J Autism Dev Disord (2011) 41:1373–1382
DOI 10.1007/s10803-010-1164-y
ORIGINAL PAPER
Treatments for Autism: Parental Choices and Perceptions
of Change
Anne Bowker • Nadia M. D’Angelo •
Robin Hicks • Kerry Wells
Published online: 16 December 2010
Ó Springer Science+Business Media, LLC 2010
Abstract Empirically conducted studies of the efficacy of
various treatments for autism are limited, which leaves
parents with little evidence on which to base their treat-
ment decisions (Kasari, Journal of Autism and Develop-
mental Disorders, 32: 447–461, 2002). The purpose of this
study was to examine the types of treatments in current use
by families of children with ASD. In addition, parents’
perceptions of improvement in their child’s functioning
were explored. Through an online survey, a sample of 970
parents of ASD children reported on the treatments cur-
rently in use, those discontinued, and reasons for discon-
tinuation. Results indicate that most families adopt
multiple treatment approaches. Parents were most likely to
discontinue non-evidence based treatments when they did
not see improvement in their child’s functioning.
Keywords Autism
Treatment
Parent perception
A. Bowker (&)
N. M. D’Angelo
Department of Psychology, Carleton University,
1125 Colonel By Drive, Ottawa, ON K1S 5B6, Canada
e-mail: abowker@connect.carleton.ca
N. M. D’Angelo
e-mail: ndangelo@connect.carleton.ca
R. Hicks
Autism and Behavioural Science Program, St. Lawrence
College, Kingston, ON, Canada
e-mail: rhicks@sl.on.ca
K. Wells
Department of Psychology, York University, Toronto,
ON, Canada
e-mail: kwells@yorku.ca
Introduction
Autism is a neurodevelopmental disorder that is enduring
for 90% of individuals, and affects all aspects of func-
tioning (Smith 1999; Tidmarsh and Volkmar 2003).
Diagnosis of autism is based on impairment in three critical
areas: social interaction, communication, and behaviour.
Delays or abnormal functioning in at least one of these
areas must be present before 3 years of age (American
Psychiatric Association 2000). In the past, diagnosis was
made at the average age of 4 years but is now being
diagnosed at earlier ages due to increased public awareness
of the disorder (Volkmar and Klin 2005).
Autism is more specifically identified as autistic disorder
and is one of five categories of Pervasive Developmental
Disorders classified in the DSM-IV-TR (American Psy-
chiatric Association 2000). The categories of autistic dis-
order, Asperger’s disorder, and Pervasive Developmental
Disorder Not Otherwise Specified (PDD-NOS), are of
particular interest to this study and will be referred to as the
Autism Spectrum Disorders (ASD) throughout this paper.
As prevalence rates increase and diagnosis is made
earlier, the demand for ASD treatments augment (Volkmar
and Klin 2005; Fombonne 2005; Tidmarsh and Volkmar
2003; Lord and Schopler 1988). Yet empirically conducted
studies of the efficacy of various treatments for autism are
limited, leaving parents and professionals with little evi-
dence on which to base their treatment decisions (Kasari
2002). Evidence-based treatments such as behavioural
therapies, have come to the forefront of autism literature
Smith (1999), in his review of outcome studies, recognized
Intensive Behavioural Intervention (IBI) as the most
effective treatment for autism. However, families who use
behavioural treatments for autism commonly use other
treatments as well (Goin-Kochel et al. 2007; Green et al.
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2006), and often choose to discontinue use of treatment for
various reasons. Additionally, families who may not have
access to behavioural treatments or choose not to pursue
behavioural treatments are likely to explore a variety of
treatment alternatives.
The present study seeks to build on past research to
further explore treatments in current use for ASD, to
investigate parents’ perceptions regarding those treatments,
and to examine parental reasons for choosing to continue or
discontinue a treatment.
In a review of intervention options for children and
youth with autism, Heflin and Simpson (1998) reported on
32 interventions believed to be in common use for treating
children with autism. They reviewed a range of treatment
approaches including: (a) relationship-based treatments; (b)
skill-based treatments; (c) physiologically oriented inter-
ventions; (d) psychopharmacologic treatments; and (e)
combined programs. The review of the literature revealed
some treatments had supporting evidence, while others
were understudied or had evidence indicating that the
treatment was ineffective or even potentially harmful.
Although this article was a useful review of the literature
on various treatments for autism, it was based on the
opinions of the authors, and therefore, was limited as to
what treatments were in most common practice for autism.
No prior research had ever investigated the full extent and
range of treatments in actual use for the disorder.
In recent years, several studies have examined common
treatments that parents choose for their child with ASD.
Parent report, through internet surveys, has provided
researchers with greater insight into treatment usage, effi-
cacy of treatments, and parental perceptions. Building on
Heflin and Simpson’s (1998) work, Green et al. (2006)
conducted an internet survey on a sample of 552 parents of
children with autism to ascertain the variety of treatments in
actual use. The study found that 108 different programs,
procedures, and approaches were in use or had been tried in
the past by parents (Green et al. 2006). Subsequent studies
share similar findings, with parents reporting an average
current use of between four and seven different treatments.
The greater the severities of symptoms, the more treatments
are likely to be in use (Green et al. 2006; Goin-Kochel et al.
2007). Moreover, Goin-Kochel et al. (2007) found that
treatment use differs by age, where younger children use
more behavioural, educational, and alternative treatments
compared to older children, who tend to use more pre-
scribed medications and drug therapies.
At large, the most common types of treatments used are
standard therapies, including speech and music therapy,
followed by other skill-based treatments, such as social
stories and fast-forward, and ABA treatments. Other
treatments which have little or no evidence of efficacy in
treating the disorder are also reported to be in use by a
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large percentage of the population including physiological
treatments, such as auditory integration training and sen-
sory integration, vitamin supplements, alternative diets,
and detoxification (Green et al. 2006; Goin-Kochel et al.
2007). Alternatively, some treatments that are empirically
supported are reported as less commonly used (Green et al.
2006). Evidently, empirical evidence does not seem to be a
predominant factor in how and why parents choose treat-
ments for their children with autism, and therefore, more
research is needed to investigate the decision-making
process related to treatment usage.
The reasons parents choose to start and stop particular
