Original paper parents’ experiences of home based applied b

1. ORIGINAL PAPER
Parents’ Experiences of Home-Based Applied Behavior
Analysis
Programs for Young Children with Autism
Corinna F. Grindle Æ Hanna Kovshoff Æ
Richard P. Hastings Æ Bob Remington
Published online: 6 June 2008
� Springer Science+Business Media, LLC 2008
Abstract Although much research has documented the
benefits to children with autism of early intensive behav-
ioral intervention (EIBI), little has focused on the impact of
EIBI on families. Using a semi-structured format, we
interviewed 53 parents whose children had received
2 years of EIBI to obtain detailed first person accounts of
the perceived benefits and pitfalls of running a home pro-
gram, and the impact of EIBI on family life and support
systems. In general, parents were positive about EIBI, its
benefits for them, their child, and the broader family.

2. Interviews also, however, revealed some of the more
challenging aspects of managing home-based EIBI. The
implications of these findings for more supportive inter-
ventions for families on home programs are discussed.
Keywords Early intensive behavioral intervention �
Family impact
Research has shown that home-based early intensive
behavioral intervention (EIBI) founded on the principles of
applied behavior analysis (ABA) can produce dramatic
improvements for young children with autism. This
includes the development of an effective skills repertoire,
the control of challenging behavior (e.g., self-injury),
successful integration into mainstream schools and for
some, it is claimed, apparently normal levels of functioning
(e.g., Anderson et al. 1987; Lovaas 1987; McEachin et al.
1993; Smith 1999). In a typical EIBI program, a team of
trained therapists provide one-to-one home-based inter-
vention for up to 40 h a week, often for several years.

3. Consultants in behavior analysis regularly review child
progress, tailor interventions to the child’s strengths and
needs and train therapists in instructional techniques
(Smith et al. 2000b).
Researchers assessing the efficacy of EIBI have
understandably focused on outcomes for the child with
autism. There are, however, very few published data
focusing on the impact of an intensive home-based
intervention on the families of such children. This issue is
of central importance because effective EIBI may depend
critically on close family involvement (Green 1996). It is
also important to consider the potential impact of having
a child with autism on the functioning of the family.
When compared with parents of children with no known
disabilities, parents of children with autism have often
been found to have more severe psychological problems.
For example, mothers of children with autism have been
shown to be at a higher risk for clinically significant

4. levels of parenting stress than of those mothers of other
children with developmental disabilities (Hastings et al.
2006). In a meta-analytic study, Singer (2006) also found
that studies focusing on mothers of children with autism
reported significantly larger effect sizes of depression
differences than those focusing on intellectual disability
or other disabilities. Thus, because parents of children
with autism may already be at increased risk of stress and
depression (see also, Gold 1993; Koegel et al. 1992),
clinicians need to be aware of potential additional effects
of engagement in EIBI.
C. F. Grindle (&) � R. P. Hastings
School of Psychology, Adeilad Brigantia, Bangor University,
Gwynedd LL57 2AS, UK
e-mail: [email protected]
H. Kovshoff � B. Remington
School of Psychology, University of Southampton,
Southampton, UK
123
J Autism Dev Disord (2009) 39:42–56

5. DOI 10.1007/s10803-008-0597-z
A few published studies focusing on the functioning of
family members in the context of EIBI have reported
parental stress outcomes as a part of their evaluation of
EIBI. For example, Birnbrauer and Leach (1993) found
that, after 2 years of a 20 h per week intervention program,
nine mothers whose children were receiving EIBI reported
less stress than a control group of five matched mothers
who were not involved in an EIBI program. Similarly,
Smith et al. (2000c), found no differences in ratings of
stress when they compared mothers who had engaged in
EIBI with another group who had received a parent-train-
ing intervention. Furthermore, longitudinal data from both
of these studies showed that mothers became less stressed
over two or more years of EIBI (see also Smith et al.
2000a). In a cross-sectional study, Hastings and Johnson
(2001) reported that 130 mothers of young children with

6. autism engaged in EIBI had similar levels of stress to
mothers of children with autism in other research studies.
Overall, these data suggest that parents of young children
with autism engaged in EIBI programs are not at increased
risk of stress or that they report lower levels of stress than
comparable families.
Unfortunately, the studies reviewed have a number of
limitations: some fail to incorporate appropriate control
groups while almost all include only a restricted range of
measures of family impact and focus exclusively on
mothers. In a better controlled study, Remington et al.
(2007) addressed these problems by reporting quantita-
tively on family impact using a broader range of
psychometric measures taken at three time points (pre,
12 months, and 24 months) during the course of interven-
tion. These included measures of parental mental health
and positive perceptions about their child. Participants
were parents (23 mothers and 16 fathers) of pre-school

7. children with autism enrolled in a research project evalu-
ating EIBI in the UK. The remaining 36 parents (21
mothers and 15 fathers) were a comparison sample that was
not receiving EIBI. After 1 and 2 years of EIBI, parents’
stress, anxiety and positive perceptions of their child were
no different to those of the comparison group. Although
there was an increased reporting of depressive symptoms in
fathers (but not mothers) of children engaged in EIBI,
paternal depression was low in the EIBI group at baseline,
suggesting a regression to the mean effect.
Overall, Remington et al.’s (2007) data were consistent
with earlier research in suggesting that EIBI created no
additional burden for parents, but a more complex picture
emerges from anecdotal reports from parents and some
systematic data. For example, Cattell-Gordon and Cattell-
Gordon (1998, p. 82), in describing their experiences of
running a home-based EIBI program comment that there
were ‘‘the more subtle but stressful problems of having

8. one’s home invaded for months at a time with team
members who came and went.’’ Hastings and Johnson
(2001) found that although program-related variables (e.g.,
child’s age when the program started, length of time the
child had been on the program, whether parents were also
therapists for the child) did not predict parental stress, other
psychological variables did. For example, adaptive coping
strategies, informal social support, and beliefs in the effi -
cacy of the interventions were associated with lower
reported stress; conversely higher reported stress was
associated with higher levels of autism symptomatology in
the child receiving EIBI. Other potentially stressful aspects
of running a program include recruiting and maintaining a
suitable team of therapists, the financial burden on the
family and disruption of family routines (Johnson and
Hastings 2002; Maurice et al. 2001).
Some research has also focused on how siblings of a
child with autism adjust when a high proportion of the

9. family’s financial and time resources are being directed
into the EIBI program (Johnson and Hastings 2002).
Although siblings may well appear to be at an increased
risk of negative effects, Hastings (2003) found no evidence
of additional psychological adjustment problems in com-
parison with normative samples.
Despite the clear advances in knowledge that these
findings represent, several important issues, identified in the
preceding discussion, remain. First, the research focus on
EIBI has mostly been on child outcomes. There is still scant
research on families’ experience of EIBI. Second, although
existing research suggests overall that parents and siblings
are not negatively affected by involvement in EIBI, many
behavioral practitioners report that some families do not
adapt well to home-based EIBI. Finally, most research to
date has used only a restricted range of quantitative mea-
sures of family impact and has concentrated mainly on
mothers’ experiences. The present study addressed these

10. issues by interviewing both mothers and fathers of children
with autism receiving EIBI to document their perspective on
the impact of programs on their personal and family life. In
addition to elucidating and enriching existing knowledge
based on quantitative research, the qualitative data obtained
may improve EIBI practitioners’ sensitivity to the impact of
their work on family life and thus contribute to improving its
effectiveness.
Method
Participants
Fifty-three parents (32 mothers and 21 fathers) of children
with autism were interviewed. Parents were not offered
monetary payment for participation. The sample included
21 cohabiting couples. An additional four families had a
J Autism Dev Disord (2009) 39:42–56 43
123
father at home who declined to participate in the research.

11. For seven families, fathers were not living in the same
home as the child with autism and did not participate. The
interviews thus provided information on the family life of
32 children with autism (29 male, three female), aged
between 54 and 77 months (mean = 65.8 months,
SD = 5.6 months). All lived in the family home in the UK.
Seventeen of the thirty-two children had no additional
health problems. The most common complaint suffered by
six children were gastro-intestinal problems, three children
had skin conditions such as psoriasis and eczema. Other
problems included dyspraxia and insomnia. Twenty seven
children had at least one sibling living at home, aged
between 2 and 156 months (mean 74.6 months,
SD = 32.6 months).
At the time of the interviews, the EIBI programs had
been running, on average for 25 months (SD = 3 months).
Seventeen families were enrolled in University supervised
EIBI programs provided by the Southampton Childhood

12. Autism Program (SCAmP: Remington et al. 2007) and
were funded through their local education service. The
remaining 15 families ran an EIBI program with consul-
tancy from a private service provider, paid for either by the
parents themselves or their local education authorities.
Recruitment Procedure
Participants were recruited in several ways. First, 30 fam-
ilies involved in (or known to) the University of
Southampton program were sent a letter inviting them to
participate. Some received a University of Southampton
managed service; others a service from private providers.
Twenty four families responded, all but one agreed to be
interviewed. Second, an advertisement seeking participants
was posted on several UK ABA focused websites and in
the newsletters of parent organizations. Nine families (15
parents) were recruited by advertisement.
The Interview Structure
To ensure that participants would talk freely, a semi-

