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IAN Research Report #5: Autism Treatment Overview - February 2008

Date Published: 
February 26, 2008

Contents

Introduction

The Interactive Autism Network (IAN) is an online database collecting information from families of children with autism spectrum disorder (ASD) from throughout the United States. Since our launch in April 2007 more than 21,000 individuals -- including children with ASD, their parents, and their siblings -- have registered to participate. Our mission is to accelerate autism research by sharing this rich collection of data with researchers around the world at no cost. In addition, we help U.S. researchers to recruit participants for their own, local studies.

To thank the families participating in IAN for their time, energy, and enthusiasm, we periodically report on what we are learning from the information they share. In this issue, we present what treatments families of children with ASD are using, as well as an in-depth report on one of those at the top of the list: speech and language therapy. We also update the IAN Weight and Height findings, focusing in on which children with ASD tend to be taller or heavier than typical peers.

A special thank-you to each and every parent who has sat in front of his or her computer and taken precious free time to help advance autism research. Your contribution is very much appreciated.

Autism Treatment Overview: The Great Experiment

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments...trying to find a combination that keeps their child calm, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment.

By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision makers prioritizing which not-yet-proven treatments to study.

IAN: Tracking Treatments Families Are Using Now

Families participating in IAN Research have the opportunity to list all autism treatments they use, and to rate these. They also can note how much each treatment costs and whether they had to go to extraordinary lengths to get it. Did they have to switch schools or doctors? Drive more than 100 miles? Enroll in a research study? Take legal action?

We still have a great deal of data to analyze, but we now present the basic information collected so far.

IAN families, all together, are utilizing more than 300 different autism treatments. The average number of simultaneous treatments that children with ASD participating in IAN receive is five, although more than half receive four or fewer. (See Figure 1.) About 5% of children currently receive no treatment at all, while others receive dozens. (The child with the most concurrent treatments is on 56!)

Figure 1.
Bar chart shows number of simultaneous treatments children with ASD receive

The IAN Research team ranks all the treatments families report in two different ways. The first time, each individual treatment is ranked, so that every separate medication, vitamin, diet, or other intervention stands on its own. (See Table 1.)

Table 1. Top Treatments Used
by IAN Families
Rank Treatment
1
Speech and Language Therapy
2
Occupational Therapy (OT)
3
Applied Behavior Analysis (ABA)
4
Social Skills Groups
5
Picture Exchange Communication Systems (PECS)
6
Sensory Integration Therapy
7
Visual Schedules
8
Physical Therapy (PT)
9
Social Stories
10
Casein-free Diet
11
Gluten-free Diet
12
Weighted Blanket or Vest
13
Risperdal
14
Melatonin
15
Probiotics

Next, treatments of a similar type or class are grouped together before being ranked. For example, Risperdal and Ritalin no longer appear separately, but are included with all other drugs under "Prescription Medications." (See Table 2.)

Table 2. 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) 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 Systems (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

We plan to report in detail on many of the treatments most commonly used by families. First in our series: speech and language therapy.

Treatment Report: Speech and Language Therapy

With thanks to Jennifer S. Pannone, M.S., CCC-SLP, of the Center for Autism and Related Disorders at the Kennedy Krieger Institute, for her contribution to this article.

Speech and language therapy is the treatment most often used by IAN families when treatments are ranked individually, and holds second place even when treatments are grouped into categories.

What is speech and language therapy? What has the experience of IAN families been with regard to this common intervention?

Background: What Is Speech and Language Therapy?

Speech and language therapy, considered an essential intervention for any child with speech and language deficits, is mandated by the Individuals with Disabilities Education Act (IDEA). 1  It is generally provided by a speech-language pathologist (SLP) -- a professional expert in communication and social development. This person does much more than help a child learn to form words. The field of speech-language pathology is concerned with the study of communication, disorders of communication, and assessment and treatment of these disorders. The following are areas targeted by an SLP:

 

• Articulation/Phonology (movement of muscles used to produce speech/production of speech sounds)
• Morphology (grammatical rules)
• Syntax (sentence structure)
• Semantics (language content/meaning)
• Pragmatics (social use of language)
• Fluency (flowing, effortless speech)
• Prosody (variations in pitch, volume, and rate of speech)

A large percentage of people with autism do not use language functionally, that is, to communicate basic needs and wants. Even those who can speak will likely have difficulties with the pragmatic, or social, use of language, which includes understanding social cues, using appropriate conversational rules, and understanding age-appropriate humor. Whether a child is nonverbal or has a large vocabulary, has cognitive delays or has above-average intelligence, speech and language therapy can be a valuable piece of the therapeutic puzzle.