treatments are not fully understood. Metz et al. (2005),
propose a number of factors that influence parents’ choices
of treatment, including: the severity of the disorder; poor
prognosis and emphasis on the need for early intervention
encourages parents to find a treatment that will have a
quick and significant impact; lack of knowledge related to
the diagnosis and evaluating evidence-based intervention
leads to ill informed decisions; and conflicting information
from professionals with whom they interact and receive
services leaves parents overwhelmed and vulnerable.
In a review of complementary and alternative therapies
for ASD, Levy and Hyman (2005) postulate that choice of
treatment is based on the perceived underlying cause of the
disorder. Parents may believe that by treating the root
cause of the disorder, symptoms can be reversed and their
children will return to a typical rate of development. These
authors site the use of Secretin as an example of how
parents, and even professionals, are vastly influenced by
testimonials and observations. Secretin is a gastrointestinal
hormone that stimulates the secretion of bile from the liver,
as well as acts as a stress regulatory hormone that impacts
GABA levels (Yung et al. 2001; Kern et al. 2004). Secretin
was an unstudied treatment that gained widespread popu-
larity and use through anecdotal reports before scientific
investigation failed to find any evidence of efficacy for
treating ASD (Levy and Hyman 2005; Sandler 2005). It
appears that there are numerous factors that affect parents’
choice of treatments for their children with ASD, which
need to be fully explored.
An area of current interest examines parental percep-
tions of what treatments work and how satisfied they are
with these treatments. In a survey of families in Indiana,
the usage and perceived outcomes of 19 different early
interventions were explored. The perceived efficacy of the
early interventions varied across treatment. Parents repor-
ted the efficacy of intervention treatments, with parent
training reported as the most effective treatment followed
by speech therapy. Parents also rated the impact of treat-
ment across developmental areas (e.g., cognitive, social,
quality of life) with 43.4% of parents reporting good pro-
gress in the area of speech and language, and only 19.9%
J Autism Dev Disord (2011) 41:1373–1382
reporting good progress in the emotional area (Hume et al.
2005). Goin-Kochel et al. (2009) examined parents’ per-
ceptions of the efficacy of treatments. This study demon-
strated that parents notice improvement in their child’s
functioning for most treatments used. Treatments such as
occupational therapy, social skills training, and speech
therapy, were reported to be used by more than half the
parents, and rated as ‘‘somewhat’’ or ‘‘dramatically’’ effec-
tive by 70% of parents. Auditory integration, floor time, and
music therapy, were the least effective treatments. Parents’
perception of the efficacy of a particular treatment is fun-
damental to whether they continue or discontinue its use.
Based on the findings that many treatments are tried for a
time and then abandoned, more information as to the reasons
for discontinuing treatment is needed.
This study is an attempt to replicate the findings by
Goin-Kochel et al. (2007, 2009) with respect to the num-
ber, variety, and types of treatments in current use by
families of children with ASD. Age and diagnosis com-
parisons will be undertaken to assess differences in
parental choices of treatment, as well as to examine par-
ents’ perceptions of what areas of their child’s functioning
were most improved and least improved by treatment(s). In
addition, this study investigates the treatments that parents
choose to discontinue, and their reasons for discontinua-
tion– an area which is currently unreported in the literature.
Method
A survey was developed to explore the range of treatments
that parents use for their children with ASD and to gather
general data on demographics, characteristics of the dis-
order, and parental perception of change attributed to
treatment.
Survey Development
The survey was developed as an extensive web-based
questionnaire, designed to collect general information on
autism from the parents of autistic children. At the time
that the survey was developed, no other similar research
had been published. As a result, the survey was extensive
with a total of 72 questions, many of which were open-
ended to afford the opportunity for responses that may not
have been anticipated by the researchers. Of particular
interest to the present study, parents were asked to list, in
their own words, the current treatment given to their child
with ASD. In addition, parents were asked to list the
treatments they had used in the past and to give a reason
why these treatments were discontinued. Finally, parents
were asked to indicate which area of their child’s func-
tioning was most improved, and least improved by the
1375
treatment(s), used by indicating areas of functioning: (a)
cognitive, (b) behavioural, (c) attention, (d) linguistic, (e)
physical, and (f) social. A complete copy of the survey is
available from the first author.
Survey Distribution
The survey was posted online for 3 months on autism-
related websites and on autism-related distribution lists in
Canada and the United States. A total of 1, 034 parents
completed the survey online and returned the data to the
researchers.
Data Preparation
Survey respondents provided a list of treatments used for
their child with ASD in their own words. This data was
then coded into categories for further analysis. The treat-
ments were coded into categories based on those used by
Green et al. (2006), which followed previous work by
Heflin and Simpson’s (1998). The extensive list of 111
treatments for autism listed by Green et al. (2006) was used
as a guide to categorize each of the treatments in this study
into a total of 14 types/categories of treatment which are
listed in Table 1 and include a few examples of the treat-
ments that are in each category.
Results
Number of Submissions
The response to the survey was greater than expected with a
total of 1, 034 surveys completed. Respondents were asked
to indicate their child’s diagnosis as PDD-NOS (n = 378;
39%), autistic disorder (n = 474; 48.9%), Asperger’s
disorder (n = 118; 12.2%), or other. For the purposes of
this study, the surveys that indicated a diagnosis of ‘‘other’’
were eliminated (n = 52), as were the surveys that did
not indicate a diagnosis (n = 12). The resulting sample
included a total of 970 completed surveys.
Geographic Location of the Respondents
Surveys were completed by families from around the
world. There were 13 surveys (1.3% of the sample) that did
not include geographical information. Of the 970 total
responses, 966 respondents provided their geographic
location. The majority of respondents were North Ameri-
can (n = 894; 92.5%) with 77.9% from the United States
and 14.2% from Canada. The remaining submissions were
from other countries including areas of Europe, Australia
and others (n = 63; 6.5%).
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Table 1 Categories of treatments for ASD

