evidence
on the childs sensory seeking, emotional reactiveness, endurance/tone, oral sensitivity,
inattention, poor registration, sensory sensitivity, sedentary and fine motor skills. This
screening has also been proven to show differences in children with disabilities, such as
ASD, ADHD or PDD and those without disabilities (Ermer, & Dunn, 1998). Not only is
this tool useful for therapists to design interventions, but also involves the caregiver from
the beginning so that treatments are client-centered.
Tomchek, Little, and Dunn (2015) suggests that recognizing sensory patterns
contributions as a vital component of the environment guides parents, teachers, and
practitioners to create effective context-specific supports that can improve child
participation in daily life routines. (p. 7)
Executive Functioning & Social Interactions
The Psychometric Evaluation of the Young Childrens Participation and
Environment Measure (PEM-CY) is a useful tool that the occupational therapist will use
in this program to gather information. The PEM-CY is a parent report that takes about 30
minutes to complete and it covers the environments of home, school, and community.

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Parents are asked about strategies in each of the mentioned settings. At the end, the
practitioner has an estimate of environmental supportiveness, participation frequency,
involvement and desire for change. This gives merit to the childs current social
interactions and executive functioning skills (CanChild Webinar, 2012).
In a study by Coster et. al., (2011), data was recorded from 576 respondents on
the reliability of PEM-CY. Internal consistency was moderate to good, the test-retest
reliability was moderate to good and there were significant differences between the
groups with and without disabilities on all scales. These results support the use of PEMCY in order to gain a better understanding of the participation of children and what goals
should be set.
Cramm et al. (2013) mentions that sensory and motor approaches are necessary
to consider but executive functioning also has its place. If children are noted having
difficulties getting started during a task, this may be an executive function difficulty. The
use of the PEM-CY will help in identifying these challenges, so that the child can be
trained on how to cope with these difficulties that come with ASD. Using checklists,
timers and meditation all have supported evidence to be effective tools for developing
executive functioning skills (Cramm, 2013).

Program Delivery
The program will be designed around a transdisciplinary model, with all
professionals working together to provide care for the client. Parents value having
occupational therapists on the team and it has been reported that occupational therapists

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are the third most commonly chosen intervention for people with ASD (Kuhaneck, &
Watling, 2015).
Groups
With the limited funding, running groups through the recreational therapist is the best
way for these children to develop the skills identified in their evaluation. The topics of
the groups may vary from month to month depending on the main needs of the clients.
But it is also important to keep in mind the need for consistency in skills training. As
mentioned by the parents, their biggest concerns are executive function, social
interactions, and sensory regulation. Groups for executive function can be based on
evidence found by Cramm, (2013). They found that teaching children with ASD to break
tasks down into its essential elements is a process that helps define the plan and its
sequence to a sense of desired product.
Social Groups. Social interactions are repeatedly described as a concern in research
with the ASD population. Group-based social skills training programs are those in which
a therapist leads a group of people through a training or curriculum. The goal of this
intervention is to improve social skills. In a review by Tanner et al. (2015), children were
found to have increased social skills, social communication, positive interactions and
decreased autistic mannerisms and negative interactions when participating in clinicbased social groups. Although time and frequency varied across studies, the most
effective groups meet regularly for at least 60 minutes for a total of at least 8 hours within
their program.
Sensory Integration. Sensory integration interventions also involve the use of selfregulation. It is important for a person to be able to identify what they are feeling first in

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order to get the input that they need. In a review of outcomes for occupational therapy
and sensory integration Cohn, Kramer, Schub, & May-Benson, (2014) they mention the
effectiveness of The Alert Program. This program uses cognitive and sensory strategies to
teach children to monitor and regulate their behavior. This technique improves functions
by managing the sensory system rather than changing the environment. This is a good
first step to take when improving sensory regulation. Especially in a setting where small
groups will be learning together in-clinic and where the luxury to give individualized
naturalistic care each session is not an option.
Supplemental Support
Literature supports the notion that parents of children with ASD are stressed and need
help (Kuhaneck & Watling, 2015). Parents must be included in the care process and need
to be cared for as well. An important fact to note is there is no way for professionals to
eliminate all stress in a parents life, but tools can be provided to manage their new
situation. There are three areas for parent education identified by Kuhaneck and Watling.
They are improving stress, increasing parental self-efficacy, and teaching them coping
skills.
Parent Education. In order to lend assistance to parents in this setting, it would be
best to start by visiting with them in the initial evaluation process. Educating the parents
about ASD will increase self-efficacy because they are better able to understand the
childs behavior. Reliable resources need to be offered to the parents. A great resource to
provide to parents is to the Pivotal Response Treatment. Steiner, Koegel, Koegel, and
Ence, (2012) found that using this self-directed DVD to learn about communicating with

