Academic Journal Observations

O R I G I N A L P A P E R

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.

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.

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

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

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J Autism Dev Disord (2009) 39:42–56

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

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

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

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

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

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

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father at home who declined to participate in the research.

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

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-

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.,

‘‘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

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.

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

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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-

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

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

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, ‘‘Mark 1

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

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

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

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with other parents engaged on EIBI programs. Parents

usually received positive support and useful advice from

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

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

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) 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

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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-

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

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

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

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

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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-

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).

High therapist turnover created additional difficulties for

approximately one third of parents. Therapists were often

undergraduates at nearby universities who left the program

when their course finished, others reportedly stopped

working because they did not believe there were opportu-

nities for progression and career development in EIBI. In

addition, approximately one quarter of parents reported

instances of therapist unreliability (e.g., late arrival without

notification, short working hours or failing to attend all

team meetings).

Some parents also found it difficult to cope with

therapist presence in the home, experiencing both prob-

lems with the therapist per se (e.g., some parents reported

that therapists were too familiar with them or that they

left the house in disarray) or problems due to the structure

of the program. Some felt that the increased emphasis of

natural environment teaching on their program and the

subsequent reduction in structured table-top work had

resulted in reduced privacy for family members in private

spaces such as bedrooms and that this was difficult for

them. Approximately two thirds of parents reported that

the presence of therapists reduced privacy and/or dis-

rupted domestic routines. One mother commented how

she always had to be in the house for the beginning and

end of teaching sessions, ‘‘My life for the next two years

was in three hour intervals, where I had a three hour

interval to get out of the house, go somewhere and come

back.’’

Administrative Difficulties

Additional strains created by paperwork and teaching

resources also featured prominently for almost a half the

respondents. As one mother described, ‘‘It’s like running

your own business and there is a lot of work, the accounts,

sending off invoices to the LEA and all that sort of stuff

which is very time consuming.’’

Practical Difficulties for the Siblings and the Child with

Autism

Parents’ descriptions of practical difficulties for the child

with autism and for siblings are contained in Table 3.

Difficulties for the Siblings

Typically developing siblings reportedly experienced

practical difficulties as a result of the EIBI program. Of the

27 families concerned, more than one third of respondents

indicated that the sibling felt that he or she received less

attention than the child with autism. One mother

commented:

It was difficult for her [the sibling] to start with as she

was used to being the centre of attention. Suddenly

we had gangs of people coming round for [the other

child’s] benefit and she did find it quite difficult.

Approximately one fifth of parents indicated that the

sibling was routinely banned from entering some rooms

when teaching was in progress.

Difficulties for the Child with Autism

Only around 30% of those interviewed mentioned practical

difficulties for the child receiving EIBI. The most common

concern was that the child missed socialization opportu-

nities with peers through being educated at home. Other

48 J Autism Dev Disord (2009) 39:42–56

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concerns included that the child had less time to exercise

and that they became tired during teaching sessions.

Impact of EIBI on Family Relationships

Parents also described how EIBI program affected family

relationships (see Table 4).

Parent–Child Relationship Improved

All parents remarked that their relationship with the child

with autism had improved, particularly because of

improved communication skills or increases in manifest

affection. One mother explained, ‘‘She is much more

communicative now, she really looks at you and is more

huggy than she was before.’’

Sibling–Child Relationship Improved

For those families that included a typically developing

sibling, over half of those interviewed commented that the

sibling-child relationship had improved. The most common

reason cited was that they were able to play together. One

father reported, ‘‘She [the sibling] has a pretty normal little

brother who she can play with now and they have fun

together and do things together.’’ Many parents also com-

mented that teaching the child with autism how to play

with their sibling had been a specific target on their EIBI

program. For example, ‘‘Having [the sibling] involved in

the therapy with him has really helped in the sense that he

is now playing with her a lot more.’’

Parent–Sibling Relationship Improved

One third of parents reported that their relationship with the

sibling had improved, particularly because they had more

time to spend with the siblings when the child with autism

was in therapy. One mother explained, ‘‘If I want to do

something with [the sibling]….I can do that as long as I organize it, so it does give me that flexibility.’’

