A study of the situation of children with autism and rare genetic diseases will be carried out in Moldova by next April. University lecturer of the State University of Medicine and Pharmacy Jana Chihai, coordinator of the National Mental Health Program, is one of the experts who will work on the study. According to her, the study will be extensive and will embrace a number of aspects, such as the national legislation on health and education. There will also be analyzed and compared the official data with other data collected from centers that provide rehabilitation services so as to determine the exact number of children with autism and rare genetic diseases, IPN reports.
Jana Chihai said official statistics about the number of children with autism generate questions as the data are much lower than the observations and the situation worldwide. The study will analyze the needs of parents too. There will be completed 100 questionnaire with these to learn their medical, social and educational needs. At the end, the study will provide recommendations for improving the legislation by types of necessary services and concerning data collection, screening and diagnosis.
Aliona Dumitraș, executive director of A.O. “SOS Autism” and of the Federation for Rights and Resources of Persons with Autism Spectrum Disorders, said by this project they aim to increase the quality and availability of services for autistic persons and for their parents and caregivers. The study will enable to identify the needs and, based on these, to propose medical care services for children with autism, access to vocational education, access of parents and caregivers to self-training programs.
According to the director of “SOS Autism”, an increasing number of children suffer from autism. WHO statistics show the autists represent about 1% of the population, while Moldova’s statistics show there are 496 autistic children in Moldova. The number is actually much higher. Many of the children with autism are not diagnosed correctly or the parents refuse their children to be diagnosed with autism, preferring such a diagnosis as mental retardation.
Doina Losetski, executive director of the Association “Children of the Rain”, said in Moldova there are no laboratories and specialists who would diagnose a rare genetic diseases. The families with children who suffer from rare genetic diseases do not know the diagnosis for many years and have to often go abroad for examinations. But the costs are very high and the experience is traumatizing for parents. Also, there are no therapies and specialized centers for these children in Moldova. The given children need early intervention to be rehabilitated and other types of intervention to have their life improved.
Ina Cazacu, coordinator of inclusive education programs at the organization “Woman and Child – Protection and Support”, said some of the families refuse to accept the situation of the child and this cannot be assessed and offered specialized assistance. The low incomes of the families is another problem. These families cannot pay for the necessary therapies that need to be done regularly to have an effect. There are no highly-qualified specialists who would work with autistic children. The existing specialists do not know working instruments and how to assist these children at kindergarten or school.
