As an autistic adult who is also a graduate student researching autism, I’m a member of two very different communities, and these communities have very different views on many issues.  It’s like they see the world through two incommensurable paradigms, relying on fundamentally different sets of assumptions about the world.[1]  The communities certainly don’t usually spend a lot of time talking to each other, at least in North America (the British are a bit ahead of us on that front).  But as a member of both communities, I’m in a position where it’s easier to see both sides of the story.[2]

Early behavioural intervention is one of these areas where we see radically different opinions from autistic adults and from, well, everybody else.  Many parents, professionals, and researchers tend to take it for granted that early, intensive intervention is essential: the earlier and more intense the intervention, the better.  Researchers and parents might acknowledge that there is a “fidelity gap” between the latest research-based best practices and the actual implementation of these practices in communities, but most seem to think this gap is a relatively minor problem that can be eliminated with some simple tweaks.  These tweaks might not involve reform of the system, but just increasing access to information through better dissemination of research practices.

However, many autistic adults have a completely different perspective on early intervention.  Not all, but many autistic adults take it for granted that ABA-based early interventions are inherently and deeply harmful to the autistic individual.  In some communities of autistic adults, it’s actually forbidden to even discuss ABA, in case the mere mention of the subject ends up causing psychological distress and trauma.

I think that the criticisms raised by autistic people are important and should be addressed, but because there is little communication between autistic adults and research/parent communities, autistic adults mostly hear one another’s criticisms of early intervention.  As a result, some autistic adults seem to have drawn the conclusion that early intervention itself is inherently and fundamentally wrong.  However, I think there’s no reason we can’t work to modify and improve early intervention practices.

This post, then, is my attempt to bridge some of the gaps between the autistic community’s understanding of early intervention and the understanding shared by researchers, parents, and professionals.  It is the first of at least two posts I will write on this topic.  I know I’m not the only person to tackle this issue, but it’s still relatively rare to see writing on early intervention that tries to bridge divides.  I hope that this post will encourage a more open and productive discussion on the topic of early intervention.

The term “ABA” is problematically vague

Before we go any further, what do we actually mean when we talk about “Applied Behaviour Analysis,” or “ABA” – the term for the class of therapies that seem to be at the heart of the early intervention debate?  Are we talking about old-fashioned, directive, infantilizing, compliance-enforcing, Lovaas-style discrete trial training (DTT), like you can see in this video or this video?  In these old approaches, you can see the interventionist seating the autistic person across from them.  You can see the interventionist demanding the autistic person’s attention, then rewarding them like a dog who performed a neat trick when they comply with whatever the interventionist demanded of them.  If you searched for more old videos online, you might even find examples of aversives being used to punish autistic people.

Or are we talking about the newer, naturalistic, “child-led” interventions, like this video of JASPER?  It looks very different, doesn’t it?  I’m not saying we should give up any thought of improving the intervention – we can always strive to improve – but here we see the interventionist interacting with the child on their own level, using toys that the child is interested in.  Rather than demanding the child’s attention, the interventionist engages them naturally in a reciprocal interaction.  The two videos seem light-years apart.

Well, if we just say “ABA,” we could be talking about either or both of the above programs, or something completely different like functional behavior assessment.  “ABA” is an extremely vague term.  Unfortunately, because it’s such a vague term, I fear that autistic adults, researchers, professionals, and parents talk past one another a lot.  The discourse almost seems to devolve into simplistic statements: “We need ABA!”  “But ABA is bad!”  “But ABA works!”  That doesn’t really lead us anywhere.

I think we need to be more precise in our language.  Thus, if we’re talking about old-fashioned DTT, we can call it that.  If we’re talking about the newer naturalistic-developmental behavioural interventions (NDBIs), we can call them such.  And so forth.[3]

In addition to being imprecise, the term “ABA” is also extremely emotionally loaded, which doesn’t help matters.  As I said before, some autistic adults don’t even want to hear the term lest they become traumatized.  I’m pretty sure that, if it weren’t for the divide between the autistic community and everyone else, we’d have realized the term has become toxic and abandoned it long ago.

Now, I realize that people in community settings are likely to use an eclectic mix of practices, and that the term “ABA” can be a convenient catch-all label if those practices are all based on behavioural principles.  However, I think consumers of services should be able to easily figure out exactly what they’re getting, which means a more precise label is needed.  So, for example, if you use NDBI practices but don’t follow a single, specific manualized curriculum, you could call still yourself an NDBI early intervention provider rather than an ABA provider.

What does the intervention do?

Here’s a simple question: When we do early intervention, what’s the goal?

Well, the classic studies on ABA by Lovaas (1987) and McEachin, Smith, and Lovaas (1993) reported that some (but not all) of the participants became “indistinguishable from average children on tests of intelligence and adaptive behavior.”

