Zarbanoo Rajput BA (Hons), mum to a 15 year old with autism and an active member of ABAAccess4all parental campaign discusses recent research on the use of early behavioural intervention for children with autism across Europe, and reflects on her own experience in the UK.
“Autism Spectrum Disorder is a developmental condition affecting language, communication, behaviour, and socialization. At one end of the spectrum, there are individuals who can live an independent life, at the other end, there are children who start their school life with little or no language, display challenging behaviours, cannot use the toilet and have severe learning disabilities. Inclusion in mainstream education is uncommon for children at the more severe end of the spectrum, they are likely to be educated in a special school or unit.
I am a mum of 15-year-old teenager with autism who received an official diagnosis when he was aged four and half. Whilst it was difficult to come to terms with this diagnosis, we quickly pulled ourselves together and asked ‘what can we do to help our son?’, ‘What is the best thing to do?’ This is where the madness began. Every professional we spoke to had a different opinion. We had no idea who was speaking the truth. It was extremely difficult to access accurate information from a reliable source, let alone be supported with the intervention approach, Applied Behaviour Analysis (ABA), we ended up choosing.
For more information about Autism and Applied Behvaioural Analysis (ABA) please see Professor Richard Hastings blog ‘What is ABA for children with autism for?’
Early intervention across Europe
I was thinking back to our family’s experience when reading a recent research study: Use of early intervention for young children with autism spectrum disorder across Europe.(1 ). The study was written by a total of 40 researchers from 32 Universities across Europe. The purpose of this research study was to get a picture of the use and the weekly number of hours of early intervention/therapy provided for young children with autism spectrum disorder (ASD) in a number of European countries.
Parents from 18 European countries took part and completed an online survey, which asked about current use of intervention (type and number or hours per week) received at home, school and in a clinic setting such as a child disability clinic. In total, 1680 parents who had seven-year-old children or younger with autism spectrum disorder took part. Only parents of children up to the age of seven were in the study as by this age the majority of European children have started school.
The type of interventions the study was interested in included: behavioural intervention, developmental and/or relationship based intervention, speech and language therapy, occupational therapy, other educational and psychological interventions, and parent training. When parents were asked about their use of a specific intervention type, it was noted that similar/identical therapy programmes were available with different names. Therefore, intervention examples were given specific to each country, such as Applied Behaviour Analysis (ABA) and Pivotal Response Training (PRT), when asked within a broader category question such as ‘is your child receiving behavioural intervention?’
The study found that there is variability in the use and intensity of early intervention between European countries. Seventy four percent of parents from the UK reported that their child received an intervention. Indicating that 25% of children in the UK were having no early intervention at all. The average intensity of early intervention in the UK per week was 6.97 hours. Poland was found to have the best early intervention rates in this study, with 98.7% of children having some form of intervention before they are 7 years old.
Eighteen percent of parents of children with autism from the UK were reported to be receiving a behavioural intervention (7.54 hours on average per week), 8.1% a developmental or relationship based intervention (4.57 hours), 62.2% speech and language therapy (1.11 hours), 26.1% occupational therapy (1.24 hours), 23.4% other educational and psychological intervention (7.93 hours) and 23.4% were receiving parent training (1.61 hours).
The study concluded that while there is evidence that each and every child with autism needs to access individualised, multidimensional and multi-disciplinary intervention, almost 10% of parents who took part in this study throughout Europe, reported no early intervention at all for their child. The UK was one of the worst performing countries, with 25% of children studied receiving no early intervention. The authors reiterate the importance of training professionals in identifying and treating ASD as early as possible so families are not left unsupported in day-to-day life.
Our experience of early intervention
The study outlined above suggests that children receiving behavioural intervention in the UK are receiving an average of 7.5 hours of therapy per week. While this is a good start only 18% of UK parents access this level of behavioural intervention. This number is low and reflects our own experience as well. Currently, post diagnosis, parents are referred to Early Bird and Early Bird Plus programmes, which are run by the leading autism charity, the National Autistic Society (NAS). Referrals are also made to other services such as Speech and Language Therapy, Occupational Therapy, Educational Psychology, and specialist Communication/Autism Teams. We received a diagnosis back in 2005-2006. Note, no referral was made to a behavioural specialist. It seems ABA or other evidence based behavioural interventions are not routinely offered by the NHS for young children in the UK. Reading this, one might think how lucky we are to have so many services available to our families. Unfortunately once you go through them all, you discover that, it is all flash and no substance.
Once we managed to take the diagnosis in, we started reviewing literature about autism interventions. The child psychiatrist we saw at diagnosis said that the more the child’s language develops, the better the prognosis. We were very concerned about Elias’ future. Aged four and half at diagnosis, Elias though had some language, was very far behind his peers. He couldn’t label colours, numbers, he had no understanding of phonics, and had major problems with haircutting and bath time, to name a few. Our family needed help, Elias needed help, help I was hoping to find going through the Early Bird Plus programme. Unfortunately we didn’t see the progress we were hoping for, so we began looking elsewhere.
We were fortunate to have heard about someone who had a special educational needs tribunal bundle to share with parents. The wealth of information available in this bundle opened up our eyes. There were studies showing positive results for children with autism receiving an ABA programme, including one, which was focused on the four to seven age range, which applied to us. Other studies were for younger children. Overnight, we became familiar with names of researchers and research studies we would never have known were out there. However, the minute we started mentioning to professionals the term “ABA” and our interest in using this approach with our son, all doors started to close in our face. We were steered towards a programme called Treatment and Education of Autistic and related Communication handicapped Children, also known as project TEACCH. ‘What did we do wrong?’ From our perspective, we made an educated decision about the best intervention option for our child, for which we were punished. We strongly feel more evidence based early intervention in general is needed in the UK, with currently too many children and families missing out.
Parents working together using research evidence
In the UK, many parents of children with autism I have met are very unhappy about the situation with autism diagnosis and early intervention, hence the need for ABAAccess4ALL campaign. ABA Access4All aims to improve UK understanding of and access to professionally managed ABA therapies for children with autism and other disabilities.
Many parents I have spoken to feel they have been misled about ABA and are angry about their child/children’s precious time being lost. Professional recommendations about early intervention for children with autism in general suggests that maximum gain can be made between the ages of two to four. However, diagnoses are often provided late or when early diagnosis is made, accurate information about effective interventions is not given to parents.
I believe that parent-led campaigns for UK services to make available evidence-based approaches for children with autism are an excellent way to use research evidence to give children the best start in life. ABAAcess4all is an example of one such campaign with an evidence-based focus. We will continue to strive for better services in the hope that all children and families receive what they need without parents being driven to bankruptcy, physical and mental exhaustion, and experiencing significant strain on their family relationships”.
©Zarbanoo Rajput 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.
1. Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., … & Fuentes, J. (2015). Use of early intervention for young children with autism spectrum disorder across Europe. Autism, Vol 20 (2) 233-249