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IAN Research Findings: Occupational Therapy

February 13, 2008


The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASDs) from throughout the United States, reports on the use of occupational therapy. How many families are using occupational therapy, or related sensory-based interventions, like sensory integration (SI) therapy, weighted vests, brushing techniques, or deep pressure, to treat their children? How difficult is it for families to obtain these treatments, and to what extent do families feel they have been helpful?

IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.

Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted over the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.

We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact

researchteam@ianproject.org.



Occupational Therapy: How Does it Help Children with ASD?

Occupational therapy (OT) is a health profession that helps individuals with various disabilities achieve functional participation in activities of daily living such as play and self-care.

Occupational therapists working in a pediatric setting are concerned with evaluating and treating a variety of skills that impact a child's ability to function and learn. These include:

  • Gross Motor Skills, which relate to movement of the large muscles in the arms, legs, and trunk, and are needed for activities like running, climbing, jumping, or riding a tricycle.
  • Fine Motor Skills, which pertain to movement and dexterity of the small muscles in the hands and fingers, and are needed for activities like picking up small objects, holding utensils, or buttoning a shirt.
  • Visual Motor Skills, which relate to an individual's movement based on the perception of visual information, and are needed to color within the lines or catch a ball.
  • Handwriting Skills, which involve writing fluidity, letter formation, letter sizing, letter alignment, and letter/word spacing.
  • Self-Care Skills, which include daily dressing, feeding, and toileting tasks.
  • Oral Motor Skills, which involve the movement of muscles in the mouth, lips, tongue, and jaw to permit sucking, biting, crunching, chewing, and licking.
  • Sensory Integration, which involves the ability to take in, sort out, and respond to the sensory information we receive from the environment, and is especially important in individuals who are under- or over-sensitive to sound, light, touch, noise, etc.
  • Motor Planning Skills, which involve the ability to plan, implement, and sequence motor tasks such as riding a bike, kicking a rolling ball, or climbing monkey bars.
  • Neuromotor Skills, which involve the underlying building blocks of muscle strength, muscle tone, and posture.

Many children with autism receive occupational therapy services to enhance motor skill development as well as to address sensory integration issues. For example, a therapist might assist a child in developing mature grasp patterns so that the child can hold a utensil to feed him- or herself. A therapist might also incorporate sensory integration theory into treatment to assist the child in decreasing sensory-avoiding behaviors (like avoidance of brushing his or her teeth or hair), sensory sensitivities (such as sensitivities to certain fabrics or food textures), and sensory-seeking behaviors (like seeking movement input by constantly spinning, pacing, or rocking). Addressing such issues will help the child self-regulate so that he or she is able to function and learn at school.

Occupational therapy uses purposeful activities to enhance and encourage skill development. Guided by the child's interests, the therapist provides fun and motivating activities that aim to provide a “just-right challenge” so that the child will develop the underlying skills needed to effectively complete meaningful tasks. When skill and strength cannot be developed or improved, occupational therapy offers creative modifications and adaptations for carrying out age-appropriate activities.

In the section that follows, we share the experiences of families participating in IAN with regard to occupational therapy.


IAN Families and Occupational Therapy

Families participating in IAN Research have the opportunity to list all autism treatments they use, and to rate these. In a grouped ranking of treatments -- in which each medication, for example, does not stand alone but is grouped with all others under “Prescription Medications”-- occupational therapy is the third most popular treatment. In addition, interventions directed toward sensory integration, which are often provided by occupational therapists, hold fifth place. Such interventions include, in order of use, SI therapy, weighted blankets or vests, deep-pressure therapy, and brushing techniques. (See Table 1.)


