Running head: LONG-TERM EFFECTS OF SIT IN YOUNG ADULTS

Evaluating the Long Term Effects of Sensory Integration Therapy Administered During Childhood in

Young Adults with Autism Spectrum Disorder

Kaysen Walker

Shayna Roberts

Katrina M. Smith

Melissa M. Zepeda

University of Utah Department of Occupational Therapy

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Introduction

Children with Autism Spectrum Disorder (ASD) commonly have difficulties processing sensory

input from their environment; this can result in symptoms that inhibit their quality of life (QOL) such as

extreme anxiety, distractibility, inflexible behaviors, repetitive verbalizations, social withdrawal, and

abnormal focused attention (Cheung & Siu, 2009). These sensory sensitivities are not limited to

childhood and continue to impact children as they transition into adolescence and adulthood (Clince,

Connolly, & Nolan, 2016). Research has demonstrated that children who receive sensory integration

therapy (SIT) show improvement in the previously mentioned areas and are able to achieve their

individual goals such as independence in ADLs and improved QOL (Case-Smith & Arbesman, 2008). This

occurs through repetitive exercises that help children who have trouble processing sensory information

experience and tolerate sensations in a more typical manner.

Life after high school is a turbulent time for most people, decisions must be made concerning

employment, continuing education, living situations and relationships. Adults with ASD must face all

these tough life decisions with difficulties characteristic of a diagnosis of ASD such as communication

deficits, difficulty with social interactions, and repetitive behaviors (Taylor & Seltzer, 2011). Due to the

spectrum nature of ASD, the range of life experiences for adults with Autism ranges greatly. While some

might stay in high school curriculum until age 22 and be cared for fully by parents, others may seek out

employment and live on their own. The sensory abnormalities seen with ASD greatly decrease an

individual's ability to make unscheduled transitions, operate in certain environments and form strong

social relationships with peers. All of these deficits would impede an individuals ability to take steps to

live independently.

Researchers postulate that the earlier a therapeutic intervention is implemented for a child with

ASD the more effective the intervention will be long-term, suggesting that addressing concerns earlier

could give them a greater QOL and potential for independence in young adulthood (Orinstein et al.,
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2014). While early introduction to therapy has positive short-term effects, there is a lack of research

done to show lasting effects into adulthood. Knowing that SIT improves the QOL in children, we are

interested in conducting a study to determine whether the QOL of those who received SIT as children

continue to see benefits in QOL in young adulthood. Results from these findings will be beneficial in

understanding whether or not the use of SIT should be implemented, not only for immediate

improvements in childhood, but also to produce long-term benefits that will last into adulthood.

Background

Sensory Integration Therapy

Sensory integration therapy has been used since the 1970s and was developed by A. Jean Ayres

to focus on the neurological processing of sensory information in children (Iwanaga et al., 2013). Change

occurs on a neurological level and helps children organize internal and external sensations to effectively

use their body within the environment (Foxx & Mulick, 2016). This process has been shown to increase

verbal expression and engagement in children with ASD (Preis & McKenna, 2014). Having increased

language ability, communication skills, and engagement in occupations could increase a child with ASDs

ability to participate functionally in a classroom later in life. It can also result in greater sensorimotor

skill, motor planning, socialization, attention, behavioral regulation, reading skills, active play

participation, gross motor skills, and self-esteem (May-Benson & Koomar, 2010).

Sensory Integration Therapy in Children

Children with sensorimotor impairments are often described as clumsy. They have difficulties

with balance and motor skills and they may appear unaware of their environment. The sensorimotor

system allows information from the environment to be processed and organized into a motor response

(Siaperas et al., 2011). Abnormalities in this system can lead to motor dysfunction, impaired verbal

expression, and the development of challenging behaviors which hinder a childs participation in school

activities, social activities, and activities of daily living.

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Sensory impairments are common in children with ASD. These children often have an

abnormality in at least one area of the sensorimotor system. Proprioception is especially difficult for

them, which can cause problems with motor control and social impairments (Siaperas et al., 2011).

Children with sensory processing difficulties can experience difficulties participating in school, social

activities, and independent activities of daily living.

Sensory integration therapy is a commonly used intervention to address these issues. This

intervention is interactive and facilitates taking in information, modulating and organizing the

information, and integrating the information for effective use in adaptive responses (Siaperas et al.,

2011). Through exposure in a very structured setting, children are able to experience sensation without

negative side effects. Repetitive exposure allows the their brain to adapt to the sensation so they can

use the sensory information effectively and participate in activities that provide sensory information

(Viel, Vaugoyeau, & Assiante, 2009).