13. structured interview format was used. The content, pre-
pared in advance, consisted of a series of open-ended
questions intended to gain information on a variety of topic
headings, often with alternative subsequent questions
depending on the responses obtained. For example, sug-
gestions for probes to encourage parents to expand on
responses and prompts to suggest to the interviewee the
range or set of responses expected from them. A proposed
sequence to ask the questions was also prepared prior to
interview, although this was sometimes subject to change
during the course of the interview depending on the
responses given.
After obtaining background and demographic informa-
tion (e.g., who lived at home with the child, the number and
age of siblings) the interview sought parents’ accounts of
their experiences of running EIBI programs. Discussion
focused on the following four topics: (1) parents’ percep-
tions of practical issues relating to their program (e.g.,

14. ‘‘Describe any practical benefits or difficulties associated
with running an EIBI program in the home’’), (2) the impact
of EIBI on family life and support systems (e.g., ‘‘Tell me
whether running the program affected how you got on with
members of your family’’), (3) the nature and level of par -
ents’ involvement in the program (e.g., ‘‘Describe your role
in running the program’’), and (4) any issues regarding
parents’ management of practical program-related matters
(e.g., ‘‘What was your role in dealing with practical issues to
do with the program?’’). Finally, parents were given an
open-ended opportunity to comment. A copy of the full
interview protocol is available from the first author. Inter -
views ranged from about an hour to over an hour and a half.
Data Reduction and Coding
Following interview transcription, a content analysis pro-
cedure based on the fundamental stages recommended by
Dey (1993) was used to identify a list of themes. Thus, the
basic unit of data was the sentence and all units that related to

15. the four topics listed above were grouped. Categories were
created that described common themes within these general
groupings. Next, these categories were combined or divided
to create the best possible categorical organization of the
data and category labels modified appropriately. The
resulting categorical system, including the definitions
associated with a category, formed the basis of the interview
coding book (details of the codes appear under the ‘‘Results’’
section). Each interview transcript was then coded in terms
of whether or not statements relating to the defined catego-
ries were present. Thus, each interviewee was characterized
as either expressing or not expressing ideas relating to each
category. All coding was carried out by the first author, from
whom the codebook is available on request.
Reliability
To establish inter-rater reliability, another member of the
research team coded 13 (25%) randomly selected interview
transcripts (8 mothers and 5 fathers) using the codebook.

16. The extent of agreement between the two coders was cal-
culated using the list of codes for each interview and a
simple percentage agreement index formula (agreements
divided by agreements plus disagreements and multiplied
by 100). An agreement was defined as when both raters
coded a parent interview as containing a statement corre-
sponding to a category, or when they both coded an
44 J Autism Dev Disord (2009) 39:42–56
123
interview as containing no statements corresponding to a
particular category. Overall inter-rater agreement across all
categories was 87% (range, 83–100% for individual
categories).
Procedure
The university ethics committee approved the study before
the parents were interviewed. Prior to interview, parents
received an information pack providing detailed informa-

17. tion about the study and a consent form indicating that
confidentiality and anonymity would be scrupulously
maintained. When written consent had been obtained, the
first author arranged a convenient time for the interview.
All interviews were conducted on the telephone and
audio taped. The interviewer (the first author), explained
that she was a research psychologist who had also worked
as an EIBI program supervisor for several years. Confi -
dentiality and anonymity was reiterated before and after the
interview. Participants were also verbally debriefed and
offered a written summary of the findings at the end of the
study.
Results
The interview topics covered and the categories used to
code each interview are shown in Tables 1–6. Excerpts
from the interview transcripts are used to illustrate each of
the categories, and the percentage of mothers (n = 32) and
fathers (n = 21) who were coded into each category is

18. listed. We will consider the results in relation to these
categories.
In examining these data, one important question is
whether or not mothers and fathers who are running the
program have similar experiences. To address this ques-
tion, we used a matched-groups design to examine data
from the 21 couples who participated (e.g., each husband–
wife pair). The purpose of the matched-groups design was
to evaluate whether the pairs of cohabiting mothers and
fathers had significantly different experiences from each
other. Differences between the frequencies for each inter -
view code for each mother-father pair were analyzed using
McNemar’s test. Despite some differences evident from
visual inspection of the data in Tables 1–6 which portray
differences between all mothers and fathers (respectively,
n = 32, n = 21), statistical analysis of each mother–father
pair (n = 21) showed that, in general, these were not sig-
nificant: mothers and fathers for the most part had similar

19. perceptions about EIBI. In reviewing the results below, we
will comment in the text only on those instances where the
McNemar tests revealed parental beliefs were significantly
different from each other.
Practical Benefits for the Family
Parents were asked to identify their perceived practical
benefits and difficulties of running the EIBI program for all
family members. The data revealed many benefits for
family members. These responses are summarized in
Table 1.
Practical Benefits for the Child with Autism
Every parent identified at least one practical benefit for the
child with autism. All parents regarded their child’s pro-
gress in language and communication skills as a positive
feature of the program. One father remarked, ‘‘Mark1
didn’t speak; now he and his brother are blabbering
between each other and conversing.’’ The vast majority of
parents reported that their child’s social skills had

20. improved. For example, taking turns, sharing, dealing with
conflicts, following directions and asking for help were all
cited as areas of improvement. One mother commented,
‘‘He now really loves to be with his sister and at bed time
he goes into her bed now and hugs her so he is much more
aware that they share.’’
Approximately one third of parents commented that
their child’s play skills had developed, in such areas as ball
play, recreational games (e.g., tag, hide and seek) and
independent play skills (e.g., puzzles, construction).
Practical Benefits for the Parents
Approximately three quarters of parents reported at least
one practical benefit for themselves. Of the 21 couples
interviewed, 86% of mothers reported additional support in
the home as a positive feature of the program, whereas only
38% of fathers mentioned this (p = .002). Examples of
support included that therapist’s helped with behavior
problems (e.g., tantrumming and self-stimulation), feeding

21. and toileting. They also helped by minimizing risk to the
child.
Approximately two thirds of parents said that EIBI
teaching released their time for other activities such as
complete household chores and recreation. Thirty eight
percent of mothers described increased free time as a
positive feature of EIBI, whereas only 10% of fathers
reported this consequence (p = .03).
Approximately one quarter of parents reported they had
acquired a much wider social network, members of which
understood their problems. Friendships developed with
intervention team members (e.g., therapists, supervisors) or
1 Names have been changed.
J Autism Dev Disord (2009) 39:42–56 45
123
with other parents engaged on EIBI programs. Parents
usually received positive support and useful advice from

22. these friendships. Finally, nearly a quarter of parents
reported that, because the program was run in the home,
they learnt how to use effective behavior management
techniques through observing therapists using them.
Practical Benefits for the Siblings
In those families with at least one typically developing
child (mothers N = 27; fathers N = 20), over three quar-
ters of parents reported at least one practical benefit for the
sibling. Of these the two most commonly reported were
Table 1 Practical benefits for the family
Topic/category % of mothers
(n = 32)
% of fathers
(n = 21)
Examples
Practical benefits for the child with autism 100 100
Improved language and communication skills 100 100 ‘‘To start
with he had no language; you couldn’t get
him to do anything. Not only does he use

23. language now but he uses it in the right context
and names things. He frequently asks you what
you are doing and there are times he talks more
than the other kids around him.’’
Improved social skills 84 79 ‘‘EIBI teaches children to interact
with the world.
Very early on [the child] was taught to wave and
so now when you say ‘wave bye bye’ …she at
least produces a response in somebody else and
this produces an interaction.’’
Better play skills 26 43 ‘‘His play skills are so well developed
now that he
can play with anything.’’
Became more used to being with people 19 10 ‘‘He has learned
to let people into the house now and
he is so friendly, as soon as he sees someone he
says, ‘‘What’s your name?’’
Practical benefits for the parents 86 67
More support in the home 69 52 ‘‘We had a lot of problems
with [the child] when the
baby arrived and he found it very distressing. So

24. with the program being at home they involved the
baby in the teaching and this helped them to bond
together.’’
More free time when child with autism was in therapy 47 19
‘‘There are times when [the child] is in his lessons
and I can go to the gym! So there is the element
that I get more free time.’’
More socialization opportunities for parents 25 14 ‘‘One of the
therapists has become a great friend; we
get on very well together and still keep in touch.’’
Parents could learn more about ABA 22 14 ‘‘You being there
[at home], you see things, you
pick things up and you know the kinds of things
that the team are working on. And they can
provide input, ‘have you thought about doing it
this way? Maybe this will work.’’
Topic/category % of mothers
(n = 27)
% of fathers
(n = 20)

25. Examples
Practical benefits for the siblings 78 75
Sibling enjoyed involvement in therapy sessions 44 30 ‘‘He
took part in some of the sessions which he
thought was good fun.’’
Sibling was able to learn about autism and ABA 22 30 ‘‘….
[The sibling] has really benefited from the
program. Now that she has started at school she
goes round to all the other children and says ‘‘hey,
excellent work’’…You can tell from what she is
actually reported as saying, it is what we have
been telling her to say to her brother.’’
Note: The main categorical labels (e.g., practical benefits for
the child with autism) are described by the subcategories that
follow (e.g., improved
language and communication skills, improved social skills)
46 J Autism Dev Disord (2009) 39:42–56
123
that the siblings enjoyed involvement in therapy sessions
and that they were able to learn about autism and ABA,
particularly through observing therapists modeling suc-