Table 1. Top Treatments and Therapies Used by IAN Families (Group Ranking)

RANK TREATMENTS AND THERAPIES GROUPED BY CATEGORY
1 Prescription Medications
2 Speech and Language Therapy
3
Occupational Therapy (OT)
4 Applied Behavior Analysis (ABA) and Related Therapies
5
Treatment for Sensory Integration Dysfunction
(includes sensory integration therapy, use of weighted blankets or vests, deep-pressure therapy, and brushing techniques)
6 Casein/Dairy-free and/or Gluten-free Diet
7 Social Skills Group
8 Picture Exchange Communication System (PECS)
9 Visual Schedules
10 Essential Fatty Acids
11 Physical Therapy (PT)
12 Social Stories
13 Greenspan -- Floortime/Developmental Individual Differences Relationship-Based Approach (DIR)
14 Melatonin
15 Probiotics



Most of the sensory techniques are directed toward providing additional sensory input that, according to SI theory, will help a child whose senses do not register internal and external sensory information properly. For example, a weighted vest or blanket -- which is a garment or blanket designed to be extra heavy -- is believed to relieve a craving for deep pressure often expressed by people on the autism spectrum, and to help them self-regulate.

There are nearly 2,400 IAN families using occupational therapy. Of these, 64% report using OT alone while 36% report using at least one sensory integration technique as part of OT. In addition, 200 families report using one or more of the sensory integration techniques without mentioning OT at all. Families may think of these therapies and how they overlap in different ways, but one thing is clear. This entire class of interventions is frequently used by families of children on the autism spectrum.

Who first recommends occupational therapy to families? This varies quite a lot, although in about a third of the cases the recommendation is made by a team of professionals, presumably in clinics, schools, or early childhood programs. Interestingly enough, occupational therapists are the first professional to tell a family about OT only 13% of the time. It may be that families do not come in contact with an occupational therapist until after the treatment is recommended by others, most likely those involved in making a diagnosis and setting up an initial treatment program.


Obtaining Occupational Therapy

Occupational therapy is an intervention mandated by the Individuals with Disabilities Education Act [i] with the explicit aim of helping children with motor difficulties. (Sensory issues are not specifically mentioned.) It is likely for this reason that many parents say they have encountered few barriers when trying to obtain the therapy. Nevertheless, 21% report they had to quit their job or reduce hours to transport their child to OT, while 18% report they needed to switch schools to obtain the therapy. Those who have used SI therapy report similar experiences. (See Table 2.) This represents a slightly higher burden than that reported by parents for speech and language therapy. (To get speech therapy, 16% placed their child in a different school and 18% quit their job or reduced work hours.)


Table 2. Actions Taken to Obtain Occupational or Sensory Integration Therapy

Extra Action to Obtain Therapy

Percentage of Families Who Did This to
Obtain OT

Percentage of Families Who Did This to Obtain SI

Move to another state 9% 7%
Move within a state to another county 9% 8%
Enroll in a research study 8% 6%
Travel more than 100 miles to see a professional or therapist 9% 9%
Pursue legal action 10% 8%
Go to a new doctor or specialist 14% 15%
Place child in a different school 18% 17%
Quit job or reduce hours to take child to therapy or do treatment at home 21% 24%




Funding the Therapy

When families decide to include occupational therapy as part of their child's treatment program, what financial burden do they face? Of those who answered questions about the cost of this therapy, 73% report obtaining it at no cost, while the remaining 27% report paying some portion of the expense. Of those who do pay something, the majority pays either $51 to $100 per month (28%) or $101 to $500 per month (44%).

How do so many families obtain this therapy at no cost? As with speech and language therapy, many receive OT via an early childhood program or a public school. (See Figure 1.)

Figure 1.



As might be expected, 87% of those who report receiving occupational therapy at no cost receive it via a publicly funded program. In addition, 46% of families who pay something for occupational therapy also receive it through a publicly funded program. Because motor and sensory issues are often major challenges for children on the autism spectrum, it may be that parents are seeking out occupational therapy services beyond those that early childhood programs or school systems provide.

Fifty-seven percent of families report that health insurance does not cover any portion of their children's occupational therapy cost. Of the 43% who do receive assistance, 23% have private insurance only; 11% receive Medicaid; and 9% have used both private and Medicaid insurance to pay for OT.