Category Example of treatment

Standard therapies Speech therapy, music therapy, osteopathy

Other skills based Fast forward, Lindamood bell, social stories, visual schedules
Applied behaviour analysis (ABA) Discrete trial teaching, applied verbal behaviour, pivotal response training,
picture exchange communication system
Medications Haldol, risperdal, zoloft, secretin, luvox, tegretal, paxil
Physiological Auditory integration training, sensory integration, occupational therapy, physical therapy,
neuro-feedback
Vitamin supplement DMG, mega-vitamin therapy, Magnesium
Alternative diets Gluten free, casein free, Feingold diet, yeast free diet
Alternative therapies and medicines Craniosacral manipulation, weighted vests, aromatherapy, dolphin therapy, hippo therapy
Relationship based treatments Holding therapy, gentle teaching, son rise, floor time, play therapy, counselling
Combined programs TEACCH, giant steps, Eden
Detoxification Chelation, clathration, reduced L-glutathione
Medical procedure Vagal nerve stimulation
Special education Specialized preschool or school services
Other Non-specific responses such as ‘‘early intervention’’

Age the total sample. Of the 954 responses, 732 or 76.7%

Families were asked to provide the birthdate of their child
with ASD. Of the 970 respondents, 966 (99.6%) provided
this information which was then coded into years of age.
Following Goin-Kochel et al. (2007) study, participants
were divided into age groups for analyses. Children 5 years
and under, categorized as ‘‘early childhood’’, represented a
large proportion of the sample (n = 396; 41%), as did
children between the ages of 6 and 12 years, ‘‘middle
childhood’’ (n = 444; 46%). Adolescents between 13 and
18 years, ‘‘adolescence’’, comprised 9.6% of the sample
(n = 93) and ‘‘adults’’ (over 18 years) represented 3.4% of
the sample (n = 33). Children in ‘‘early childhood’’ com-
prised the majority of the sample for PDD-NOS, and aut-
ism diagnoses; while ‘‘middle childhood’’ had the largest
percentage (53.9%) of children diagnosed with Asperger’s
Disorder. The average age of diagnosis for each diagnostic
category was 4 years (M = 4.4; SD = 2.99).
Gender
The gender of the child was indicated on all submissions.
Of the 970 responses, 803 (82.8%) were males and 167
(17.2%) were females which roughly represents a 5:1 ratio
of males to females.
Received Treatment
Respondents were asked to indicate if their child with ASD
had ever received treatment, of any form, for their disorder.
The response rate for this question was 98.4% (n = 954) of
reported that their child with ASD had received some form
of treatment at some point in their life. There were 222
children (23%) with ASD who, by parent report, have
never received any type of treatment for their disorder.
Of this 23%, use of treatment was found to be dependent
on diagnosis (PDD-NOS = 30.7%, Autistic = 38.2%,
Asperger’s = 7.9%; v2 (4, N = 954) = 13.33, p \ .05) in
that individuals with Asperger’s disorder were less likely to
have undergone treatment than what would be expected as
compared to PDD-NOS or autistic disorder. Use of treat-
ment was also found to be dependent on geographic loca-
tion in that North American respondents were far more
likely to have undergone treatment than respondents from
Europe and other countries (North America = 76.7%,
Europe, Australia/New Zealand, and Other = 57.1%; v2
(8, N = 941) = 35.48, p \ .001). However, the sample
size was small for areas outside of North America (n = 63)
and therefore, these results must be interpreted with
caution.
Number of Treatments in Current Use
Respondents were asked to provide information on what
treatments they were currently using for their child with
ASD. Of the 970 total respondents, 72.4% (n = 702)
indicated they were currently using at least one treatment
and 12% (n = 116) were currently using five or more
treatments. There were 268 respondents, 27.6% of the total
sample that indicated they were not currently using any
treatment. Refer to Table 2 for a complete summary of the
frequency with which families use treatments.