26. cessful interaction styles (e.g., by simplifying language,
getting attention before speaking).
Practical Difficulties for the Family
Parents’ comments also highlighted a number of areas
where their experiences with EIBI increased the com-
plexity of their personal and family life (see Table 2).
Difficulties with the Education Authority
Approximately three quarters of parents described diffi-
culties with their Local Education Authority (LEA). Over
half of the parents interviewed reported that their LEA had
been cautious about providing EIBI services, often because
of a combination of cost and philosophical and practical
concerns, and instead originally offered funding for alter -
native educational provision. One father explained:
As long as you wanted to put your child in a special
needs school, and you wanted to do their way of
things it was fine. If you wanted to do anything that
was outside of this little box it was like ‘Oh no, we

27. can’t let you do that’.
All families who had problems obtaining statutory
funding entered into a lengthy dispute with their LEA,
usually lasting for 6 months or more, during which they
tried to persuade the LEA that EIBI could meet their
child’s special educational needs.
Table 2 Practical difficulties for the parents
Topic/category % of mothers
(n = 32)
% of fathers
(n = 21)
Examples
Difficulties with the LEA 78 67
Difficult to obtain funding for EIBI program 59 48 ‘‘They told
us right from the beginning that they
would never fund an EIBI program for any child.’’
LEA not at all knowledgeable about ABA 44 29 ‘‘They had no
understanding at all about up to date
research, they had heard horror stories about
Lovaas [EIBI] in the sixties but didn’t know

28. anything about current papers or initiatives and
what could work.’’
Difficulties with therapists 91 100
Recruiting new therapists 56 57 ‘‘They [the service provider’s]
don’t tell you the
kind of person to look for…and things like not
having a therapist that is only doing one session a
week. I have found out things by trial and error
but we could have done with more advice about
it.’’
Difficult finding the right person for the job 34 33 ‘‘I am sure
she would have been a good teacher but
not for a child with autism. She would read the
notes and ask me what the notes mean and even
when it was explained to her….it just wasn’t her
cup of tea.’’
Therapist unreliability 31 14 ‘‘She [the therapist] just couldn’t
conduct herself in
a professional fashion, she would cancel at the last
minute and you could just tell that she was faking

29. a cold.’’
High therapist turnover 31 29 ‘‘Therapist turnover was a
problem. I had a time
when the program nearly collapsed, but I was
determined to keep it going and eventually we
found at least one person to work with him.’’
Problems with therapist presence in the home 59 76 ‘‘Your
home is never your own as there are always
people trooping through it and in the most
intimate way in that they come into the
bedrooms.’’
Administrative difficulties 47 33 ‘‘We used to spend all
weekend taking photographs
of locations. [The child] would master them in
one session. So we used to spend hours just
putting stuff together. I don’t think that side of it
is made clear to families.’’
J Autism Dev Disord (2009) 39:42–56 47
123

30. Of those cases where the LEA continued to refuse
program funding, 11 families (34%) found it necessary to
seek support from a statutory Special Educational Needs
Tribunal. Eight families (25%) were just a few days away
from a tribunal when the LEA relented and offered to pay
for the program, three families (9%) were subsequently
funded by their LEA as a result of winning support from
the educational tribunal (two full-time programs were
funded, one part-time).
Of the private provision group, three families (20%) met
the high costs of provision for a 2-year program themselves
(at a cost of at least $29,000 a year), ten families (66%)
funded their program for a period of between of 6 and
12 months, and two families (13%) had a full-time pro-
gram entirely funded by the LEA. Parents who paid for the
program themselves spent their savings, remortgaged their
house, or went into debt to finance it. Many parents (64%)
from the private provision group commented that the dis-

31. pute with the LEA and the financial burden of the EIBI
program had been very stressful for them.
Approximately 40% of parents thought that their LEA
was ignorant of EIBI. The most common criticism was that
the LEA held outdated and incorrect views about EIBI. For
example, one mother explained the views of her LEA: ‘‘In
their brochure they said they could not condone distressing
the child in the interest of long periods of drills….so they
had the typical ‘you will be held in this chair and be forced
to do this’ mentality’’.
Difficulties with Therapists
Almost all parents reported at least one difficulty with their
therapists. Therapist organization was particularly prob-
lematic, with just over a half of parents finding it difficult
to recruit therapists .Some had few potential therapists
nearby, others found it difficult to recruit individuals with
the appropriate skills and teaching philosophy (e.g., edu-
cational background, commitment to use of reinforcement).

32. …
Applied behavior analysis measurement, assessment, and
treatment
of sleep and sleep-related problems
James K. Luiselli
Melmark New England
This discussion article considers applied behavior analysis
measurement, assessment, and treat-
ment of sleep and sleep-related problems among infants,
children, and youth who are typically
developing and have neurodevelopmental disabilities.
Measurement has concentrated on design-
ing practitioner-implemented methods and improving fidelity of
data recording through
sleep-monitoring instrumentation. The emphasis of assessment
is identifying antecedent and
consequence variables that promote sleep and evoke and
maintain sleep-related problems. Treat-
ment research has evaluated several effective interventions for
problems such as delayed sleep-
onset, night and early morning waking, bedtime resistance, and
unwanted co-sleeping. Early
and contemporary applied behavior analysis research is
reviewed relative to function-based treat-
ment formulation, intervention integrity, social validity, and
research-to-practice translation.
Key words: applied behavior analysis, behavioral treatment,
sleep assessment, sleep-related
problems

33. Applied behavior analysis (ABA) research in
the area of sleep and sleep-related problems has
concentrated on infants, children, and youth
that are both typically developing and who have
neurodevelopmental disabilities (Durand, 2014a;
Luiselli, 2016; Mindell et al., 2006). Notably,
there are age-specific guidelines and recommen-
dations for desirable sleep duration and sleep
quality (Paruthi et al., 2016) but many infants,
children, and youth experience difficulty initiat-
ing and maintaining sleep. Unfortunately, care
providers may be instructed to implement
interventions that are not empirically
supported or to give medications that have
no benefit (Owens et al., 2003). One contri-
bution of ABA research, discussed herein, has
been dissemination of evidence-based practi-
tioner guides for enhancing sleep and eliminat-
ing sleep-related problems (Durand, 2014b;
Friman, 2005; Mindell, 2005).
There are many negative consequences when
infants, children, and youth sleep poorly, includ-
ing health risks (Colton & Altevogt, 2006),
emotional dysregulation (Hysing et al., 2016),
impaired neurocognitive functioning
(O’Brien, 2013), parenting stress (Meltzer &
Mindell, 2007), and occurrence of daytime chal-
lenging behavior (Eshbaugh et al., 2004). As
well, O’Reilly (1995) and Kennedy and
Meyer (1996) demonstrated that escape-
motivated problem behavior occurred more fre-
quently for some individuals during demand
conditions when they were sleep deprived the
day before. Similarly, Reed et al. (2005)
reported a relationship between food acceptance,

34. pre-meal sleep, and sleep disruption in a young
child with health complications. Hence, effective
sleep intervention represents a two-pronged pro-
cess intended to improve sleep and in doing so,
positively affect learning, health, general deport-
ment, and quality of life of the persons treated
and their care providers.
Commenting on the early development of
ABA sleep research, Jin et al. (2013) identified
several limitations and topics in need of further
study. First, behavioral research should strive to
Direct correspondence to: James K. Luiselli, Director
of Clinical Development and Research, Melmark New
England, 461 River Road, Andover, MA 01810.
Email: [email protected]
doi: 10.1002/jaba.774
Journal of Applied Behavior Analysis 2020, 9999, 1–14
NUMBER 9999 ()
© 2020 Society for the Experimental Analysis of Behavior
(SEAB)
1
incorporate objective measurement systems
beyond narrative report in sleep diaries and
completion of self-report questionnaires
(Sadeh, 2015). Second, meaningful research-to-
practice translation requires that parents and
other care providers are able to implement mea-
surement, assessment, and treatment proce-

35. dures capably and with good integrity. A
related concern is that some but not many of
the early sleep studies included social validity
assessments of intervention acceptability and
approval. Finally, functional assessment of the
conditions that contribute to desirable sleep
and sleep-related problems should be a neces-
sary element of research and clinical practice to
inform and individualize treatment.
This discussion article is a selective presenta-
tion of ABA measurement, assessment, and
treatment of sleep and sleep-related problems
and not a systematic review or meta-analysis of
the extensive peer-reviewed literature. The arti-
cle focuses on research conducted primarily
with children, referencing seminal studies, but
concentrating on contemporary publications
from the period 2014 to 2020 and summariz-
ing several key topics that have emerged.
Common Sleep Concerns
Between 20-30% of typically developing
infants and children experience sleep problems
(Johnson & McMahon, 2008; Mindell
et al., 2009). Higher prevalence rates between
50-80% have been reported among children
who have neurodevelopmental disabilities such
as autism spectrum disorder (ASD) (Kotagal &
Broomal, 2012). One of the most common
sleep problems, delayed sleep-onset, occurs when
children do not fall asleep within a reasonable
time after being put to bed. In some cases, chil-
dren remain awake quietly in their beds or play
with preferred objects but typically call out and

