Written by James Coker | Senior Editorial Assistant, European Medical Journal | @EMJJamesCoker
Disclaimer: The information provided in this article does not imply endorsement of third-party services or products and cannot provide you with health and medical advice. No relevant financial relationship exists between the European Medical Journal and Re:Cognition Health.
The EMJ were pleased to speak to Dr Dimitrios Paschos, Consultant Psychiatrist in Intellectual Disabilities of the Re:Cognition Health clinic, London, UK on Monday 30thOctober, to discuss the introduction of the Early Start Denver Model (ESDM) in the UK, a play-based therapy for young children with autism that was developed originally in the USA. Dr Paschos leads the ESDM programme at the clinic, and he provided us with details of this internationally successful model, as well as his views on and analysis of autism treatments and his general knowledge of autism.
Advancements in Research
Dr Paschos described how the prevalence of autism has increased dramatically over the last 10–20 years, with almost 2 out of every 100 children diagnosed with the condition each year in the USA. This rise is, in part, due to the enhanced ability to better identify the condition, but it is suspected that there are other unknown factors at play. This has led to a growth of research, which are now altering previous perceptions of the condition.
“I think it used to be that autism was seen more like a fixed condition, like a problem in the brain that never changes. That view is being challenged by a number of studies and, for the first time, I’d say we have an understanding of some of the mechanisms involved in autism. Most of the studies suggest a strong genetic component but there are also environmental factors that are becoming clearer; the picture emerging is very complex, but at least something is there. Research on early autism symptoms has also advanced and has influenced the sort of work we do with the ESDM,” said Dr Paschos.
He went on to explain some of the advancements there have been in understanding the mechanisms of the condition over recent years, which have in turn led to the development of experimental biological treatments, some of which through a ‘bench to bed’ approach have led to successful, albeit in small trials. One such study cited by Dr Paschos was on suramin, a drug that is over 100 years old, which has had very promising results in a recent trial in children with autism. In this study, a 14-year-old was able to speak a full sentence for the first time after being treated with the drug, which is a truly remarkable outcome.1 Another example of a substance shown to have a potentially beneficial effect on autism symptoms is sulforaphane, a supplement derived from broccoli sprout extract.2 At the moment there is no licenced medication specifically targeting the core symptoms of autism. Although funding from the pharmaceutical industry to carry out further clinical trials for possible autism treatments has traditionally proven difficult, Dr Paschos thinks this is starting to change due to the rapid growth of research in the area. Indeed, he believes that all the signs are there that, one day, a cure will be found: “Yes, and the reason is that it is a biological disorder, there is no doubt that there is an atypical neurodevelopment involved,” he commented. “There is very strong evidence now that an inflammatory process is involved. So, if it is a biological condition, I expect that one day, at some point, it will be treated. In fact, it may be sooner than we think.”
Diagnosing autism at the earliest possible stage is critical to ensuring current treatment methods are effective, because the brains of toddlers and babies are highly adaptable and are able to acquire cognitive, motor, and social skills in spite of autism. While early recognition of the condition is more frequent nowadays, attitude changes are still required to ensure that the signs and symptoms of autism in young children are acted upon straight away by parents and healthcare professionals, according to Dr Paschos. A big factor in this lack of action is the desire not to label children too early, appreciating that they naturally develop at different speeds. However, this is an attitude that Dr Paschos wants to be consigned to the past, and he encourages parent and carers to react to possible symptoms, such as the child having not developed speaking skills, immediately.
“If you diagnose autism early, when the brain is still developing, when the child hasn’t learned things in the wrong way, the outcome is much better and that is a robust finding, no matter what the intervention: the earlier, the better,” he said. “And the message we are trying to get out from Re:Cognition Health is that if you do have worries, don’t ignore them, don’t wait and see, check it out, because even if you have the wrong diagnosis and apply the treatments we offer it is no harm; in fact, it is something that typically developing children would enjoy and there is even some evidence that such teaching methods can help all children improving their language and social behaviour. It is a play-based therapy, it’s not going to harm someone who hasn’t got autism.”
Dr Paschos recommends that parents who worry their child might has autism but feel their concerns are not taken seriously could take the time to fill out the well-regarded M-Chat3questionnaire and take the results to their doctor or health visitor. The main symptoms that should be looked out for, as outlined by Re:Cognition Health, include the lack of warm, engaging smiles by the age of 6 and thereafter, and no words spoken by 16 months. He also mentioned that a child losing a skill they had previously developed is a major red flag.
The passion Dr Paschos has for trying to tackle autism is partly down to personal experience; he has a relative with the condition, and struggled to find available services to treat the condition at the time. “It started from my personal experience because I wanted a comprehensive and evidence-based, early intervention programme and I couldn’t find any,” he explained. “I had spoken to many top autism researchers in the UK, and all of them said ‘yes, early intervention makes a huge difference’. But when I asked them, where can I find some, they didn’t know.”