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their child improved their interactions with their children. Using tools like this to build
confidence in parents will improve the situation for all involved.
Parent Support. Another resource that will be offered is a membership to the ASD
Clinic Facebook page. On this page, a current psychiatrist at the clinic updates recent
research articles. Parents are able to access this information anytime they want. They can
also use this cite to talk with other parents, and ask questions or advice. With knowledge
of this cite, parents can learn new things from a reliable source. Clifford and Minnes
(2013) support the notion of using parent support groups as a way to cope. They found
that parents who used parent support groups report more coping strategies than those
parents who do not.
In a different study by Clifford, and Minnes (2013), they looked at online support
groups specifically for parents of children with ASD. In this study they found that parents
who participate in the online support group were satisfied with what they received and
the topics discussed. It gave parents an opportunity to connect, it was cost-effective,
and the group was useful. (p. 1671)
Cohn, et al. (2014) mentioned When enacting family-centered care values,
occupational therapy practitioners effectively and compassionately listen to the concerns,
address the needs, and support the hopes of clients and their families. Collaborative goal
setting represents the desired outcomes of therapy and is central to both family and clientcentered care. (p. 454) The program aims to involve the parents in the evaluation
process, give the best care possible at the clinic with its limited funding, and provide
supplemental resources for the parents and families to get the support they need.
Program Proposal: ASD Group Sessions & Parent Support

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Program Overview
As determined by the needs analysis and research evidence, it is apparent that
clients at the ASD Clinic need treatment that encourages social development and
executive functioning; as well as support and education for caregivers. Tomchek, Little
and Dunn (2015) support the notion that a childs sensory pattern is a major predictor of
how well they will participate and perform in their environments during any type of daily
life routine. Gathering information on each child by using a sensory profile and a parent
report (PEM-CY) will provide an occupational therapist with the information they need
for an initial evaluation.
The ASD clinic currently addresses clients needs with a psychiatrists approach.
They do an excellent job of diagnosing children with Autism, behavioral disorders, or
other mental illness. What the clinic lacks is in-house therapeutic treatment. Once the
diagnosis is confirmed, the childs teacher and parents are notified, but then what are they
going to do with this information? The caregiver needs training and they need answers on
how they can help their child develop social skills, problem solve and function
independently. Staff have communicated that funding has been one of the leading barriers
to implementing these types of services at the clinic. The occupation-based program
proposed would help to bridge this gap in services at the ASD Clinic, while taking into
account funding needs.
The occupational therapist will take referrals from the psychiatrist and complete
the occupational evaluations mentioned above. Once evaluations are completed, the
occupational therapist and parent will create a care plan with the main needs of the client

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being addressed. From there, the child will be referred to the recreational therapist for
group sessions that are appropriate to their goals and needs.
The occupational therapist will work as a consultant for the recreational therapist,
relaying the focus for the child. Hanft and Place (1996) mention that providing a
consulting therapist can be a rewarding experience for team members. Working together
is what makes it rewarding. The authors also express that a therapists responsibility is to
suggest strategies that are useful for addressing the childs challenges. This type of
occupational therapy is quite common and allows therapists to be employed at a lower
cost for clinics. Since the ASD clinic does not have a large fund for occupational therapy,
this is the most feasible approach. The occupational therapist could then come in one to
two times a week to do evaluations and participate in consulting meetings.
As determined by the needs analysis, parents are also in need of support. Initially
parents will be educated in the evaluation session. Ideally this will be days after the
diagnosis and the OT can talk through new questions the parents may have. Reliable
resources will be offered to the parents at this point. The Pivotal Response Treatment will
be introduced as an option for parents to pursue. This is a self-directed DVD that teaches
them how to communicate effectively with someone who has ASD (Steiner, Koegel, &
Ence, 2012). Parent online support will also be encouraged. This will be through a site
overseen by the physiatrist.

Rationale for Occupational Therapy


Occupational Therapy is a skilled service that specializes in helping individuals
engage in meaningful occupations. They have an expertise in activity analysis, sensory

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

23

processing, environmental modifications, caregiver education, and a focus on making


interventions purposeful. One of the largest contributions that an OT can make in this
setting is using their professional training to evaluate and identify the childs sensory and
environmental barriers. Occupational Therapists are trained on administering the Sensory
Profile, Participation and Environment Measure for Children and Youth (PEM-CY) and
conducting direct observation. From these evaluations conclusions are made on what
changes need to occur in the individuals environment or what aids need to be provided
for their sensory regulation.
The clinic currently runs groups led by a recreational therapist. These groups,
while good for the clients, could be more effective. If the specific barriers of each child
were identified by an OT evaluation then the sessions can be more therapeutic and client
centered. For example, Eric attends a group lead by the recreational therapist. During
group he gets in trouble for jumping up and down when he is supposed to be still. If a
sensory profile were conducted for Eric before starting group, we would know that he is
identified as a sensory seeker and that sitting him in the corner for timeout will make
matters worse. If the group is not adjusted to meet Erics sensory needs, he could become
more agitated, which could lead to him acting out once he has been released from
timeout. His actions could look like a behavioral problem, but if we know from Erics
sensory profile that he needs sensory input we can solve the problem, by training him to
use an appropriate strategies to provide sensory input. This process is called sensory
integration. Unlike OTs, most recreational therapists, psychiatrists, and social workers
have not been trained or educated on sensory integration. Therefore, evaluation and
implementation of sensory needs will need to be overseen by an OT.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