Parent–Sibling Relationship Deteriorated

Less than one fifth of parents felt that their relationship

with the child’s sibling had deteriorated, usually because

(conversely to above) they had fewer opportunities to

spend quality time with siblings. One mother remarked, ‘‘It

[the program] meant I had less time for them [the siblings]

and I think stress levels increased at times.’’

Parents’ Relationship Deteriorated

Almost a third of parents interviewed reported that their

relationship had deteriorated, usually because the couple

did not spend enough time together. One mother remarked,

‘‘My husband runs the program and is always working on

things for the program…it definitely affected our rela- tionship’’. Conversely, however, some parents were

disappointed that their partner was not more involved in the

program. As one mother explained:

It did upset me that he wouldn’t take too much of a

part in the program that he wouldn’t learn the signing

Table 3 Practical difficulties for the siblings and the child with autism

Topic/category % of mothers

(n = 27) % of fathers

(n = 20) Examples

Difficulties for the siblings 56 70

Sibling didn’t get as much attention

as child with autism

34 40 ‘‘At the start he felt like he was being left out as he

would see these people coming to the house

giving [the child] a lot of attention and tickles and

I think he looked at the program like [the child]

was having a lot of fun.’’

Siblings having to stay out of the way

when child was in therapy

25 10 ‘‘I have to say to [the siblings], please don’t go

upstairs and disturb [the child]…sometimes I’d be saying, ‘leave [the child] alone he has to do his

work.’’

Fewer trips/holidays for siblings 19 35 ‘‘You always had to be there at lunchtime because of

the way the sessions are, so during the holidays I

couldn’t take the other children out for the day

because I always had to be at home at lunchtime.’’

Difficulties for the child with autism 31 29 ‘‘He was not with other children and I still look back

now and think I wonder if he should have gone

one day at nursery….I didn’t know how he would cope with being at home all day.’’

J Autism Dev Disord (2009) 39:42–56 49

123

and than he wouldn’t attempt to listen to me when I

say this is the way we do this.

No parents interviewed explicitly mentioned that they

believed their relationship with each other had improved as

a result of the EIBI program.

Emotional Impact of EIBI

Parents also reported on the personal and emotional impact

of EIBI. The main factors identified related to their

expectations for the child with autism, and feelings of

stress and levels of motivation throughout the program

(see Table 5).

Emotional Responses Relating to Expectations for the

Child

Parents were asked to describe their expectations for the

child before undertaking EIBI. Just over two thirds

expressed delight that after 2 years on the EIBI program,

their initial expectations for their child had been either met

or exceeded. One father remarked, ‘‘As things have gone

on I have been totally amazed with the things that Matthew

has come out with…just things that a normal child would do.’’ The remaining parents, however, reported disap-

pointment at their child’s progress, often describing a

disparity between their initial expectation of normality

after 2 years and their child’s actual progress.

Levels of Stress Throughout the Program

Just under a third of parents explained that they felt that

their stress levels had declined over 2 years. Some had

become less anxious about difficulties with the LEA and

others more used to the demands of the program. The

child’s progress also reportedly reduced parents’ feelings

of stress. A quarter of parents reported that stress levels

fluctuated depending on whether or not there were prob-

lems with the program. Thus, some reported stress when

therapists left the program but not at other times. No par-

ents reported that they felt their levels of stress had

consistently increased throughout the program.

Table 4 Impact of EIBI on family relationships

Topic/category % of mothers

(n = 32) % of fathers

(n = 21) Examples

Parent–child relationship improved 100 100 ‘‘I think he has a really great relationship with me

his mother which I really don’t think he would

have if he had stayed at school. I would have been

the person who picked him up, took him home

and put him to bed whereas I think it has helped

for us to bond together.’’

Child could communicate more 82 81 ‘‘We were able to communicate better. It is very

easy to ignore a child who doesn’t talk. When he

started he had no speech whatsoever, when he

started speaking it was amazing.’’

