The ABA Conference in Paris
ABA International has a conference every two years – somewhere in the world to make it more accessible for those who do not live in USA, and to encourage interest in ABA. Paris certainly needed some education in ABA, given that children with ASD are treated horribly in France. Only 20% have any sort of education, and 30% are in institutions and psychiatric hospitals where they are subjected to psychoanalysis and in some cases the archaic treatment of “packing” in cold humid sheets is still used, despite its cruelty. There is an organisation ‘Scientists against the use of Psychoanalysis in Autism’ trying to turn the tide. It is good to remember just how far we have come in Australia, and we still have lots of room to improve.
ISADD was well represented with Giedre and Darija from Lithuania, and Renee from Melbourne as well as Daryl and myself. Renee also presented a paper entitled ‘How can Mindfulness Enhance Outcomes in Children Engaging in an ABA Program’ which is part of her work towards a Ph. D at Monash University. Hundreds of papers where squeezed into day and a half, and we had to choose and pick and then share impressions. The overall impression was that everyone was placing more emphasis on working with the very young and the at-risk toddlers, and focussing on the emergence of social communication. It was good to note that this is exactly what we are striving towards at ISADD and focussing on the more naturalistic presentation of ABA, which is more suited to toddlers, before the ASD symptoms become too strong. There was also more emphasis on parent involvement.
There were some papers that impressed and I will put them under headings:
Parent involvement
The emphasis is turning towards working with younger children even if in some places the under 2s may not be eligible for funding. However, research data is also not always clear and most work was with children 3 years up. Working with babies and toddlers places importance on parent training and working in the home. We need to ask questions: What is effective under 3? What other reinforcers can be used? Systematic replication under 3 needed? Barriers for families need to be addressed and parents’ ability to cope with strategies assessed. It is important to adjust as needs are not the same.
A paper from the University of Houston reported on a pyramid approach, teaching parents to first work on the management of the behaviours of their own child then teach another parent and mentor them. This had only partial success as parents learned to not reinforce inappropriate behaviours but the pyramid training failed at the third level, and the ability to do functional analyses was inaccurate. It does, however, suggest a model that may be improved on and may well be useful given the lack of resources. Another from Utah state Uni uses the Telehealth approach for assessment and intervention, using local educators trained with role play and videos to then coach parents. A suggestion to avoid the problems with data collection was tried effectively in another paper suggesting the use of texting instead of paper reporting.
Treating autism symptoms in infancy through parent mediated intervention was also emphasised by a paper from Queens Uni in Belfast (Tanner et al). It stressed the need for early identification and to look for disengagement of attention, eye contact, response to name, and repetitive behaviours. The best early indicator was parent concern. Average age of diagnosis in UK, Canada & USA is 4.5, and I guess similar in Australia. Yet siblings have a 18-20% risk and should be watched. The task is not simple as onset varies and parents are not always reliable, and no single symptom stands out. Variance suggest that subgroups or phenotypes exist and present differently.
Language
There was a good paper on establishing early vocalisations in infants using contingent reinforcement and ‘mother-ese’ was used to check if the infant was typical in reactions. A deficit in this early mother/child vocal interaction leads to a collateral effect on other social skills (Neyme et al.) In another session, a video dramatically illustrated the need for reciprocity with an infant responding very positively to mother’s imitation of sounds he made yet ignoring other sounds she initiated.
Another good paper on language (Torabin from Uni of California-DVIS) addressed the language difficulties. 30 to 40 % of children with ASD are nonverbal and others have difficulties with disfluency and the flow of speech. This was attributed to the cognitive load of processing, resulting in an imbalance between load and capacity as working memory was not strong enough to both retain and manipulate. For many the difficulty decreases with age and maturity. The study compared three groups; children with ASD, children with ADHD, and children with both ASD and ADHD. The combined group was most dysfunctional with lots of word repetition. The cognitive load, not the level of working memory differentiated between the groups. The study concluded that comorbidity caused most difficulty and cognitive load was a major factor.
More on communication: a paper by Kunnavatana et al – Uni of Texas pointed out that proficiency in requesting needs to be defined as ability to use responses taught independently and child needs self-determination. Individual will for asking is needed. Thus card prompts which are visible will need to be faded successfully if independence is to be achieved. Emphasis is placed on desire to communicate, not just ability.