Sensory Sensitivities in Adults

Abnormalities in sensory processing in individuals with ASD continue through the lifespan

(Crane, Goddard, & Pring, 2009). There is little evidence for using SIT on the adult population who have

ASD, even though 94% of adults with ASD display high levels of sensory processing abnormalities within

quadrants of the Adult Sensory Profile. A study on sensory processing patterns in young adults in higher

education showed that young adults with ASD have different sensory processing patterns than the

general population (Clince, Connolly, & Nolan, 2016). While these students can be successful in the

higher education environment, they may require accommodations for assistance. Their sensory

processing patterns can lead to difficulties maintaining social support, utilizing effective coping

strategies, and functioning in unfamiliar and stimulating environments (Clince, Connolly, & Nolan, 2016).

These difficulties can have major implications for academic and future success. The sensory processing

patterns in adults with ASD can also lead to specific behaviors that limit functionality.
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Sensory processing in adults can predict patterns of behavior. A study by Gonthier, Longupe,

and Bouvard (2016) found that there are four subprofiles of ASD in adults: oversensitivity,

undersensitivity, globally underesponsive, and limited sensory dysfunction. Subprofiles presented with

specific behavioral characteristics such as isolation seeking behaviors, irritability, aggression, apathy,

disinterest, and social interaction deficits. Across all subprofiles, participants displayed difficulties with

emotional regulation as well as building and maintaining relationships (Gonthier, Longupe, & Bouvard,

2016). This study shows how sensory processing influences an adults participation in a variety of

activities.

Quality of Life in Adults with ASD

Quality of life is a measure of life satisfaction, self-concept, health and functioning and

socioeconomic factors (AOTA, 2014). Adults with ASD can experience sensory processing difficulties that

impact employment, independent living, and social engagement (Bishop-Fitzpatrick et al., 2016). They

can also have elevated psychological problems (Hong et al., 2016). These factors along with lack of

physical activity accompanied with high rates of obesity and low levels of academic achievement can

lead to diminished QOL (Eaves & Ho, 2008). In order to capture the complexities of adult life for those

with ASD, it is necessary to look beyond the typical measures of QOL by including items such as physical

health, mental health, adequate living conditions, and development of supportive and fulfilling social

relationships (Bishop-Fitzpatrick et al., 2016).

Adulthood is a period in life when individuals begin to build autonomy and live independently

away from their family, which impacts their self-concept and QOL (Hong et al., 2016). Many adults with

ASD do not achieve the conventional markers of adulthood, such as supporting themselves, living

independently, and developing a social network (Bishop-Fitzpatrick et al., 2016). Failing to meet these

criteria can give the appearance of a poor quality of life. Quality of life reported from adults with ASD

was consistently predicted by level of perceived stress and instance of being bullied frequently (Hong et
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al., 2016). Utilizing sensory processing strategies learned in SIT can help adults with ASD to process

sensory input and regulate their state of being, which could potentially reduce stress, increase

occupational participation, and improve QOL.

Objective

The purpose of this study is to establish the need for sensory integration therapy given to

children with ASD in sustaining QOL through the lifespan. Current research concerning early

introduction of SIT and its effect on performance and satisfaction with ADLs and QOL in adults with ASD

is very limited. Further research into this connection could improve long-term outcomes for those with

ASD by increasing use of SIT therapy in childhood. We hypothesize that there will be a difference in

performance, satisfaction, and QOL between adults with ASD who have received SIT and those who

have not. We expect adults who received SIT as children will experience a higher level of performance,

satisfaction, and QOL. Future implications of our study would influence the early timing and type of

therapeutic services received by children with ASD, in order to provide them with better outcomes in

young adulthood.

Methods

Participants

We will be reviewing the records of 60 participants; 30 who received SIT in childhood (birth-

12yrs) and 30 who have never received SIT. Participants in this proposed study include young adults with

ASD who graduated from high school or completed their GED in the last 2-5 years. We are specifically

looking at young adults with ASD ages 18-25 to determine how a history of SIT impacts their

occupational performance, satisfaction, and QOL as they transition into adulthood. Our inclusion criteria

includes having a diagnosis of ASD based on medical records, completion of high school or GED

certificate within the past 2-5 years, history of receiving accommodations and services, between age 18-

25 and access to treatment history. Exclusion criteria includes people without ASD, people who are
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younger or older than desired population, those who do not have a matched control partner, those who

we do not have access to treatment records, those who did not give consent, and those that do not have

the cognitive ability to respond to questions asked in this study.