Child became more affectionate 31 24 ‘‘It is so nice when he learns something new…like just putting his arms around you and saying

‘hello’’’

Sibling–child relationship improved 52 65 ‘‘Their relationship is much better now; they chat to

one another now whereas before it was just [the

sibling] speaking and nothing more….He has a brotherly relationship with [the child] which just

wasn’t there before.’’

Parent–sibling relationship improved 41 25 ‘‘Me and [the sibling] had lots of quality

time…when [the child]] was in therapy…I managed to enjoy him a lot more and we have

perhaps got a very good bond from the amount of

time we spent together.’’

Parent–sibling relationship deteriorated 16 15 ‘‘She actually said to her teacher that she was jealous

of her brother because mummy loves him more

than me.’’

Parents relationship deteriorated 31 24 ‘‘It put a strain on our marriage really. We haven’t

had as much time for each other purely because I

am tired because of all the one-to-one and the

house is a mess in the evenings.’’

50 J Autism Dev Disord (2009) 39:42–56

123

Levels of Motivation Throughout the Program

Of the 21 couples interviewed, 33% of mothers indicated

that they remained well motivated throughout, compared to

only 5% of fathers (p = .03). Just over a quarter of parents,

however, reported constantly changing levels of enthusi-

asm. As one mother said, ‘‘My feelings of motivation

fluctuate all the time. Sometimes I get very depressed about

the whole thing. It doesn’t though make me want to change

the fact that he is doing an EIBI program.’’ A similar

number of parents felt that, after 2 years of EIBI they were

less motivated than they had been at the beginning.

Although none wanted to stop the program, they reported

that their personal involvement had reduced (i.e., they did

fewer hours of therapy, missed some team meetings, etc).

Overall Evaluation of EIBI

Although the interview data identified some practical and

emotional difficulties of running the EIBI program, most

parents’ overall evaluation of EIBI remained markedly

positive (see Table 6).

Whether EIBI was the Right Choice for the Child

and the Family

Over three quarters of parents reported that, despite the

difficulties, EIBI was unequivocally the right choice for all

the family, particularly because of the child’s progress and

its subsequent positive impact on the family. For example

one mother explained:

Before we got EIBI we had a speech therapist who

came up once a month, now what is once a month? If

we hadn’t done EIBI we would still have a very

difficult child, he would be in a special school not a

normal one.

Another parent with two children with autism on pro-

grams commented, ‘‘To me nothing about doing EIBI has

been any more difficult or affected my home life any more

Table 5 Emotional impact of EIBI

Topic/category % of mothers

(n = 32) % of fathers

(n = 21) Examples

Emotional responses relating to expectations for the child

Feelings of delight when expectations for child

were met or exceeded

66 72 ‘‘There was a feel good factor that my son was improving

and radically to an extent that he would never have

without this program.’’

Feelings of disappointment when expectations

for the child were not met

34 29 ‘‘When we started it with [the child] being two and a half, I

thought by four and a half he would be coming out the

other end a normal child.’’

Levels of stress throughout program

Less stressed towards the end of the program 32 29 ‘‘I think it has got easier because we have got used to it.’’

Levels of stress fluctuated throughout program 22 29 ‘‘I am stressed now that it is coming to an end and he is

going to school in September, but also when he wasn’t

getting the hours he should have been I was very stressed

about it, constantly having to chase people up…it has been very stressful.’’

Levels of motivation throughout program

Fully motivated throughout program 25 5 ‘‘I am probably a lot more relaxed now about the whole

thing. I am still very positive about it and I don’t think

that has changed because we will keep it going because it

is the best for him’’

Feelings of motivation fluctuated 28 29 ‘‘A couple of times I seriously thought of giving it up

completely, it’s never been because of the progress he is

making because he has always made good progress. But

for me, sometimes I think I just don’t want to do this any

more. I think it’s when you compare what you’re doing

to what other people have-their normal life. But no, I’m

carrying on.’’

Less motivated towards the end of the program 25 33 ‘‘In the beginning you are very motivated particularly when

you start to see results like your child talking. Further

down the line two and a half years on, it becomes so

much a part of your life it becomes part and parcel of

life, so perhaps you don’t sit in on sessions as much.’’

