Opinion and Satisfaction of Families Participating in the Different Stages of Universal ASD Screening in Spain

Background:

Since 2005, Spain has been implementing an early Autism Spectrum Disorders (ASD) detection program in the public health services of Salamanca, Zamora and Valladolid with the M-CHAT (Robins et al., 2001) and from April 2014 with the revised version M-CHAT-R (Robins et al., 2014). This makes the program one of the longest running general population ASD screenings in the world. Nevertheless, the satisfaction of families participating in the screening procedures in Spain has not been reported. It is well known that early identification leads to access to better resources, and therefore, an improvement in the quality of life of the people with autism and their families; yet, there is scarce information regarding the opinion of the families implicated in the different early detection procedures.

Objectives:

The aim of this study is to describe and analyse the opinions of participating families in a universal ASD screening program taking into consideration the different stages in the process (from the moment that the caregivers complete the M-CHAT-R, and before and after the diagnosis is given).

Methods:

Three different forms were created to evaluate the satisfaction of the families collaborating in the ASD screening program. Copies of the first form were distributed to all the paediatricians participating with the study. These forms were randomly distributed amongst the families that signed the informed consent to participate in the study when attending the 18 months and/or 24 months Well-baby-Check-up-visit. The second form was given to the parents that came for diagnostic evaluation after a positive screen, but before the assessment was performed. Finally, the third form was given after receiving the diagnosis.

Results:

306 families responded the first form, and 24 the second and third forms. 90.5% of the parents who completed the first form assessed the global process as a positive/or/very positive experience, and 88.2% of families agreed that the public health system safeguards their child’s health. 90.5% disagreed that answering the M-CHAT-R questionnaire was a waste of time, and approximately 90% of the parents consider including screening programs in the public health system as very important, also agreeing that it is useful to detect problems early in the children’s communication and socialization development. On the second form, 75% evaluate this stage, as positive/or/very positive. However, there are mixed results concerning the waiting time between the phone call to attend the evaluation and the actual day of the assessment was too long, as 33.3% totally agree and 33.3% totally disagree. 100% of the families surveyed after the evaluation agree/or/totally agree in feeling glad about the information given about their child difficulties, prognostic, treatments, etc., during the assessment debrief.

Conclusions:

Most of the families highly valued the universal early detection system for communicative and social problems in their different stages, agreeing that implementation of the screening program is of great usefulness. Professionals and public health institutions should take into account these results, in order to provide and improve resources for children with ASD and their families.