24

Another area that differentiates OTs from other health care professionals, is their
propensity for occupational justice. As seen in the literature, children with autism are at
high risk for dependence on others. Fortunately this does not have to be the case. In an
article by Townsend and Wilcock (2004) they support the vision of having an
occupationally just world. They mention, Individuals and populations can flourish as
equal citizens in daily life (p. 3). These researchers also promote the use of clientcentered therapy. The results from Townsend and Wilcox support the mission of the ASD
Clinic. To partner with individuals and families, to improve the lives of those with
ASD. Involving the family will help the professionals gain a full picture of what goes on
outside of the clinic and it will uphold the efforts made so skills are generalized
throughout other aspects of the childs life.
Theoretical Support
The clients main goal at this facility is to be more independent in daily
interactions. The Person-Environment-Occupation (PEO) Model (Law et. al., 2006)
supports the person to gain optimal congruency between person, environment, and
occupation. This is an occupation-based model that encourages the direct use of
occupation as they progress in the therapeutic process.
There are multiple theories that explain the therapeutic mechanism behind the
PEO Model. The first being a transactional approach, which is an interdependence of
person, environment, and occupation. This interdependence is influenced on a very
individual basis because of the unique context, psychological, temporal, and physical
components each person and situation presents. On that note, understanding human
ecology is also a vital theory to consider. As a therapist it is important to gain an

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

25

understanding of what occurs within the childs environment. This can be done by having
the parents complete the PEM-CY or by direct observation. With this information the
therapist has a broader view of what is affecting the child on a daily basis, and if there are
any environmental changes that could be made.
One of PEO Models biggest strengths is that it emphasizes environmental
changes. It is much easier to change an environment than to change a person. Using the
Sensory Profile, the PEM-CY, and direct observation, if appropriate, we can understand
what barriers the child is experiencing that are hindering occupations. Then with the input
from parents, child goals can be set and solutions can be developed for optimal outcomes.
This overarching model will be very effective with the clients served by the clinic. Many
of the children referred to clinic groups have sensory regulation difficulties. Depending
on the childs needs, these difficulties can be easily managed by adapting the
environment or helping the child learn strategies to meet their sensory needs so they can
better participate in daily occupations.
Several other models will be used to support the PEO model to increase
occupational performance and congruence. In the needs analysis one of the biggest
concerns parents had was their childs ability to participate socially. The Social
Interaction Model (Olsen, 2009) states that skills, habits and routines surrounding social
participation are formed early in social development. As the evidence supports, social
skills are best learned during early years when children experience social situations. This
would be ideal for children at the ASD Clinic as most of them are 5 +. Sensory
processing directly effects these interactions. The sensory integration model seeks to

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

26

identify and adapt behavioral deficits in order to facilitate effective communication and
social participation (Brown & Nicholson 2011).
The first step is ensuring that the environment we are teaching these children in is
congruent to experiences they would have in daily interactions. Bandura (1977)
developed the social learning theory as described as observing the actions of others and
then modeling what they see. When there are positive social role models, outcomes are
better. The therapist can demonstrate a positive appropriate social interaction and have
the children practice what they see.
Executive functioning was another area parents had concerns. An effective way to
address this issue is through supported problem-solving experiences. This is a theory
designed by Vygotsky, known as the Social-Cognitive Learning Theory. Professionals
give cues to support the child during problem solving (Kozulin, 2003). This encourages
the child to think through the process and provide a hierarchy of cueing.
Program Goals and Objectives
As mentioned previously the purpose of this occupation-based program is to
improve the independence of children with autism at the ASD Clinic. Research supports,
that in order for independence to occur there needs to be a consistent and frequent use of
these interventions. Attendance and prioritizing are going to be key in providing quality
care.
Goal 1. To provide the clients at the ASD Clinic with in-house occupational
therapy evaluations with referral to appropriate in-house treatment groups from the
recreational therapist.
Objectives

