From institutions to play: how autism treatment got to where it is (and why the UK is still catching up)

A few weeks ago I had a Zoom call with Dr Rob Daniels, a Licensed Clinical Psychologist based in Illinois with over 20 years of experience working with autistic children and their families. I'd asked him about Pivotal Response Treatment, the approach he uses, and how it came to exist. What I got was a history lesson I wasn't expecting. It was fascinating, it was sometimes horrifying, and it completely changed how I understand the landscape of autism intervention.

I wanted to write it up because I think most UK parents have no idea how we got here. And understanding the history helps explain why the options available to us in the UK are what they are; which is to say, limited.

The starting point was unthinkable

In the 1940s through the 1970s, the standard advice from paediatricians to parents of autistic children was to institutionalise them. Rob didn't mince words about what that meant. Children as young as two or three would be placed in residential institutions and, in many cases, never return home. Parents were told to tell people the child had died.

Inside these institutions, the treatment was brutal by any standard. Children who bit were subjected to full mouth dental extractions. Restraints, often five-point leather restraints, were used for most of the day. There was widespread abuse and neglect. And this wasn't fringe practice; this was the standard of care.

Rob pointed out that the Nazis exterminated people with disabilities in death camps as part of the eugenics movement. The institutional approach, while not extermination, came from a similar place: the belief that people with significant disabilities were untreatable and needed to be removed from society. Some historical context, as uncomfortable as it is, matters when you're trying to understand why behavioural intervention was actually seen as revolutionary when it first arrived.

ABA enters the picture

In 1987, a researcher called Ivar Lovas at UCLA published what became the foundational study for Applied Behaviour Analysis as an autism intervention. His sample was 12 children. He used a structured approach called discrete trial training; essentially, sitting a child at a table and drilling them repeatedly on specific tasks, with rewards for correct responses and, in that era, punishments for incorrect ones.

By today's standards, it was rough. Rob described the teaching methods used in the late 1980s and early 1990s in terms that are hard to hear. To teach a child to answer questions accurately rather than just echoing the last word they heard, therapists would offer a choice like “would you like a tickle or a pinch?” The child would echo “a pinch,” get pinched, cry, and eventually learn to choose the other option. The child didn't enjoy being tickled; they just preferred it to being pinched. The whole process was, in Rob's word, horrible.

But compared to institutionalisation, it was progress. Children who had never spoken were making verbal utterances. The field had, for the first time, evidence that autism was treatable through behavioural intervention.

The problems with traditional ABA

The model that grew out of Lovas's work had serious issues, even once the overtly aversive techniques were phased out. Rob described what it looked like in practice: a three-year-old sitting at a table for four to six hours a day, doing repetitive drills chosen by the therapist, with breaks spent in a corner engaging in self-stimulatory behaviour before being brought back to the table. The reward for completing tasks was the break itself.

“ABA, as it was traditionally practised, emphasised the teaching of skills that were easy for the therapist to teach, chosen by the therapist, and did not always have any functional benefit to the child, leaving the client with scattered skills and hours of their childhood taken away while they were forced to learn them.”

The approach was also wildly expensive. Rob described a typical case costing around $70,000 a year, requiring 25 hours a week of trained therapists. In the US, this led to an entire industry: parents hiring lawyers to sue school districts and insurance companies, expert witnesses testifying about the standard of care, and eventually, state-by-state legislative mandates requiring insurers to fund it. Venture capitalists got involved. ABA became corporate.

The Koegels saw a different way

Bob Koegel had been a graduate student of Lovas at UCLA. He was doing discrete trial training with children and adults with autism and he saw the results; some people who had been silent for decades were making verbal utterances for the first time. But he also saw what it was doing to them.

“The children might have learned to speak, but they didn't enjoy the process. The therapy didn't look like children playing or receiving an education. They looked miserable.”

Koegel left UCLA and went to UC Santa Barbara, where he and his wife Lynn, a speech and language pathologist, began developing what would become Pivotal Response Treatment. Their starting insight was that the primary deficit in autism wasn't that children couldn't speak or lacked social skills. It was that they lacked motivation to interact socially. And if you didn't address that first, everything else you taught them would be what Rob calls “splinter skills”; isolated abilities with no context or reason to use them.

The Koegels' approach was to flip the entire model. Instead of drilling, you follow the child's interests. Instead of arbitrary rewards, the reward is directly connected to the communication. Instead of a clinical setting, you work in the child's natural environment. And instead of training an army of therapists, you train the parents.

“The parents are better than I am, because they know their own child.”

The marketing gap

Here's the thing that explains a lot. While PRT was being developed and refined at UC Santa Barbara, the traditional ABA establishment was building a global movement. They created certifications (the Board Certified Behaviour Analyst, or BCBA). They got legislation passed in nearly all 50 US states mandating insurance coverage. They built international organisations with offices in Sydney and Hong Kong. The marketing was exceptional.

PRT, meanwhile, stayed largely within the Koegels' own university lab. For over two decades, the only people who could learn PRT were their graduate students. The approach had a solid and growing evidence base, but almost no public profile.

The war ends (sort of)

By the late 2010s, something interesting happened. The various factions in autism intervention; Lovas's discrete trial training, verbal behaviour, naturalistic approaches, the Koegels' PRT, Stanley Greenspan's DIR/Floortime; had spent decades attacking each other. But researchers began acknowledging that each approach had contributed something valuable, and that the best outcomes came from combining the strongest elements of each.

In around 2017–2018, a landmark paper in the Journal of Autism and Developmental Disorders proposed a unifying framework called Naturalistic Developmental Behavioural Interventions, or NDBI. The idea was simple: interventions should be naturalistic (happening in real environments), informed by developmental science (teaching things in the order children naturally learn them), and behavioural (using evidence-based principles to create change). PRT fits squarely within this framework. In many ways, it was already doing what NDBI described.

Rob's assessment is that this is now the gold standard in the US. The war, as he puts it, is over.

So where does that leave the UK?

Here's where it gets frustrating. All of this progress; from institutions to Lovas to PRT to NDBI; happened primarily in the United States. And very little of it has made its way across the Atlantic in any structured form.

There is no NHS pathway that specifies PRT or NDBI as a standard intervention. NICE guidelines don't name either approach. Over 236,000 people in England are on a waiting list for an autism assessment, with an average wait of around 17 months. Post-diagnostic support is often limited to general advice, psychoeducation, and variable access to speech and language therapy.

Rob's assessment, which he shared carefully and with the caveat that he's aware of his own ignorance of British culture, is that the UK is roughly where the US was 20 years ago when it comes to autism intervention. Not in terms of awareness or acceptance of neurodiversity; the UK has made significant progress there. But in terms of what evidence-based intervention is actually available to families once their child has a diagnosis, the gap is substantial.

In Rob's email to me after our call, he wrote something that stuck with me. He noted that the ABA providers operating in the UK are likely providing older versions of the approach, “with all of the side effects and harm that people dislike about those older techniques.” His recommendation was clear: the path forward isn't through those existing providers. It's bringing the newer, evidence-based approaches directly to families.

That's what we're trying to do. If you'd like to learn more about Pivotal Response Treatment and how it might help your child, read our PRT guide here. If you're interested in hearing about upcoming free seminars and parent coaching with Dr Rob, join our mailing list.

The short version