Experiences of Autistic Individuals, Caregivers and Healthcare Providers with ABA-Derived Therapies: a Sequential Exploratory Mixed Methods Study
- Open Access
- 18-07-2025
- Original Article
Abstract
Delen
Introduction
Experiences of autistic individuals, caregivers and healthcare providers with ABA-derived therapies: a sequential exploratory mixed methods study.
People with a diagnosis on the autism spectrum (from hereon: autism) show differences in the domains of social interaction, communication, stimulus processing and limited and/or repetitive behaviors or interests compared to people without autism (Lord et al., 2020). There are various interventions available that can support autistic individuals (Fuentes et al., 2021; Medavarapu et al., 2019). Applied Behavior Analysis (ABA) is one of the most recommended interventions for autistic children in the United States (Anderson, 2023; Graber et al., 2023). ABA in the United States is considered ‘treatment as usual’, whereas in Europe ABA-based interventions are not as widespread (Keenan et al., 2015). Criticism has recently been leveled at ABA, including concerns about compliance, neurotypical norms, and mental health impacts (Anderson, 2023; Graber et al., 2023; Kupferstein, 2018; Mathur et al., 2024).
ABA covers a range of techniques and approaches that are grounded in the principles of behaviorism and behavior modification, such as reinforcement and punishment (Cooper et al., 2020; Matson, 2021). Since its development in the first half of the 20th century ABA has evolved and several types of ABA interventions have been developed, including Discrete Trial Training (DTT), Pivotal Response Training (PRT), Natural Environment Training (NET), Verbal Behavior Intervention (VB), Functional Communication Training (FCT) (Cooper et al., 2020; Gitimoghaddam et al., 2022). A key aspect of ABA involves conducting functional behavior assessments (FBAs) to identify the causes of challenging behaviors and using strategies like replacement behavior training to address them (Cooper et al., 2020; Matson, 2021). However, because of the wide range in interventions, there is a degree of variability and confusion in the definition of ABA (Gitimoghaddam et al., 2022). The basic principles of ABA (such as operant conditioning) are widespread and applied in many everyday contexts (e.g. parents or teachers use these principles in education or child rearing). In this paper, we use the term ABA intervention as an umbrella term for treatments referred to as ABA or its derivatives (e.g., DTT, PRT, FCT) in the Netherlands.
ABA principles can be applied to build skills or reduce behaviors that hinder a child’s development, with the aim of increasing the quality of life for the individual (Cooper et al., 2020). Behavioral therapy for children with autism often focuses on improving communication skills, strengthening social skills and reducing behaviors that hinder the individual’s development (e.g. self-injurious behavior) (Gitimoghaddam et al., 2022). The exact behaviors that are set as goals within the intervention differ per child and are determined in consultation with all those involved following the ABA guidelines (Cooper et al., 2020). This should ensure an approach that is tailored to the child’s unique needs. Proponents of ABA usually point to research demonstrating the short-term effectiveness of ABA in terms of improved communication skills and reduced problematic behavior such as aggression (Gitimoghaddam et al., 2022; Peters-Scheffer et al., 2011; Reichow et al., 2018; Virués-Ortega, 2010; Yu et al., 2020). Early interventions in particular can provide significant and long-lasting benefits in these areas (Eldevik et al., 2009).
However, critics of ABA claim that the intervention attempts to ‘cure’ or ‘correct’ the autistic personality or identity and that the behavioral norms to judge effectiveness of ABA are often neurotypical (Graber et al., 2023; Kirkham, 2017; Leaf et al., 2022; Sandoval-Norton et al., 2019). According to the critics, people with autism are forced (through ABA) to adapt to society and the habits of neurotypical people. A key issue in this debate is who determines the definition of ‘normal’ (desired) behavior (Graber et al., 2023). Advocates of the neurodiversity movement state that interventions should not focus on changing the person with autism but on improving their quality of life (Kapp et al., 2013; Lerner et al., 2023; Pellicano et al., 2022). This is in line with the trend that researchers and clinicians increasingly emphasize the impact of environmental factors on the functioning and well-being of autistic individuals (Mathur et al., 2024). This is called the social model of autism. Based on the social model of autism, interventions should therefore not (only) focus on the person with autism, but also on adapting the environment (Mathur et al., 2024).