Research Design

The proposed study is a retrospective exploratory examination of young adults with ASD and

their reported levels of independence and quality of life. We will use both quantitative and qualitative

data in a mixed methods design to determine whether SIT given to children has beneficial long term

effects on occupational performance, satisfaction, and QOL for adults with ASD. Quantitative data will

come from a QOL measure Quality of Life Survey (QOLS), which is a 16-item questionnaire and

qualitative data will come from the Canadian Occupational Performance Measure (COPM), which is a

structured interview tool. The survey and the COPM will be given to either the participant or the

participants caregiver if necessary to gather information on each participants perceived QOL as well as

their reported occupational performance problems and satisfaction in order to measure long-term

outcomes of SIT therapy.

The independent variable in this study is history of receiving SIT. Dependent variables include

occupational performance, satisfaction, and QOL. Variables that could influence results include severity

of ASD, family support, and financial resources. In order to account for the variability in the ASD

spectrum the researchers have chosen to use a matched control design. We will use a matched control

design to pair participants together based on severity of symptoms associated with ASD with each pair

containing one individual who received SI as a child and one individual who did not to decrease the

likelihood of confounding factors.

Measures

We will be using the QOLS and the COPM to measure occupational performance, satisfaction,

and QOL. The quality of life scale will provide a quantitative measure of the participants QOL which will
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allow us to compare the participants who have a history of receiving SIT to those who have not received

SIT. The COPM will give us qualitative information regarding life satisfaction and independence to

further explore how SIT may have long lasting impacts in the life of adults with ASD. The QOLS is

provided in the Appendix.

QOLS. The QOLS is made up of 16 questions and is a valid instrument to measure the quality of

life across patient groups and cultures. The participants rate different aspects of their life on a 7-point

Likert scale from 7-Delighted to 1-Terrible. Examples of aspects rated include relationships, learning,

work, and independence. The total score is obtained by adding up each of the items. If the participant

does not engage in a particular activity, they are still encouraged to select a level of satisfaction.

(Burckhardt & Anderson, 2003). (See Appendix)

COPM. We will administer the COPM to the participants or the caregivers if necessary, to

measure occupational performance and satisfaction in life occupations. There are three areas of

occupation listed: self-care, productivity, and leisure with three subheadings under each (at least nine

potential items). Participants rank the items importance in his or her life on a scale of 1=not important

at all to 10=extremely important. Clients are asked to identify five occupational performance problems

then rank their performance on a scale of 1=not able to do it at all to 10=able to do it extremely well.

Participants also rank their satisfaction on a scale from 1=not satisfied at all to 10=extremely satisfied.

These scores are used to better understand their perspective on participation and performance in life

occupations.

Procedure

We will recruit participants by requesting contact information of students who had a diagnosis

of ASD and attended high school within the last 2-5 years from their school district. All school districts in

Salt Lake City will be included in our recruitment process. There will be an opt out period where former

students can choose to deny us access to their records. After this period we will collect records and
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contact students and parents to determine our participants by collecting any additional records from

outside therapy services. Once participants are determined and matched based on severity of ASD, we

will administer the QOLS and the COPM (Dedding, Cardol, Eyssen, Dekker & Beelen, 2003) to obtain

study measurements.

Procedures include: (1) Collect data from all school districts in Salt Lake City on students who

have completed high school in the last five years and received accommodations and services through

the school district, (2) select participants based on a diagnosis of ASD and history of SIT, (3) match

participants with a student from the control group of similar severity of ASD, school attended and

whether or not they received outside therapy services, (4) administer the COPM and QOLS to

participants in both groups, and (5) analyze data collected. We plan to analyze data by comparing results

between results of the SIT group against the control group using an independent samples t-test because

there are two independent variables (SIT, control) with three dependent variables (performance,

satisfaction, QOL).

Human Participants Protection. University of Utah Institutional Review Board (IRB) approval will

be obtained prior to beginning this project. This study contains little potential for harm because it is a

retrospective design. There is no threat to physical safety and if participants feel any emotional

vulnerability at any time they can request to either move on to the next question or be removed from

the study.

Data Analysis Plan

We will be comparing the SIT group with the control group to determine the differences in

occupational performance, satisfaction, and QOL between the two groups. We will be running an

independent samples t-test with no follow up to compare measures of central tendency between

groups. This will help us determine where the significant effects are. In order to analyze qualitative data

each of the four researchers will code COPM interviews to identify common themes within the two
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groups, which will help us identify areas that receiving SIT as children may impact life in adulthood.

These results will be compared between researchers in order to ensure inter-rater reliability.
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Appendix