J Autism Dev Disord (2009) 39:42–56 51

123

than it would do just having two children with autism

anyway.’’ Only around 10% of parents reported that EIBI

was the right choice for their child with autism, but not

necessarily for other family members.

Whether Parents would Recommend EIBI to Others

Nearly two thirds of parents said that they would recom-

mend EIBI to other families of children with autism. Most

said they would not caution about any negative effects.

One mum explained, ‘‘I would definitely recommend it

[ABA] to other families. The benefits for [the child] far

outweigh what we have been through.’’ Approximately one

quarter of parents commented that although they would

recommend EIBI to other families they would forewarn

them about possible effects on family life.

Discussion

Despite a developing literature exploring the effects of

engaging in EIBI on parents and typically developing

siblings of children with autism, no published studies to

date have examined parents’ accounts of their experiences.

The present data provide an insight into the perceptions of

parents who use EIBI, including its general effect on

family life and support systems, their experiences with

practical program-related issues, and the personal and

emotional impact of running the program in the home.

There were very few significant differences between the

perceptions of mothers and fathers. In general, parents

were positive about EIBI, its benefits for them, their child,

and the broader family. Additionally, however, they clari-

fied some of the more challenging aspects of an intensive

home-based early intervention program and described how

these challenges may impact families. EIBI service pro-

viders typically focus their treatment efforts on the child

with autism and are not necessarily mindful of the needs of

the remainder of the family. In discussing the key findings

of our research, we will focus on the results with the

clearest implications for clinicians and EIBI service pro-

viders. Many of the issues raised are matters of best

practice, but others may help to provide a different per-

spective for service providers. There are implications for

the practical and emotional support of parents, and for

other children in the family home.

Turning first to issues of practical support, the man-

agement issues relating to therapists were reported as

stressful for many parents (cf. Cattell-Gordon and Cattell-

Gordon 1998). EIBI service providers could assist parents

in various ways to help alleviate these difficulties. For

example, service providers could seek to establish net-

works for locating and recruiting students to be trained as

therapists. Offering advice about how to recruit by pro-

viding carefully defined selection criteria would also help

to improve recruitment efficiency, ensure better stability of

the therapy team and thus greater treatment fidelity.

Finally, senior staff could reduce the possibility of parents

hiring unsuitable therapists by assisting with the inter-

viewing process.

Other therapist-related problems included the frequent

presence of therapists in the home and consequent lack of

privacy. For example, parents sometimes found it intrusive

when children were taught to request preferred items or

Table 6 Overall evaluation of EIBI

Topic/category % of mothers

(n = 32) % of fathers

(n = 21) Examples

Whether EIBI was the right choice for the child and the family

EIBI was the right choice

for child and family

75 90 ‘‘I had heard from ed psychs [Educational Psychologists]

about how EIBI has such a negative impact on family

life, but actually for me EIBI is what keeps me going. If I

sat back and accepted autism I think that would have

much more of a negative effect on my family life than

feeling I am doing something positive to help my

children.’’

EIBI was the right choice for child

but family life affected

13 10 ‘‘It was certainly the right thing for [the child], although it’s

been hard on the family.’’

Whether parents would recommend EIBI

Would definitely recommend EIBI 59 71 ‘‘I would definitely recommend EIBI to other families. It

just changes your life for the better and it changed [the

child’s] life.’’

Would recommend EIBI but would warn

about negative impact on family life

19 29 ‘‘I would recommend EIBI to other families but also warn

them it is hard work and it means disruption to your

family life but if you feel you can cope with that you

must go for it’’

52 J Autism Dev Disord (2009) 39:42–56

123

activities throughout the house, including in private spaces

such as bedrooms. Service providers should ensure that

therapy teams strive to maintain equilibrium between the

most effective behavior change procedures and the least

intrusion on the family (Lovaas 1996). Therapists should

also routinely be familiarized—both verbally and in writ-

ing—with professional and ethical guidelines relating to

such issues as punctuality, reliability, and respecting the

family’s privacy and confidentiality.