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Table 2 Number of treatments in current use by families (n = 16, E = 43.7), vitamin supplements (n = 2,
No. of current No. of Percentage Cumulative
E = 10.3) and detoxification treatments (n = 0, E = 5.5),
treatments families of sample (%) percentage (%) but were more likely to use relationship-based treatments
than was expected (n = 25, E = 11.8). Children with
1 175 18.0 18.0 autistic disorder used ABA treatments more often than
2 128 13.2 31.2 expected (n = 206, E = 175.4), but used relationship-based
3 155 16.0 47.2 treatments less often than expected (n = 29, E = 47.4).
4 128 13.2 60.4 Children with PDD-NOS used diets (n = 58, E = 51.8),
5 116 12.0 72.4 relationship-based treatments (n = 43, E = 37.8), and
detoxification (n = 23, E = 17.5) more often than expec-
ted. The group difference in use of alternative diets was
Table 3 Frequency of use of treatments by category approaching significance, v2 (2, N = 133) = 5.72,
Rank Category Frequency Percentage (%) p = .057.
There were also age group differences for the frequency
1 Applied behavioural analysis 359 37.0
of treatments in current use. More children in early child-
2 Physiological 339 35.0
hood were currently using standard therapies, skills training
3 Standard therapies 338 34.9
and ABA, physiological, alternative, and relationship-based
4 Medications 141 14.6
treatments than were children in the middle childhood,
5 Alternative diets 133 13.7 adolescence, and adult categories. In contrast, children in
6 Special education 116 11.9 middle childhood were reported as using other skill-based
7 Relationships based 97 10.0 treatments, such as social stories and medications more
8 Vitamin supplements 85 8.7 frequently as compared to early childhood, adolescence,
9 Detoxification 45 4.6 and adults. These findings are consistent with previous
10 Alternative therapies 44 4.5 research by Goin-Kochel et al. (2007).
10 Other (not specific) 44 4.5
11 Combined programs 20 2.1 Parent Perception of Change in Functioning Due
12 Other skills based 8 0.8 to Treatments
13 Medical procedure 0 0
Parents were asked to indicate which area of their child’s
functioning they felt was most improved by treatment. They
Of particular interest to this study was the investigation of were given the following categories to choose from: cog-
multiple treatment combinations in use. Children in the PDD- nitive, behavioural, attention, linguistic, physical, and
NOS group were reported as more frequently using a com- social. A total of 73.5% (n = 720) of the overall sample
bination of standard therapies and physiological treatments provided a response to the question regarding the area of
than any other treatment. Children in the Asperger’s group functioning that was most improved by treatment. Respon-
were currently using a combination of standard and rela- dents indicated that behavioural functioning (n = 188;
tionship-based therapies, and autistic children used a com- 26.1%) and linguistic functioning (n = 168; 23.3%) were
bination of skill-based ABA training and standard therapies. the areas most improved by treatment. Moreover, areas of
functioning that were considered most improved by treat-
Frequency of Treatment Use by Category ment differed depending on the diagnosis of the child, v2 (14,
N = 970) = 36.47, p = .001. Frequencies are summarized
There were 14 categories created to group treatments into in Table 5. Children with Asperger’s disorder were reported
similar types or approaches. Table 3 summarizes the fre- to improve less than expected cognitively (n = 6, E = 12.5)
quency of treatment use by categories in rank order of the and linguistically (n = 7, E = 20.4), but were reported to
most frequently used to the least used. Treatments based on improve more than expected behaviourally (n = 30,
ABA approaches were the most commonly used treatments E = 22.9). Children with autistic disorder were reported
(n = 359; 37%), followed by physiological treatments at more often to make the most improvement linguistically
35% (n = 339) and standard therapies at 34.9% (n = 338). than was expected (n = 95, E = 82.1).
There were no reports of medical procedures in current use. Likewise, areas of functioning most improved by treat-
As presented in Table 4, there were significant group ment also differed according to treatment type, v2 (91,
differences for ABA, vitamin supplements, relationship- N = 970) = 708.19, p \ .001. Behavioural functioning
based treatment, and detoxification. Children with Asper- was reported to be most improved by medication, ABA,
ger’s disorder were less likely than expected to use ABA physiological, and alternative treatments. Children who

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Table 4 Comparisons of treatment usage and diagnosis

Treatment Autistic disorder PDD-NOS Asperger’s disorder
n (%) E (%) n (%) E (%) n (%) E (%) N X2

Standard therapies 49.9 48.9 41.0 39.0 9.1 12.2 339 4.57
Other skill-based 50.0 48.8 37.5 38.8 12.5 12.5 8 .007
ABA 57.4 48.9 38.2 39.0 4.5 12.2 359 36.39***
Medication 45.4 48.9 39.0 38.9 15.6 12.1 141 2.01
Vitamin 48.8 48.9 41.2 39.0 10.0 12.2 340 2.67
Physiological 52.9 48.8 44.7 38.9 2.4 12.1 85 8.48*
Alt. diets 50.4 48.9 43.6 38.9 6.0 12.2 133 5.72
Alt. therapy 56.8 48.9 36.4 38.9 6.8 12.3 44 1.76
Relationship-based 29.9 48.9 44.3 39.0 25.8 12.2 97 25.14***
Combined programs 50.0 49.0 45.0 39.0 5.0 12.0 20 1.06
Detoxification 48.9 48.9 51.1 38.9 0.0 12.2 45 7.53*
Special education 44.0 48.9 46.6 39.0 9.5 12.2 116 3.37
Other 54.5 48.9 36.4 38.9 9.1 12.3 44 0.74
p \ .05* n = observed count
p \ .001 *** E = expected count