In addition to the substantive criticism, there are also studies that question the supposed effectiveness of ABA. Review studies report large individual differences and possibly exaggerated effects of ABA (Peters-Scheffer et al., 2011; Reichow et al., 2018). High care needs remained after completion of the intervention (Reichow et al., 2018) and long-term effects are often unknown. Other studies did not find a reduction in unwanted behavior after ABA (Seida et al., 2009). The methodology and design of studies on the effectiveness of ABA have also been questioned (Reichow et al., 2018; Seida et al., 2009; Shea, 2004).
ABA is mainly studied in the United States (Anderson, 2023; Graber et al., 2023). ABA outside of the US and Canada often lacks regulation and recognition. In Europe, this has led to misconceptions about ABA, preference for eclectic approaches over standardized ABA interventions, and limited consumer protection (Keenan et al., 2015, 2023). This situation is worsened by the absence of governmental endorsement and standardized training of practitioners, contributing to variability in service quality and professional standards in Europe (Keenan et al., 2015, 2023). Unlike the United States, where practitioners are required to meet strict certification standards set by the Behavior Analyst Certification Board (Behavior Analyst Certification Board, 2020), most European countries lack a unified regulatory framework for ABA (Keenan et al., 2023). For instance, in some European countries, ABA practitioners may have only limited training or self-reported qualifications (Keenan et al., 2015), leading to inconsistent application of ABA principles. Furthermore, the absence of an official code of conduct specific to ABA practitioners in Europe (Keenan et al., 2023) means there is less oversight to ensure ethical and high-quality practice. Although most European ABA-practitioners have to adhere to general ethical codes for (youth) healthcare professionals. Given these differences, conclusions derived from US-based ABA research might not apply to ABA in Europe.
Although ABA can lead to positive results such as improved communication skills and reduced problematic behavior (Gitimoghaddam et al., 2022; Rosen et al., 2016; Virués-Ortega, 2010), there are also individuals who report negative experiences with ABA such as overemphasis on compliance training and long-term negative mental health impacts such as posttraumatic stress symptoms (Kupferstein, 2018; Mathur et al., 2024). It is essential to understand both the positive outcomes and potential risks of ABA for people with autism, as well as the diverse opinions and experiences of those directly involved in ABA. The primary aim of this research is therefore to map the experiences with ABA of autistic adults, parents/legal representatives of children/autistic adults and healthcare professionals involved in ABA. This will provide a better understanding of ABA and subsequent implications. We aim to study:
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Which ABA and derivative techniques are offered.
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How individuals with autism, their parents, and ABA therapists describe their experiences with ABA and derivative techniques.
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Whether experiences differ between individuals, groups and between different ABA techniques.
Methods
Study Design
We used an exploratory sequential mixed methods design (Creswell et al., 2017; Shiyanbola et al., 2021), including qualitative research methods (focus groups), followed by quantitative methods (online survey). The qualitative data collection (the focus groups) formed the basis for the quantitative data collection (the survey), thus using a building approach.
Ethical Considerations
The study was approved by the Standing Committee on Science and Ethics of the Vrije Universiteit Amsterdam (Focus groups: VCWE-2023-132R1; Survey: VCWE-2023-187).
Community Involvement Statement
The Netherlands Autism Register (NAR) is a large online database that collects information from autistic individuals and their caregivers. The NAR works closely together with autistic people. We rely on input from the autistic and autism community. Autistic individuals are part of the NAR research team, including an author of the current study, and regularly give feedback through panels. Additionally, in this particular study an advisory team was involved consisting of five people with complementary perspectives or knowledge: three autistic adults (one with personal experience with ABA and one with autistic children); a legal representative of an adult with autism and an intellectual disability and a practitioner (BCBA) with ABA training and intervention experience both in the Netherlands and the United States. The role of the advisory team was to advise the research team based on their own experience or expertise. The researchers themselves are not ABA practitioners and have not received ABA themselves.
Qualitative Study: Method
Qualitative Study: Participants and Recruitment
Participants for the focus groups were recruited through the NAR, organizations offering ABA services and advocacy groups for autistic individuals. The NAR was the primary recruitment channel with invitations to registered participants (n ~ 3500). Social media platforms were also used to post the survey link, although these posts served as supplementary outreach and the actual visibility of posts is unknown.
To ensure clarity and focus, participants were asked about interventions explicitly named ABA or its derivatives (e.g., PRT, DTT, FCT). A general description of ABA was not provided to avoid overgeneralization, as previous anecdotal feedback suggested that participants might include interventions not intended to be ABA (e.g., general reinforcement strategies used in schools). This approach aimed to ensure that participants reported on interventions explicitly identified as ABA by practitioners.
