We were contacted by a lovely lady who wishes to remain anonymous due to the sensitive nature of her story (and battle) to get UK ABA services for her disabled son. Have you got a similar story to tell? Please reach out and let us know!
As a mum to an autistic boy who has had a slow and painful journey towards language, I wanted to share my story with other autism mums.
When my son Robbie (pseudonym) was first diagnosed with autism at the age of two, we employed an NHS SALT who specialised in autism.
She came to our home privately (£75 an hour) once a week for six months. She prioritised what she called the ‘pragmatics of language’. We played with noisy toys and bubbles with the aims of promoting eye contact, non-verbal initiation, and turn-taking. She introduced PECS, but although he quickly grasped the concept of handing over the right card for the right item, he never made one sound.
In retrospect I suspect she had missed out a key component of PECs: the reinforcement of speech. But it occurred to me early on that producing speech was very difficult for him.
The SALT gently suggested that he’d probably never talk. PECs, Makaton and visual timetables were her main recommendations. Ultimately, she and I parted company. I wasn’t ready to give up on Robbie being able to talk.
I felt that the SALT failed to take into account three key deficits affecting my son’s communication: first, as he’s autistic, he had no “social desire to please”, so it was going to take more than just “being a good boy for teacher” to motivate him to speak; second, like some autistic children he has an additional diagnosis of verbal dyspraxia, meaning actually forming speech sounds is so difficult he avoids it if it at all possible; and lastly, his autism meant he had very poor imitation skills.
After the SALT left, we enrolled Robbie for eighteen months in a TEACCH school, with regular SALT input. It was nice, but again no progress was made on speech or behaviours. My observation was that TEACCH worked best for children already at the high functioning end of the spectrum.
Just after starting the TEACCH school, which was only part-time, another mother recommended ABA. An ABA supervisor (£35 an hour) and tutor (£15 an hour) started working with Robbie in the afternoons, at home. Here’s what they did:
First, they “paired” with my boy. They established themselves as fun people to be with, ready to take him to the swings or park – his absolute favourite places. They called activities which motivated him “reinforcers”.
Then they started work on his non-existent imitation skills. They would say “Do this, Robbie” and clap their hands. Then immediately they would hand-over-hand prompt his little hands to clap. For this he would get massive reinforcement (in his case, a crisp or sweet worked best). The sweets though were paired up with lots of praise and cries of “good boy”, so that we could quickly fade out the food and rely solely on social praise.
Eventually, they were able to stop the hand-over-hand prompts when he began to understand and respond to verbal instruction alone. They moved onto gross and fine motor imitations – raising arms, hopping, pinching finger and thumb together etc.
After just 3 weeks of ABA therapy, he knew that “do this” meant “do what I am doing”. What Robbie loved above all was being pushed on the swing. So, one sunny August day they said “Do this Robbie – puh” – making a “puh” sound. He tried to imitate it, poorly at first of course, but even a vague attempt at a P sound got him a reward – a huge push on the swing and loads of excited smiles and praise.
This technique was used for other sounds like “c” for crisps, “s” for sweets, then gradually extended to whole words and phrases, like ‘push me’. He was taught to say “open” to get into his toy cupboard. Then “open” for doors, packets of crisps, presents etc. This ensured the skills he was learning generalised across different settings and people.
UK ABA therapists refer to such language as ‘mands’. As SALTs, you call it ‘requesting’. For me they were simply Robbie’s first words.
So that dealt with issues of motivation and imitation. The verbal dyspraxia was addressed by months of painstaking work getting Robbie to model and shape sounds in front of a mirror or the tutor’s own face. His efforts were met with different reinforcers as he moved from sounds to words and phrases. Work on these vocal imitation skills (known as “echoic”) made a massive difference to his clarity.
Now he’s 10, he has literally thousands of words and an increasing repertoire of phrases. He can make his needs known and even participate in simple conversations.
He is now very clear in his preferences – particularly where he wants to go and what he wants to eat (“I want to go home” “fishfingers and ketchup”)!
ABA has effectively taught Robbie how to learn – not just language, but also reading, writing , numbers, computer work – all have been taught using ABA techniques.
I regularly share my story with other mums, who have had equally good results from ABA – some with quite stunning outcomes. Yet to my dismay, I have met nothing but disapproval and discouragement from health and education professionals.
They say, in dark tones, that ABA will “destroy family life”; that it is “very intensive” (subtext: what a cruel mum I must be to put my son through all this). I have been told that UK ABA will never be funded, despite its good results. I am treated almost like a cult member – as if the ABA tutors have brainwashed me and Robbie’s progress is just in my imagination despite the fact that we have the data to prove that these changes have taken place.
The stark contrast between what I had been told and what I had seen with my own son was difficult to reconcile, so I did some research. I found that there is a vast body of research – spanning four decades – which documents the effectiveness of ABA for autistic children.
A number of systematic reviews of evidence-based practices in autism conclude that input of the sort my son received has the strongest evidence base of any comprehensive intervention (Eldevik et al, 2010; Rogers, 2008).
Indeed the RCSLT (Royal College of Speech and Language Therapists) itself endorses ABA for children with autism (see Resource Manual for Commissioning and Planning Services for Speech Language and Communication Needs).
Searching the website NHS Evidence brought up over 500 references to the efficacy of ABA-based interventions.
So why, despite the current emphasis on ‘evidence-based practice’ within the NHS, are so many SALTs dismissing UK ABA out of hand?
And why are we not looking to the US and Canada, where ABA is more mainstream for autistic children so that companies like Microsoft even fund it in their employee health benefits?
I genuinely don’t understand why we are so virulently anti-UK ABA in this country when I have seen such life-changing results for Robbie and others.
Eldevik, S., Hastings, R.P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Early behavioural Intervention for children with Intellectual Disability. Journal of Child and Adolescent Psychology 38 (3) 439-450.
NHS Evidence http://www.evidence.nhs.uk/default.aspx
Rogers, S.J., & Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.
Royal College of Speech and Language Therapists. Resource Manual for Commissioning and Planning Services for SLCN http://www.rcslt.org/