36. exit the bedroom to interact with care pro-
viders. The problem of night waking occurs as
children falling asleep at bedtime but waking
up multiple times during the night. This situa-
tion results in fewer hours of continuous sleep
and a fragmented sleep–wake cycle. Third, chil-
dren who demonstrate early-morning waking
sleep continuously for many hours after going
to bed, wake-up before getting a full night’s
sleep (e.g., 3:30-4:00 am), and remain awake
thereafter. The frequently encountered problem
of bedtime resistance represents behaviors such
as crying, screaming, environmental disruption,
tantrums, and aggression from children when
care providers direct, prompt, and guide them
to bed. Some additional concerns include chil-
dren being unable to fall asleep without access
to particular tangible items and activities
(so called, sleep dependencies) and who regularly
sleep in their parents’ bed (unwanted co-
sleeping). Co-occurring sleep problems are also
typical, for example, bedtime resistance in chil-
dren who have difficulty falling sleep and chil-
dren who wake up early in the morning.
There is consensus within the professional
community that difficulty initiating and
maintaining sleep in childhood “involves a
multifactorial pathophysiological mechanism
and represents a complex combination of bio-
logical, circadian, and neurodevelopmental fac-
tors that are influenced by, but not solely
attributable to environmental and behavioral
variables” (Mindell et al., 2006, p. 1264). In
illustration, delayed sleep-onset may be the

37. result of a child not being developmentally
ready to fall asleep (i.e., a lack of physiological
sleep pressure), over-stimulating conditions in
the bedroom, inconsistent bedtime routines,
and consumption of caffeine-laden foods and
beverages before going to bed. Consequences
maintaining delayed sleep-onset include chil-
dren receiving social attention from care pro-
viders, engaging in sleep-competing behaviors
(e.g., playing video games, listening to music),
and escaping the requirement of sleeping alone
through co-sleeping arrangements. Accurately
measuring sleep and sleep-related problems and
assessing evoking and maintaining variables,
James K. Luiselli2
discussed below, are critical components of
contemporary ABA research and practice.
Measurement
Sleep questionnaires are used frequently to
identify sleep concerns and measure the effects
of interventions (Abel et al., 2017;
Sadeh, 2015; Sanberg et al., 2018). Examples
include the Family Inventory of Sleep Habits
(FISH; Malow et al., 2009), Pediatric Sleep
Questionnaire (PSQ; Chevrin et al., 2000),
Behavioral Evaluation of Disorders of Sleep
(BEDS; Schreck et al., 2003), and Children’s
Sleep Habits Questionnaire (CSHQ; Owens
et al., 2000). The content of sleep question-
naires varies but generally seeks information

38. from respondents about medical, environmen-
tal, and interpersonal factors that promote sleep
and contribute to sleep problems. As subjective
pediatric sleep measures (Lewandowski
et al., 2011), responses to sleep questionnaires
may be subject to biases and should be verified
through direct observation.
Sleep diaries require that care providers
record narrative entries and behavior data
throughout the day. For example, in a sleep
intervention study with children who had
ASD, Sanberg et al. (2018) designed a sleep
diary in which parents documented measures
such as latency to sleep-onset, duration of total
sleep, frequency of night waking, and occur-
rence of unwanted co-sleeping. Sleep efficiency
metrics were converted from the sleep diary
recordings as outcome measures. Like sleep
questionnaires, sleep diaries often reflect the
subjective impressions of informants and
should be periodically assessed for interrater
agreement (van Deurs et al., 2020) and com-
pared to other information sources.
Real-time direct measurement consists of
researchers, practitioners, and care providers
recording sleep behaviors via child observations
in treatment settings, homes, and other living
arrangements. Frequency data of calling out
and leaving the bedroom (Freeman, 2006),
audio recordings of crying and vocal disruption
(Moore et al., 2007), and occurrence intervals
of sleep and wakefulness (O’Reilly et al., 2004;
Piazza & Fisher, 1991) exemplify some of the

39. direct measurement methods conducted in
ABA research. As noted, sleep diaries are some-
times used to collect these data but more often,
observers record frequency, duration, and inter-
val measures on precoded forms. For example,
Luiselli et al. (2005) created a sleep recording
protocol that was sequenced in consecutive
30-min intervals starting at 7:00 pm each day
through 7:00 am the next day. Care providers
at 16 community group homes observed adults
with intellectual and developmental disabilities
in their bedrooms at the conclusion of each
interval and recorded whether they were asleep,
awake, out of bed, or disruptive. The data were
then computed as nightly total percentage mea-
sures for every adult.
Advances in sleep measurement have empha-
sized different systems of remote observation
and data collection through videosomnography
(i.e., time-lapse video recording), actigraphy
(i.e., automated detection of motor move-
ments) and polysomnography (i.e., monitoring
of biophysiological activity) (Mannion &
Leader, 2014; Sadeh, 2015). Jin et al. (2013)
used a high-definition camera with infrared
illumination to record sleep, delayed sleep-
onset, and night waking in two children who
were typically developing (7-9 years old) and
one child who had ASD (9 years old). Parents
were instructed to activate a bedroom cam-
corder after putting their children to bed and
to turn it off upon waking in the morning.
The researchers conducted direct measurement
from the video recordings (i.e., duration and
time-sampling) to quantify sleep-onset delay,

40. sleep-interfering behavior, night waking, and
hours of sleep. There was high interobserver
agreement among the video-recorded sleep
measures (M ranges = 93-100%) and satisfac-
tory correspondence between the video-
3Sleep Measurement, Assessment, and Treatment
recorded sleep measures and parent reported
sleep diaries. Practical considerations when
adopting this method of direct measurement
are that video recording may be too intrusive
for some families and technical difficulties may
be experienced such as parents forgetting to
plug in the camcorder and to turn on the
night-shot mode. Nevertheless, Jin et al. (2013)
advised that at minimum, video recording can
be adopted initially to calibrate parent measure-
ment through sleep diaries and incorporated to
evaluate the effects of behavioral sleep interven-
tion. Videosomnography has since been used
efficiently in several ABA sleep intervention
studies (Lichtblau et al., 2018; McLay
et al., 2019; van Deurs et al., 2019).
Lesser et al. (2019) measured sleep distur-
bance in three children with ASD (3-4 years
old) in their homes with a motion-detection
camera that was connected to a laptop com-
puter with applicable software settings. The
camera simultaneously recorded continuous
video and motion-detection throughout the
night. Although the motion-detection camera
underestimated total sleep disturbance due to

41. the size of the detection window, it accurately
measured latency to sleep-onset and was more
efficient than extracting sleep data from the
continuous video. As yet, this motion-detection
system has not been employed in ABA sleep
treatment research. Further, three facets of
Lesser et al. have research-to-practice implica-
tions, namely (a) cost (approximately $2,400
for the system), (b) personnel resources for
operating equipment, and (c) utility of motion-
detection in assessing intervention integrity.
Another approach to sleep motion-detection,
reported by Sanberg et al. (2018), had three
children with ASD (4-8 years old) wear a small
sensor about the size of a wristwatch on their
ankle. The sensor recorded movement continu-
ously during sleep, producing activity data that
quantified sleep–wake cycles via a scoring algo-
rithm. The actigraphy measurement was sensi-
tive to intervention that reduced the children’s
time falling asleep and night waking, as well as
longer duration of total sleep. Although not
encountered in Sanberg et al., some children
may not tolerate wearing a sensor device and
require compliance training to ensure they do
not remove or damage it.
Despite advancements in remote sleep record-
ing instrumentation, some settings such as resi-
dential schools and group homes must rely on
direct measurement that estimates sleep from care
provider observations. Shlesinger et al. (2020)
described a computer-assisted sleep monitoring
system intended to improve measurement integ-

42. rity among care providers serving residential stu-
dents with ASD and related neurodevelopmental
disabilities (8-21 years old). Care providers briefly
observed students in their bedrooms every
15-30 min and entered one of 18 sleep codes
(e.g., sleeping, in bed awake, out of bed) into a
data recording application on a laptop computer.
The sleep recordings with supplementary notes
were electronically stored and computed through-
out the evening. The sleep monitoring system
also sent an urgent text message to an overnight
supervisor if care providers had not entered sleep
data within a prescribed window of time per
observation interval. Supervisors and program
administrators received next-day reports and
visual sleep charts of every student in order to
evaluate trends, isolate problems, and recommend
interventions if needed. Shlesinger et al. (2020)
documented average implementation integrity of
the system at 91% among care providers over a
4-year period.
Assessment
A sleep questionnaire such as the FISH
(Malow et al., 2009) can be used to identify
influences on child sleep problems but the
instrument was not designed for the purpose of
functional behavioral assessment (FBA). A spe-
cific FBA instrument such as the Questions
About Behavioral Function (QABF; Matson &
Vollmer, 1995) has been incorporated in ABA
James K. Luiselli4

43. sleep research, though infrequently (van Deurs
et al., 2019; van Deurs et al., 2020).
The Sleep Assessment and Treatment Tool
(SATT; Hanley, 2005) is an open-ended func-
tional assessment interview conducted with care
providers targeting several variables that may be
responsible for children’s sleep problems. The
SATT includes questions about the type and
history of presenting sleep problems, desirable
sleep goals, and conditions in effect when a
child resists bedtime, displays sleep-interfering
behavior (e.g., getting out of bed, exiting the
bedroom), takes longer than 15 min to fall
asleep, and wakes up in the middle of the night
or early in the morning. Other information
documented in the SATT is a child’s sleep
schedule, pre-bedtime routines, ambient sleep
environment, and any preferred objects taken
to bed. Depending on the results of functional
assessment, the SATT includes suggestions of
one or more interventions that researchers and
care providers can choose.
Several studies have featured the SATT in
sleep intervention research with children and
adolescents who were typically developing or had
ASD (Delemere & Dounavi, 2018; Jin
et al., 2013; McLay et al., 2019; van Deurs
et al., 2019, 2020). In all cases, the SATT
informed effective treatments for delayed sleep
onset, night and early morning waking, bedtime
resistance, night tantrums, and unwanted co-
sleeping. On a clinical level, the value of the
SATT and similar interview formats is isolating