Parents’ administrative duties, such as repeatedly cre-

ating new teaching materials, were also reported as

stressful and consumed time that would otherwise be spent

with their family. Service providers could help by offering

more information about how to find resources or by

establishing lending libraries for teaching materials related

to specific tasks in the program curriculum. Similar solu-

tions could be found for other common administrative

problems, perhaps making use of computer technology to

develop common resources (e.g., for timetabling or finan-

cial management).

In terms of support for siblings of children engaged in

EIBI, parents identified many positive effects but also some

areas of concern. Many service providers currently involve

siblings in some therapy sessions, for example teaching

them the skills they need to play with their brother or sister

with autism (e.g., Celiberti 1993; Celiberti and Harris

1993). Older siblings may additionally benefit from

attending support groups that provide them with an

opportunity to talk about their experiences and perhaps find

out more about autism and its impact on families (Lobato

1990; Harris and Glasberg 2003; Meyer and Vadasy 1994).

Furthermore, siblings may find it easier to voice any

uncomfortable feelings outside of the family, allowing

other children in the same circumstances to affirm the

normative nature of what they are experiencing.

Perhaps the most significant implication of the present

research is the need directly to address the emotional well-

being of parents of children on EIBI programs. Although,

as a group, parents may not be at particular risk of

increased distress (Hastings and Johnson 2001; Remington

et al. 2007), there will be some families who will experi-

ence considerable strain as a result of engaging in EIBI.

Some informal support may be offered by the therapists or

more senior team members but service providers could be

more proactive.

One key finding of our research was that over one third

of mothers and a slightly smaller percentage of fathers

were disappointed and upset by the limited progress made

by their child, apparently in contrast to their expectation of

eventual ‘‘normal’’ functioning. It is likely that their

expectations originated with Lovaas’ 1987 research eval-

uation of EIBI, where 47% of children (nine) who received

2 years of intensive ABA (40 one-to-one hours per week)

were successfully mainstreamed among typical children in

regular schools (see also Lovaas 2002).

It is important to note that all of the programs described

in this study, used a workshop training and service delivery

model where a behaviour consultant visits the family every

4–8 weeks to train the family and team to work with the

child at home, as contrasted with the UCLA clinic-based

training and supervision described in the original (1987)

study. Lovaas (2002) expressed his concern about EIBI

service providers who use the workshop-based training

model citing his treatment results of 47% normal func-

tioning (i.e., average levels of intelligence and satisfactory,

unassisted performance in a class for typically developing

children) He wrote that ‘We estimate that valid outcome

data documenting normal functioning from such services,

if completed and made available, would be less than 10

percent’ (Lovaas 2002, p. 397, see also Mudford et al. 2001

and Smith and Wynn 2002 for similar comments). This

lower rate might reflect such factors as high staff turnover,

less frequent supervision than that which occurs in clinic-

based treatment (fewer expert consultations take place and

program monitoring is not as intense), and the use of

therapists and supervisors with less academic background

in learning-based theory and research.

The expectation of eventual ‘‘normal’’ functioning is

unrealistic and unfair to families. Service providers should

therefore ascertain before parents start the program that

they have an accurate and realistic understanding of

treatment efficacy. Parents who are not provided with these

explanations are likely to develop misconceptions about

treatment which could cause unnecessary stress and

disappointment.

There is evidence (Bristol and Schopler 1984) that a

strong social support network, which provides emotional as

well as practical guidance, can act as a buffer against stress,

anxiety, and depression for some parents of children with

autism. Service providers could foster social support in a

number of ways, for example by establishing and evalu-

ating the impact of parent support groups. Regular

opportunities to talk together might help parents of children

on EIBI programs to share practical skills and effective

modes of coping. It may be comforting to receive guidance

from others who have encountered and solved similar

problems or who have the same goal. Other families may

also help to provide respite care, enabling couples to spend

time together away from the stresses of program

management.