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

27

1. OTR will perform occupational therapy evaluations on 80% of the children


diagnosed with Autism at the ASD Clinic by spring 2018.
2. Sixty percent of all clients will attend at least 5 out of 8 groups sessions with
the recreational therapist by Fall 2017.
Goal 2. To provide parents with education on Autism, through face-to-face groups
with a social worker and supplemental online support as necessary.
Objectives
1. That 60% of caregivers will attend an educational support session with the
social worker post diagnosis.
2. That a professional will head the online support group and provide research
based suggestions for parents on a bi-weekly basis.
Program Description
Occupational Therapy Role
A doctor of psychiatry will refer clients to the occupational therapist. An
evaluation and short parent education will be done in the OT office. After evaluation the
OT will determine if it is appropriate for the patient to attend groups. Once an evaluation
is done and information is relayed to the recreational therapist, the OT will rarely interact
with the child. This is not ideal, but customized to the resources this clinic currently has.
It will be very vital that upon initial hiring of an OT that they build a relationship with the
recreational therapist and train them on specific services implemented in their social and
executive function groups. After initial evaluation is done, and the recreational therapist
is informed, the child will join the social group the following week, at whatever session
they are on.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

28

Program Details
Social groups will be held for 60 minutes on eight occasions before the program
cycle starts again. In an interview with the current recreational therapist, eight group
sessions were designed in a manner that covers a variety of skills. These will all be
adapted to what individuals are in the session under the digression of the OT and RT.
Sessions will be held at ASD clinic in a conference room or out in the community if
planned.
Child services.
Session #1: Sensory Regulation Exploration
Patients are educated on the different types of sensory identifiers from seekers, to
avoiders. Examples and scenarios can be played out as examples of strategies to use and
then practice in the session. The Alert Program will also be introduced to provide another
strategy to regulate behavior. This will be as interactive as possible with parents and
children in attendance.
Session #2: Job Skill Training/Chore Participation
This session will be very customized to who is in the group and what chores and
job skills the patient has. Reference from the Getting To Know You (Figure 4.)
template will be used.
Session #3: Budgeting/Counting Fine Motor
Use of play money will be utilized in this session for budgeting skills. Candy
store, simple money game will be played to learn these skills. If the child does not have a
budgeting need this session will be used to develop FM skills that could be used in their
relevant occupations.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

29

Session #4: Problem Solving


The Social Cognitive Learning Theory (Vygotsky) will be used in this session to
train caregivers on how to use the hierarchy of cueing during a problem-solving task.
This is so the skill of problem solving can occur at home under caregiver supervision.
Session #5: Basic Interactional Skills
Using what Bandura (1977) suggested in the Social Learning Theory by
observing the actions of others and then modeling what they see. This can be done by
playing dress up and performing social scenarios, by video recording and then teaching
the patient what they could have done differently or having the therapist model what
should occur and have the patient practice. These options are all dependent on the
individuals skill level and situation.
Session #6: Friendship Skills
This session will be designed around the interests of the current group members
where they can develop friendships skills and conversation development.
Session #7: Organizing Get-Togethers
Group members will work as a group or in small groups to organize a get
together. Duties will be delegated and this will become an organization task. Cueing will
be provided as needed by RT or volunteers.
Session #8: The Get-Together
The party will occur this session where patients will have opportunity to interact
socially in an appropriate manner. Cueing will be given as needed. This may be a
community outing or activity, whatever the group organizes.
Staff Involvement & Logistics

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

30

During these social groups the recreational therapist (RT) will lead the group. It is
the recreational therapists responsibility to know each childs care plan individually. This
will be relayed to the RT in weekly meetings with the OT. When a child arrives for group
they will be given a nametag and the therapist will review with them their strategy and
goal for the day. This will refresh the therapists memory and also remind the child what
they should be focused on. All groups are currently run in the clinic and this will continue
to occur unless an in the community session is planned.
The use of volunteers at this clinic is very common, and volunteers will be
utilized. Group size will be no larger than four children per adult. As discovered in the
parent survey, parents prefer text reminders for these sessions. The front desk receptionist
will do this. A text will be sent out at the beginning of the week, and a parents will be
asked to respond with YES or NO if they are bringing their child. From there, the number
of volunteers can be determined so we have the proper adult to child ratio. A second text
will be sent out the day before. As requested through survey results sessions will held one
time a week in the afternoon or evening.
Parent support. Parent sessions will be run by the current social worker. He
will use the time the children are in session to give support in three main areas of
decreasing stress, increasing parental self-efficacy, and teaching coping skills. All
meetings will be held in a conference room at the ASD clinic, projector can be utilized if
needed.
During evaluation: ASD education to increase self-efficacy and provide them with
Pivotal Response Treatment self directed DVD to rent and return.
Session #1: Learning About Sensory Regulation.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

31

Session #2: How to Motivate your Child. Using natural reinforcement when a child
makes a meaningful request.
Session #3: How to Cue your Child, this will be an educational group on effective
wording when cueing the child.
Session #4: Put Cueing Into Practice. Parents will be combined with children for this
session and practice the cueing they have learned.
Session #5: Debriefing A discussion led by the social worker on what parents have
learned and how they feel things are translating at home. What is working?
Whats not working? What can they try differently?
Session #6: Social Support for Your Child. How to encourage social interaction and
initiation for your child.
Session #7: How to Cope With New Diagnosis. Parents will provided means of coping
and ways to decrease stress in life as guided by social worker.
Session #8: The Get Together parents are invited to attend the get together organized
by their children.
Time requirements.
Weekly Schedule- Times/dates will vary from week to week

