Date First Published: February 15, 2008
With special thanks to Teresa Anderson, OTR/L, Senior Occupational Therapist of the Center for Autism and Related Disorders at the Kennedy Krieger Institute, for her contribution to this article.
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?
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:
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 Used by IAN Families
Group Ranking
| Rank | Treatment |
| 1. | Prescription Medications |
| 2 | Speech and Language Therapy |
| 3. | Occupational Therapy (OT) |
| 4. | Applied Behavior Analysis (ABA) |
| 5. | Treatment for Sensory Integration Dysfunction (includes sensory integration therapy, use of weighted blankets or vests, deep-pressure therapy, and brushing techniques) |
| 6. | Casein-free Diet and/or Gluten-free Diet |
| 7. | Social Skills Group |
| 8. | Picture Exchange Communication Systems (PECS) |
| 9. | Vsual 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 with the explicit aim of helping children with motor difficulties. (Sensory issues are not specifically mentioned.) 1 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 Taken 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% | |
| 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.
| ... | 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 |
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 |
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.
(Please note: the information reported here reflects only parents’ evaluation of current treatments. Because any treatment a child is currently receiving must be considered worthwhile by parents, we expect ratings to be fairly high at this point. As data is collected over time, and families can report on treatments they have dropped, there will likely be more negative reports.)
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.
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASDs. 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.