A total of 87 individuals expressed interest in participating in the focus groups. The final selection and allocation of participants to the focus groups were based on the following criteria: informant role (autistic adult, parent or legal representative, healthcare professional), opinion about ABA (positive, negative, neutral), type of ABA (type of intervention) and availability at the proposed dates and times. Groups were formed to include participants with the same role (e.g., parent) while ensuring a diversity in perspectives (positive, negative, neutral) and types of ABA. Each group included up to 7 participants to allow everyone sufficient opportunity to share their views.
Twenty-five participants were selected and divided across five focus groups (see Table 1 for demographics of parents/legal representatives and healthcare professionals). However, three participants (two parents and one autistic adult) did not attend the focus group. As a result, the final composition of the focus groups was as follows: two focus groups with parents/legal representatives (n = 4 in both groups), two groups with healthcare professionals (n = 7 and n = 5) and one group with autistic adults and ABA experience (n = 2). The group of autistic adults with ABA experience was smaller because only three eligible participants signed up. Demographic information of the autistic adults is not included in Table 1, because of missing data of one participant and subsequent privacy concerns for the other. Informed consent was obtained from all participants.
Table 1
Demographic information from the focus group participants per group
Parents/legal representatives of children/autistic adults (n = 8) | Healthcare professionals (n = 12) | |
|---|---|---|
Biological sex | ||
Male | 1 | 2 |
Female | 7 | 10 |
Otherwise | 0 | 0 |
Nationality | ||
Dutch | 8 | 12 |
Non-Dutch | 1a | – |
Age | 46.38 (8.18) | 42.83 (13.83) |
Highest level of education | ||
VMBO/HAVO/VWO | 1 | 1 |
HBO | 4 | 3 |
University | 3 | 6 |
Doctorate/PhD | – | 2 |
Biological sex of child | ||
Male | 7 | – |
Female | 1 | – |
Current education child | ||
Special education | 4 | – |
No education | 2 | – |
Other b | 2 | – |
Initial opinion on ABA | ||
Positive | 4 | 7 |
In-between | 1 | 5 |
Negative | 3 | 0 |
Qualitative Study: Materials
A (semi)structured focus group protocol was created following the literature (Howitt, 2016; Willig, 2021), advice from the advisory team and advice from external research experts with experience in qualitative research.
The following questions were addressed in the focus groups:
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How would you describe ABA?
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What was it like for you to experience ABA?
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What are some benefits/positive things you have experienced during/through ABA?
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What are some disadvantages/negative things you have experienced during/through ABA?
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What do you think ABA should look like in the future?
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What is an outcome of this research that you would be satisfied with?
The focus groups lasted about 2 h per group. These were conducted in November 2023.
Qualitative Study: Data Analysis and Interpretation
Participants’ opinions about ABA (positive, neutral, negative) collected prior to the focus groups were not included in the formal analysis, as the focus group discussions provided a more nuanced understanding of participant perceptions. The focus group recordings were transcribed using AmberScript. These automatic transcriptions were then checked, corrected and anonymized by a student assistant. Transcripts were then checked by one of the researchers (KJ).
Thematic analysis was used to analyze the focus group data. CH and BS independently created codes based on the first two focus groups. The coding frames were compared and, in consultation with KJ, one coding frame was created and used by KJ and CH to independently code the first focus group. Inter-coder reliability was 67,1% following the procedure by Campbell et al. (2013). Due to the exploratory nature of the research, the length of text and the large number of codes this reliability is understandably lower than usual (O’Connor et al., 2020; Roberts et al., 2019).
Qualitative Study: Results
The thematic analysis revealed 6 main themes and 16 subthemes (see Appendix B for an overview of the themes and codes associated with the themes).
Theme 1: The Theory and Definition of ABA
The subtheme ‘The Theory of ABA’ revealed varying interpretations of ABA. Most participants believed ABA is scientifically based, using reinforcers aligned with a child’s interests. While healthcare professionals frequently discussed behavior analysis, parents were less familiar with it. Similarly, the subtheme ‘The Current Definition of ABA’ highlighted confusion among parents about whether elements like punishment and behavior analysis are part of ABA, with some feeling these were absent from the interventions they received.
Healthcare professional: “So and what I notice in discussions that exist about, what is ABA? (…) there is very often an incorrect image of what ABA is and that it is indeed reduced to punishment and reward instead of looking: hey, how can this person function as well as possible, optimally as possible within society?”
Parent: “The core of ABA is behavioral analysis, for example, an ABC, they call it at ABA. But that is indeed very often, simply not– not implemented.”