Consulting meeting with OT and RT beginning of week


OT evaluations 1-2x a week
Groups for volunteers and RT to run 1x a week
Parent groups run by social worker 1x a week
Receptionist will send reminder texts for sessions and DVD returns

Budget. Each group session will differ on what supplies are needed. These activity
supplies will not differ much from what is currently used in groups. The general supplies
needed, will include snacks, utensils, paper, fidgets, chore supplies, fake money, and

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

32

appropriate toys. The therapist will need copies of sensory profile and PEM-CY
evaluation sheets. All calculations are done on an annual cost basis.

Contract with OTR for 10 hrs/week at $30/hour


$15,600.00
Extra 2hr/week for Recreational Therapist $16/hr
$1,664.00
Printing Get to Know Questionnaire (printing available)
$0
Purchase Adolescent/Adult Sensory Profile Forms (100 ct.) $214.40
Purchase Sensory Profile score sheet & forms (100 ct.)
$401.60
Pivotal response treatments for autism book/DVD (4 ct)
$204.00
Craft and activity supplies
$1,000.00

In Kind

Room for Group Sessions


Tables/Chairs
Utilities
Maintenance
Volunteers

$1,500.00
$550.00
$1,200.00
$1,200.00
$0.00

Expected Outcomes
The overall goal for this program is to provide occupational therapy services to
individuals with autism and families post diagnosis. The facility currently has no OT
services and they understand how vital this scope of practice is in outcomes for those
with autism. With this program in place parents will become more educated on how to
care for their child, while children will become more independent. Clients and their
families will feel more supported and have professional help.
Funding Options
Option 1. The Hearst Foundation provides grants to support nonprofit
organizations that provide services in the areas of education, health, culture, and social
service. Specifically, the foundation assists organizations that enable children, youth
and families to lead productive and independent lives including family support services,

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

33

and after-school programs (Hearst Foundation, 2016). The Hearst Foundation provided
grants ranging from $30,000-$750,000 in 2016.
Audit trail. Community of Science Funding Opportunities Advanced Search
Child-care; Grant title: Program Grants; URL: http://www.hearstfdn.org/applyingreporting/how-to-apply/; Hearst Foundation Funding Priorities:
http://www.hearstfdn.org/funding-priorities/
Option 2. ACT Today Autism Care and Treatment is a national nonprofit
organization. They provide assistance for children with autism and their families to
ensure they have a better tomorrow. Their mission is to facilitate treatment that is ongoing by giving referrals, funding and guidance to individuals with autism and their
family (ACT Today Autism Care and Treatment 2016.)
Audit trail. Google Search- autism funding; ACT Today URL: http://www.acttoday.org/index.php How to Apply for Funding http://www.act-today.org/act-today-grantprogram.php
Program Evaluation
The initial objective for this program is to give families more than a diagnosis and
provide them with starter tools to help themselves and their child. In order to get these
tools they must be in attendance at groups. The ASD Clinic receptionist will take role for
each group. This will help us track if families feel it is worth making time for their
children to come to groups.
Quantitative. A short survey will be given on session #1 to all patients who have
attended at least one session. This survey will have simple questions with a likert scale.
One being strongly disagree and 5 being strongly agree. The questions are listed below.

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT


1)
2)
3)
4)

34

My perceived needs were addressed in group.


The activities keep my child and I engaged and interested.
The staff is supportive and encouraging.
Overall, the groups are a worthwhile use of time.

Qualitative. The receptionist will make follow-up phone calls to those who complete
or discontinue coming to groups. Open-ended questions will be asked to determine
reason for termination. 1) What were your perceived needs coming into the group? 2)
How were your needs addressed through the group? 3) What needs do you feel were not
addressed by this group? 4) How could this group better meet those needs? 5) How has
this program prepared your child for life outside of group sessions?

Summary of Agency Reaction to Program Proposal


The program was presented to the social worker, receptionist, Doctor of
psychiatry, recreational therapist, and support staff in a meeting overseen by the director.
During this meeting I presented the program proposal in detail. Relaying the needs
analysis, the roles of staff members, session description with research to support it, and
emphasized the role of volunteer help. The staff participated well in the presentation and
was particularly interested in getting sensory regulation involved in treatment.
The director has reported that this program is just what their clinic is ready for at
this time and that getting it into play next semester is their goal. They hope that in the
future the part-time OT position will expand into full-time. They suggested getting OT
students involved by having their new hire occupational therapist having a fieldwork
student with them as often as allowed. This way they can care for more patients. I am in
the process of organizing this with Jeanette Koski at the University of Utah. They also

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT

35

emphasized the priority in recruiting students to be volunteers in sessions. They predict


this will be a simple task because of the interest students have on ASD.