The Programme Methods
The ESDM encompasses a number of different methods that have previously been developed for children with autism, such as those based around behavioural therapy and those that focus on the quality of the relationship the child has with their parent or carer. Originally designed by Prof Sally Rogers and Prof Geraldine Dawson from the UC Davis Mind Institute, California, USA, the model has proved to be a huge success in the USA, Canada, Australia, and France for children between the ages of 2 and 4. “It is nothing entirely new in terms of scientific knowledge, but the packaging is sort of collecting the best of all techniques, what works, and offering a clear curriculum, so it is a programme that hasn’t erred from the beginning and most importantly its effectiveness is supported by controlled research,” Dr Paschos described. “It’s not open-ended, going on forever, and you can track clearly if the scientist is making progress because it is a very descriptive set of skills that you can say ‘yes they can do that’ or they cannot. There is no vagueness around it so that makes it easier also for people to plan, to know where they are, instead of having an open-ended commitment.”
The team at the ESDM clinic include a consultant paediatrician, consultant child psychiatrist, psychologists, an occupational therapist, and speech and language therapists. One of the key aspects of the model is that the parents and carers of the children are taught the same play-based therapy methods, and are heavily involved in the process. The underlying philosophy underpinning the programme is for the more basic skills to be developed first before trying to get the child to learn more complex attributes.
Dr Paschos went on to tell us about some of the specific methods used. ‘Social sensory routines’ is one such method. This involves the adult starting a game that the child finds particularly enjoyable and they are motivated to concentrate on, such as singing or jumping around. This is repeated, but with small gaps in between, seeking to provoke a reaction from the child, such as an expectant look or a gesture, to indicate they wish to continue the game. This then gradually develops, with words being introduced in the gaps in anticipation of the game restarting, all the while ensuring it remains fun for the child. It is all about the child initiating the interaction in the gaps between the games, knowing that the fun game will continue if they do so. “That is sort of a breakthrough for many children because, so far, they have been quite passive; things were happening to entertain them, but they didn’t have any input into it,” said Dr Paschos.
Another simple technique used is to place the child’s favourite items in positions where they are clearly visible but just out of their reach, so they can gradually learn to make communicative attempts to get access to it. Eye contact, basic gestures, and speech usually increase as time goes on. Dr Paschos summarised: “Find what they have fun with, but great fun, make it somehow structured, and then having the structure you can repeat and alter the pace, the sequence. Always expecting a little bit more than previously, not too much to avoid disengagement, and always quickly add varieties to established themes and routines. We don’t have scripts and the reason is we want children to benefit from exposure to structured but natural interactions.”
The therapist needs to make themselves a play partner of the child, someone they can trust and turn to for help during play. Great sensitivity is necessary, therapists must be able to pick up even the slightest change in the child’s mood; if they have stopped paying attention to a particular activity for example. The child needs to be constantly engaged and genuinely interested in the games and activities for the treatment to work, according to Dr Paschos. It is these types of very basic emotional and communication skills that need to be established before interactions with other children take place, where they are gradually brought into more normalised environments with typically developing children; this sort of peer-to-peer interaction is where they can then develop and learn very rapidly.
Rate of Progress
The speed at which children complete the programme varies considerably, and we still do not know why some children take longer to make progress than others. “Some children have gone through the whole programme in the USA and Australia as far as I know, within a year,” said Dr Paschos. “Some other children took 2 or 3 years and there are some other children that are quite old already that couldn’t finish it all. The robust finding is that all children can improve regardless of the initial disability. So, we cannot expect that those with milder impairments will get better and the severe cases would not. Severity of autism symptoms or language level at the beginning is not an outcome predictive factor.” Dr Paschos explained that finding predictive factors for slower developers is an area that is attracting much research interest.
Having only just launched in the Re:Cognition Health clinic, there are currently no data available for how successful the ESDM has been in the UK, but judging by the success in other countries, it will be a service much sought after for parents and carers of children with autism.
Dr Paschos noted that at least three-quarters of published studies have shown clear benefits for children on ESDM, including improvements in their IQ, behaviour, and adaptive behaviour. Indeed, a significant number of children on the ESDM programme, as they grew older, were able to attend mainstream schools and required less specialist support.
- LaFee S, Buschman H. Researchers studying century-old drug in potential new approach to autism. May 2017. Available at: https://health.ucsd.edu/news/releases/Pages/2017-05-26-century-old-drug-potential-new-approach-to-autism.aspx. Last accessed: 7 November 2017.
- Autism Speaks. Broccoli-sprout extract shows promise for easing autism symptoms. October 2014. Available at: https://www.autismspeaks.org/science/science-news/broccoli-sprout-extract-shows-promise-easing-autism-symptoms. Last accessed: 7 November 2017.
- M-CHAT. Available at: https://www.m-chat.org/index.php. Last accessed: 7 November 2017.