A subtheme was ‘Normality’, where participants debated which behaviors should change and which are part of the autistic individual. Several participants questioned what behavior is (un)desirable and who determines this? While participants agreed that behaviors like hand flapping should be allowed, some parents and autistic adults noted that ABA teaches children to unlearn such behaviors. Healthcare professionals said they always carefully consider whether behavior needs adjustment.
Healthcare professional: “Why do I want this behavior to be different? Does that really have social relevance for this child? Yes or no? And if we arrive at: yes, we do want to change that, because it has certain social relevance, then you consider: what is the best way to do that?”
Theme 2: The Use of ABA
Many parents and healthcare professionals noted that ABA is often misapplied, as seen in the subtheme ‘Improper Application of ABA’. Participants agreed that ABA should be tailored to each child’s needs, with adapted reinforcers and punishment should not be part of properly administered ABA. They emphasized the importance of a warm, loving environment. Many professionals strived for this, but some professionals and parents described the intervention as cold and unloving.
Parent: “I believe very much in my parenting towards my children in completely, well, as far as that is possible, unconditional love, love and approval never has a condition and I started to feel more and more that because of the approach, the behavioral approach of our youngest, that it became conditional, that too often there were conditions attached to how we treated him and that- I found that unpleasant.”
Other instances of improper ABA application according to participants included the use of punishments, or violations of the BACB code of conduct.
Adult with autism: “And I remember very well that during the first few times of that ABA, that teddy bear was actually pulled out of my hands by the ABA practitioner and that I would never get it back, until I did that assignment or things they wanted to teach me until I– until I did that properly.”
Healthcare professional: “When it comes to applying ABA principles, we all know that this must be done in a very ethical and responsible manner and at the same time I also see around me that that is not always the case.”
Another discussion point was whether learned behavior is truly internalized, or merely performed for a reward.
Parent: “She reacted well to rewards. But to me, it felt a bit like she was just performing tricks to get a marble, becoming almost robotic in doing whatever was expected to get the marble.”
The subtheme ‘Good Healthcare is Collaboration’ highlighted the importance of cooperation between parents, professionals, and agencies, with ABA applied across all areas of the child’s life, for example both at home and at school.
Healthcare professional: “The parents have ideas, the schools have ideas, the therapists have ideas. The child probably also has ideas, they should all sit together and then ensure that a program is developed that everyone can support.”
Participants agreed that ABA is not effective for every child. The subtheme ‘Customization’ highlighted the need to tailor ABA to each child’s unique needs, with its success depending on child factors (e.g. IQ, age) and correct application. Some parents felt ABA works best for children with lower intelligence or who are non-speaking.
Parent: “What is needed? (…) What makes him happy? What is functional? Because what do you want to teach him and what don’t you want to teach him?’’.
Theme 3: Positive Experiences
Several parents found ABA supportive, improving their parenting confidence and their child’s behavior and emotions as shown in the subtheme ‘ABA is Helpful’. One parent credited ABA with allowing their child to continue living at home.
Parent: “Now he is a child who is very manageable and who also enjoys life and radiates and lives day by day.”
The subtheme ‘General Daily Living Skills’ showed that ABA contributed to children’s development and independence. Some parents reported that ABA helped their child learn to talk and master everyday tasks like dressing and brushing teeth.
Parent: “Our son has a severe intellectual disability and (…) (he) was also completely non-speaking, nowadays he speaks, and he speaks functionally, and I am convinced that without ABA he would never have started speaking.”
Theme 4: Concerns About ABA
The subtheme ‘Overburdening of the Child’ revealed concerns from some healthcare professionals and parents about the intensity (frequency and duration) of ABA, while others saw it as essential for effectiveness. Some worried ABA could overload the child or lead to misunderstandings about their abilities.
Parent: “Children with autism already have a slow, slower development speed in general, with exceptions, in my opinion ABA is simply not necessary, or at least not in that way, because these children will get there anyway, it just takes a little longer.”
ABA’s impact on the well-being of the child was also a concern as shown in the subtheme ‘Psychosocial Problems’. A parent and adult with autism indicated that ABA had led to psychological problems such as (social) fears, problems with trusting adults and mood problems.
Adult with autism: “It has only caused me trauma. In the end I didn’t learn anything from it. Everything I know now and what I- and how I can behave now is mainly because of the therapies I followed afterwards.”
The subtheme ‘Criticism of ABA’ highlighted further concerns, especially for non-speaking children who may struggle to express when boundaries are crossed, leading some participants to call for ABA’s abolition.