Under some circumstances it is possible that some

parents could benefit from focused psychological treat-

ment when potentially serious problems emerge. For

example, one third of the parents interviewed for this

study reported that their marital relationship had deterio-

rated since they implemented an EIBI program. Although

J Autism Dev Disord (2009) 39:42–56 53

123

it is not clear that they blamed EIBI for these changes—

or indeed whether this figure is above the base rate for all

parents with a child with autism—these couples were

nevertheless dealing with considerable stresses and strains

(Hastings 2008). The demands of EIBI may exacerbate

the situation, for example by reducing opportunities for

intimacy, companionship, and privacy. As part of the

overall service provision, senior EIBI staff need to be able

to identify more serious family problems and respond to

them sympathetically, perhaps by adjusting the program’s

demands. If a clear need for specialist treatment becomes

apparent, such staff may be well placed to indicate with

sensitivity the availability of appropriately qualified help

from other professionals.

Some preventative strategies may also be called for.

There is already some evidence that psycho-educational

interventions may be useful for parents of children with

autism (Bitsika and Sharpley 2000; Bristol et al. 1993) but

there may be an additional factor that requires a more

specific intervention approach for parents engaged in EIBI.

Balazs (2005) has suggested that parents well-versed in

ABA theory may find therapeutic interventions based on

other models incompatible with their own therapeutic ori-

entation. Therefore, an approach that draws heavily on a

behavior analytic model may be worth exploring. Accep-

tance and Commitment Therapy (ACT; Hayes et al. 1999)

is one such approach which seems particularly applicable

to the psychological situation faced by parents engaged in

EIBI. Briefly, ACT was created in part to treat those with

chronic levels of distress that might have debilitating

effects on functioning in multiple life domains. ACT

emphasizes acceptance of unpleasant emotions, defusion

from difficult thoughts, clarification of the client’s per-

sonally held values and corresponding goals, and

enhancement of the client’s effectiveness in moving

towards these values and goals. This collection of targets

seen well suited to the parental stress caused by both

having to adjust to the diagnosis of autism and running an

EIBI program in the home.

ACT has already been shown to be a useful intervention

for parents who have children with autism of school-going

age (Blackledge and Hayes 2006). Results showed that

ACT reduced parental depression and distress, helping

parents to better adjust to the difficulties in raising a child

diagnosed with autism. This suggests a line of future

research exploring whether, in the pursuit of increased

treatment fidelity and effectiveness, an ACT-based inter-

vention for parents might be a useful adjunct to EIBI for

the child with autism.

The present study is a rare example of exploratory

research intended to investigate an area on which little

information exists in the literature. Given its fundamental

nature, the results of the research are not useful for

exploring relations between variables. It is also important

to note that the data are descriptive only—reporting par-

ents’ experiences of EIBI rather than exploring outcomes

for children that may or may not be attributable to the

intervention. One potential shortcoming of the current

study is that there are some sources of variability that may

have confounded the results by contributing to family

experiences independently of the putative effects of run-

ning an EIBI program per se. For example, the severity of

the child’s autism may have contributed to poorer family

experiences.

In addition, various aspects of the program or the suc-

cess of the program may have affected parents’

experiences. For example, the child’s progress reported by

the families may have been related to their ratings of how

stressful implementation had been. Furthermore, family

experiences may also be related to the type of supervision

or consultancy received. Some of the problems encoun-

tered by parents may, for example, have reflected

idiosyncrasies of their particular EIBI program or service

provider rather than problems with the general method of

EIBI.

Our descriptive study was not designed to answer these

questions. However, now that parents’ experiences have

been described in some detail future researchers could

develop a survey instrument to enable the systematic col-

lection of parents’ perceptions about EIBI along with

various demographic, child, family, and program-related

variables. Such research would provide particularly useful

information for service providers. Data about the experi-

ences of parents who start an EIBI program but then stop

before they have completed 2 years would also be of sig-

nificant practical value. The parents interviewed in this

study not only chose EIBI but continued it for a significant

amount of time, even though they experienced stresses and

difficulties. Subsequently, the perceptions of parents from

this study may be more positive than those from the entire

population of families who have tried EIBI. Future research

would be useful that focuses on when parents give up on

EIBI, why they do so, and the impact on themselves and

their child with autism.

