Having received some positive feedback from my February note, I have decided to continue on and share more information regarding some alternative views of Neurodiversity. Because I was asked last month about evidence based articles as opposed to more personal narratives, which I view as entirely appropriate in my line of work this month’s inclusions are 2 published and evidence based articles. Currently there is a belief that ABA Therapy is a Gold Standard therapy option for helping autistic/neurodiverse individuals overcome some of the more challenging aspects of Autism. I present 2 articles here to show a different perspective and perhaps broaden the scope of our understanding.
The first article is “So what exactly are autism interventions intervening with?” Written by Damian E M Milton, in the UK GAP,15,2,2014 (click Highlighted link for full article) Milton is a neurodiverse individual with several published articles exploring autism and disabilities. This article goes into several interventions, the philosophies behind them, the issues with the research currently available regarding some of them, and the idea that thus far there is no one size fits all or “Gold Standard” therapy.
“A cursory look on an Internet search engine regarding autism will soon have the viewer coming across the notion of intervention, and in particular a narrative of early intervention to help the development of autistic people. Today, the Research Autism website lists over one-thousand named interventions in the field of autism, along with indications of the amount of research evidence there is to support the claims they make. Yet, with so many on the market, it is quite obvious that they are not all trying to achieve the same goals. With discussions regarding intervention, what is often left out, is:
- What is it all for?
- What is one trying to achieve and why?
- Are there ethical issues regarding these purposes, or the means by which one tries to achieve them?
This paper gives an overview of the spectrum of ideology underlying current debates in the field, and the tensions that exist between different viewpoints. I use a number of research studies in the area to highlight these tensions and why they exist by reviewing a number of currently popular practices (eg Applied Behavioral Analysis (ABA) (eg Lovaas, 1987), Relationship Development Intervention (RDI) (Gutstein and Sheely, 2002) and Intensive Interaction (Caldwell, 2014; Nind and Hewett, 1994)), and will offer some suggestions as to a way forward that is more open about such disputes, rather than trying to build a false consensus between them.” (Milton, 2014)
The paper describes theories of learning: Behaviorist, Cognitivist, Humanist, and Social / Situational. It gives information about the theorists behind them, their view of the learning process, the primary locus of learning involved, the purpose of education intended, the role of educator, and practical examples in a very general way.
It describes ABA, the behaviorist theory of learning it is based upon, and how it is typically used in therapy. This paper also describes Early Intensive Behavioral Intervention (EIBI), and Pivotal Response Therapy (PRT) as therapies related to ABA. The paper gives some detail at the purported benefits, and then goes on to evidence based information that lays out some very strong arguments against the therapy (e.g. measuring ability to comply rather than change a behavior; no statistical difference between ABA based therapies and other types of therapies, the fact that there has been statistically significant decreases in impact on IQ scores, measurement for language comprehension, self help skills, and capacity for social contact)
This paper also gives information Relationship and Developmental Approaches. The Cognitivist theory of learning it is based upon, and how it fits into therapy. Therapies that use this theory of learning are TEACCH (Treatment and Education of Autistic and Communication handi- capped CHildren), the Social Communication, Emotional Regulation and Transactional Support (SCERTS), Option, Son-Rise, and Floortime. This paper gives some benefits and some disadvantages of these types of programs, emphasizing that this approach has fallen into the same problems as the behaviorist programs by promising large gains in function based on scant evidence.
The paper states that there is “an issue with all of these approaches is that the scientific evidence does not seem to favor any approach, at least not in terms of making significant changes in communication (often a key target that approaches share). Studies show massive variance in terms of the outcomes of interventions, whatever the purpose they are set to. There is certainly not enough evidence for me to suggest one over another as a one-size-fits-all approach.”(Milton, 2014)
This paper also describes what neurodiversity means to the author “Neurodiversity is variations in neurological development are part of natural diversity, rather than something to be pathologised using a purely medical model of disability, defined by one’s deviation from statistical or idealized norms of observed behaviour.” (Milton, 2014) which is a concept that many adult advocates identify with.
This paper is a great resource for parents, professionals, or autistic individuals seeking a more balanced representation of some of the more popular therapies for autism available now. It also has fantastic references that can be delved into for a greater depth of understanding.
The second Article is perhaps more controversial, but none the less still peer reviewed and published: “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis” Written by Henny Kupferstein of Saybrook University, published January of 2018 DOI: 10.1108/AIA-08-2017-0016 (click Highlighted link for full article) The purpose of this article “is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention.” (Kupferstein, 2018)
In this paper Kupferstein describes Applied Behavior Analysis stating that it is “the most prevalent early intervention recommended by clinicians after a child receives a diagnosis of autism.”(Kupferstein, 2018) He describes how behaviorists conceptualize autism, and use those beliefs to enforce behavior modifications with a rewards-based model to encourage social behaviors that have been deemed appropriate by caregivers and the team. “ABA is behaviorally focused where the client is motivated by the reward to modify a behavior by completing a task without behavioral aberrations predetermined in the treatment goal (e.g. no eye contact, hand flapping, hitting therapist or self) or risk the delay of receiving a reward such as taking a break or computer time.(Kupferstein, 2018)
This paper then goes on to define potentially traumatic events (PTE) and how exposure to PTEs can result in Posttraumatic stress symptoms (PTSS) and that a specific cluster of PTSS can be diagnosed as a posttraumatic stress disorder (PTSD) per the DSM-5. This paper also describes how “autistic people have a sensitivity to the way any situation is initially appraised, and a benign situation which was perceived as harmful or threatening to the individual can become a PTE which could trigger PTSS due to their underlying vulnerability” (Kupferstein, 2018) In other words autistic individuals tend to be more sensitive and anxious in situations and these rewards and punishments can be very distressing even in situations that a non-autistic person may not consider distressing.
The paper goes into a lot of detail about how PTSD works biologically and that Early exposure to trauma effects the biochemistry in the brain, specifically the gamma-aminobutyric acid (GABA) neurotransmitters. It also suggests that there is compelling evidence (via magnetic resonance spectroscopy) that the GABA system is impacted in autism. So that “With decreased GABA receptors, the autistic brain is naturally flooded with serotonin and remains in hyperarousal state. This suggests that an individual’s predisposition to PTSD due to decreased GABA may be further endangered by exposure to stressors that modify the gene, producing a physiological marker, and psychological response. The psychological demands placed on the ABA recipient who has a predisposition for an exaggerated perceptual response leading to physiological alterations may be especially damaging.”(Kupferstein, 2018)
The results of his study found that “Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA.” (Kupferstein, 2018) and that “While the ABA administration may not be traumatic in application, the encounter lingers with lasting fear-related associative memories to the autistic client.”(Kupferstein, 2018)
This paper is a good resource for individuals who may be seeking an answer to why adult advocates feel so strongly agains ABA therapies. I know a lot of people are thinking “well if we can’t use this then what can we use?” or “can we use this if we modify it because sometimes it is very helpful?” which are very good questions that I do not have an answer to yet, but am beginning to explore.
Again I am not attempting to be rebellious, or disrupt anyone’s beliefs; however, I do feel that a wider perspective of neurodiversity and a more inclusive “nothing about us without us” mentality might do more to serve and help a community that feels under-represented.
Thank you as always for your consideration