Table 5 Frequencies of areas of functioning most improved by treatment(s) they had used in the past and to provide a
diagnosis reason for having discontinued the treatment(s). Discon-
Area of Autism PDD-NOS Asperger’s tinued treatments were coded into the same treatment
functioning (%) (%) disorder(%) categories discussed earlier. The reasons for which the
treatments were discontinued were provided in the parents’
Cognitive 52 (11.0) 45 (11.9) 6 (5.1)
own words and were then coded into categories by theme.
Behavioural 86 (18.1) 72 (19.0) 30 (25.4)
The categories included: (a) lack of progress, (b) no longer
Attention 42 (8.9) 32 (8.5) 7 (5.9)
needed treatment, (c) wanted to continue but could not (i.e.,
Linguistic 95 (20.0) 66 (17.5) 7 (5.9)
it was too expensive or was no longer accessible), (e) chose
Physical 7 (1.5) 12 (3.2) 0 (0.0)
to discontinue the treatment due to side effects, or dis-
Social 52 (11.0) 45 (11.9) 5 (12.7)
agreed with treatment practices or philosophies or found
The ‘‘other’’ category for areas of functioning most improved is not the treatment aversive, and (f) other reasons.
displayed in the table. Therefore, areas of functioning will not add up There were 281 responses that indicated a treatment had
to 100%
been used and discontinued which represents 29.0% of the
overall sample. Medications were the most frequently
were treated with standard therapies and vitamin supple- discontinued treatment as indicated by 19.9% of the 281
ments were reported to have the most improvement lin- respondents (n = 56). This was closely followed by the
guistically; while relationship-based treatments were most discontinuation of alternative diets by 19.2% of the
effective for areas of social functioning (refer to Table 6). respondents (n = 54). The discontinued treatments are
Similarly, respondents were asked to indicate the area of listed in order of most-to-least often discontinued in
their child’s functioning that they felt was least improved by Table 7.
treatment. There were 693 (71.4%) responses given to this Table 8 summarizes the reasons parents gave for dis-
question. A total of 182 respondents, representing 26.3% of continuing treatments. The most common reason for the
the sample, indicated that social functioning was the least discontinuation of treatment was the lack of progress or
improved by treatment. Overall, there were no significant improvement in the child’s overall functioning as indicated
differences in the area considered least improved by treat- by 37.7% of the 281 respondents. In particular, lack of
ment based on the diagnosis of the child or treatment type. progress was indicated as the primary reason for discon-
tinuing medications, vitamin supplements, alternative diets,
Discontinued Treatments and alternative therapies. Physiological treatments were
discontinued because the treatment was no longer neces-
In addition to providing information about treatments in sary in 13 of 41 cases (31.7%). It is important to note that
current use, respondents were asked to indicate any some responses related to the child’s improvement

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Table 6 Frequencies of areas

Treatment Cognitive Behavioural Attention Linguistic Physical Social
of functioning most improved
(%) (%) (%) (%) (%) (%)
by treatment type
Standard therapies 14.5 23.0 9.4 25.7 1.5 13.9
Other skill-based 12.5 37.5 12.5 25 0.0 0.0
ABA 16.7 25.1 11.4 22.6 1.4 14.2
Medications 16.3 31.9 14.2 12.8 3.5 11.3
Physiological 14.7 24.4 10.9 22.9 1.8 14.4
Vitamins 14.1 27.1 12.9 20.0 2.4 17.6
Alt. Diets 10.5 24.8 12.8 18.8 3.8 15.8
Alt. Therapies 15.9 27.3 13.6 13.6 2.3 15.9
Relationship-based 9.3 16.5 8.2 13.4 3.1 32.0
The ‘‘other’’ category for areas Combined programs 15.0 25.0 5.0 20.0 5.0 10.0
of functioning most improved is Detoxification 22.2 20.0 11.1 22.2 4.4 11.1
not displayed in the table. Special education 12.9 23.3 10.3 31.9 1.7 12.9
Therefore, areas of functioning
Other 11.4 27.3 11.4 18.2 0.0 20.5
will not add up to 100%