Parent: “I have children who can talk, so they are not non-verbal. My fear is what is going on in the heads of those children who are non-verbal? And they can’t tell.”
Theme 5: Healthcare
The subtheme ‘Dissatisfied with the Healthcare System’ revealed criticism of Dutch healthcare for its lack of autism knowledge, budget cuts, and failure to listen to parents and autistic individuals. Some parents struggled to find appropriate care, with ABA often being a last resort (‘ABA as the Only Option’).
Parent: “Then we really started looking for what would help, because everything we had used before didn’t help and then we ended up with ABA.”
The potential abolition of ABA raised concerns among some parents and professionals.
Healthcare professional: “Where should these children go if we can no longer offer them ABA?”
The subtheme ‘Criticism of Schools’ showed that special education was blamed for expecting autistic children to adapt rather than tailoring education. Parents noted reluctance from teachers, and some children did not go to school due to inadequate support.
Theme 6: Quality Control
The subtheme ‘training’ showed that the majority of parents and professionals stressed the importance of proper training for ABA practitioners. They criticized the lack of adequate training and mentioned that certificates and diplomas were too easy to obtain. Many parents found it hard to verify which practitioner had the correct training and which requirements this training should meet. There was a call for a register and protected title for ABA practitioners to ensure quality. citing the U.S. as an example.
Healthcare professional: “Professionals who say: yes, I have ABA-principles, I can apply it, I have learned it, or I have seen it somewhere or I have taken a course, and I am just going to do that, without that good background. (…) And then it is up to the parents to decide: yes, which ABA professional is a good one, which one is not, which one has the experience, which one does not have an ethical compass?”
The level of supervision and control of ABA is low, said nearly all focus group participants in the subtheme ‘Monitoring and Control’. Participants expressed a need for a well-functioning control body to monitor quality and enforce general ABA guidelines.
Healthcare professional: “I think we’re also missing something there, right, because the- an ethics committee or something that deals with that, something where you can report things and ask for advice.”
Quantitative Study: Method
Quantitative Study: Procedure
The content of the questionnaire was based on topics mentioned in the focus groups. Both the advisory team and the focus group participants provided feedback on the questionnaire.
Informed consent was obtained from all participants. This study has been preregistered (https://osf.io/saf52).
Quantitative Study: Participants and Recruitment
To recruit participants for the survey, the same organizations were approached as for the focus groups. The questionnaire was distributed to all NAR participants (n ~ 3500) and was open for completion between January 15 and February 11, 2024. Participants were included in the analysis if they had experience with an ABA intervention. In total 33 autistic adults, 45 parents, 28 legal representatives and 113 healthcare professionals were included (see Table 2). Healthcare professionals were on average 34.6 (SD = 9.4) years old and 91.9% was female. They had on average 6.0 years (SD = 5.2) of experience with ABA interventions. They mainly worked with young children with an average to below average IQ, with 72.6% working with non-speaking children, 48.7% (also) working with speaking children.
Table 2
Demographic information of autistic adults and children with Aba experience as reported by themselves
Adults 16+ (self-report, n = 33) | Children 16- (parent reported, n = 45) | Adults 16+ (reported by representatives, n = 28) | |
|---|---|---|---|
Age | 38.5 (11.7) | 9.2 (3.4) | 27.4 (10.9) |
Biological sex | |||
Male | 45.5% | 77.8% | 78.6% |
Female | 54.5% | 20.0% | 21.4% |
Other/don’t want to say | 0% | 2.2% | 0% |
Nationality a | |||
Dutch | 87.9% | 97.8% | 100% |
Non-Dutch | 12.1% | 4.4% | 3.6% |
IQ | |||
Above average (> 115) | 57.6% | 6.7% | 14.3% |
Average (86–115) | 33.3% | 20% | 7.1% |
Below average (71–85) | 0% | 6.7% | 14.2% |
Intellectual disability (< 70) | 0% | 35.6% | 50.0% |
IQ unknown b | 9.1% | 31.1% | 14.3% |
Current education | |||
None | 84.8% | 55.6% | 82.1% |
Regular | 15.2% | 2.2% | 3.6% |
Special | 0% | 33.3% | 14.3% |
Other | 0% | 8.9% | 0% |
Highest level of education | |||
Primary education | 21.2% | 42.9% | |
Secondary education | 33.3% | 3.6% | |
Higher education | 45.4% | 3.6% | |
Different or none | 50.0% | ||
More than one diagnosis | 72.7% | 35.6% | 50.0% |
Quantitative Study: Materials
The survey included questions about demographic characteristics, details about participants’ diagnoses and experiences with ABA (see Appendix A for more details).