References
ACT Today Autism Care and Treatment (2016) Retrieved December 4, 2016, from
Act-today.org website: http://www.act-today.org/act-today-grant-program.php
Bandura, A., & Walters, R. H. (1977). Social learning theory.
Brown, C., & Nicholson, R. (2011). Sensory Skills. In C. Brown & V. C. Stoffel (EDS.),
Occupational Therapy in Mental Health: A Vision for Participation (1st ed., pp.
280-297). Philadelphia: F. A. Davis Company.
CanChild Webinar (April 13, 2012): The Participation and Environment Measure for

Children and Youth (PEMCY) An innovative measure for home, school, and
community. Retrieved from: http://sites.tufts.edu/garybedell/files/2012/07/The
Participation-and-Environment-Measure-for-Children-and-Youth
PEMCY_CanChild-Webinar.pdf
Cdc.gov (n.d.) Autism Spectrum Disorder. Retrieved September 16, 2016, from
www.cdc.gov website: http://www.cdc.gov/ncbddd/autism/facts.html
Clifford, T., & Minnes, P. (2013). Logging on: Evaluating an online

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36

support group for parents of children with autism spectrum disorders. Journal of
autism and developmental disorders, 43(7), 1662-1675.
Clifford, T., & Minnes, P. (2013). Who participates in support groups for
parents of children with autism spectrum disorders? The role of beliefs and coping
style. Journal of Autism and Developmental Disorders, 43(1), 179-187.
Cohn, E. S., Kramer, J., Schub, J. A., & May-Benson, T. (2014).
Parents explanatory models and hopes for outcomes of occupational therapy
using a sensory integration approach. American Journal of Occupational Therapy,
68(4), 454-462.
Coster, W. J., Bedell, G., Law, M., Khetani, M. A., Teplicky, R., Liljenquist, K.,
Gleason, K., & Kao, Y. (2011). Psychometric evaluation of the Participation and
Environment Measure for Children and Youth (PEMCY). Developmental
Medicine and Child Neurology, 53(11), 10307.

Cramm, H., Krupa, T., Missiuna, C., Lysaght, R. M., & Parker, K. C.
(2013). Broadening the occupational therapy toolkit: An executive functioning
lens for occupational therapy with children and youth. American Journal of
Occupational Therapy, 67(6), e139-e147.
Ermer, J., & Dunn, W. (1998). The Sensory Profile: A discriminant analysis
of children with and without disabilities. American Journal of Occupational
Therapy, 52(4), 283-290.
Hanft, B. E. & Place A. P. (1996). The Consulting Therapist: A Guide for OTs and PTs
in Schools. San Antonio, Texas: Therapy Skills Builders.

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Healthcare.utah.edu (2016) Autism Spectrum Disorder Clinic & Neurobehavioral HOME


Program. Retrieved September 23, 2016) from
http://healthcare.utah.edu/uni/ho
Hearst Foundation (2016) Retrieved December 4, 2016, from www.heartfdn.org website:
http://www.hearstfdn.org/applying-reporting/how-to-apply/
Kuhaneck, H. M., Madonna, S., Novak, A., & Pearson, E. (2015). Effectiveness
of interventions for children with autism spectrum disorder and their parents: A
systematic review of family outcomes. American Journal of Occupational
Therapy, 69(5).
Kuhaneck, H. M., & Watling, R. (2015). Occupational Therapy: Meeting the Needs of
Families of People With Autism Spectrum Disorder. American Journal of
Occupational Therapy, 69(5).
Kozulin, A. (2003). Vygotsky's educational theory in cultural context. Cambridge
University Press.
Law M, Cooper B, Strong S, Stewart D, Rigby P, Letts L. (1996). The Person
Environment-Occupational Model: A transactive approach to occupational
performance. CJOT 63(1), 9-23.
Medicaid.utah.gov. (n.d.). Medicaid autism related services. Retrieved September 16,
2016, from https://medicaid.utah.gov Website:http://health.utah.gov/ltc/asd/
Neurobehavioral HOME, Healthcare.utah.edu (2016) Autism Spectrum Disorder Clinic
& Neurobehavioral HOME Program. Retrieved September 23, 2016 from
http://healthcare.utah.edu/uni/ho
Olson, L. (2009). Chapter 10. A frame of reference to enhance social participation. In

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Frames of reference for pediatric occupational therapy. (Third Edition). Kramer,