Table 7 Treatments in order of most-to-least frequently discontinued did not report this as a type of treatment. Moreover, the
Rank Treatment category Frequency Percentage (%) specific diagnosis of a child was found to affect the like-
lihood of the child receiving treatment. For example,
1 Medications 56 19.9 children with Asperger’s disorder were less likely to
2 Alternative diets 54 19.2 receive treatment. Perhaps, this is explained by their
3 Physiological 41 14.6 overall higher skill level and generally less severe char-
4 Vitamin supplements 37 13.2 acteristics, as compared to individuals with autistic disor-
5 ABA 34 12.1 der or PDD-NOS.
6 Alternative therapies 17 6.1 Treatment usage was also affected by where the indi-
7 Relationship-based 11 3.9 vidual lived. The finding that treatment was more often
8 Standard therapies 9 3.2 used for children from North America may suggest that
9 Detoxification 8 2.9 treatments are more readily available in North America or
10 Other 6 2.1 that there is something about North American culture that
11 Special education 5 1.8 leads parents to use and pursue more treatments. However,
12 Combined programs 2 0.7 the number of respondents from outside North America
13 Skills based 1 0.4 (n = 63) was quite low and cannot be considered repre-
Total 281 100 sentative of the population. Future studies targeting a more
representative international population would be necessary
to further assess any differences.
indicated that treatment was no longer necessary, while It appears that treatments are commonly available and
other responses indicated the nature of the treatment was of being used for ASD. Approximately, 3 out of 4 children
a short duration and therefore, discontinuation was not with ASD from this sample were receiving some form of
related to or reflective of progress. treatment for their disorder. This finding needs to be
interpreted with caution. The fact that the majority of the
sample was using treatment can be a reflection of the
Discussion people who seek out surveys on autism related websites,
and cannot be generalized to the ASD parent population.
The results of this study offer valuable information about This study also found evidence to support previous
the treatment usage for children with ASD. First, it is research which illustrated that it is not uncommon for
interesting to note that nearly a quarter of the children with families to use multiple treatments at the same time (Green
ASD (23%), had never received treatment for their disor- et al. 2006; Goin-Kochel et al. 2007). Combining treat-
der. It is not clear if this was due to parent choice, the lack ments may be an effective and necessary way to treat these
of availability of treatment, or other factors. It is presumed complex disorders, yet little is known about the safety and
that these children would have received some educational efficacy of combining treatment approaches. In addition,
services during their school-age years; although, parents these combinations of treatments further complicate the

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Table 8 Frequency of reasons

Lack of No Longer Not available Aversive Other No reason Total
for the discontinuation of
progress needed given
treatments by category
Standard 2 2 2 2 0 1 9
Skills based 0 1 0 0 0 0 1
ABA 4 4 12 9 2 3 34
Medication 24 1 2 16 5 8 56
Physiological 8 13 10 1 1 8 41
Vitamins 16 0 0 10 3 8 37
Alt. diets 34 1 5 8 6 0 54
Alt. therapy 6 2 3 1 1 4 17
Relationship 4 1 2 0 4 0 11
Combined 2 0 0 0 0 0 2
Detoxification 1 1 0 1 2 3 8
Medical proc. 0 0 0 0 0 0 0
Sp. education 3 0 0 1 0 1 5
Other 2 3 1 0 0 0 6
Total 106 29 37 49 24 36 281

assessment of efficacy of individual treatments and out-
come. There is a great need for research examining which
treatments and/or combination of treatments are most
effective for children based on their individual character-
istics (Campbell et al. 1996). It is likely that there is no
‘‘one treatment fits all’’ for these disorders (Heflin and
Simpson 1998).
Empirical evidence is not of primary importance to par-
ents when choosing treatments for their children with ASD.
ABA is the most empirically supported treatment for ASD
and is the most common treatment in current use according
to these findings (NYSDH-EI 1999). However, 63% of the
current sample indicated that their children are not using
ABA treatments. In addition, there are a variety of treat-
ments that are not empirically supported for treating ASD,
which are used commonly, including vitamin supplements,
alternative diets, and detoxification (NYSDH-EI 1999).
Therefore, it seems likely that there are a number of factors
that influence parents in their decisions when choosing
treatments for their autistic children, including: belief in the
underlying cause of the disorder, parenting style, lifestyle
and access to services and treatments, the impact of media,
and testimonials from other families (Levy and Hyman
2005). It is also possible that parents do not have a wide
range of choice for their child’s specific treatment but are
provided with whatever treatment is available. Presumably,
factors such as socio-economic status, regional proximity to
services, and parental advocacy are also likely to affect
opportunities to choose and access treatment. These factors
need to be properly investigated.
The treatments used for children vary depending on their
age and diagnosis, and this is not unexpected. For example,
it is not surprising that children with Asperger’s disorder
are more likely to use relationship-based treatments, as
their communication and cognitive skills are relatively
intact when compared to social skills. In this study, the
children with autistic disorder were using relationship-
based treatments less often than expected and ABA treat-
ments more often than expected. This may be due to the
rise in availability of ABA treatments and increased
awareness of its treatment efficacy. However, it may also
be that parents are prioritizing treatment targets around
functional abilities rather than relationship and social
skills. More specific investigation of parental priorities for
treatment is needed.
Parents’ perception of change in their child due to
treatment is a key factor in determining the social validity
of treatment programming. In this study, parents reported
the most improvement in the three diagnostically signifi-
cant categories: behaviour, communication, and social
functioning (DSM-IV–TR 2000). Finding suggests that
children with ASD respond differently to treatments.
However, social areas were also identified as the least
improved areas of functioning. This contradictory finding
suggests that children with ASD respond differently to
treatments. Consequently, the areas of functioning most
improved by treatment depend on the child’s diagnosis.
This may imply that differences in response to treatment
are based on severity of symptoms or perhaps the types of
characteristics that are most salient for the individual child.
The present study provides a preliminary look at
parental reasons for discontinuing treatment. Nearly a third
of all families tried, and subsequently, discontinued at least
one treatment type for their children with ASD. Medica-
tions, alternative diets, and physiological treatments are
among the top five treatments used by families, and yet