44. the vast and usually co-occurring number of
antecedent and consequence variables that can
interfere with sleep and maintain sleep problems.
For example, studies with the SATT reported
that playing with books, magazines, and paper
while in bed, interacting with siblings, engaging
in motor and vocal stereotypy, listening to
music, playing with electronic devices, repeatedly
asking questions to parents, accessing food,
intrusive noise and light, and physical comforting
were functional variables subsequently addressed
through multiprocedure interventi ons.
Treatment
This section describes the most frequently
reported ABA sleep interventions, including
several seminal studies and contemporary
research conducted in the past 6 years. Note
that most of the interventions combined multi-
ple procedures and were effective with more
than one sleep problem.
Faded Bedtime With and Without
Response Cost
In treating delayed sleep-onset among four
children with intellectual and developmental
disabilities (3-19 years old) on a specialized
inpatient unit, Piazza and Fisher (1991) first
documented the average time each child fell
asleep, then implemented a faded bedtime pro-
tocol by setting an initial bedtime that was
30 min later. Each evening, time to bed was
adjusted 30 min ahead or back depending on
the latency to sleep-onset the night before. If

45. the children had not fallen asleep within
15 min of their scheduled bedtime, unit staff
kept them out of their rooms for 60 min
(response cost) before repeating the faded bed-
time protocol. Compared to baseline condi-
tions, this combination of procedures increased
duration of appropriate sleep by the four chil-
dren and three of them had fewer periods of
daytime sleep and incidents of night waking.
Ashbaugh and Peck (1998) replicated the
faded bedtime and response cost intervention
for delayed sleep-onset with a 2-year old typi-
cally developing child in her family home.
Baseline measurement revealed that the child
stayed awake after her parents put her to bed,
usually at 9:00 pm, and on average did not fall
asleep until 10:30 pm. Faded bedtime started
at 11:00 pm and if the child was sleeping
15 min later, her scheduled bedtime was
30 min earlier the following night. When the
child was not asleep within 15 min, the next
night’s scheduled bedtime was 30 min later.
The response cost component of treatment,
5Sleep Measurement, Assessment, and Treatment
similar to Piazza and Fisher (1991), had the
parents keep the child awake, but for 30 rather
than 60 min contingent on delayed sleep-onset.
The faded bedtime plus response cost interven-
tion decreased delayed sleep-onset and the child
established a more regular sleep–wake cycle.
Several replications and adaptations of faded

46. bedtime were conducted in recent research.
Sanberg et al. (2018) intervened with three
children who had ASD (4-8 years old) with
faded bedtime and response cost in addition to
their parents (a) maintaining a consistent wake
time each morning regardless of sleep duration
the night before, (b) preventing daytime nap-
ping unless otherwise designated for the child,
and (c) withholding attention contingent on
disruptive behaviors at and during bedtime.
This combination of procedures not only
reduced delayed sleep onset in all of the chil-
dren but also reduced night waking, bedtime
resistance, and unwanted co-sleeping as well.
Delemere and Dounavi (2018) compared the
effects of bedtime fading without response cost to
positive bedtime routines on delayed sleep onset,
frequency and duration of night waking, and
total sleep duration of six children with ASD
(2-7 years old). Three of the six children received
faded bedtime without response cost in which
parents began by placing them in bed 30 min
after their average sleep-onset time recorded
before intervention. When the children demon-
strated sleep-onset latency under 15 min, bedtime
was faded 15 min earlier the next night or moved
30 min later if time to sleep-onset exceeded
15 min. Absent response cost, parents verbally
prompted their child to bed contingent on night
waking. With the positive bedtime routines inter-
vention, parents selected a desirable bedtime for
their child, implemented sleep readiness activities
30 min before going to bed (e.g., reading stories,
washing, dressing), and avoided interactions that

47. might evoke challenging behavior. Both interven-
tions decreased delayed sleep-onset although
faded bedtime without response cost was more
effective at increasing total sleep duration.
Finally, Luiselli et al. (2020) extended faded
bedtime without response cost to an 18-year
old woman who had ASD and lived in a group
home at a residential school. Preceding inter-
vention, she averaged 2.3 hr to fall asleep and
only 6.7 hr of continuous sleep each night.
From baseline sleep-onset data, intervention
began with an 11:00 pm bedtime that was
gradually faded to 10:30 pm, then 10:00 pm,
following multiple consecutive nights of
reduced time falling asleep. The woman was
kept busy during the hours before bedtime by
participating in preferred educational activities
with group home care providers but not as a
response cost consequence. By the conclusion
of intervention, latency to sleep-onset was less
than 30 min and the participant averaged
8.4 hr of continuous sleep each night.
Differential Attention
O’Reilly et al. (2004) conducted interven-
tion with a 5-year-old child who had severe
intellectual disabilities and difficulty settling
herself after her parents put her to bed, repeat-
edly exiting her bedroom, and usually sleeping
less than 6 hr each night. A choice-assessment
before intervention found that the child pre-
ferred to interact with her mother when she left
her bedroom. The first phase of intervention
consisted of scheduling a standard pre-bedtime

48. routine with the child (e.g., snack, dressing in
pajamas, watching a video), putting her to bed
consistently at 8:00 pm, and immediately
returning her to the bedroom upon leaving.
The scheduling intervention was ineffective
when implemented in isolation but reduced
delayed sleep-onset and bedroom exits when
combined with fixed-time social attention from
the child’s mother every 5 min until she fell
asleep.
Friman et al. (1999) developed the Bedtime
Pass Program (BPP) as a parent-implemented
intervention consisting of differential reinforce-
ment and social extinction. Two typically
James K. Luiselli6
developing children, ages 3 and 10 years,
received a card (pass) they could exchange for
one “free trip” from their bedroom or one par-
ent visit before being returned to bed. Further
bedtime resistance was “ignored” by parents
withholding attention. This easily implemented
and highly rated intervention by parents elimi-
nated calling out and leaving the bedroom after
the children were bid “good night.” Moore
et al. (2007) later evaluated the BPP in a ran-
domized controlled trial with 19 typically devel-
oping children (3-6 years old) whose bedtime
resistance consisted of crying out and leaving the
bedroom after being put to bed. Parents in the
BPP group (N = 9) were instructed to set a stan-
dard bedtime for their child, present the pass for

49. one “free trip” out of the bedroom or requested
parent visit, and withhold reactions to subse-
quent attention-seeking behavior. Compared to
the control group (N = 10), the children who
received the BPP left their bedrooms significantly
less often and required significantly less time to
quiet after bedtime. Another meaningful finding
was the absence of an extinction burst associated
with intervention (Lerman et al., 1999). Of
note, the extinction component of the BPP
would have to be adjusted if a child’s bedtime
resistance was maintained by access to tangible
items and activities or negatively reinforced by
social isolation. Also, the BPP has not been eval-
uated in research with children who have intel-
lectual and neurodevelopmental disabilities.
Freeman (2006) replicated the effects of the
BPP on bedtime resistance of four typically
developing 3-year old children and also per-
formed a component analysis of the interven-
tion in two cases. The frequency of bedtime
resistance was higher when parents used the
pass alone without accompanying social extinc-
tion, suggesting that both procedures may be
necessary for optimal effectiveness. Similar to
Moore et al. (2007), extinction bursts were not
encountered with the BPP.
The Excuse Me Drill (EMD), reported by
Kuhn et al. (2019) “targets adaptive skills by
teaching caregivers to strategically provide posi-
tive attention when children practice sleep
compatible bedtime behaviors…while ignoring
disruptive behavior” (p. 3). Care providers

50. implemented the EMD by (a) placing a child
in bed following an established routine,
(b) excusing themselves from the bedroom for
a few seconds, (c) returning to praise behaviors
such as remaining quiet, staying in bed, and
preparing for sleep, and (d) gradually increasing
duration of “excuse me” trips until the child
was able to fall asleep independently. Disrup-
tive behavior was ignored and the EMD was
repeated when children were calm. Kuhn et al.
found that the program reduced latency to
sleep onset and decreased crying, screaming,
leaving the bedroom, and aggression of three
typically developing children (2-7 years old)
and one child with ASD (7 years old), although
extinction bursts were apparent in all cases.
Multiprocedure Packages
Jin et al. (2013) interviewed the parents of
three children using the SATT in order to pin-
point specific sleep concerns, contributory envi-
ronmental variables, and acceptable interventions.
From this information, parents were trained to
implement procedures intended to enhance esta-
blishing operations and discriminative stimuli
associated with falling asleep and eliminate the
consequences maintaining sleep-interfering behav-
ior. Problems of delayed sleep onset, sleep disrup-
tion, and night waking were treated successfully
through function-based interventions such as
adjusting sleep schedules (faded bedtime), taking
away sleep-disruptive objects and activities, termi-
nating over-stimulating pre-bedtime routines,
introducing relaxing transition-to-bed activities,
and removing behavior-contingent access to

51. attention and tangible items.
McLay et al. (2019) also used the SATT
with parents of seven children who had ASD
(2-4 years old) and a primary presenting prob-
lem of unwanted co-sleeping that usually
7Sleep Measurement, Assessment, and Treatment
occurred subsequent to delayed sleep-onset and
night waking. Functional assessment revealed
that co-sleeping resulted in positive reinforce-
ment (social attention, preferred activities,
physical comforting) and negative reinforce-
ment when parents removed the children from
their bedrooms and did not require them to
sleep alone. Taking a lengthy time to fall asleep
also set the occasion for problem behavior and
eventual co-sleeping. Parent treatment objec-
tives were to facilitate rapid sleep-onset, main-
tain prolonged sleep, decrease sleep-interfering
behavior, and eliminate unwanted co-sleeping.
Different combinations of function-based inter-
ventions were implemented including narrative
and photographic representation of bedtime
routines (social stories), social extinction, pres-
ence of a clock as a discriminative stimulus for
sleep and morning waking, and positive rein-
forcement contingent on children sleeping in
their own bed throughout the night. The
multiprocedure packages eliminated unwanted
co-sleeping in all of the children and also
reduced sleep-onset delay and night waking in
several cases.