P., & Hinojosa, J., Eds. Philadelphia: Lippincott: Williams, & Wilkins
Steiner, A. M., Koegel, L. K., Koegel, R. L., & Ence, W. A. (2012). Issues
and theoretical constructs regarding parent education for autism spectrum
disorders. Journal of Autism and Developmental Disorders, 42(6), 1218-1227.
Tanner, K., Hand, B. N., OToole, G., & Lane, A. E. (2015). Effectiveness
of interventions to improve social participation, play, leisure, and restricted and
repetitive behaviors in people with autism spectrum disorder: A systematic
review. American Journal of Occupational Therapy, 69(5), 6905180010p16905180010p12.
Tomchek, S. D., Little, L. M., & Dunn, W. (2015). Sensory Pattern Contributions to
Developmental Performance in Children With Autism Spectrum Disorder.
American Journal of Occupational Therapy, 69(5).
Townsend, E., & Wilcock, A. A. (2004). Occupational Justice and Client-Centered
Practice: A Dialogue in Progress. Canadian Journal of Occupational Therapy,
71(2), 75-87.

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Figure 2 Survey Sample

ASD Clinic Survey


Thank you for taking part in this important survey as it will help us better understand your needs. This
survey is being administered on behalf of the development of an Occupational Therapy program for our
ASD Clinic. With your feedback we will be able to better serve you. Occupational therapy delves into the
daily tasks your child participates in, and helps identify the barriers that may be triggering unwanted
behavior. This survey will only take a few minutes of your time. All information gathered will remain
anonymous and will be used to develop a meaningful program suitable for you.
As a caregiver what are your biggest concerns for your child?
In what areas does your child need intervention? Select all that apply:
Bathing/showering (1)
Toileting (2)
Dressing (3)
Feeding (4)
Mobility/coordination (5)
Personal Hygiene (6)
Sleep (7)
Social Participation (8)
Play (9)
Schoolwork (10)
Job Skills (11)
Sensory Regulation (12)
Reading (13)
Pre-writing/Writing Skills (14)
Executive Function (make decision, plan, pay attention) (15)
Drag and drop the following options placing the most preferred class at the top and least at the bottom
______ Self-care (1)
______ Coordination/Gross Motor (2)
______ Sensory Regulation (3)
______ Social Participation (4)
______ Fine Motor/Writing Skills (5)
______ Executive Function (decision making) (6)
______ Other (7)

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT


Which of the following classes would you FEASIBLY attend if offered at Autism Spectrum Disorder
Clinic? Select all that apply:
Bathing/showering (1)
Toileting (2)
Dressing (3)
Feeding (4)
Mobility/coordination (5)
Personal Hygiene (6)
Sleep (7)
Social Participation (8)
Play (9)
Schoolwork (10)
Job Skills (11)
Sensory Regulation (12)
Reading (13)
Pre-writing/Writing Skills (14)
Executive Function (make decision, plan, pay attention) (15)
Other (16) ____________________
None (17)
What is the most effective way these skills could be delivered to your child?
At Home with professional (1)
Groups in clinic with professional (2)
Parent training & implementation (3)
One on one with professional (4)
Telehealth (over the phone or videophone) with professional (5)
Where are you most likely to attend these classes?
ASD Clinic (1)
At home (2)
At school or daycare (3)
Over the phone or videophone (4)
How frequently are you available to participate in these types of classes?
2-3 x a week (1)
1 x a week (2)
1 x a month (3)
2 x a month (4)
What time of day are you available to participate these classes?
Mornings (1)
Afternoons (2)
Evenings (3)
Which notification(s) do you prefer for upcoming sessions reminders?
Phone call (1)
Text message (2)
Email (3)
Appointment reminder card (4)
Flyer (5)
All notifications are equally effective (6)

40

AUTISM SPECTRUM DISORDER CLINIC PROGRAM DEVELOPMENT


Which would you prefer?
Out-of-clinic referrals to other healthcare professionals (1)
In-clinic treatment by healthcare professionals (2)
Would you be interested in having your child attend a developmental preschool?
Yes (1)
No (2)
Would you be interested in attending Caregiver Empowerment Courses during your child's therapy
sessions?
Yes (1)
No (2)
Answer If Would you be interested in attending Caregiver Empowerment Courses during your child's
therapy se... Yes Is Selected
What type of parent course would you prefer?
Small group led by social worker during my child's group session (1)
Parent only support group (2)
Telehealth resource (3)
Online parent support (4)
Other (5) ____________________
Would you be interested in an online parent support group?
Yes (1)
No (2)
What barriers would keep you from having your child participate in these additional services?
Time (1)
Money (2)
Convenience (3)
Other (4) ____________________
What are your child's diagnoses?
How old is your child?
2-4 (1)
5-7 (2)
8-10 (3)
11-13 (4)
14-16 (5)
17-19 (6)
20 or older (7)
What suggestions do you have for the ASD Clinic?