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J Autism Dev Disord (2011) 41:1373–1382
these were also the top three treatments most commonly
discontinued. There is little to no empirical support for
alternative diets and physiological approaches in treating
ASD (Dawson and Watling 2000). In addition, although
some medications listed by parents are used to treat sei-
zures or other specific medical conditions, drugs which are
not empirically supported, are being used to treat the dis-
order, including use of anti-viral drugs, anti-fungal drugs,
and Secretin (Levy and Hyman 2002). Families are influ-
enced to try a variety of controversial treatments, and in
some cases, discontinue the treatments due to lack of
progress (Dillenburger et al. 2004). This results in time
wasted on ineffective treatments that may have been better
spent on treatments known to be effective.
Parents are most likely to discontinue a treatment when
they believe that their child is not benefiting. The present
study demonstrated that this was the case for evidence
based and non-evidence based treatments, including med-
ications, diets, vitamin supplements, and alternative ther-
apies. Conversely, parents sometimes had to discontinue
treatments that they thought were effective, but could not
continue for various reasons. In the current study, the
majority of parents who discontinued ABA treatment did
so because it was no longer available to them and not
because of lack of progress or other reasons related to their
child’s progress. These findings suggest that parents’ per-
ceptions of treatments that work for their child are more
likely to be influenced by what they perceive as meaningul
change in their child’s functioning rather than empirical
evidence that is presented in the literature.
An objective of this study was to seek out parents’ use
and perceptions of treatment and therefore, provide infor-
mation in their own words rather than responding to
checklists. One of the limitations to using this approach
was that categorizing treatments often required further
research to investigate which treatment the parent was
describing. In 44 cases, the information provided by the
respondent was too vague to classify. It is also believed
that parents under-reported their use of treatments,
including special education and specific skill-based strate-
gies, such as visual schedules. This gives insight into how
parents view treatment in that it is separate from education,
as well as, larger and more elaborate than a single strategy.
However, this method of data collection was also seen as
an advantage in that it was reflective of the parents’ per-
spective. Moreover, the questions were open-ended and
responses were unscripted, allowing for responses the
authors may not have anticipated.
The classification of these responses was based on pre-
vious work (Green et al. 2006; Heflin and Simpson 1998)
but may better represent the information if organized by a
different scheme in the future. Green et al. (2006) noted the
differences in levels of specificity in treatment categories in
1381
that some were broad and general (e.g. speech therapy is a
standard therapy), while others are narrow and specific
(e.g. Picture Exchange Communication System is an ABA
approach), and although categorized separately, may be
used to address the same symptom. In addition, it is not
clear for what purpose the treatment is being used in some
cases. For example when anticonvulsant medications are
reported to be in use, it is not known if this is to treat a
comorbid condition of seizures or if it is solely for the
treatment of autistic symptoms, a practice which is cur-
rently controversial (Tharp 2003). The medications cate-
gory also includes Secretin, which is not recognized as an
effective treatment for autism (Levy and Hyman 2005;
Sturmey 2005; Levy and Hyman 2002). In this way, cat-
egories combine multiple types of treatments including
some that are evidence-based and some that are not. These
limitations do not diminish the value of the findings of this
study, but future revisions to the categorization scheme
may bring greater clarity to the issues.
Parental choice of treatment and perceptions of change
due to treatment are very important in the field of autism
research. The current study adds valuable information to the
emerging body of research on treatment usage and supports
findings by Goin-Kochel et al. (2007), in that parents are
likely to use a variety of evidence-based and non-evidence-
based treatments simultaneously for their children with
ASD. Moreover, this study contributes new information
about parents’ perception of change in functioning due to
treatments. Parents indicated that their children were most
likely to improve behaviourally and least likely to improve
socially as the result of treatment. Areas of improvement
were also related to the child’s diagnosis and treatment type.
Furthermore, parental choice of treatment was influenced by
their child’s specific diagnosis, treatment type, and perhaps,
also by their geographical location.
Future Research and Implications
These findings have important implications for treatment
planners when choosing target skills for development, and
confirm the need for individualized programming. Many
families appear to adopt a ‘‘try and see’’ approach to
treatment and will discontinue treatments for reasons that
vary depending on the type of treatment used. One of the
primary implications of these findings is that parents’
decisions about treatment are not solely based on scientific
literature. Therefore, parents have access to consumer-
friendly information about treatments, as well as access to
socially valid treatment options.
Further investigation of the specific variables related to
parents’ treatment decisions are needed. In a follow up
study, Green (2007) focused on how parents found out
about treatments and which sources of information most
123
1382
influenced their decision to try a treatment. Results indi-
cated that parents generally learned about treatments from
one of these three sources: (a) the Internet, (b) profes-
sionals, or (c) occupational therapists. In addition, it was
found that the ease of implementation, perceived effec-
tiveness, and time commitment, contributed to the use of
non-evidence based treatments (Green 2007). It is critical