We included questions about interventions that are directly related to ABA and are offered in the Netherlands: Applied Behavior Analysis (ABA); Pivotal Response Treatment (PRT; (Koegel et al., 1987; Lei et al., 2017; Verschuur et al., 2014); Verbal Behavior (VB; (Barbera, 2007; Carr et al., 2005); Discrete Trial Training (DTT; (Smith, 2001; Vismara et al., 2010); Natural Environment Training/Teaching (NET; (Halle, 1982); Early (Intensive) Behavioral Intervention (EIBI; (Vismara et al., 2010); Incidental Teaching and Precision Teaching ((Hart et al., 1975, 1980; McGee et al., 1983); Picture Exchange Communication System (PECS; (Bondy & Frost, 1998; Charlop-Christy et al., 2002); Functional Communication Training (FCT; (Carr et al., 2005; Cooper et al., 2020; Ghaemmaghami et al., 2021); and (School Wide) Positive Behavior Support (Hieneman, 2015; Horner et al., 2015). As with the focus groups, participants were asked to report on interventions explicitly named as ABA or its derivatives to ensure familiarity with the intervention.
Quantitative Study: Data Analyses
Chi-squared tests and independent t-tests were used to analyze differences in experiences (satisfaction, results, goals and effect on daily functioning) between groups of participants and differences between interventions (satisfaction and components).
A multinomial logistic regression analysis was conducted to examine the association between type of intervention and intervention satisfaction, with the satisfaction score being the predictor and the type of intervention the outcome variable. The reference category for the outcome variable was “Other ABA intervention”.
Multiple regression analyses were conducted to determine the relationship between the number of years since the intervention was used and the level of satisfaction (per group of informants), as well as the relationship between the number of reported positive and negative elements of the intervention and the intervention satisfaction level.
Quantitative Study: Results
Offered ABA and Derivative Techniques
A total of 106 autistic adults, parents and legal representatives reported a sum of 263 separate ABA interventions. The most common types were: Applied Behavior Analysis (61.3%); Pivotal Response Treatment (33.0%); Early Behavioral Intervention (26.4%) and Discrete Trial Training (20.8%) (see Tables 3 and 4, Appendix C). ABA intervention goals included expanding social and play skills, increasing communication skills, promoting language development, and promoting self-reliance and daily living skills (see Table 5 in Appendix C). Most healthcare professionals reported parent involvement in ABA interventions, but 20% of adults and parents/representatives said parents were not involved (see Table 6 in Appendix C).
Experiences with ABA and Derivative Techniques
On average, participants (autistic adults and parents/representatives) rated their ABA intervention a 6.31 out of 10 (SD = 2.95) (see Table 7 in Appendix C). About half of the participants (45.7%) reported their ABA intervention contained at least one negative component such as “forcing the child to perform tasks or exhibit certain behavior (e.g., making eye contact)” (mentioned by 29.3%) and “forced/involuntary time-out or isolation” (26.1%). Most participants (90.2%) reported positive components like “rewards” (76.1%), “aligning with interests and motivation of the child” (68.5%) and “comprehensive behavioral analysis (i.e., studying the behavior)” (66.3%) (see Table 8 in Appendix C).
A quarter of autistic adults reported the intervention had a negative effect on their daily life functioning at the time, while 11.3% of parents/legal representatives reported this. 22.2% of adults reported a positive effect on their daily functioning while 61.3% of parents/legal representatives reported a positive effect on their child’s daily functioning (see Table 9 in Appendix C).
Differences in Experiences Between Groups
Autistic adults rated their satisfaction with the intervention significantly lower on a scale from 1 to 10 (M = 5.0, SD = 2.7) compared to parents (M = 6.8, SD = 3.0; t(76) = −2.67, p =.009) and legal representatives of autistic individuals (M = 7.0, SD = 2.8; t(59) = 2.87, p =.006).
Autistic adults, parents and legal representatives less often reported positive results compared to healthcare professionals (72.7%, 86.7% and 82.1% vs. 100%, respectively; χ²(3, N = 217) = 25.669, p <.001). Parents, legal representatives and healthcare professionals less often reported negative results compared to autistic adults (48.9%, 32.1% and 48.7% vs. 75.8%, χ²(3, N = 217) = 12.341, p =.006). See Table 10 in Appendix C for all positive and negative results that were reported.