41

Figure 3 Data Report


Q1 - As a caregiver what are your biggest concerns for your child?

sensory disorder
yes
Her need for constant supervision, lack of independence, and aggression.
My biggest concern is being able to have my child become more independent and carry out adult tasks
and responsibilities.
I want him to be able to function as independently as he possible can and I want him to be able to get
and keep a job in the graphic design field, which is the area he's trained in. I want him to improve his
social skills in the community and at a job.
Social skills, having good friends and future successful transitions to adulthood
Behavior modification as a teen
Difficulty making and keeping friends, lack of impulse control (violence), needs help with self-care
skills,
raising a functional adult.

Q2 - In what areas does your child need intervention? Select all that apply:

Answer

Count

Bathing/showering

20.00%

Toileting

10.00%

Dressing

20.00%

Feeding

0.00%

Mobility/coordination

20.00%

Personal Hygiene

40.00%

Sleep

30.00%

Social Participation

90.00%

Play

20.00%

Schoolwork

40.00%

Job Skills

90.00%

Sensory Regulation

80.00%

Reading

30.00%

Pre-writing/Writing Skills

30.00%

Executive Function (make decision, plan, pay attention)

80.00%

100%

10

Total

Q3 - Drag and drop the following options placing the most preferred class at the top and least at the
bottom

Other: Activities of daily living i.e. shopping using money, using public transit

Q4 - Which of the following classes would you FEASIBLY attend if offered at Autism Spectrum
Disorder Clinic? Select all that apply:

Answer

Count

Bathing/showering

8.33%

Toileting

8.33%

Dressing

8.33%

Feeding

0.00%

Mobility/coordination

8.33%

Personal Hygiene

16.67%

Sleep

16.67%

Social Participation

66.67%

Play

16.67%

Schoolwork

33.33%

Job Skills

66.67%

Sensory Regulation

41.67%

Reading

25.00%

8.33%

66.67%

Other

0.00%

None

0.00%

Total

100%

12

Count

At Home with professional

20.00%

Groups in clinic with professional

20.00%

Parent training & implementation

10.00%

One on one with professional

40.00%

Telehealth (over the phone or videophone) with professional

10.00%

100%

10

Pre-writing/Writing Skills
Executive Function (make decision, plan, pay attention)

Q5 - What is the most effective way these skills could be delivered to your child?
Answer

Total
Q6 - Where are you most likely to attend these classes?

Answer

Count

ASD Clinic

72.73%

At home

18.18%

At school or daycare

0.00%

Over the phone or videophone

9.09%

Total

100%

11

Q7 - How frequently are you available to participate in these types of classes?


Answer

Count

9.09%

1 x a week

54.55%

1 x a month

18.18%

2 x a month

18.18%

100%

11

2-3 x a week

Total

Q8 - What time of day are you available to participate these classes?


Answer

Count

0.00%

Afternoons

45.45%

Evenings

54.55%

100%

11

Mornings

Total

Q9 - Which notification(s) do you prefer for upcoming sessions reminders?

Q10 - Which would you prefer?


Answer
Out-of-clinic referrals to other healthcare professionals

Count

0.00%

In-clinic treatment by healthcare professionals


Total

100.00%

10

100%

10

Q11 - Would you be interested in having your child attend a developmental preschool?
Answer

Count

Yes

10.00%

No

90.00%

100%

10

Total

Q12 - Would you be interested in attending Caregiver Empowerment Courses during your child's
therapy sessions?

Answer

Count

Yes

63.64%

No

36.36%

100%

11

Total
Q13 - What type of parent course would you prefer?
Answer

Count

Small group led by social worker during my child's group session

71.43%

Parent only support group

28.57%

Telehealth resource

0.00%

Online parent support

0.00%

Other

0.00%

Total

100%

Q14 - Would you be interested in an online parent support group?

Answer

Count

Yes

45.45%

No

54.55%

100%

11

Total

Q15 - What barriers would keep you from having your child participate in these additional services?

Q16 - What are your child's diagnoses?


What are your child's diagnoses?
asperger syndrome
brain injury
ASD, ADHD, Mood Disorder
ASD and depression
Autism
Autism Spectrum Disorder, ADD inattentive type, depression, anxiety
ASD
ASD, SPD, PDD-NOS
Autism, ADHD, Depression, Anxiety
Q17 - How old is your child?

Answer

Count

2-4

0.00%

5-7

10.00%

8-10

20.00%

11-13

0.00%

14-16

20.00%

17-19

20.00%

20 or older

30.00%

100%

10

Total

Q18 - What suggestions do you have for the ASD Clinic?


Adult social activities in the evenings or weekends might be good.
I think smaller sized social skills groups that pair participants closer within their age level would be
more beneficial. I also think that having the group meet at appropriate places outside the clinic is
helpful as well as having them take turns calling each other to give information, etc. I guess
personalizing the activities a little bit more would be great.
I love the idea of adding OT to your clinic!
Affordability

Figure 4.
Get To Know Your Questionnaire

Does your child have any allergies?


What chores or current job skills does your child need to develop?
What special interests or hobbies does your child enjoy?

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