to continue to investigate parental perceptions of change
due to specific treatments. Parents may value change in
much different ways or quantities than practitioners, and
may choose treatments based on their beliefs, priorities,
and lifestyle that will best help their child adjust and
function in their individual family context. This social
validity of treatment is an area ripe for future study.
Lastly, further research will be necessary to investigate
the factors that influence parents’ decisions to discontinue
treatments such as, the advice of professionals, the difficulty
of treatment implementation and maintenance, and the
availability of services. Although mail or internet surveys
are very useful for collecting these types of information,
personal interviews and questionnaires may provide a more
in depth source of detail and allow for clarification of
parental input. Given the apparent preponderance of fami-
lies of children with ASD to use non-evidence based treat-
ments, and in some cases, potentially harmful treatments,
the scientific community has a responsibility to explore all
possible avenues for assisting parents to make well informed
decisions based on the best available evidence.
References
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders IV-TR (text revision). Washington,
DC: American Psychiatric Association.
Campbell, M., Schopler, E., Cueva, J. E., & Hallin, A. (1996).
Treatment of autistic disorder. Journal of the American Academy
of Child & Adolescent Psychiatry, 35, 134–143.
Dawson, G., & Watling, R. (2000). Interventions to facilitate
auditory, visual, and motor integration in autism: a review of
the evidence. Journal of Autism and Developmental Disorders,
30, 415–421.
Dillenburger, K., Keenan, M., Gallagher, S., & McElhinney, M.
(2004). Parent education and home-based behaviour analytic
intervention: an examination of parents’ perceptions of outcome.
Journal of Intellectual & Developmental Disability, 29,
119–130.
Fombonne, E. (2005). Epidemiological studies of pervasive develop-
mental disorders. In F. R. Volkmar, R. Paul, A. Klin, & D.
Cohen (Eds.), Handbook of autism and pervasive developmental
disorders (pp. 42–69). Hoboken, NJ: John Wiley & Sons, Inc.
Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2009).
Parental reports on the efficacy of treatments and therapies for
their children with autism spectrum disorders. Research in
Autism Spectrum Disorders, 3, 528–537.
Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H. (2007).
Parental reports on the use of treatments and therapies for
123
J Autism Dev Disord (2011) 41:1373–1382
children with autism spectrum disorders. Research in Autism
Spectrum Disorders, 1, 195–209.
Green, V. A. (2007). Parental experience with treatments for autism.
Journal of Developmental Physical Disabilities, 19, 91–101.
Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reily, M., &
Sigafoos, J. (2006). Internet survey of treatments used by parents
of children with autism. Research in Developmental Disabilities,
27, 70–84.
Heflin, L. J., & Simpson, R. L. (1998). Interventions for children and
youth with autism: Prudent choices in a world of exaggerated
claims and empty promises. Part 1: Intervention and treatment
option review. Focus on Autism and Other Developmental
Disabilities, 13, 194–211.
Hume, K., Bellini, S., & Pratt, C. (2005). The usage and perceived
outcomes of early intervention and early childhood programs for
young children with autism spectrum disorder. Topics in Early
Childhood Special Education, 25, 195–207.
Kasari, C. (2002). Assessing change in early intervention programs
for children with autism. Journal of Autism and Developmental
Disorders, 32, 447–461.
Kern, J. K., Espinoza, E., & Trivedi, M. (2004). The effectiveness of
secretin in the management of autism. Expert Opinion Pharma-
cotherapy, 5, 379–387.
Levy, S. E., & Hyman, S. L. (2002). Alternative/Complementary
approaches to treatment of children with autism spectrum
disorders. Infants and Young Children, 14, 33–42.
Levy, S. E., & Hyman, S. L. (2005). Novel treatments for autistic
spectrum disorders. Mental Retardation and Developmental
Disabilities, 11, 131–142.
Lord, C., & Schopler, E. (1988). Intellectual and developmental
assessment of autistic children from preschool to school age:
Clinical implications of two follow-up studies. In G. Mesibov &
E. Schopler (Eds.), Diagnosis and assessment in Autism (pp.
167–181). New York, NY: Plenum Press.
Metz, B., Mulick, J. A., & Butter, E. M. (2005). Autism:
A late-20th–century fad magnet. In J. W. Jacobson, R.
M. Foxx, & J. A. Mulick (Eds.), Controversial therapies for
developmental disabilities: Fad, fashion and science in
professional practice (pp. 237–263). Mahwah, NJ: Lawrence
Erlbaum Associates.
New York State Department of Health Early Intervention Program
(1999). Clinical practice guidelines: Report of the recommen-
dations on autism and pervasive developmental disorders. New
York: State Department of Health. Retrieved March 23, 2005
from www.health.state.ny.us/nysdoh/eip/menu.htm.
Sandler, A. (2005). Placebo effects in developmental disabilities:
Implications for research and practice. Mental Retardation and
Developmental Disabilities Research Reviews, 11, 164–170.
Smith, T. (1999). Outcome of early intervention for children with
autism. Clinical Psychology: Science and Practice, 6, 33–49.
Sturmey, P. (2005). Secretin is an ineffective treatment for pervasive
developmental disorders: a review of 15 double-blind random-
ized controlled trials. Research in Developmental Disabilities,
26, 87–97.
Tharp, B. (2003). Contributions of neurology. In S. Ozonoff, S.
J. Rogers, & R. L. Hendren (Eds.), Autism spectrum disorders: A
research review for practioners (pp. 111–129). Washington, DC,
USA: American Psychiatric Publishing, Inc.
Tidmarsh, L., & Volkmar, F. R. (2003). Diagnosis and epidemiology
of autism spectrum disorders. Canadian Journal of Psychiatry,
48, 517–525. (electronic version).
Volkmar, F. R., & Klin, A. (2005). Autism in infancy and early
childhood. Annual Reviews of Psychology, 56, 315–336.
Yung, W. H., Leung, P. S., Ng, S. S., Zhang, J., Chan, S. C., & Chow,
B. K. (2001). Secretin facilitates GABA transmission in the
cerebellum. Journal of Neuroscience, 21, 7063–7068.
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