The setting for speech and language therapy will likely change as a child ages. Clinical services, school-based services, social skills groups with peers, and community training all may be part of the spectrum of therapy over time.

IAN Families' Experience

More than 2,000 IAN families have reported on their experience with speech and language therapy: how easy or difficult it was to obtain, how much it cost, and how well it worked.

 

Obtaining the Therapy
One of the positive aspects of speech and language therapy is that most parents find it relatively easy to obtain. Gaining access to some therapies requires a Herculean effort, but this did not seem to be the case for speech and language therapy, probably because it is an intervention mandated by IDEA. (See Table 3.)

Table 3. Action Taken to Obtain
Speech and Language Therapy
Extra Action Taken to Obtain Therapy
Number of Families Who Took this Action
Move to another state
5%
Move within a state to another county
5%
Enroll in a research study
5%
Travel more than 100 miles to see a professional or therapist
6%
Pursue legal action
7%
Go to a new doctor or specialist
12%
Put child in a different school
16%
Quit job or reduce hours to take child to therapy or do treatment at home
18%

The action taken most often to make speech therapy possible was "quitting job (or significantly reducing hours) to take child to therapy or arrange treatment at home." Still, only 18% of families say they have taken such action. This compares with 31% of families who are using, for example, an intensive therapy like applied behavior analysis (ABA).

Funding the Therapy
What financial burden does providing speech and language therapy for their children with ASD place on families? Of those who answered questions about the cost of this therapy, 74% report obtaining it at no cost, while the remaining 26% report paying some portion of the expense. Of those who do pay something, more than half pay between $100 and $500 a month; overall, some pay as little as $1 and others pay in excess of $2,000.

How do so many families obtain this therapy at no cost? Many receive the therapy via an early childhood program or a public school. (See Figure 2.)

Figure 2.
Pie chart shows public funding for speech and language therapy for children with ASD

As might be expected, 91% of those who report receiving this therapy at no cost receive it via a publicly funded program. In addition, 53% of families who pay something for speech and language therapy also receive it through a publicly funded program. It may be that some parents, considering language a crucial part of their child's ability to progress, seek out additional speech therapy beyond that offered by schools or early intervention programs.

Does health insurance help parents pay for speech therapy for their child? Not often. Such costs are covered to some extent by private insurance or Medicaid in only 37% of families (19% have private insurance; 11% have Medicaid; and 7% have both). The remaining 63% of families report no insurance coverage for speech therapy costs.

Hopes and Results
As a child begins this therapy, how optimistic do parents feel? As treatment progresses, are their expectations for their child's progress met?

Parents are hopeful at the outset, with 90% expecting at least a moderate level of improvement in their child's communication and social interaction. Similarly, 90% report definite improvement in their child's skills. Of all parents rating their child's progress due to speech and language therapy, 42% reported a high or very high level of improvement. This compares to only 30% of parents reporting a high or very high level of improvement for all other current treatments being used by IAN families.

(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.)

The data make it clear that there are several reasons that speech and language therapy is in use by more than 2,000 of the families participating in IAN:

  • It addresses key concerns in autism, including the ability to communicate and to interact socially.
  • Fully 99% of parents feel that the therapy involves no, or very little, risk.
  • Nearly 73% of parents feel that carrying out the therapy involves no, or very little, burden or difficulty.
  • 81% of families receive at least some public funding for the therapy.
  • 90% of families expected it to have a positive effect at the outset.
  • 90% feel that it has alleviated their child's symptoms or improved his or her skills.

Keep an eye out for future reports on a variety of autism treatments!

Weight and Height Update

In our December '07 research report, we shared preliminary findings on the IAN weight and height data. These data were collected during the autumn of 2007 via the IAN Weight and Height Questionnaire, which was completed by more than 2,000 families in the space of four weeks. (If you missed it, don't worry. The Weight and Height Questionnaire will be re-issued periodically, to track children's growth as well as to capture data from children who did not participate the first time.)

In our initial report, we stated we had found that children with ASD were taller and heavier than unaffected siblings. We have now conducted additional analyses, exploring whether this is true across all age ranges, and whether the same picture emerges for girls and for boys.