Intervention goals most reported by autistic adults and parents/legal representatives were ‘increasing communication skills’ (70.8%), ‘expand social skills’ (69.8%) and ‘promote self-reliance and daily skills’ (64.2%). Healthcare professionals mentioned ‘increasing communication skills’ (73.5%), ‘promote language development’ (72.6%) and ‘expand social skills’ (72.6%) most often (see Table 5 in Appendix C). Autistic adults and parents/legal representatives more frequently reported ‘reducing self-stimulatory behavior’ as an intervention goal compared to healthcare professionals (20.8% vs. 5.3%; χ²(1, N = 217) = 11.367, p <.001). Healthcare professionals more often reported ‘returning to school’ (38.9% vs. 10.4%; χ²(1, N = 217) = 24.537, p <.001), ‘reducing aggressive behavior’ (39.8% vs. 20.8%; χ²(1, N = 217) = 9.137, p =.003), ‘promote language development‘ (72.6% vs. 52.8%; χ²(1, N = 217) = 8.581, p =.003) and ‘regulate or reduce self-injurious behavior’ (41.6% vs. 15.1%; χ²(1, N = 217) = 18.443, p <.001).
Differences in Experiences Between Interventions
Satisfaction ratings did not differ significantly between ABA interventions. Parents reported their child received intervention 3.5 years ago (SD = 2.4) at the age of 5.8 years (SD = 2.4). Parents of autistic children were more satisfied with interventions that were followed longer ago (B = 0.459, p <.001). Autistic adults received their ABA interventions on average 21.5 years ago (SD = 13.23) at the age of 16.1 (SD = 9.3). They were less satisfied with interventions that were followed longer ago (B = − 0.080, p =.003). Legal representatives reported the person with autism received intervention 20.6 years ago (SD = 12.0) at the age of 6.7 (SD = 3.0). For this group, satisfaction level was not associated with recency of the intervention.
There were no significant differences in reported positive or negative elements per ABA intervention. However, a higher number of positive elements was positively associated with intervention satisfaction (B = 0.495, p <.001) and a higher number of negative elements was negatively associated with satisfaction (B = −0.706, p <.001).
Discussion
This study examined the experiences of autistic individuals, parents and healthcare professionals with ABA interventions using a sequential mixed methods design (focus groups followed by a survey). Overall, results showed varying experiences. Participants had different interpretations of ABA and interventions varied in intensity, duration, parent involvement, goals and components. Autistic adults were generally less satisfied with the ABA interventions than parents and healthcare professionals. Parents of autistic children both expressed positive and critical views about ABA, while healthcare professionals were mostly positive. Often mentioned positive effects were learning new skills and heightened independence, whereas often mentioned negative effects included masking autistic traits and overstimulation.
Quantitative findings showed contrasting views on the impact of ABA on daily functioning and well-being (as mentioned in the theme ‘Positive experiences’), highlighting the variability in how different stakeholders perceive ABA’s benefits and challenges. Most parents/legal representatives reported positive effects, whereas autistic adults reported mixed experiences. Qualitative insights echoed concerns about negative impacts on well-being and psychological outcomes (as mentioned in the theme ‘Concerns About ABA’) consistent with previous literature (Anderson, 2023; Graber et al., 2023; Kupferstein, 2018). This paper highlights the discrepancy between parents’ views and those on the receiving end of the intervention. Satisfaction with ABA interventions varied by stakeholder group with autistic adults generally being less satisfied and more critical than parents and professionals. These findings emphasize the importance of including the autistic voice, as it can differ significantly from parental and professional perspectives (Anderson, 2023).
It is important to note that autistic adults reported on interventions they received on average about 21 years ago at the age of 16.1, whereas parents reported on interventions their child had received on average 3.5 years ago at the age of 5.8. Also, adults were less satisfied with interventions received longer ago, whereas parents were more satisfied with interventions received longer ago. Timing of the intervention (early ’00 versus ’20) may have contributed to different experiences of autistic adults and parents or perhaps adults have had more time to experience the long-term effects of ABA.
Participants were less satisfied with ABA interventions when they included more negative (e.g. forced time-outs) or fewer positive (e.g. aligning with interests and motivation of the child) components. However, no differences in satisfaction were found between the different types of ABA-interventions (e.g. PRT, DTT, NET, etc.). ABA theory emphasizes the use of positive reinforcement and not the use of negative components (Cooper et al., 2020). It seems that the quality of the ABA-intervention (higher quality is assumed in case of more positive and fewer negative components) rather than the type of intervention is associated with intervention satisfaction. This is reinforced by the qualitative data which called for improved training and quality control to ensure ethical and correct practice (as shown in the theme ‘Quality Control’).
