As an autistic self-advocate, I have been following various themes and topics surrounding autism with interest, albeit often from a distance. My knowledge is limited, but I would still like to share some reflections, particularly on the controversial ABA therapy and broader aspects of autism treatment.
The recent criticism of ABA began with a publication by Michelle Dawson, a Canadian autism researcher and autistic individual, in which she criticized ABA as a harmful treatment aimed at normalizing autistic individuals. Dawson argued that scientists should focus more on understanding how autistic brains work, rather than on determining defects. This paper came to mind as I recently read articles warning about the dangers of ABA, intertwined with personal experiences of adults who suffered harm after undergoing ABA therapy in their childhood.
The history of ABA is often associated with Norwegian Ole Ivar Lovaas, who developed the Lovaas approach in the 1960s. Although ABA has evolved over the years, controversy remains regarding its therapeutic approach, particularly concerning its impact on autistic individuals. ABA has gained popularity in the Netherlands and, to a lesser extent, in Belgium over the past decade, despite criticism of both old and new forms. Critics argue that ABA fails to address the underlying issues in education and youth care, instead demanding that children adapt to a system that doesn’t suit them.
The main criticism revolves around the use of rewards and punishments, the alleged goal of normalization, the intensive and costly nature of the approach, and the lack of scientific consensus on the effectiveness of ABA. However, this issue is too complex to be reduced to a simple call for abolition. It is more important to initiate a broader discussion on subjects such as informed consent, harmful therapies, long-term effects of treatments on children and adolescents, treatment goals, and patient rights in mental healthcare.
In my experience, there are several harmful elements in healthcare that stem from a lack of respect for the wishes of clients or patients, the focus on normalizing or suppressing autistic traits, the use of punishment and coercion, the absence of consent, outdated knowledge among healthcare providers, the promotion of pseudoscientific treatments, lack of transparency regarding costs, and a lack of follow-up or aftercare. These harmful elements primarily arise from disrupted communication among those involved in healthcare, rather than from a specific treatment method. It is essential for healthcare providers to establish contact with the client or patient and their significant environment, and to listen to signals, no matter how unconventional they may be, regarding well-being and welfare.
What the ABA debate has taught me is that it remains challenging for all parties involved to timely, respectfully, and equally voice their opinions. The ability to communicate is independent of intellectual abilities or verbal skills. It is primarily the stakeholders who must establish contact and listen to the signals of the autistic person, even if it contradicts the will of the healthcare provider or other parties involved. Unless there are legal reasons not to do so, the needs and wishes of the individual in question must always be heard. Unfortunately, and I speak from experience, there are often obstacles between the theory of listening to the client/patient and the practice of ignoring what the patient/client themselves perceive as beneficial. This is sometimes caused by the ego of the healthcare provider and the expectations of the provider’s parents.
Let us acknowledge that the individual within the autistic person is paramount and that communication and respect are essential pillars in healthcare. We must strive for a situation in which all stakeholders, regardless of their neurodiversity, can equally participate in the treatment process, and where the needs and desires of the autistic individual are respected and taken seriously. This requires an open dialogue, continuous education of healthcare providers, and a culture of collaboration that focuses on the well-being and quality of life of autistic individuals.
The European Autist 