Project financed by the EEA Grants 2009-2014, as part of the NGO Fund in Romania.
Access to information, specialized services for children with autism and their families, financial resources, a system of social assistance and protection tailored and flexible legal framework to ensure consistency, appropriateness and realism in tackling autism spectrum disorders (ASD) are main needs identified by the Romanian Angel Appeal Foundation (RAA) among parents of children with autism spectrum disorder, in a study conducted in November 2014.
The research, conducted for RAA by the Association Sociometrics – Group analysis of social and economic, was based on case studies – in-depth interviews with parents of children diagnosed with ASD accessing therapy services and a sociological survey based on questionnaires ( 93 respondents, questionnaires with the support of nine NGOs 10 DGASPC the country that offers therapeutic children with autism).
The study included parents of children with ASD aged 0-4 years (26%), 5-9 years (47%), 10-14 years (20%) over 15 years (7%). The parents included in the study were mostly young people 36-40 years (66%), urban (83%), with high school and university (60%). From the perspective of self-assessment resources, 70% of participants feel that they don’t have a very good financial situation but they can manage. 17% of study participants living in rural areas, which highlights the limited possibilities to follow therapy for people with autism who live in the country.
Both case studies and sociological survey shows that, before diagnosis, 66% of families had not heard or knew very little about the condition of an autistic person. For 93% of respondents, the first suspicion of an atypical development occurred until the age of 3 years, and the diagnosis was noted in 72% of cases after a few months of suspicion.
60% of those surveyed believe that after diagnosis, information regarding therapeutic options are extremely important. In terms of quantity and quality of information received after their diagnosis, 40% mentioned that the available data are more or a lot, but 41% said the information received from specialists are old, outdated, and 25% said that the information is hard to understand. Among the sources of information on autism, 53% were appointed psychiatrist, 18% – the Internet and 16% – psychologists. Regarding information on treatment options, are all major sources of information psychologist, psychiatrist, Internet, followed by discussions with other parents in similar situations.
Because the study was conducted through 10 centers for counseling and assistance for people with ASD in DGASPC and nine non-governmental organizations that provide interventions, all parents included in the study had children attending treatment programs accessing therapy services provided by one or more institutions. Given that 83% of respondents from urban areas, we believe that access to therapeutic services and is determined largely by location.
From the perspective of the access to therapy services for children with ASD, 68% of children receive services within a single institution, 32% accessing more services. However, most children going up to 10 sessions / month, or about 2-3 sessions / week, given that international recommendations are 25 to 40 hours per week. 56% of those interviewed children receive services within NGOs providing specific therapeutic services, and 54% of respondents accessing care for their children in the public services.
Nearly half of respondents say that would require the services of a day center for their child with autism (4-8 hours daily) and 30% of parents say they feel the need of respite services (child care in a center, for a few days) to allow them time for themselves.
In terms of access to education, 75% of children with autism, school age, of those surveyed are enrolled in some form of education. Of those who do not attend a form of education, almost a quarter follow training programs for school integration. After the form of enrollment: 64% are enrolled in mass school, 31% study in special schools and 5% are schooled in special classes integrated into mass school.
Only 17% of children attending an educational environment benefits from shadow / caregiver, and half of those parents who are convinced that this attendant benefits is very important for the child’s progress. Of the parents surveyed, 46% said that at least sometimes their child with autism enrolled in school is teased and bullied and 53% say that the school their child is poorly involved in activities to play with peers. According to study participants, teachers are arranged in very large measure to help integrate children (42% of respondents) but only 22% of them say that the teaching staff knows what to do.
Parents concerns about the future are related to the possibility of the child to be independent and to provide the necessary financial and subsistence resources, including access to education and training. The biggest concern of parents about their child with autism is that the child could not take care of himself when he will grow-up (58%), he will not be able to provide financial resources for himself (54%), the father will not have the power to help him (37%) and no one else will have to help him (30%).
Asked what would be the solutions to the needs felt by the whole family, study participants listed mainly: the authorities’ involvement in policy development and assistance programs, consistent training of parents in techniques of behavioral therapy that enables them to help their child be as independent as possible (complementary intervention services provided by specialists), inclusion of children with autism in mainstream education and access to vocational schools, psychosocial support services for the entire family throughout the life, the possibility that parents can maintain a job etc.
In conclusion, our country is still poorly prepared to provide favorable conditions for development of children with autism and their families. We have made progress compared with last year, but further information on autism and specific disease is needed, and also counseling and referrals to specialized services (including easy to understand the information provided) since the first moments when the diagnosis is communicated, training of parents in intervention techniques in order to form a team of professionals and enhance therapy results, financial resources for sustaining interventions, providing a number of hours of therapy sufficient to maximize the functional potential of the children, a system of services for respite for parents, a system of social protection and assistance tailored and flexible and, not least, legislative changes for a coherent and suitable approach to the problems of people with autism.
Study on service needs among parents and young people with ASD was developed under the project “Strengthening of local conceling and support services for parents of children and adolescents with ASD”. The project is developed by Romanian Angel Appeal Foundation, it started at 01/07/2014, lasts 22 months and is funded by the EEA Grants 2009 – 2014, in the NGO Fund.
Coordonator PR, Fundatia Romanian Angel Appeal,
tel: 0721.151.187, e-mail: firstname.lastname@example.org