Both quantitative and qualitative data highlighted the importance of parental involvement in ABA interventions. Parental involvement is a key factor in the correct implementation of ABA, as shown in the theme ‘The use of ABA’. However, a notable portion of participants reported limited or no parental involvement, suggesting a variability in implementation and quality of the ABA interventions which is consistent with criticism on the implementation of ABA in Europe (Keenan et al., 2015, 2023).
Overall, the findings align with previous research showing mixed outcomes of ABA interventions. On the one hand, participants reported concerns about the ethical application of ABA and its potential negative impact on the psychological well-being of autistic individuals (Anderson, 2023; Graber et al., 2023; Kupferstein, 2018) as 75.8% of the autistic adults and 43.5% of the parents reported negative results from the intervention. On the other hand, participants also mentioned the short-term effectiveness of ABA in improving communication skills and reducing problematic behaviors as described in prior studies (Gitimoghaddam et al., 2022; Rosen et al., 2016; Virués-Ortega, 2010).
Strengths and Limitations
Both quantitative and qualitative data mostly converged, with qualitative data adding additional depth to the survey and showing relatively more negative experiences. This highlights the importance of using mixed methods for a holistic understanding of ABA experiences. The inclusion of perspectives from parents, healthcare professionals and autistic adults enriched the findings, offering nuanced insights into the complexities of ABA experiences.
However, the study has several limitations. Autistic adults with ABA experience were underrepresented in the focus groups and survey. Recruiting autistic adult participants with ABA experience was challenging. Possible explanations for this low participation rate include difficulty remembering or recognizing the exact intervention or intervention name, or being suspicious of scientific research. Furthermore, ABA has only more recently been widely adopted in the Netherlands (2000s vs. 1970 s in the US) (Keenan et al., 2023) which means there might be a limited number of individuals who are currently adults who have received it. Additionally, it was easier to find participants with positive experiences. Possibly those with negative experiences might prefer not to recall or discuss their experiences. This limits the ability to generalize the findings to all autistic individuals. The self-reported nature of the data may introduce bias. As the survey relied on the names of ABA-derived interventions without providing standardized definitions, some participants may not have recognized or accurately identified the interventions they received. Additionally, as the study was conducted within the Netherlands, the findings may not be fully generalizable to other contexts, particularly the US. Differences in regulation, training, and certification—such as the strict standards in the US compared to more variable practices in Europe—likely shape the experiences and perceptions of stakeholders.
Implications
The findings have several implications for practice. Firstly, better training and certification processes for ABA practitioners are needed to ensure consistent and ethical application of ABA principles. Implementing a protected title and a register for ABA practitioners, similar to the system in the U.S., could improve service quality (Keenan et al., 2015, 2023). Secondly, enhancing parental involvement in the intervention process may contribute to better outcomes. Lastly, addressing potential negative consequences of ABA is essential, as individuals may experience psychosocial problems following intervention. Appropriate aftercare, should be provided to those who need it.
This study underscores the importance of ongoing evaluation and refinement of ABA practices to address diverse stakeholder concerns and optimize outcomes for individuals with autism. Future research should focus on longitudinal studies to assess the long-term impact of ABA interventions on the quality of life and psychological well-being of autistic individuals. Additionally, comparative studies between different countries could provide insights into how variations in regulation and training standards affect the outcomes of ABA interventions (Keenan et al., 2015).
Conclusion
This study highlights the complex and varied experiences with ABA-derived interventions among autistic individuals, their caregivers, and healthcare providers. Participants raised significant concerns that merit attention alongside the noted benefits of ABA. By improving training and ensuring ethical practices and monitoring whether people adhere to these guidelines, the potential of ABA to positively impact the lives of autistic individuals can be maximized.
Acknowledgements
We would like to acknowledge the financial support from the Dutch Ministry of Health, Wellbeing and Sports (Grant No. 16-6028-33751). Our sincere thanks go to the advisory team for their invaluable contributions to this study. Their insights and advice, drawn from their personal experiences and professional expertise, were crucial in shaping our research. We also extend our gratitude to the broader autistic and autism community for their ongoing support and input through the Netherlands Autism Register (NAR). This collaborative effort has greatly enriched our study.
Declarations
Conflict of interest
The authors declare that they have no competing interests.
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