Over the course of the next two months we will be bringing you a series of articles on autism spectrum disorder (ASD); the challenges that these young people and their families face and, most importantly, how can we contribute to their education and integration into Romanian society.
We are working on a very exciting project that will enable young people with autism to live more autonomously. Stay with us through this journey and see how you can be a part of this campaign.
What is autism spectrum disorder?
Autism, or autism spectrum disorder (ASD), refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication,as well as by unique strengths and differences.
We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.
The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism. While there are individuals that can function independently in society,there are also people that remain nonverbal or have an intellectual disability.
But first, some facts…
· Around one third of people with autism remain nonverbal.
· Around one third of people with autism have an intellectual disability.
· Certain medical and mental health issues frequently accompany autism. They include gastrointestinal disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.
How supportive is the Romanian legislation?
A 2009 Romanian research paper stated that “children with autism are invisible in contemporary Romanian society; there is even a lack of statistical data regarding children with autism in Romania” (Haiduc 2009, p. 27)
A 2010 legislation in Romania “Legea nr. 151/2010” includes specialised services for children with ASD. However, diagnostic criteria do not include adults in Romania. Thus, in Romania, there are no published statistics on the number of children or adults diagnosed with ASD.
There is a lack of legal framework to support families and young adults over 18 years. In the recent years, there have been several additions aimed at including young adults and offering them equal employment opportunities (ordinul nr. 707/538/2014), and diagnosing the degree of handicap (ordinul nr. 762/1992/2007).
Despite some laws aimed at protecting the interest of children and families with ASD, families with children on the spectrum are effectively on their own.
In order to learn how to face this condition, both children with ASD and their parents need education and a support system. On top of that, families take on an enormous financial burden, as one third of these children will never be able to take a job.
There are 30 000 persons diagnosed with ASD in Romania. ASD cannot be cured but early diagnosis and therapy can help up to 47% of the children lead an independent life. Without therapy and education autism symptoms and dysfunctional behaviors worsen over time.
A story of team effort ...
The lack of governance on education dedicated to children with ASD is why different non-governmental organisations need to step in and compensate. There are several foundations doing their part in educating the children with ASD as well as their families. One of these foundations, Crystal Children, is our long-term partner.
Ever since we started working together on 2008 we are proud to say we have accomplished great things:
· We have received a 148.000 euro grant from Achmea foundation.This has gone towards setting up a day care center with qualified personnel to educate ASD children. The funds made this education center sustainable and has allowed the centre to take on more participants and hire more therapists.
· We have sent qualified therapists to train local personnel, and facilitated meeting with counterpart organisations in the Netherlands.
· We have also facilitated collaboration between Global Aware and Crystal Children. This collaboration resulted in the complete renovation of a therapy center. Moreover, it has solidified plans for our new project: a sustainable residential farm that will provide employment to young adults on the spectrum.
We are excited about what we have accomplished so far and what we are still working towards. We believe that challenges propel us further. Join us on our upcoming project with CrystalChildren. There will be an article dedicated fully to the residential farm in our third blog post in this series
What is autism
Resources in Romanian
Haiduc, L. (2009). School integration of children with autism, Acta Didactica,Napocensia, Volume 2, Supplement 1
Laws protecting the children and their parents