Many years ago, when I was 15, the same age my autistic son is now, I saw an amazing movie which, without my realising it, shaped forever my way of thinking. The film was called Gandhi. It was directed by Richard Attenborough with Ben Kingsley starring as Mohandas Karamchand Gandhi. It took me years to realise how deep and wise were the thoughts and reflections of this incredible film.
‘You must be the change you want to see in the world’, Gandhi once said. Nothing was going right for me as a mother of an autistic child until my friends and I—parents of autistic children—until I truly understood the meaning of that statement.
Back in 2003 there were services for special people in Bulgaria, but children and adolescents within the autistic spectrum were left behind because of their hyperactivity, challenging behaviour and difficult communication and all that can present for people diagnosed with an Autistic Spectrum Disorder. Parents whose children were low functioning, and also those with hyperactivity, could only access an hour or two a week for their children at special social rehabilitation and integration centres. We needed services and we needed them very soon.
I began meeting more parents whose children were autistic and we decided to form an Association. It was May 2003 when the Association Autism was formed. Its mission was to enhance the quality of life of individuals and their families touched by autism spectrum disorders. Our main objective as a parent NGO was to promote the civil rights of children and adults with autism in Bulgaria and to help them overcome their social isolation and live successfully in the community.
The Association’s first task was to create a community awareness of Autistic Spectrum Disorders within Bulgarian society by disseminating information among parents and professionals about available evidence-based interventions. The second Task was to open specialised centres for autistic children and adults which would welcome people with autism, no matter how serious their condition is. We dreamed about having a place we can bring our kids without the need to apologise for who they are, what they do or not do—a place where we could share our fears and doubts. Nobody teaches us to become parents—especially how to parent autistic children. So we were looking forward to the opportunity to create a place which would provide the services needed for children, adolescents and adults; training for parents, care givers, siblings; help for single mothers who had a child with ASD; and information for treatments, diets, healthy living etc.
‘First they ignore you, then they laugh at you, then they fight you, then you win.’ —another famous phrase of Mahatma Gandi which for me symbolises the process of searching for a place in Sofia suitable for autistic people. It took more than three years to justify the need for this kind of service, to prove that even in a period of tough reforms and economic difficulties we still needed to do everything possible to ensure people with disabilities could live their lives with decency, dignity and respect. It was not easy to explain that autism is not a lifetime sentence and that effort invested in the children would make them less of a social burden in the future. We found people who shared the same vision with us. What appeared an impossible mission became a reality. We found sponsors, people who trusted us and raised the money to rebuild the facility given by the municipality.
In March 2007, with the kind support of our sponsors, Association Autism established the first Bulgarian Centre of Social Rehabilitation and Integration of people within Autistic Spectrum Disorders. This became the first specialised centre in the country which offers autistic people extensive opportunities for learning through physical, occupational, speech, art, music, dance and equestrian therapies. All the specially tailored individual programmes are designed to incorporate the development of communication, self-help, independent and social and recreational skill of children and adolescents. The motto chosen by the staff members of the centre is a quote from Mother Teresa of Calcutta: ‘We can do no great things; only small things, but with great love.’ Now, five years later, I can still feel it’s not only a wise message but it is a state of mind and a scale of devotion.
In order to make the services in the centre free of charge we gifted the centre to the municipality. It is now owned by the government, but all the special activities, like horse riding, summer and winter camps, weekly outings and community gatherings are only possible because of the financial support of Association Autism. Sponsors continue to support the parent association, enabling the development of more services for children and adults with autism. Sponsorship has enabled the Association to provide training and seminars to hundreds of parents and professionals throughout the country. At the same time our professionals were assisted to take part in different autism-related events which enhanced our knowledge of the most promising autistic approaches and interventions. The financial support from our friends and sponsors has made it possible to provide the best environment for the children so they can enjoy the equipment in the sensory room, benefit through computer learning and acquire skills during the individual and group sessions in the specially designed therapy rooms.
The motivated staff team reward each step of accomplishments of the student, no matter how small they may be. Thanks to their efforts, some children have successfully joined mainstream kindergartens and schools. We share in the accomplishments of the children, for example, their first sounds, and their first words. Thanks to the Irish organisations represented in Bulgaria by Mr John O’Gorman, we were able to equip the Centre with an outside playground which helped our children to learn while playing. We were also able to visit different centres and schools in Ireland providing services to autistic children and adults. These visits were strongly motivational. A team of Irish professionals also took part in training psychologists, special teachers and speech therapists working with people with ASD in Bulgaria. The sharing of knowledge and experience is still highly appreciated among different specialists.
For three consecutive years, starting in 2009, we have implemented three special projects for adults with autism called ‘Learning for life’. The different parts of the projects included: social skills workshops, logical thinking workshop, arts & crafts workshop and puzzles. Each year the project was joined by new unemployed autistic adults who were not in receipt any service or specialised treatment support.
In August 2011 the Centre was enlarged with a new additional facility providing special support to 20 adults with autism. The clients are able to enjoy their new cooking and fitness classes there, as well as computer, social skills activities, arts and crafts workshops.
The efforts to develop different workshops or events for adults with autism made by the Association Autism logically led to a European project, with regard to the recruitment of people within the autistic spectrum into the IT sector. The European Software Institute Centre Eastern Europe (ESI CEE), in collaboration with Association Autism, developed a project ‘Development and Piloting a Model for Occupational Training and Employment of people with ASD in the ICT Sector’. The initiative expresses the willingness of IT companies ( members of BASSCOM, the Bulgarian Association of Software Companies) to provide employment for persons with autism in the IT sector. The project is co-funded by the EC.
Young persons with autism and potential employers were trained how to work together in the real business environment. After completion of the training, the youths have been provided with employment in Bulgarian ICT intensive companies. The workshops also included training for the employers on how to work with persons with autism, both theoretical and practical IT training for persons with ASD. All persons with autism and experts dealing with the integration and rehabilitation of people with ASD received certification in computer literacy.
The project provides people with autism the opportunity to move away from the care.home environment during the day to a professional and personal development environment in the IT sector. The companies hiring persons with autism expect positive changes in their employees’ perception of ASD, through pro-activity in the community interaction to pro-activity in organisation goals achievement.
The project is now coming to the end. Eight IT companies provided IT job opportunities including apps for functional testing, content management systems, digitalisation and processing of documents, database filling, and company social activities. Our hope after the pilot project ends is that some of the adults will be able to sign official long term contracts with the companies.
‘The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.’ Association Autism is a small organisation, part of the Bulgarian Association of People with Intellectual Disabilities (BAPID). We keep on dreaming for the future of our children. We try to be the change and make the difference. We move the things forward. There will always be more to be done, but the efforts and the time devoted are worth every single second of it.
Recently I travelled to India, to the land of the extraordinary Gandhi. I visited a special school in Pondicherry. I met devoted parents and creative professionals working hand-in-hand facing similar problems and challenges as all of us do. In my eyes they were overtaking hundreds of obstacles each day. I visit many countries to learn what they do with regards to autism. The most impressive experience for me is that all of us parents of special children, no matter where we are (Bulgaria, Ireland or India)— we share the same dreams and fight the same fights for the rights of the people with disabilities and their families. As all of us parents and professionals share the difficulties of raising and teaching the people with autism, we also want to celebrate together each day their unique world of existence, their different ways of thinking, talents and skills. By creating autism awareness among people in our countries and assuring the quality of the services available for the individuals with autism, we can be sure that they will be surrounded with more understanding, love and support throughout society.