IAN Research Findings: Speech and Language Therapy

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 speech and language therapy. How many families are using speech and language therapy? To what extent do they receive it through the schools or early intervention programs, and to what extent does private insurance or Medicaid cover it? How easy or difficult was it to obtain the therapy, and how well did it meet their children's needs?

IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.
Please Note: These Findings Are PreliminaryThe 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 The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication.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.
Speech and Language Therapy: A Key Intervention for Individuals with ASD
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. [i] 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 articulators/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. In the section that follows, we share the experience of families participating in IAN with regard to this crucial intervention.IAN Families and Speech and Language TherapyFamilies participating in IAN Research have the opportunity to list all autism treatments they use, and to rate these. The IAN Research team then ranks all the treatments 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.) When ranking treatments used by IAN families this way, speech and language therapy holds first place.
Table 1. Top Treatments and Therapies Used by IAN Families(Individual Ranking)
RANK
INDIVIDUAL TREATMENTS AND THERAPIES
1
Speech and Language Therapy
2
Occupational Therapy (OT)
3
Applied Behavior Analysis (ABA)
4
Social Skills Groups
5
Picture Exchange Communication System (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.” In this grouped ranking of treatments used by IAN families, speech and language therapy is only second from the top. (See Table 2.) Table 2. Top Treatments and Therapies Used by IAN Families (Group Ranking)
RANK
TREATMENTS AND THERAPIESGROUPED 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
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
Who recommends speech and language therapy to families varies. Most commonly, this recommendation is made by a team of professionals (30%), a pediatrician (19%), or a speech-language pathologist (15%).
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 the Individuals with Disabilities Education Act. (See Table 3.)Table 3. Actions Taken to Obtain Speech and Language Therapy
Extra Action to Obtain Speech and Language Therapy
Percentage of Families Who Did This
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%
Place 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% reported obtaining it at no cost, while the remaining 26% reported 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 1.)
Figure 1.
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. Those who report improvement are enthusiastic in their support, with only 15% reporting minimal improvement and all the rest reporting a moderate (38%), high (32%), or very high (15%) level of improvement. 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.
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.