We can now report:

Only Younger Children with ASD Are Taller than Unaffected Siblings

It is only very young children, aged 3 to 6, who are taller than unaffected siblings in the same age group. This holds true for both boys and girls. It does not hold true for older children of either gender. A total of 20% of boys with ASD, aged 3 to 6, are above the 95th percentile for height. This compares with only 16% of male siblings in the same age range.  Furthermore, while 16% of unaffected male siblings are in the "small" category (less than or equal to the 5th percentile for height), only 5% of boys with ASD are in that category. (See Tables 4 and 5.)

Table 4. Height: Affected vs. Unaffected Boys, Aged 3-6
 

Boys with ASD
(n=408)

Unaffected Male Siblings
(n=116)

Very Short *
5.4%
16.4%
Normal Height
74.5%
67.2%
Very Tall *
20.1%
16.4%

 

Table 5. Height: Affected vs. Unaffected Girls, Aged 3-6
 

Girls with ASD
(n=83) 

Unaffected Female Siblings
(n=154)

Very Short *
3.6%
15.6%
Normal Height
79.5%
71.4%
Very Tall *
16.9%
13.0%
 

*Note: Very Short is defined as less than or equal to the 5th percentile for height (similar to a pediatrician's growth charts); Very Tall is defined as more than the 95th percentile for height.

This is particularly interesting in light of other recent research that finds early accelerated growth of either body length or head circumference in children with ASD. 2,3,4

(Please note: the IAN Project did not collect weight and height data on infants or toddlers under age 3, so we do not know if  the children with ASD in this category were taller/longer than their siblings.)

Only Older Children with ASD Are Heavier than Unaffected Siblings

Children with ASD aged 6 to 18 tend to be heavier for their age, relative to height, than unaffected siblings. When we calculated and compared body mass index (BMI) separately for boys and girls in different age groups, we found that there was little difference between affected and unaffected children in the 3-to-6-year-old age group, regardless of gender. Older boys with ASD, aged 6 to 18, had a definite tendency to have a very high BMI compared with unaffected male siblings of the same age. Older girls showed a similar tendency to higher BMIs, although the difference was less striking than for boys, and only reached statistical significance for girls aged 12 to 18. (See Tables 6 and 7.)

Table 6. Body Mass Index: Affected vs. Unaffected Boys, Aged 12-18
 

Boys with ASD
(n=295)

Unaffected Male Siblings
(n=133)

Underweight **
8.1%
5.3%
Normal Weight
 
49.8%
64.7%
At Risk for Overweight **
15.9%
18.8%
Overweight **
26.1%
11.3%

 

Table 7. Body Mass Index: Affected vs. Unaffected Girls, Aged 12-18
 

Girls with ASD
(n=45) 

Unaffected Female Siblings
(n=149)

Underweight **
6.7%
6.7%
Normal Weight
42.2%
65.8%
At Risk for Overweight **
24.4%
12.1%
Overweight **
26.7%
15.4%

**Note: Underweight is defined as less than the 5th percentile for BMI; At Risk for Overweight is defined as between the 85th and 95th percentiles for BMI; and Overweight is defined as over the 95th percentile for BMI.

 

For More Research Findings and Features on ASD...

Read these articles recently published here, at IAN Community:

Spread the Word About IAN

Please remember: we have still reached relatively few of the families impacted by ASDs in the United States. You can help! Spread the word about IAN to families and the professionals who work with them.

View the IAN brochure (pdf) and order free brochures to share.

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.

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

 

References

  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. 
  2. Van Daalen, E., Swinkels, S.H., Dietz, C., van Engeland, H., & Buitelaar, J.K. (2007). Body length and head growth in the first year of life in autism. Pediatric Neurology, 37(5), 324-330.  View Abstract
  3. Webb, S.J., Nalty, T., Munson, J., Brock, C., Abbott, R., & Dawson, G. (2007). Rate of head circumference growth as a function of autism diagnosis and history of autistic regression. Journal of Child Neurology, 10, 1182-1190.  View Abstract
  4. Lainhart, J.E., Bigler, E.D., Bocian, M., Coon, H. Dinh, E., Dawson, G., Deutsch, C.K., et al. (2006). Head circumference and height in autism: A study by the Collaborative Program of Excellence in Autism. American Journal of Medical Genetics A, 140(21), 2257-2274.  View Abstract

 

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