Okay.  Normal IQ and adaptive behaviour.  That’s very consistent with other research, which shows that ABA-based early interventions (including NDBIs) can increase performance on standardized tests like IQ and adaptive behaviour tests and – crucially – that it can improve language.  Language is probably a major reason why people do better on these standardized tests.

That makes early intervention very useful.  I’m probably never going to forget one occasion when I had the privilege of hearing a very articulate young man on the autism spectrum saying that he was grateful for the long-ago efforts of his early intervention providers, because now he’s able to understand and speak language.  Augmentative and alternative communication, or AAC, is wonderful and I’m fully in favour of it (as are early interventionists), but I find it hard to deny that spoken language is one of the most useful things that one can possess in our society, and I find it hard to deny that an intervention that helps one acquire it is, in principle, a good thing.

If you’re really uncomfortable with the idea of any intervention to change a person in any way, consider this: Are you really going to commit yourself to the position that all interventions that change people are bad?  For example, are interventions to reduce anxiety bad?  Certainly not.  To take an even sillier example, even neurotypical people have to be explicitly taught math skills.  Technically, learning math changes them.  Should we now ban the teaching of math?

Neurodiversity means that we have to accept people for who they are at a fundamental level, not that we can never teach them skills.  If early intervention “cured” autism itself, then I suppose that would be a different matter.  But early intervention doesn’t “cure” autism: it teaches language.  And personally, I would say that language is a skill, and it’s a useful one.

However, there are many people who believe that early intervention can, indeed, “cure” autism.  That’s a belief that goes right back to those studies that showed the normal IQ outcomes – I’m afraid that some people misrepresented the results of those studies as a demonstration that early intervention “cures” autism, and ever since, it’s been impossible to wholly eradicate the idea.  That’s even though we now have research clearly showing that very, very few people who get early intervention lose an autism diagnosis, and that even those who do lose the diagnosis still show other psychiatric symptoms (Barnevik Olsson et al., 2015).

What should the intervention do?

Unfortunately, the mere fact that there are still people who believe that early intervention “cures” autism is a reflective of a bigger problem.  Even if early intervention’s great triumph is really the teaching of language, we can also see intervention turned towards other ends – like, for example, the elimination of repetitive or “stimming” behaviours.

Now, I’m all in favour of intervening to stop things like self-injurious behaviour, but is eliminating stimming – eliminating a fun, pleasure-providing behaviour that can be an important way of coping with a hostile environment – really a good idea?

I think we need to have a serious and open conversation about what sorts of intervention targets are appropriate, and what sorts of targets are inappropriate, and this conversation obviously needs to include autistic people.  While behavioural principles have tremendous power to teach skills, especially when combined naturalistically with autistic people’s own interests and preferences, that is a power that can be misused.  We can misuse the power by targeting things that can’t be changed and we can misuse it by targeting things we shouldn’t be changing.

We also need to consider when it is appropriate to intervene on the individual and when it’s appropriate to intervene on the environment.  The neurodiversity paradigm emphasizes how we shouldn’t just focus on the individual, but instead should consider the interaction between an individual and their environment.  Intervening upon the environment is often just as or more appropriate than intervening on the individual, but the idea of intervening to change the environment is hardly opposed to behavioural principles: after all, isn’t functional behaviour assessment about modifying environments?

There’s probably many other ways that we can improve our early intervention best practices, and listening to autistic people’s feedback is sure to turn up many of these.  For example, we could work on figuring out the appropriate intensity for our interventions.[4]  However, before we get bogged down in these details, let’s not forget that we still have another challenge ahead: How are we going to ensure that our best and hopefully-ever-improving practices actually get implemented at the community level?  I’ll try to answer that question in Part II.

Footnotes

[1] Nick Walker has an excellent blog piece that discusses this idea: http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/

[2] Note the irony here: as an autistic person, I am supposed to have deficient perspective-taking skills.

[3] As a further plus, if we change our use of language, then perhaps the only people who will still use the term “ABA” will be the ones who are refusing to update their practices – and that will give consumers a useful signal.

[4] People say 30 hours/week is best, because that’s what Lovaas did, but we don’t really have evidence to say if that’s really best, or if there might be subgroups who do better with different intensity levels.

References

Barnevik Olsson, M., Westerlund, J., Lundström, S., Giacobini, M., Fernell, E., & Gillberg, C. (2015). “Recovery” from the diagnosis of autism – and then? Neuropsychiatric Disease and Treatment, 11, 999–1005. https://doi.org/10.2147/ndt.s78707

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. https://doi.org/10.1037/0022-006X.55.1.3

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97(4), 359–372.