52. Another evaluation of FBA-informed treat-
ment of sleep problems was conducted by van
Deurs et al. (2019) with three older children
who had ASD (9-14 years). The results of par-
ent interviews from the SATT and QABF,
sleep diaries, and analysis of night video record-
ings suggested that problems of delayed sleep-
onset and night and early-morning waking were
evoked and maintained by several antecedent
and consequence variables identified as incon-
sistent sleep–wake cycles, daytime sleeping,
stimulating pre-bedtime routines, sleep envi-
ronment discomfort, access to electronic
devices, exposure to bright light, and social
reinforcement of sleep-interfering behavior.
Similar to Jin et al. (2013) and McLay
et al. (2019), each child was effectively treated
with packaged interventions that were matched
to the functional determinants of their sleep
problems, specifically faded bedtime, scheduled
bedtime routines, presence of stimuli associated
with going to sleep and waking up, access to
sleep-conducive objects at bedtime, provision
of sleep-contingent …
Article
‘The line between
intervention and abuse’
– autism and applied
behaviour analysis

53. Patrick Kirkham
Independent scholar
Abstract
This article outlines the emergence of ABA (Applied Behaviour
Analysis) in the mid-20th
century, and the current popularity of ABA in the anglophone
world. I draw on the work
of earlier historians to highlight the role of Ole Ivar Lovaas, the
most influential prac-
titioner of ABA. I argue that reception of his initial work was
mainly positive, despite
concerns regarding its efficacy and use of physical aversives.
Lovaas’ work, however, was
only cautiously accepted by medical practitioners until he
published results in 1987. Many
accepted the results as validation of Lovaas’ research, though
both his methods and
broader understanding of autism had shifted considerably since
his early work in the
1960s. The article analyses the controversies surrounding ABA
since the early 1990s,
considering in particular criticisms made by autistic people in
the ‘neurodiversity
movement’. As with earlier critics, some condemn the use of
painful aversives, exem-
plified in the campaign against the use of shock therapy at the
Judge Rotenberg Center.
Unlike earlier, non-autistic critics, however, many in this
movement reject the ideolo-
gical goals of ABA, considering autism a harmless neurological
difference rather than a
pathology. They argue that eliminating benign autistic
behaviour through ABA is
impermissible, owing to the individual psychological harm and
the wider societal impact.

54. Finally, I compare the claims made by the neurodiversity
movement with those made by
similar 20th- and 21st-century social movements.
Keywords
Applied Behaviour Analysis, autism, behaviourism, Ole Ivar
Lovaas, neurodiversity
Corresponding author:
Patrick Kirkham.
Email: [email protected]
History of the Human Sciences
2017, Vol. 30(2) 107–126
ª The Author(s) 2017
Reprints and permission:
sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/0952695117702571
journals.sagepub.com/home/hhs
https://uk.sagepub.com/en-gb/journals-permissions
https://doi.org/10.1177/0952695117702571
http://journals.sagepub.com/home/hhs
http://crossmark.crossref.org/dialog/?doi=10.1177%2F09526951
17702571&domain=pdf&date_stamp=2017-04-20
Proponents of Applied Behaviour Analysis (ABA) have praised
it as the only scientifi-
cally validated method of treating or curing autism, while its
critics have vehemently

55. condemned it as abusive.1 This article analyses these debates,
outlining the rise of ABA
from an experimental therapy to its contested position today as
the ‘gold standard’ of
autism treatment. I argue that early critics of ABA raised
concerns only with regard to its
effectiveness or use of aversives, while more recent ones have
additionally focused on
the curative aims of ABA. These latter critics are often autistic
self-advocates who are
part of the ‘neurodiversity movement’; they reject the medical
model of autism and,
therefore, the need for any treatment whatsoever. Paying
particular attention to these
arguments, this article uses accounts written by autistic people
as its primary sources,
alongside others such as scientific articles, popular press
articles and interviews. While
many academics have examined autistic autobiographies, I
instead use informal texts
such as blog posts written by autistic people. These are used to
avoid a common over-
reliance on the accounts of those autistic people with sufficient
resources to publish

56. autobiographies, but the use also reflects the tendency of
autistic people to discuss ABA
online rather than through formally published works. These
debates are situated within
the histories of autism and behaviour therapy: historians of both
fields have seldom
focused on ABA, despite its current prominence in both
behavioural and autism inter-
ventions. This article also compares the neurodiversity
movement’s criticism of ABA to
other 20th- and 21st-century social movements that similarly
reject pathologization,
drawing new parallels with the gay rights movement and mental
health service user
organizations. Existing accounts of ABA are either brief asides
in broader accounts of
autism (for example, Eyal, 2010; Murray, 2012; Waltz, 2013) or
non-academic accounts
that are rich in factual detail but lack historical context (Donvan
and Zucker, 2016;
Feinstein, 2011; Silberman, 2015). This article is therefore the
first in the historical
literature to take ABA as its focus.

57. The language used in discussions of ABA and autism is
contentious. Many autistic
people reject the use of person-first language, arguing that it
suggests that they are
divisible from their autism, which they consider an inseparable
part of their person-
hood; I therefore opt for ‘autistic person’ rather than ‘person
with autism’. Similarly,
the appropriateness of medical terms such as ‘treatment’ and
‘therapy’ is disputed by
those arguing that autism is not a disease. Where there are no
suitable alternatives these
words are used in this article, but the – often unchallenged –
assumptions such terms
rely on should be noted. Relatedly, definitions of autism and
ABA have changed, as
will be discussed in detail. The diagnostic category has
expanded and shifted, meaning
many people with a diagnosis today have ‘symptoms’ milder
than or different from
those in the 1960s. This has led some to label autism a ‘moving
target’ (Hacking,
2013). Others have concluded that the concept has no
meaningful relevance (Timimi,

58. Gardner and McCabe, 2011) as there remains no consensus on
autistic diagnostic
criteria, and even less on the existence or type of an underlying
aetiology.2 Autism
itself is therefore as highly contested a condition as ABA is a
therapy. This article does
not attempt to evaluate the ontological status of ABA or autism
(see Hacking, 1999),
but aims instead to shed some light on the shifting debates
surrounding these
categories.
108 History of the Human Sciences 30(2)
What is ABA today?
The status of ABA today is complex and varies significantly by
geographical region.
However, in North America at least, ABA is currently very
popular. There are no
statistics revealing the exact number of people to have
undergone the therapy, but it is
clearly widely respected by much of the American medical
industry. Influential autism-
focused organizations, including the world’s largest autism

59. charity, Autism Speaks, are
particularly vocal supporters. Autism Speaks (n.d.) recommends
ABA above all other
alternatives, describing how its ‘scientifically validated
approach’ leads to ‘significant
improvements’. Other introductory guides to autism call ABA
‘the only proven treat-
ment’ (Autism Truths, n.d.) and ‘the best method for managing
autistic behaviour’
(Autism, n.d.). Anybody researching autism following a recent
diagnosis will quickly
find recommendations for ABA.
The persuasiveness and ubiquity of these recommendations have
led to increased
demand for ABA, as evidenced by the number of parents
lobbying for it to be available.
Many have brought legal action against insurance providers who
do not cover the cost of
ABA (Freudenheim, 2004). As a result, 38 states introduced
laws between 2010 and 2014
requiring insurance companies to cover ABA-related costs
(Allure, 2014); legal battles
continue in states without such laws. In the UK, meanwhile,
schools utilizing ABA have

60. been at maximum capacity, ostensibly owing to the popularity
of the therapy (Lambert,
2013). Parents have also campaigned for local councils to
provide ABA on demand
(Benyon, 2014). Those parents who have accessed ABA for
their children have an ‘over-
whelmingly positive’ opinion of ABA (McPhilemy and
Dillenburger, 2013: 154), which
likely leads to many parent-to-parent recommendations for
ABA. Autism charities also
fund ABA research to be conducted by well-established
researchers at prestigious insti-
tutions. These charities and researchers enlist celebrity
supporters to further raise aware-
ness of ABA (USCB, n.d.). On both sides of the Atlantic,
universities teach ABA through
dedicated degree courses. This ever-growing institutional
support for ABA is fuelled by,
and in turn fuels further, the efforts of campaigning parents and
charities.
This dominance of ABA is particularly unusual because purely
behavioural treat-
ments are not generally in medical favour today. Many
behaviours once subject to

61. behavioural intervention are no longer considered illnesses in
western medicine, such
as homosexuality. Among conditions that are still medicalized,
such as depression and
anxiety, intervention usually involves a blend of cognitive and
behavioural models
through cognitive behavioural therapy (CBT) (Marks, 2015).
This contrasts with ABA,
which remains rooted in traditional behaviourism.
What, though, is this popular treatment? Proponents of ABA
broadly agree that it is
characterized by the breaking down of behaviour into three
components (Autism, n.d.).
The first of these is the antecedent, which is whatever triggered
or preceded the beha-
viour being analysed. The second is the behaviour itself, and
last is the consequence of
the behaviour, which may be positive or negative. The
practitioner controls this using
rewards and punishment. Through this, ABA practitioners aim
to extinguish ‘undesir-
able’ behaviours and to promote ‘pro-social’ ones, such as
increased eye contact or

