Seeing Autism Through The Eyes Of Goretti Retti
Goretti E.Retti is the author of My Box of Chocolates: How My Autistic Child Learned to Read, Write and More. Her book focuses on the challenges, joys and unexpected miracles of raising her autistic daughter Teresa, from teaching her how to speak to applauding her as she won a cursive prize Goretti E. Rerri tells her experience while reminding us all the little ways we can better. In light of World Autism Week, she speaks to Guardian Life about the importance of raising awareness, gender disparity and true acceptance.
Can you describe exactly what autism is?
Autism is a neurological or brain disorder that affects a person’s ability to communicate or relate to people in typical ways. Autism affects each person in different ways and could range from mild to severe, making it a spectrum disorder. Hence it is referred to as Autism Spectrum Disorder (ASD). Apart from the common thread of deficits in communication and social skills linking all people with autism, there are many other traits common in people with ASD. One of them is an unusual reaction to the way things sound, smell, taste, look or feel.
Can you describe what having autism is like?
Having autism from the person’s point of view is like living in your own world, where no one understands you and you do not understand the world. It is confusing. Language is the medium with which we learn and interpret the world, so when one cannot make sense of language, one cannot understand people, situations, or events. That is why, the behaviour of some autistic children become a series of spontaneous, random and sometimes aggressive acts as they try to interact with a world with which they have no understanding of or connection. This is the dilemma of people with autism.
Children suffering from autism in rural areas are less likely to receive medication and professional help. How can parents with no professional help or financial aid support their children?
This is a tough question and I wish I had the answer. I ask myself this question every day! This is not something individuals or small groups can solve in isolation. We need concerted efforts from everyone. I think parent education and training is key. Pending when services become available in rural areas, I would say to parents to take the time to understand their children’s needs and try to meet them one at a time. Autistic children do well with established schedules. So, as a parent, you can set a routine at home that is followed consistently daily. In addition, make a short list of skills the child needs to acquire. Then, focus on one skill at a time, and teach it as best as you can. One way to teach skills is by using positive reinforcement.
For example, if you wish to teach a nonverbal child how to request a desired object, (say food) you can model the skill first. You should point to the food and have the child imitate your action. If the child imitates your action by pointing to the food, give the food to the child and reinforce the child’s response with a reward. (The reward is something you know that the child likes and would motivate him or her to want it again.) Repeat this simple action several times a day and for many days until the child understands how it works. Then check off that skill and go on to the next skill you wish to teach.
My hope is that as we advocate louder and louder for people with ASD, opportunities for parent education and training would open and parents with no financial resources would be empowered to help their children more effectively at home.
Nigeria is still steeped in religious superstition and autistic children in ignorant areas are still being discriminated against. What are the ways you think we can end this?
This is another issue that pulls at my heartstrings. I have heard many personal stories of discrimination and poor treatment of people with autism in Nigeria, due to superstition and ignorance. The ways we can end this is to continue with what we are doing now, which includes openly talking about it. We should lobby the government to train educational staff and to write laws to protect people with ASD and other forms of developmental disabilities. The media can help with intense public awareness campaigns. NGOs and all concerned people should continue with their good works of advocacy. In time, hopefully, when these different parts work together, things will improve.
Do you have any advice for autistic adults struggling right now?
I would say to them these words: You are different but special. You are in the company of one of the greatest people on earth, people like Dr Temple Grandin, author and public speaker; and Mr Stephen Shore, author, musician and public speaker. You have skills and talents which you may or may not have discovered. Think about what you like to do and do it. You have a purpose on this earth whether or not people recognise it. Always do your best. Everything will be okay.
What do you think true acceptance is?
True acceptance of people with autism means loving them for who they are. It means providing appropriate services, supports, and education for them. It means treating them the same way we treat people without disabilities. It means respecting them and appreciating the little they have to offer and helping them reach their full potential.