In conclusion, service providers of EIBI programs for

children with autism currently restrict their treatment

efforts to the child and are not always sufficiently sensitive

to the needs of other family members. Our data suggest

that, to ensure these needs are met, an expansion in the

scope of provision would be beneficial. This could involve

creating and evaluating interventions that provide more

support for families on home programs. Targeted family

support may in turn have a positive impact on outcomes for

children with autism, contributing to the continued evolu-

tion and improvement of early intensive behavioral

intervention.

54 J Autism Dev Disord (2009) 39:42–56

123

Acknowledgments Preparation of this article was supported by a grant from the Esmée Fairburn Foundation (more details available at

http://www.esmeefairburn.org.uk). The opinions presented here are

those of the authors and do not necessarily reflect those of the

foundation. The authors gratefully acknowledge the parents that

agreed to be interviewed and also express their appreciation to

Catherine Carr, who completed the inter-rater reliability coding.

References

Anderson, S. R., Avery, D. L., DiPietro, E. K., Edwards, G. L., &

Christian, W. P. (1987). Intensive home-based intervention with

autistic children. Education & Treatment of Children, 10, 352– 366.

Balazs, T. (2005, May). Home programs for autism and other developmental disabilities. Interventions to support parents and other family members. Paper presented at the international meeting of the Association of Behavior Analysis, Chicago.

Birnbrauer, J. S., & Leach, D. J. (1993). The Murdoch Early

Intervention Program after two years. Behaviour Change, 10, 63–74.

Bitsika, V., & Sharpley, C. (2000). Development and testing of the

effects of support groups on the well-being of parents of children

with autism, II: Specific stress management techniques. Journal of Applied Health Behaviour, 2, 8–15.

Blackledge, J. T., & Hayes, S. C. (2006). Using acceptance and

commitment training in the support of parents of children

diagnosed with autism. Child & Family Behavior Therapy, 28, 1–18. doi:10.1300/J019v28n01_01.

Bristol, M. M., Gallagher, J. J., & Holt, K. D. (1993). Maternal

depressive symptoms in autism. Response to psychoeducational

intervention. Rehabilitation Psychology, 38, 3–10. Bristol, M. M., & Schopler, E. (1984). A developmental perspective

on stress and coping in families of autistic children. In J. Blacher

(Ed.), Severely handicapped young children and their families (pp. 91–141). New York: Academic Press.

Cattell-Gordon, D., & Cattell-Gordon, D. (1998). The development of

an effective applied behavior analysis program for a young child

with autism: A parent’s perspective. Infants and Young Children, 10, 79–85.

Celiberti, D. A. (1993). Training parents of children with autism to promote sibling play: Randomized trials of three alternative training interventions. Unpublished doctoral dissertation, Rut- gers, The State University of New Jersey, Piscataway, NJ.

Celiberti, D. A., & Harris, S. L. (1993). The effects of play skills

intervention for siblings of children with autism. Behavior Therapy, 24, 573–599. doi:10.1016/S0005-7894(05)80319-3.

Dey, I. (1993). Qualitative data analysis. A user friendly guide for social scientists. London: Routledge.

Gold, N. (1993). Depression and social adjustment in siblings of boys

with autism. Journal of Autism and Developmental Disorders, 23, 147–163. doi:10.1007/BF01066424.

Green, G. (1996). Early behavioral intervention for autism. What does

research tell us? In C. Maurice, G. Green, & S. C. Luce (Eds.),

Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 29–45). Austin, TX: Pro-Ed.

Harris, S. L., & Glasberg, B. (2003). Siblings of children with autism (2nd edn.). Bethesda, MD: Woodbine House.

Hastings, R. P. (2008). Stress in parents of children with autism. In E.

McGregor, M. Nunez, K. Williams, & J. Gomez (Eds.), Autism: An integrated view (pp. 303–324). Oxford: Blackwell.

Hastings, R. P. (2003). Behavioral adjustment of siblings of children

with autism engaged in applied behavior analysis early

intervention programs: The moderating role of social support.

Journal of Autism and Developmental Disorders, 33, 141–150. doi:10.1023/A:1022983209004.

Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal

distress and expressed emotion: Cross-sectional and longitudinal

relationships with behavior problems of children with intellectual

disabilities. American Journal of Mental Retardation, 111, 48–61. doi:10.1352/0895-8017(2006)111[48:MDAEEC]2.0.CO;2.