62. verbal communication. This logic, which has appealed to many
academics, parents and
charities, originated in the mid-20th century.
Kirkham 109
‘Deliberate, calculated harshness’: The origins of ABA
ABA emerged from behaviourism, a school of thought that
developed in psychology
from the 1910s (Smith, 2013: 140–1). Early behaviourist
researchers were primarily
concerned with conditioning in animals, drawing on the work of
earlier researchers such
as James Watson and Ivan Pavlov. The most famous of these
was B. F. Skinner, who
became well known for rewarding rats that exhibited a certain
behaviour with food; this
method became known as ‘operant conditioning’ (Skinner,
1938). The underlying
assumption – that behaviour could be modified through rewards
and punishment – was
extended to humans by a small number of researchers from the
1950s, particularly in
Britain. Practitioners began to take a behaviourist approach to

63. the treatment of mental
disorders at the University of London’s Institute of Psychiatry
and the Maudsley Hos-
pital (Marks, 2015). Psychiatrists such as Isaac Marks and
Michael Gelder, and clinical
psychologists such as Monte Shapiro, Stanley Rachman and
Hans Eysenck (Eysenck
and Rachman, 1965) deployed techniques such as aversion,
exposure or operant
conditioning to treat neurotic disorders such as phobia,
obsessions and compulsions
(Buchanan, 2010).3
By contrast, a number of behaviourist researchers in America
focused particularly on
lifelong rather than emergent conditions. University of Indiana
researcher Paul Fuller,
for example, attempted to use positive reinforcement on adults
with severe learning
difficulties or, as his paper’s title called them, ‘vegetative
human organisms’ (1949:
587). Others, such as Ayllon and Michael (1959), studied
patients with seemingly irre-
versible cases of schizophrenia. Such work consisted largely of
exploratory investiga-

64. tions, and most of these researchers spent the majority of their
careers pursuing other
interests, undertaking behaviourist studies only occasionally.
Behaviourist research into learning difficulties was also limited
by a widely held
assumption that people with learning difficulties were beyond
help.4 At the time, indi-
viduals were frequently institutionalized for life and would
rarely be assessed by clin-
icians after their admittance. Moreover, there were
proportionately fewer people
diagnosed with learning difficulties; the label of autism, for
example, was reserved for
those with the most ‘severe symptoms’. Researching treatments
for these patients was
therefore considered both futile and largely irrelevant to
psychological and psychiatric
practice. Even those researchers who did study the area
accepted this. For example,
Indiana researcher Charles Ferster, a close collaborator of B. F.
Skinner, began his
1961 paper by admitting its limited epidemiological importance
(Ferster, 1961: 437).

65. This belief, combined with the small number of researchers in
this field, meant that there
was no unified approach to such work; behaviourist practices
varied considerably and
practitioners disagreed about the causes of the behaviour they
were treating (Smith,
1997: 650).
Ferster’s paper was the first to investigate autism through a
behaviourist lens. In the
experiment Ferster locked an autistic child in a room daily for a
year (Ferster, 1961). He
refused to attend to the child when it cried, and its tantrums
stopped. He concluded that
parents had exacerbated their children’s autism by responding
to their tantrums. Such
medical parent-blaming was common; over-attentive mothers
had been denounced as
‘smother-mothers’ while those who failed to give their child
enough attention were
110 History of the Human Sciences 30(2)
‘refrigerator mothers’.5 The children of these women, it was
argued, responded by

66. developing autism. Ferster, though, was not primarily interested
in autistic children, but
hoped that his research would shed light upon schizophrenia, of
which autism was
considered a childhood form. In keeping with a medical
profession largely uninterested
in childhood learning difficulties, then, the first behaviourist
investigation of autism was
actually concerned with an adult condition.
As well as the University of Indiana, where Ferster was based,
the UCLA psychology
department was one of the few places where researchers used
conditioning to study
intellectual disabilities. It was here that Sidney Bijou coined the
term ‘behaviour anal-
ysis’ and divided behaviour into antecedents and consequences;
this division would later
become the hallmark of ABA. Under Bijou, the consequences
were verbal praise and
criticism, though researchers working elsewhere with animals
had begun to use electric
shocks. UCLA was also where Ole Ivar Lovaas became assistant
professor in 1961.6
Lovaas intended to study psychoanalysis but was soon

67. captivated by the work of Bijou
and his colleagues, and instead opted to study behaviourism.
Unlike Bijou, Lovaas considered verbal consequences alone
insufficient, particularly
when dealing with non-verbal children. Lovaas decided the
child must first acquire
communication skills before being able to respond to verbal
feedback. Lovaas also
wanted to work with autistic children as he considered them a
blank slate: ‘[Y]ou start
pretty much from scratch when you work with an autistic child .
. . they are not people in
the psychological sense’ (Lovaas, 1974: 76). This belief was not
unusual, mirroring
Fuller’s description of ‘human vegetative organisms’. Lovaas
initially worked with an
autistic child called Beth (ibid.). At first, he used only rewards
but became concerned
when Beth reverted to self-injurious behaviour. Additionally, he
noted that Beth struck
her head against the sharpest available surface. He concluded
that Beth was deliberately
sabotaging his experiment and beat her until she stopped.
Seeing that this stopped her

68. self-injury, Lovaas began to use such ‘aversives’ regularly,
initially through beatings and
later through shocks and the withholding of food (Lovaas,
1966).
There was initial skepticism towards Lovaas’ approach.
Skinner, for example, had
earlier argued that the use of punishment was associated with
undesirable side effects
(Dixon, Vogel and Tarbox, 2012: 7). The curative aims of the
work were unquestioned.
Lovaas pre-empted criticisms of the method’s harshness to other
researchers, arguing
that the use of physical aversives was better than the alternative
of institutionalization.
Moreover, Lovaas was not the only researcher advocating the
use of physical aversives,
merely the best known; others had concurrently been trialling
the use of shock-therapy
for autistic children (Risley, 1968). Persuaded by the arguments
made by Lovaas and
others, even initially skeptical academics, such as parent-
researcher Bernard Rimland,
eventually supported their methods in at least some cases.
Lovaas additionally courted broader media attention, inviting

69. journalists to watch his
treatment. In press interviews he admitted his methods were
harsh, but defended them as
the only way to improve the child’s life. Such defences proved
persuasive to journalists,
as demonstrated by a 1965 multi-page report in Life magazine.
Featuring photographs of
children being hit, the report acknowledged the treatment was
‘shocking’, ‘drastic’ and
‘deliberated, calculated harshness’, but was nonetheless
supportive, praising sensible
‘old-fashioned’ ideas, the ‘loving attention’ of the researchers
and the way it connected
Kirkham 111
with ‘far-gone mental cripples’. The article depicted Lovaas’
electric shock room, reas-
suring readers that it was a last resort, used for children who
did not respond to repri-
mands owing to a lack of anxiety: ‘To give [a child] something
to be anxious about, [they
are] taken to the shock room’ (‘Author Unknown’, 1965: 90).
This teaches them a ‘new

70. respect’ for the word ‘no’. Aware this might still seem unduly
harsh, the article empha-
sized the ‘patience and tenderness’ of the researchers. Lovaas,
through such media
engagement, was therefore successfully promoting his work.
By the late 1960s many American researchers were working in
ABA and in 1968 the
first issue of The Journal of Applied Behaviour Analysis was
released. Researchers also
formed professional societies such as the Association for the
Advancement of Beha-
vioural Therapy and the Behaviour Therapy and Research
Society (Horwitz, 2013). In
general, this work focused on autism, but some researchers
deployed ABA towards other
conditions. A particularly famous example was the ‘Feminine
Boy Project’, an attempt
to preemptively ‘cure’ those male children considered at risk of
becoming gay or trans-
vestites.7 The leaders of the project sought advice from Lovaas,
and used an approach
strongly influenced by ABA, indicating Lovaas’ status in the
field. Though others had
developed the ideas behind ABA, and there were numerous

71. active ABA researchers,
Lovaas was clearly one of the most well respected. His eye-
catching work and media
engagement had ensured him a pre-eminent position among
practitioners.
However, Lovaas was not uniquely popular outside of
behaviourism, in wider autism
and medical circles. Though ABA was becoming increasingly
popular, psychoanalytic
accounts of autism were still more widespread at this point,
owing to the work of
researchers such as Bruno Bettelheim and his colleagues who
had made similar claims
of ‘curing’ autism (Dolnick, 1998: 212). Parents of autistic
children, though, seemed
particularly interested in Lovaas’ work, even though it was not
yet in the medical main-
stream. Bernard Rimland, promoting Lovaas’ work in 1966,
found many parents were
already aware of ABA (Silverman, 2012). Lovaas was invited to
the first meeting of the
National Society for Autistic Children (NSAC) in 1969; the
organization’s first presi-
dent, Ruth Sullivan, personally supported his work (quoted in

