This week, I went to Flinders University (Adelaide) which is very representative of Australian dimensions… Once off the bus, I had to cross a bridge, a small forest, a gigantic hallway with a food truck (delicious food by the way) and go around a lake to finally reach the point where I was meeting Professor Robyn Young.
Robyn Young teaches psychology at Flinders University. Her interest in autism and Asperger syndrome started very early, as she wrote her thesis on the subject. Her work was used by the Australian channel ABC for a documentary called “Uncommon Genius”.
Robyn Young worked on many topics around autism. This blog post will focus on the Autism Spectrum Disorder (ASD) diagnosis tool she set up for young children. The tool is called ADEC, Autism Detection in Early Childhood, and enables detecting behaviours which can indicate an autism spectrum disorder from a very early age.
What is the ADEC tool exactly?
The ADEC tool clearly identifies behaviours which could indicate Autism Spectrum Disorders in preverbal children (children/toddlers who do not speak yet). Until now, these behaviours were not diagnosed in young children/toddlers due to a lack of awareness and knowledge.
Before beginning her research on the ADEC tool, Robyn Young met 6-month old babies who showed symptoms of ASD. Their siblings having been diagnosed with autism, their parents were already aware of ASD and had reached out to psychologists as soon as their first doubts appeared.
Indeed, these babies didn’t have the behaviour expected of toddlers their age. However, getting a diagnosis was still very difficult. Indeed, at the time, in 1994, several criteria had to be met for autism to be considered:
Language disorders. However, most of the times, a baby that young doesn’t speak yet.
Lack of friendship relations. Again, at such a young age, a baby is only surrounded by his/her family, friendship links are created later on.
There was therefore a need to identify other characteristics to show that such a young baby is different from his/her “typically developed” pairs.
Robyn Young’s team then studied a certain number of elements which could illustrate the diagnosis criteria for children younger than 2 years old. Such elements were imitation/mimicking or the absence of reaction to name. Indeed, as Doctor Catherine Lord said, 90% of the children with ASD do not respond when their name is called when they are 12 months old.
In the end, researchers agreed on 16 criteria. According to the ADEC tool, if the child doesn’t meet these 16 criteria by the age of 2 years old, he/she has a risk to develop ASD. The general practitioner or pediatrician can use these criteria to follow the development of a young child and will be able to detect if there is a risk of ASD. If such a risk exists, the baby and his/her family will be guided towards a specialist and multidisciplinary team, in order to proceed to a full diagnosis.
Many studies have shown the relevance of the ADEC tool. Indeed, this tool allows to know, with a reasonable assertiveness, if the young child has chances to develop ASD while growing up. It only detects ASD and no other types of disorders such as intellectual handicaps, learning disorder or any other type of development disorders. The ADEC tool is really specific to ASD, which is why it is so valuable.
The tool is published in the Australian Council of Educational Research (ACER) and its use is currently being studied in Mexico, China, the USA, Malaysia and Sweden.
How can this method be more accessible to general medicine?
During one of Robyn Young’s conferences, a paediatrician told her he really liked the ADEC tool, but he had never used it, because it was too long and he didn’t have the time to spend 15-20 minutes on it during a consultation.
It was therefore necessary to find a way to make this method quicker so it could really be used. Researchers tried to single out the most relevant criteria in order to create a shorter version of the ADEC tool. As a result, they published the Brief ADEC tool (BADEC) by selecting only 5 criteria.
In Australia, every child is examined when 6, 12, and 18 months old. The reports are gathered in a “Blue Book”, another name for the Personal Health Record. The BADEC 5 criteria are now included in the blue book. They can be checked at medical appointments and they raise general practitioners and pediatrician’s awareness. If a child doesn’t meet these 5 criteria, the health professional should then carry out a further examination by using the longer version of the ADEC tool.
Observation and monitoring has therefore increased, as parents and health professionals are aware and knowledgeable of these criteria.
Needless to say, the ADEC tool is not intended for the families to diagnosis ASD themselves. Its objective is to raise awareness and give the keys to understand their child’s development. If the child doesn’t meet one criteria, it is then important to see a specialized team to get a formal diagnosis.
Why is it important to detect and diagnosis ASD as soon as possible?
There are many advantages to an early diagnosis:
It prevents waiting, going from one medical institution to the next, and families’ stress. Parents will quickly get support and will be able to focus their energy on their child’s needs.
It prevents a multiply disability such as disorder worsening or behavioural complications.
The child will receive an early intervention, and the early diagnosis is key. Indeed, health professionals working with people with ASD noticed real differences between children who received an early intervention and those who didn’t. Moreover, neurological studies showed the plasticity of the human brain during early childhood. An early intervention will be beneficial for learning and will prevent less adapted behaviour to happen.
To learn more about the ADEC, have a look here : https://www.autismspeaks.org/resource/adec
In a next article, I will develop my conversation with Robyn Young and will tell you about an intervention method she set up: SPECTRA!