Hopes and Results

As a child begins this therapy, where do parents hope to see improvement? How optimistic do parents feel? As treatment progresses, are their expectations for their child's progress met?

We examined parent responses regarding both occupational therapy and sensory integration therapy to answer these questions. Our results are summarized in Table 3.


Table 3. OT and SI: Expectations and Experience

Occupational Therapy Sensory Integration Therapy
Intervention Targets:
Where did parents hope to see improvement?
72% -- Executive Function
66% -- Social Interaction
64% -- Stereotypical Behaviors
63% -- Neurological Issues
54% -- Maladaptive Behaviors
53% -- Communication
81% -- Maladaptive Behaviors
80% -- Stereotypical Behaviors
79% -- Neurological Issues
77% -- Executive Function
66% -- Social Interaction
55% -- Communication
Expectations:
Before beginning treatment, how much faith did parents have that the therapy would work?
1% -- Expected no improvement
16% -- Expected minimal improvement
49% -- Expected a moderate level of improvement
34% -- Expected a high or very high level of improvement
2% -- Expected no improvement
30% -- Expected minimal improvement
45% -- Expected a moderate level of improvement
23% -- Expected a high or very high level of improvement
Experience:
How did parents rate the therapy's effectiveness?
88% -- Symptoms improved
11% -- No change in symptoms
1% -- Symptoms worsened

Of those who said their child improved:

16% -- Reported a minimal level of improvement
49% -- Reported a moderate level of improvement
35% -- Reported a high or very high level of improvement

89% -- Symptoms improved
10% -- No change in symptoms
1% -- Symptoms worsened

Of those who said their child improved:

14% -- Reported a minimal level of improvement
51% -- Reported a moderate level of improvement
35% -- Reported a high or very high level of improvement



Parents hoped occupational therapy would alleviate a variety of autistic symptoms, including executive function issues, impaired social interaction, and stereotypical behaviors. The targets of sensory integration therapy specifically were somewhat different, with 81% of parents hoping for improvement in maladaptive behaviors (like tantrums). This wide range of targeted symptoms makes sense when you consider the diversity of issues OT and SI together are intended to address.

From the IAN data, it is clear that parents place great hope in these therapies at the outset, with 49% expecting a moderate level of improvement, and 34% expecting a high or very high level of improvement, when starting occupational therapy. When starting sensory integration therapy, these percentages are slightly lower, with 45% expecting a moderate level of improvement, and only 23% expecting a high or very high level of improvement. Why the difference between the two? We do not know for sure, but suspect it may be because sensory integration is sometimes a difficult concept to grasp. It may make less intuitive sense to parents at first than the notion of “occupational therapy” in general.

After a child begins therapy, most parents are pleased with the results. The vast majority (88% in the case of occupational therapy; 89% in the case of sensory integration therapy) reports definite improvement in their child's skills.

Occupational therapy, together with related sensory integration techniques, is clearly in wide use by families of children on the autism spectrum. Its popularity is likely because of its availability in schools and early childhood programs, the fact that it is often publicly funded, the variety of impairing symptoms it targets, and families' high level of satisfaction with the results.

Stay tuned for additional IAN Research findings on a variety of autism treatments.



To Share Your Thoughts About These Findings…

If you have comments and insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum under “IAN Research Findings” and then under “Treatments – 2008.” (Link: www.IANcommunity.org/cs/discussion) Your feedback may influence future research.

(Any member of the public may view these discussions, but to post, you must join IAN Community. Go to www.iancommunity.org and click “Join IAN.”)


What Is IAN?

The primary goal of the Interactive Autism Network is to accelerate the pace of autism research. Families affected by autism answer questionnaires over the Internet, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. The IAN Community (www.iancommunity.org), meanwhile, provides evidence-based basic information on autism spectrum disorders, articles by leading researchers in the field, and reports on IAN's latest findings.

To learn more about the IAN Project, please go to www.ianproject.org.
To join IAN Research, please go to www.ianresearch.org.



[1] National Research Council. (2001).Educating children with autism. Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press, pp. 138-139.