72. Feinstein, 2011: 130).
Two main factors explain this enthusiastic parental support.
First, few people were
researching autism at this time, and many still considered
autistic children beyond help.
Although psychoanalytic therapies were increasingly available,
parents still had suffi-
ciently few options that they welcomed Lovaas’ work even
when many medical
practitioners did not. Second, non-behaviourist medical
practitioners supported parent-
blaming theories such as the ‘refrigerator mother’ hypothesis.
They advocated treat-
ments that often involved taking children away from their
parents, which was dubbed
a ‘parentectomy’ by some therapists (Dolnick, 1998). Lovaas’
approach, contrastingly,
actively involved parents as what historian Chloe Silverman
(2012: 113) has termed
‘explicitly trained cotherapists’. This involvement of parents
rather than their deliberate
exclusion made Lovaas’ ideas more appealing to parents,
particularly as its methods
were easy to apply at home (Nadesan, 2005). Nonetheless, in

73. more general terms,
behaviourist understandings of autism were only gradually
eroding the hegemonic hold
of the psychoanalytic framework.
Throughout the 1970s and 1980s Lovaas and his colleagues
continued their research
as the field of ABA grew. During this time Lovaas worked wi th
younger children,
112 History of the Human Sciences 30(2)
stressing the importance of intensive, early intervention. This
brought additional criti-
cism; some researchers were concerned that 40 hours per week
of treatment was exces-
sive. Lovaas also dropped the use of many physical aversives,
such as electric shock
treatment, during this period, as support for their use waned
during this time. NSAC had
publicly supported the use of physical aversives as late as 1975
but by 1988 effectively
called for a ban on their use (Silverman, 2012). In the same year
Anne Donnellan pub-
lished a book, Progress without Punishment (Donnellan, 1988),

74. that condemned the use of
physical aversives, further demonstrating increasingly
widespread discomfort. Some, such
as Bernard Rimland, continued to support physical aversives,
particularly in cases of self-
injurious behaviour. Nonetheless, Lovaas’ discontinuation of
the harshest aversives made
his methodology more acceptable to the wider medical
establishment, particularly as
concerns about child welfare had become stronger than they had
been in the 1960s.
Lovaas’ work also became more acceptable to the medical
profession as behaviourism’s
competing theory, that of psychoanalysis, became less
influential. Social historian Majia
Holmer Nadesan has suggested that this was due to the
difficulties in quantifying the effects
of psychoanalysis, while historian Edward Dolnick argued that
the psychoanalytic, parent-
blaming school of thought ‘wasn’t demolished in a single blow’
(Dolnick, 1998: 225) but
lost influence gradually owing to a number of factors. One of
those identified by Dolnick is
the work of American researchers such as Marian DeMyer who

75. conducted intelligence tests
on autistic children (DeMyer, Barton, Alpern et al., 1974). They
concluded that autistic
children were fundamentally ‘retarded’, implying a biological
basis for autism. This under-
mined dominant psychoanalytic thought at the time; autistic
people were not believed to
differ neurologically, but were thought to have normal or even
above average intelligence
that was hidden by an autism caused by factors such as
parenting. As Dolnick argues, this
made the position of Bettelheim and his colleagues increasingly
untenable (Dolnick, 1998:
227). Behaviourism was a readily available alternative
framework.
As well as the wider shift in the psy-disciplines away from
psychoanalysis, academic
understanding of autism specifically changed dramatically in
the 1970s and 1980s. It was
increasingly understood as something present at birth, and was
characterized in different
ways, as historian Bonnie Evans (2013) has argued. During the
1960s autism was
associated with psychosis, fantasy and schizophrenia, but by the

76. 1970s researchers such
as Michael Rutter were arguing that ‘the autistic child has a
deficiency of fantasy rather
than an excess’ (Rutter, 1972: 327, quoted in Evans, 2013: 4).
Using epidemiological
methods, Rutter and his colleagues placed less emphasis on
interpreting behaviour as
psychotic, and looked instead at language and social
impairments. The long-standing
link between autism and schizophrenia therefore disintegrated,
as shown when childhood
schizophrenia was removed from the third edition of the
Diagnostic and Statistical
Manual of Mental Disorders (DSM-III) and replaced by
categories of autism.
By the late 1980s, therefore, ABA and autism itself had been
radically transformed. It
was in this new environment that Lovaas published findings in
1987 claiming that 47%
of his patients had recovered from autism. In this study, Lovaas
compared the ‘intellec-
tual and educational functioning’ of two groups of children
under the age of four that had
been diagnosed with autism by multiple professionals. The first
group of 19 children

77. underwent 40 hours of one-to-one behavioural intervention
weekly for two years; 47% of
these were found to have ‘normal functioning’ after this time,
compared with only 2%
Kirkham 113
of the 40 children in the control group who had received only
10 or fewer hours a
week of intervention over the same time period (Lovaas, 1987).
These developments
were soon widely known and were taken as proof that ABA was
effective; such
evidence had not previously been published. Both proponents
and critics of ABA
acknowledge the importance of this result in establishing the
widespread popularity
of ABA.
The benefits of ABA were additionally detailed in Let Me Hear
Your Voice (Maurice,
1994), an emotional account of a family ‘triumphing’ over
autism for which Lovaas
wrote the foreword; this brought the therapy greater fame. ABA
became strongly asso-

78. ciated with those stories, rather than with its earlier use of
physical aversives. It was also
part of a new medical view that encouraged parents to fix
childhood autism, and no
longer blamed them for causing it. Crucially, this occurred just
before autistic diagnosis
rates increased dramatically throughout the 1990s and early
2000s (Wing and Potter,
2002). With more and more children being diagnosed as
autistic, there were ever-
growing numbers of parents searching for treatments. ABA,
marketed to parents as a
small number of simple steps, bore similarities to widespread
parenting and teaching
methods of reward and punishment, allowing it to be seen as an
apparently intuitive
approach. This, along with ABA’s involvement of parents, its
reduced harshness, its
claims of scientific validation and its stories of triumph,
ensured that it was soon widely
regarded as the best treatment for autism.
Continuing controversy: ABA in recent years
As ABA became more popular it attracted more controversy.
Part of this has been

79. academic; scientists have continued to argue that the benefits of
ABA have been over-
stated (Jordon, 2001; Olsson et al., 2015; Ospina et al ., 2008;
Weiss, 2006). Several have
attempted, and failed, to reproduce Lovaas’ results (Mudford et
al., 2001; see also
Matson and Neal, 2012: 12) while others have highlighted the
seemingly low quality
of ABA research; The Institute of Education Sciences concluded
there was little high-
quality evidence for the Lovaas model. Still others have
criticized the lack of randomized
controlled trials (RCTs) in ABA research (Howlin, 2005), which
are considered by many
to be the gold standard of evidence-based medicine.
ABA has always, however, faced some academic disapproval,
though this has varied
in degree and kind from the 1960s.8 Since the early 1990s,
though, ABA has faced a new
challenge from autistic people themselves. Rather than focusing
on the effectiveness of
the therapy, these opponents have argued against the need for
any therapy at all; they

80. consider ABA part of a system that mistakenly considers autism
a disease and therefore
take issue with the aims of ABA, though they have also led
campaigns against the use of
physical aversives. Such critiques have emerged as autistic
people have increasingly
been involved in debates about autism, its categorization and its
relation to medicine.
These activists and their allies constitute the ‘autism rights’ or
‘neurodiversity’ move-
ment that has developed in the past 25 years.
Before this, organizations focused on autism did exist, notably
the Autism Society of
America (ASA) and the National Autistic Society (NAS) in the
UK, both of which were
founded in the 1960s.9 Importantly, these were mainly run by
parents of autistic people;
114 History of the Human Sciences 30(2)
autistic people themselves were therefore excluded from debates
regarding autism (Daw-
son, 2003). From the late 1980s this changed, first through the
work of Temple Grandin, an

81. autistic woman who spoke about autism at conferences and in
books (Grandin, 1986). Soon
after, a group of American self-advocates established autistic-
run organizations, both online
and off-line, as well as retreats and conferences (Sinclair,
2005). In the UK, too, autistic
people gained new platforms, working with the NAS to launch a
publication written and
edited by autistic people (Aspergers United). …
Academic Journal Observations Scoring Guide
Due Date: Unit 1
Percentage of Course Grade: 5%.
CRITERIA NON-PERFORMANCE BASIC PROFICIENT
DISTINGUISHED
Apply information
literacy to a specific
field of study.
20%
Does not apply
information literacy to
a specific field of
study.
Apply information

82. literacy to a specific
field of study.
Apply information
literacy to a specific
field of study with
clear focus and
intent.
Apply information
literacy to a specific
field of study with an
engaged focus and
intent.
Select reputable
academic sources.
20%
Does not select
reputable academic
sources.
Selects semi-reputable
academic sources.
Selects reputable
academic sources.
Selects exemplary and
reputable academic
sources.
Summarize the
scope, structure,

83. and the main ideas
of the document.
20%
Does not identify a
focused scope,
structure, and the
main ideas of the
document.
Identifies a somewhat-
focused scope,
structure, and the
main ideas of the
document.
Identifies the scope,
structure, and the
main ideas of the
document.
Identifies completely
the scope, structure,
and the main ideas of
the document.
Compare and
contrast
publications or
writing styles.
20%
Does not complete a
basic comparison and

84. contrast of
publications or writing
styles.
Basic comparison and
contrast of
publications or writing
styles.
Complete
comparison and
contrast of
publications or
writing styles.
Excellent comparison
and contrast of
publications or writing
styles.
Use proper APA
citation and format.
20%
Does not use proper
APA citation and
format.
Uses proper APA
citation and format in
most, but not all
cases.
Uses proper APA
citation and format.

85. Uses proper APA
citation and format
with no errors.