Early identification, early intervention

Since autism was recognized as a major national cause in 2012, this neurodevelopmental disability and its multiple issues have been in the spotlight more than ever. And with good reason, the French National Authority for Health estimates that one child in 150 is born with autism (i.e. 6,000 births every year).

Among the many challenges facing expert communities is that of early detection. Indeed, « the earlier we detect a child’s autism, the sooner we can offer intensive intervention tailored to the child’s difficulties, and the better the child’s chances of developing and integrating into our society, » stresses Julie Brisson, lecturer in developmental psychology at Rouen University, who wrote her thesis on the early signs of autism (1). A point confirmed by Nadia Chabane, child psychiatrist in charge of the unit for the detection, diagnosis and early management of autism spectrum disorders (ASD) at Robert Debré Hospital: « We act at a given moment when the child’s brain is endowed with a functionality known as cerebral plasticity, i.e. it is capable of modifying itself according to what its environment brings it, and adapting new functionalities » (2). These stimuli given to the young child will enable him to boost his weak points, improve his communication, socialization and ability to fit in socially, even if, as Nadia Chabane reminds us, we shouldn’t expect a miracle either. The child will remain autistic for the rest of his or her life. The potential of early intervention has been confirmed by research (3), so much so that the 3rd Autism Plan (2013-2017) (4) also advocates early detection. Another key argument is financial gain. Julie Brisson reminds us that early detection leads to financial and social savings in terms of support.

No more elusive looks in the early months

If early detection of autism is becoming a priority for many health and childcare professionals, it’s because this disorder can manifest itself well before the third year, and even before the third month! According to a study published in 2013 in the prestigious journalNature(5), these infants’ eye contact, a fundamental marker of social interaction, tends to deteriorate as early as the second month of life. To reach this conclusion, the researchers followed two groups of around fifty children, from birth to two years of age. One of these groups, who had an older brother or sister with autism, was at high risk of developing a form of autism in turn, unlike the other group of children. The authors of the study analyzed and precisely traced their eye movements using the« eye-tracking » method. The verdict: the children who later turned out to be autistic looked less and less into the eyes of their interlocutors. Over time, even in the first six months, it became increasingly difficult to make eye contact. At the same time, autistic children smile and vocalize less than other children. Like other authors, Julie Brisson has detected this same labile visual attention by analyzing numerous home movies of families who later learned that their child was autistic: « In the laboratory, we have special tools that enable us to break down children’s behavior frame by frame, » she explains.

Less social behavior

Research has shown that signs of autism are easier to spot in the second year: « We’re seeing fewer eyes on people. Another key sign is the absence of a spontaneous, regular response to the call of a child’s first name. That’s why the first reflex is to check that the child’s hearing is good!

Julie Brisson has also observed that autistic children are just as likely as typical children to engage in« proto-imperative  » pointing, when the child seeks to obtain an object that is out of reach. For example: « Give me the water bottle, I’m still thirsty! On the other hand, these children showed much less « proto-declarative » pointing than typical children, when the child seeks to elicit the adult’s comment about an object. For example, « Look, Mommy, how high that plane is flying!

Similarly, children with autism are less likely to share their interest in an object, such as a toy, by bringing it or showing it to the adult. As for play, Julie Brisson points out that it is often stereotyped: the child may show particular interest in one part of the object, the wheels of a truck for example, to the detriment of the rest of the toy. There may also be a tendency to stack or align objects. What’s more, the games are more sensory-motor than functional.  » An autistic child will, for example, be more inclined to put a truck in his mouth, to bang it against the floor, rather than to roll it, »stresses Julie Brisson, who nevertheless wishes to warn professionals and families:« We must nevertheless be cautious in the sense that each child has his or her own developmental trajectory! What’s more, not all signs are necessarily visible in all children.

Poorly trained doctors

Unfortunately, the challenge becomes even more complex when you cross that fine line between theory and practice. In real life, early detection can be an obstacle course for families. According to the results of the Doctissimo-FondaMental survey of March 2013 (6), in 80% of cases, it’s the family itself that detects the first signs. More often than not, the adventure begins in the general practitioner’s or pediatrician’s office. Parents are worried about their child’s behavior. According to Marion Leboyer, Director of the FondaMental Foundation and Head of the Psychiatry Unit at the Henri Mondor University Hospitals in Créteil, many parents « complain that they are not listened to or taken seriously by the medical profession (…) This leads to a major delay in diagnosis, as parents will often wait a long time before consulting a doctor about the disorders they have observed »(7). It should be remembered that doctors, like other professionals working with children and early childhood, are still poorly trained to diagnose this disorder. 1 in 3 doctors would not know what autism is (8), while 1 in 4 would still consider this disability to be a psychosis, whereas the French National Authority for Health defines it as a neurodevelopmental disorder (9). When properly trained, « the general practitioner or pediatrician makes an initial identification and refers the child to a team at a Centre médico-psychologique. If not, parents wander from one professional to another until they find the right person, » laments Julie Brisson.

The invaluable role of early childhood professionals

However, lack of training is not the only culprit behind this diagnostic wandering. A recent North American study, published in the journal Pediatrics (10), highlights the fact that the short duration of consultations with doctors largely hinders their analysis of the development of the children in their care. Even psychologists trained in early childhood and autism are unable to detect signs of autism in such a short period of time. The authors of this study therefore recommend including parents and professionals who regularly work with children in this early detection process (11).

A point confirmed by Julie Brisson: « Professionals in early childhood settings, who work with children for long periods of time, are in the best position to observe them and inform their parents ». The « Autistes sans Frontières » and « Autisme France » associations have produced a didactic brochure for early childhood professionals (12). The M-CHAT (13) can also be used as a basis for reliable, early identification of the signs of this disorder. This is a questionnaire for parents on the daily behaviors of children aged 16 to 30 months. While this tool can be used by clinicians in the office or in a facility, the answers need to be interpreted by a trained team. Finally, let’s not forget that some early childhood and childhood professionals continue to oppose the idea of screening, arguing that identifying a disorder amounts to labeling and stigmatizing the child.

Diagnosis, the final step

The team of nursery professionals suspects autistic signs in little Nathan’s behavior. The aim is to raise parents’ awareness of their child’s development and encourage them to consult a specialized team, without necessarily evoking a diagnosis of autism. After screening, it’s time for diagnosis – the ultimate step. Once the child’s family or professional environment has managed to identify and take into consideration the warning signs of this disability, the diagnostic process begins. « Autism resource centers are the best people to talk to. Associations can also provide families with information and guidance, but only at a later stage, explains Julie Brisson. A multidisciplinary team, including a paediatrician or child psychiatrist, a psychologist, a speech therapist and a psychomotricist, is needed to make the diagnosis. While screening can be carried out between 16 and 24 months, the diagnosis can be made from 36 months onwards. Currently, the average age of diagnosis is 4 years.

This key stage in the diagnosis marks the end of a first chaotic journey, and the start of a second, when parents are confronted with the painful question of the quality of… the intervention (14). The (mis)adventure continues.