Read part 1 here

Published in November 2023

Following on from the first part of this dive into the world of ABA we're looking at the topic of social validity, something which ABA researchers and practitioners have been aware of for some time, but which does not appear to have been addressed in any meaningful way. Indeed, if there had been any attempts to reduce the social invalidity and improve the social validity of ABA with input from the community, surely we would know about it.
 

Wolf describes some key aspects of social validity thus:

• Are the goals of the procedures important and relevant to the desired life-style changes?
• Are the techniques used acceptable to the consumers and the community, or do they cost too much (e.g., in terms of effort, time, discomfort, ethics, or the like)? 
• Are the consumers satisfied with the outcome, both with the predicted behavior (sic) change and with any unpredicted side effects?

“certain members of the larger community are also consumers, especially if the criterion is control of the program's viability. For example, the next-door neighbors (sic) of a group home program for adults with developmental disabilities become its audience, and they can complain to the larger community if they do not like it. The spouses of factory workers can be a supportive audience of a factory safety program, if they like it, or can be destructive critics of the procedure if they do not.”

We can describe ABA as socially invalid with ease using these core principles, which were published in 1978. 
 

Autistic people must be heard and consulted on the social validity of the desired outcomes of any (behavioural) intervention. Many of us subscribe to the social model of disability, under which we as the stakeholders should be the ones defining what is socially important and what is not. Currently the majority of autistic people would not regard the desired outcomes of ABA to be socially important and it is this which forms a large part of the argument for ABA being abusive at worst, and worthless at best. 

I'd like to reference something mentioned in a podcast recording made by an autism professional with Autistic Radio. Richard Ibbotson drew a comparison with the post-diagnostic pathways for children with an autism diagnosis, and those with a diagnosis of hearing impairments. The pathway for deaf children is clear, and focuses tightly on communication. The pathway for autistic children is unclear. It seems, however, that there is almost always a focus on behaviour.

We must agree that behaviour is a reaction to stimulus (receptive), or it is an action performed to advocate for an unmet need (expressive) and that we all engage in behaviour. If the behaviour of autistic children challenges, then it is assumed that the behaviour must be “corrected”, without considering whether the behaviour is receptive or expressive, or both, and what can be done to enable the autistic child to communicate more effectively.

Would the behaviour of deaf children be seen in the same terms as that of autistic children, or would parents or caregivers attribute challenging behaviour to a need for better communication? What of the behaviour of typically-developing children? I think professionals need to shift their thinking here.

When children assumed to be “low-functioning” or with higher, perhaps complex support needs are supported in the right way, huge changes can occur. I have spoken with Otto Lana, a multi-modality communicator who uses a letterboard or types to communicate, and his experience is that with full, two-way communication his frustration has decreased and led to much calmer, regulated behaviour even in regards to his apraxia, which presents huge challenges in getting his body to actually do what he wants it to. 

Nicolaas Paulsen is another example of a non-speaking autistic person who has been able to gain better control and regulation of their body and emotions through having the facility to communicate. His blog is an excellent first-hand source of his experience.

With the support and facility to communicate both these people, and many more like them, experience a reduction in behaviour that is framed as “challenging” but which is actually a completely normal reaction to frustration at not being consulted or included in decisions made about their lives. Enabling autonomous communication has a massive impact on their quality of life and it looks like an “improvement” in challenging behaviour to those around them.

So, what alternatives are there to ABA? That's a question for part 3.

References:
 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1279564/pdf/jaba00020-0015.pdf 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1311293/pdf/jaba00109-0003.pdf 

https://mysilentvoice.blog/2022/06/18/a-lot-has-changed-since-i-can-communicate/

https://mysilentvoice.blog/2021/12/28/346/

*Image credit: mine; one of the AGAPÉ sculptures by Anton Smit at Leonardslee Gardens, Sussex