Hastings, R. P., & Johnson, E. (2001). Stress in UK families

conducting intensive home-based behavioral intervention for

their young child with autism. Journal of Autism and Develop- mental Disorders, 31, 327–336. doi:10.1023/A:1010799320795.

Hayes, S. C., Strosahl, K., & Wilson, K. G. (1999). Acceptance and commitment therapy: An experiential approach to behavior change. New York: Guilford Press.

Johnson, E., & Hastings, R. P. (2002). Facilitating factors and barriers

to the implementation of intensive home-based behavioral

intervention for young children with autism. Child: Care, Health and Development, 28, 123–129. doi:10.1046/j.1365-2214.2002. 00251.x.

Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilheim, H.,

Dunlap, G., Robbins, F. R., et al. (1992). Consistent stress

profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22, 205–216. doi:10.1007/BF 01058151.

Lobato, D. (1990). Brothers, sisters and special needs. Baltimore, MD: Paul H. Brookes.

Lovaas, O. I. (1987). Behavioral treatment and normal educational

and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. doi:10.1037/0022- 006X.55.1.3.

Lovaas, O. I. (1996). The UCLA young autism model of service

delivery. In C. Maurice, G. Green, & S. C. Luce (Eds.),

Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 241–248). Austin, TX: Pro-Ed.

Lovaas, O. I. (2002). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.

Maurice, C., Green, G., & Foxx, R. (Eds.). (2001). Making a difference: Behavioral intervention for autism. Austin, TX: Pro-Ed.

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term

outcome for children with autism who received early intensive

behavioral treatment. American Journal of Mental Retardation, 97, 359–372.

Meyer, D. J., & Vadasy, P. E. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore, MD: Paul H. Brookes.

Mudford, O. C., Martin, N. T., Eikeseth, S., & Bibby, P. (2001).

Parent-managed behavioral treatment for preschool children with

autism: Some characteristics of UK programs. Research in Developmental Disabilities, 22, 173–182. doi:10.1016/S0891- 4222(01)00066-X.

Remington, B., Hastings, R., Kovshoff, H., degli Espinosa, F., Jahr,

E., Brown, T., Alsford, P., Lemaic, M., & Ward, N. (2007). Early

intensive behavioral intervention: Outcomes for children with

autism and their parents after two years. American Journal on Mental Retardation, 112, 418–438.

Singer, G. H. S. (2006). Meta-analysis of comparative studies of

depression in mothers of children with and without develop-

mental disabilities. American Journal of Mental Retardation, 111, 155–169. doi:10.1352/0895-8017(2006)111[155:MOCSOD] 2.0.CO;2.

Smith, T. (1999). Outcome of early intervention for children with

autism. Clinical Psychology: Science and Practice, 6, 33–49. doi:10.1093/clipsy/6.1.33.

J Autism Dev Disord (2009) 39:42–56 55

123

Smith, T., Buch, G. A., & Gamby, T. E. (2000a). Parent-directed,

intensive early intervention for children with pervasive devel-

opmental disorder. Research in Developmental Disabilities, 21, 297–309. doi:10.1016/S0891-4222(00)00043-3.

Smith, T., Donahoe, P. A., & Davis, B. J. (2000b). The UCLA young

autism project. In S. J. Handleman & S. L. Harris (Eds.),

Preschool education programs for children with autism (pp. 29– 48). Austin, TX: Pro-Ed.

Smith, T., Groen, A. D., & Wynn, J. W. (2000c). Randomized trial of

intensive early intervention for children with pervasive

developmental disorder. American Journal of Mental Retarda- tion, 105, 269–285. doi:10.1352/0895-8017(2000)105\0269: RTOIEI[2.0.CO;2.

Smith, T., & Wynn, J. (2002). Considerations for selecting consul-

tants for home-based programs. In O. I. Lovaas (Ed.), Teaching individuals with developmental delays: Basic intervention tech- niques (pp. 327–31). Austin, TX: Pro-Ed.

56 J Autism Dev Disord (2009) 39:42–56

123

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