“I confess that the presence of a mediator significantly reduces the fear of the child’s exclusion and level of misunderstanding”
Who are you?
I am Júlia Gomes, mother of a boy with autism from Portugal.
Tell us about your experience and needs relating to the need of a mediator
I graduated in Social Work and I have a Master in Health Psychology.
My son was diagnosed at the age of 4, until then his development was normal, revealing above average skills in the areas of his interest. At this age, he was able to speak English correctly, identified the alphabet in both languages (Portuguese and English), ability to solve problems quickly and effectively, mathematical calculations that were above expectations for his chronological age, he had a skill in building games of any kind with a preference for puzzles, patterns and many others.
At the age of 4, the first indicators of Autism began to appear, which led to a diagnosis at the ‘severe’ range on the spectrum, manifesting serious difficulties in interaction and communication. In behavioral terms, this means the rejection of touch and physical contact (only I was able to touch him), refusal of eye contact and total absence of communication (today there are 6 words in each of his languages that he uses i.e. for playing, singing and even for translating films or music).
These difficulties of interaction and communication led to serious barriers to his development and emotional stability.
School and family life became a real nightmare but to me, as these parts of life seemed logical as a suitable therapy for my son.
The therapeutic approach was affirmed in the medication he was prescribed, so that the child would stop screaming and allow touching, which for me, was unacceptable. Imagine limiting yourself as a parent, to sedate your child without first exhausting all behavioral and emotional interventions.
The Director of IPSS suggested that I transfer my son’s case to CERCI, I did not do it immediately but as soon as I could, I changed to the IPSS.
At the family level, although the father is a psychologist, I decided that it was essential to set goals for the boy to improve his living situation. Thus, I had to interrupt my 11-year management career.
Lacking financial resources due to my break in employment, I decided to study all the methodologies of behavioral and emotional intervention. Despite not being a therapist, I created tailored materials appealing to the boy’s tastes and interests. Furthermore, I adapted a space at home to work with him on learning and play.
In a few months the difficulties of interaction were improved by 100% and without resorting to medication.
At this stage, I also experienced the breakup of my marriage, as the divorce decision was communicated to me all of sudden and the father ended up going to work abroad.
It forced a complete restructuring of my life. I resumed work at Inovar Autismo, as well as resuming the boy’s therapies and the school monitoring. All this, took a great effort in organizing with the constant threat of failure, often becoming overwhelming.
Today, the difficulties of interaction have been improved substantially. The boy is happy, calm, and stable on an emotional level, the difficulties of verbal communication are maintained despite notable progress.
We (the boy and I), continue to monitor developments and rights with the community. These are issues, which are difficult to access and learn about.
Autism does not scare me or worry me but what still concerns me is the way the world acts when confronted with differences between humans.
In this way, as a mother, navigating my son’s routine and explaining my son’s autism to all the entities and people involved in his daily routine, the collaboration of a mediator will undoubtedly be something precious in terms of ‘Inclusion’. As this will widen the range of opportunities for children and raise awareness. It will also prepare people who work and interact with the boy, which is extremely important.
Why are you interested in the YMI project?
My interest in the YMI project is related to the desire for Inclusion, access to services and opportunities, and training for people who work and / or interact with my son in these places. For a mother and especially for the person diagnosed with autism, the presence of someone who is an interlocutor is essential to describe their needs and reason for certain behaviour, of course, the environment is key too.
Why do you think that it is necessary to create the role of a young mediator for autism?
I consider it important, even essential, to create the role of the young mediator precisely to reach the levels of Inclusion, desired through the objectives of the program:
Train and qualify young university students as agents of change that facilitate full inclusion, enhancing the social participation of children and young people with autism in a variety of contexts in society. Thus, being able to intervene at three levels:
– At the level of young mediator
– At the level of young people with autism and their families
– At the level of professionals from a variety of contexts that will include these young people.
Minimizing and tackling prejudice, certainly confirming that Inclusion is possible for anybody on any point on the autism spectrum. Moreover, improving quality of life to people diagnosed with autism and allowing them to enjoy the rights underlying our human condition: such as being valued, having belonging, receiving affection. All this leads to full Inclusion.
What would be the project’s most valuable information/tool/result for you?
The most important result will undoubtedly be Inclusion and an increased range of opportunities to be enjoyed in the context of my child’s interests and needs. The training of entities and their collaborators in the intervention, interaction, and inclusion of my son.
I confess that the presence of a mediator in my child’s life significantly reduces the fear of the child’s exclusion and level of misunderstanding.
Also, the presence of elements that facilitate a productive routine and family dynamic.