A study conducted with families of autistic children shows that the diagnosis of autism is made between 3.5 and 9.5 years after the onset of the first signs. Results which underline the urgency of improving the training of front-line professionals in autism screening: health professionals – general practitioners and pediatricians –, but also early childhood professionals, National Education and paramedical professionals.
This study made it possible to describe, via families, the diagnostic journey of autistic children diagnosed before the age of 8 (born in 2012 or 2013) and autistic adolescents diagnosed between the ages of 8 and 15 (born in 2004 or 2005), in Isère and Savoie, with regard to the professional recommendations of the HAS. The average ages at diagnosis of autism are 5.4 years for children and 12.3 years for adolescents, respectively 3.5 and 9.5 years after the onset of the first signs. This study also made it possible to identify a lack of suspicion of ASD by the first professionals consulted and at the end of the screening consultation. This is very frequently carried out by a second-line professional and not a first-line professional.
Recent studies on average age at diagnosis are more often focused on children. It is generally between 4 and 5 years in developed countries. In this study, the delays observed between the first signs identified and the diagnosis are significant, 3.5 years for children, which is comparable to the United Kingdom, but higher than the United States. They are 9.5 years for adolescents with later diagnosis. The delays observed demonstrate major difficulties for families in quickly accessing a diagnosis, even though this can be made as early as 18 months, thus increasing the chances of early and appropriate support.
Numerous discrepancies have been highlighted in relation to the HAS recommendations. The rate of first professionals consulted not suspecting autism is extremely high (94% of first-line professionals and 81% of second-line professionals). The time between the first professional consulted and the screening consultation is 1.6 years for children and 5.4 years for adolescents, compared to the recommended three weeks. This consultation is carried out mainly (76%) by second-line professionals, and not first-line as recommended by the HAS, and results in an absence of suspicion of ASD in more than half of the cases. Finally, the average time between the screening consultation and the diagnosis is 1.3 years for children and 2.8 years for adolescents. Very few studies have analyzed these delays. A recent American study, whose generations observed are close to ours, estimates an average duration of 2 years between screening and diagnosis, a relatively close period.
One of the hypotheses explaining these delays is that of the lack of knowledge, training and tools, in particular of the first professional consulted, most often the pediatrician or the attending physician.. This professional will firstly discuss the absence of anomaly or disorders to be monitored, despite the concerns expressed by the majority of parents. Most doctors do not receive specific training in autism, which would nevertheless be beneficial for developing their competence and legitimacy in screening and supporting children. The same goes for teachers who also lack training and knowledge, even though they are early witnesses to the child’s collective life, generating difficulties in managing the situation in the event of suspicion of ASD.. The knowledge and training of front-line professionals and national education professionals is therefore a major lever for improving the early diagnosis of autistic children.
Considering all the results of this study, the following recommendations would make it possible to improve the diagnostic pathway for autistic children and adolescents.
- First, the strengthening initial and continuing training for front-line professionals – those in early childhood, National Education, general practitioners, pediatricians and paramedical professionals – on the early detection of ASD.
- Secondly, the development of the dissemination of screening tools standardized among health and education professionals.
- Third, the development of information, training and parental guidance for familiesin order to make them active participants in the diagnostic process and to help them with administrative procedures, guidance and access to care.