Young & Howard addressed the role of Speech and Language Pathologists in the comprehensive, intensive ABA training of young children with ASD. However, the emphasis needs to be on the ABA program and not eclectic. The point was made that IQ matters – for later quality of life; it is a human rights issue, has financial impact, is a medical necessity – yet 50% remain basically nonverbal. Speech sets the right goals, shows how to prioritise, assess responses to programming. Without language our children get left behind.
Joint Attention
A number of papers focussed on joint attention. Monlux et al, Stanford Uni. used operant conditioning to establish joint attention skills so as to facilitate social referencing in infants and toddlers. Joint Attention was defined as using eye contact and gesture to share an experience. They pointed out that eye gaze to objects develops early, at 4 months, social referencing emerges at 9 months, and by 9 to12 months gesture should be used to communicate negative/positive messages of encouragement or warning, eventually using face only. However, they also point out that depressed mothers tend to be deficient in play and social referencing and thus learning opportunity may be reduced. That certainly is a pointer at how we should support parents in the early stages post diagnosis and not place demands without support.
There was emphasis on social joint attention which was defined as “ability to coordinate attention between interactive social partners” and included shifting attention to item and back to parent, directed gaze, didactic attention, following gaze, pointing, and later the development of attention between three people, greetings and sharing affect. Hansen et al. pointed out the difference between responding and initiating joint attention and the problem with research in the area as definitions varied. Children with ASD are taught declarative pointing and requests but the more subtle aspects are hard to teach, yet are important for later social behaviours. Another paper described training parents successfully to achieve joint attention with their child, but pointed out the importance of embedding this into the natural environment if it was to be maintained.
Peer /sibling mediated training
A strategy for teaching engagement in classrooms was using peers as communication coaches. This started with one to one session then moved to the classroom. It was important to use items that were fun but not too engaging as that caused distraction. The trained peers achieved successful joint attention and a big difference to baseline. This depended on ensuring that peers were reinforced well, and that teachers get trained to undertake this themselves. Given the success of peer teaching it becomes obvious that it is important to teach parents to teach siblings and allow parents to be coaches
A group of papers headed by Charlop from the McKenna College focusses on children with ASD at play with siblings and peers, using innovative behavioural interventions. Research supports peer mediated intervention. Siblings also can teach with targets including imitation, answering and joint attention. Video supported teaching of language with scripts was used to teach the use of past tense and plurals. Siblings did better than adults. Drama, including 5 minute scripts, costumes and role play raised motivation and brought evidence of improvement in 5 minute probes in play sessions. Social skills were generalised and initiated. It was also pointed out that teaching bike-riding improved skills as children were able to join in. To achieve, this a special bike was invented to speed teaching. In all this the social validity of the programs was emphasised as it included social reciprocity, not just skills.
The efficacy of early intervention
Howard pointed out that ABA prevents intellectual disability in young children with ASD yet many still need persuading. She urged practitioners to use graphs to show results and chart treatment effectiveness and to quote school placement and reduced support needs. Measures which convince are interaction with neuro-typical peers, number of goals mastered and criterion referenced gains. Normed assessment tools should also be used and explained in age equivalences as they are more meaningful. It is important to demonstrate the narrowing of the gap. Graph the results to show progress. We need to ‘decrease the zone of modifiability.’ Another paper from the same group pointed out that with the WHO recognising a world-wide prevalence of 1/160, school based individual intervention programs will be needed as well as programs to cover lifespan needs.
Centralisation brings supervision, cost effective use of resources, cuts on overheads, and is less disruption to families. It allows for peer involvement and can have children helping children. But it will need to face the challenge of generalisation.
Gina Green made a strong point that ABA interventions need to be seen as behavioural Health treatments and thus need to be included in insurance schemes across the world.
ABA is a new category and it needs to be seen as a “medical necessity” which reduces hospitalisation and medications needed. The evidence of effectiveness is there – controlled studies – not for VB or naturalistic interventions. The meta analyses are proof of IQ improvements - cognitive and adaptive behaviour improvements, but it takes 36 hours per week over two years.
Eldevik (Oslo) summed it up pointing out that across studies data repeats itself but many hours are needed: 30-35 was optimal and at lowest 25. However, individual data varies a lot with some regressing even with after 40 hours while others gained with just 10 hours. EIBI (Early, Intensive, Behavioural Intervention) shows larger gains though language rates differed. Gains were there regardless of age – but the late starters could not catch up with the peer group.