Emile Gouws joins us this week as Affect Autism’s first interview with a self-advocate! Emile is a special educator, a PhD student, vice chairman of the National Executive Committee of Autism of South Africa, and represents neurodiversity at the Commonwealth Disabled People’s Forum. We met at the recent DIR/Floortime conference held by the Interdisciplinary Council on Development and Learning where Emile is a Senior Advisor and presented, “Living with Autism Spectrum Disorder: An Autoethnography of Emile Gouws“. It is a true pleasure to have Emile on the podcast this week.
A Self-Advocate's Inspiring Journey
It was a long journey of hard work and determination
Emile’s story is incredibly inspiring. At his DIR conference presentation there wasn’t a dry eye among the listeners. As parents, we are all so worried about our children’s future ability to be independent and Emile gave us such hope. Emile credits where he is today to the loving support of his mother who never stopped believing in him. He says it was very hard work but filled with opportunity. His progress didn’t happen overnight.
He was diagnosed at age 3 1/2. It started with observations by a special educator. Emile wasn’t communicating, not making any eye contact, he isolated himself, used non-verbal hand gestures to communicate, and was frustrated with other students. The school suggested an evaluation, occupational therapy, and speech therapy. From there it was a process of continual therapy, including with an educational psychologist until age 9. He had therapy every weekend.
Emile also had extracurricular activities to develop his fine and gross motor skills including swimming, tennis and karate. He was in a mainstream school, but he couldn’t communicate spontaneously and planning and organization was a big challenge, he says.
Students noticed that he was different since he couldn’t share experiences with his peers. He knew some words but had trouble with pronunciation and couldn’t put together sentences and communicate spontaneously until he was 15 years old!
He would use non-verbal hand gestures and hand flapping to express his emotions and he says it was his mother’s responsibility to keep him calm and figure out why he used these hand gestures.
In the classroom he struggled due to sensory overload including sensory blindness, and the struggle to listen to instructions. His mother reviewed daily school lessons with him every afternoon until late at night as a routine, Emile explains.
Fruits of the process
Emile was raised in an Afrikaans-speaking home in South Africa but was exposed to English from a young age because his grandmother ran a daycare that included English-speaking children. Emile also enjoyed reading and his mother would provide him with books that were of interest to him to constantly stimulate his learning.
Emile was enrolled in a remedial high school since his parents couldn’t afford a private school and there he started spontaneously communicating. He attributes this jump in development to the smaller class sizes, more attention and more simplified and organized work. He was able to function academically. When he’d come home from school, his mother would ask him how school was and he would use non-verbal hand gestures.
One day, he answered his mother in full sentences and it made his mother very happy, Emile says. This goes to show you how exposure to communication and extra attention can impact what develops, he states. In high school he finally was able to work independently and feel confident in completing his work, he says. He received a university exemption after his final exam. He decided to study education, and the rest is history, he asserts.
‘You and your child against the world’
I postulated with Emile that it seems to me that many parents really aren’t understanding what our children on the spectrum are experiencing and that if they are non-speaking, people might assume that they can’t speak and don’t understand language.
It was continuous therapy, continuous hard work, and continuous stimulation from his mother, Emile explains, that brought him where he is today. Emile has an incredible appreciation for what parents face raising a child on the spectrum. Emile’s mother never gave up because she believed in his abilities to function independently in society, despite all of the challenges in the community, in public, and with family when others judged her or Emile.
Emile is a big proponent of intervention through a community of practice and especially his support from occupational therapy and his teachers. His and his mother formed a strong relationship with his occupational therapist, who had DIR/Floortime training. It allowed him to get to the point where he could achieve his goals.
What is 'sensory blindness'?
Emile described experiencing sensory blindness as a child, or ‘visual blindness’. He says that when this occurs, he is unable to see the faces of people. It is about sensory overload. It affected his academic functional abilities and when he was in a big crowded space out in the community, such as in shopping malls.
Emile says it’s about the brain protecting itself. In his case, the visual sense is diminished for a short period of time. At this time, he said, he goes into fight or flight. If you fight, you learn to adapt. If you go into flight, you will hide, avoid, be quiet, or other avoidant behaviours. It is a lifelong struggle, he says.
Emile sees it on the positive side because he grew up according to the socioecological model where he believed he has strengths and can function in society. He believed in his capabilities. This model was present throughout his life. If he had portrayed the flight response, he wouldn’t be able to enjoy the moment, he explained.
What can parents do?
I asked Emile, “What can a parent do to help their child avoid the flight response?” Each child is unique and each parent knows their child’s likes and dislikes, he responds. He said it’s the ability of the parent to figure out what environments makes their children comfortable or uncomfortable, what environments are friendly, and to figure out which people involved will accept and understand your child, including their meltdowns.
He talked about an autism survival kit that can include such things as a sensory blanket that can help their child when they are overwhelmed. It’s all about the child functioning in the environment. Emile shared that when he sat with his mother in one-to-one sessions, he never said, “No!” He persevered. His mother encouraged him to participate and persevere. You will move forward, then you will hit a speed bump. But never give up, he said. There is no replacement for hard work.
I then asked, “Is there anything that parents should avoid doing?” Make sure you have structure, including limiting screen time, he continues. Be sensitive and project empathy towards your child, he continues. You must never ever give up, despite outside comments from others. Provide a healthy lifestyle and help your child to function to the best of their abilities. Create structure, but also adapt the routines according to your child’s abilities while continuously supporting your child.
I also asked Emile what was going on inside when others didn’t understand him because he wasn’t yet communicating verbally? Emile says he read before he spoke and he struggled with mathematics. He struggled with planning and organization. Others noticed he was different and he unfortunately suffered emotional and physical abuse due to the struggles he experienced. He didn’t tell anyone, but he often wondered why he was struggling and why he couldn’t do what others could do.
This lead to his frustrations and meltdowns at home. This is where his mother advocated for him and found out from school everyday what challenges he faced, what happened each day to figure out why he was frustrated and was exhibiting self-soothing behaviours such as scratching to express his frustration. His therapy with a psychologist as he was older helped with his self-esteem. Especially as a teen grows older, it affects mental health, he says. With continuous support, he was able to function and have positive self-esteem, but it wasn’t easy.
Autism is considered lifelong because the general anxiety, sensory overload, and fight or flight will always be a part of your life, Emile shares. You’ll always have challenges with organization and planning and it’s up to the society to support helping you live to the best of your abilities. His mother supported him. She stimulated him with his interests, such as with books about sports. Due to his outstanding long term memory he can quote sports statistics from his interests.
Accessibility is a right, not a privilege
We all need to work together to achieve a common goal and share knowledge, Emile states, including self-advocates, parents, and autism awareness organizations. He says we need to advocate to ensure that society can include individuals on the autism spectrum and for inclusion without barriers, including in the education system. All individuals with autism have an important purpose in life, he says.
When I asked Emile what does neurodiversity mean to him, he said that each person on the autism spectrum has unique abilities. We tend to look at the spectrum with different variations including ADHD, ADD, dyslexia, alexia, epilepsy, etc. All of these individuals are part of the spectrum and so the neurodiverse movement is all about the ability for each individual to function in their unique way to the best of their abilities and to get acceptance in society. He quoted the United Nation’s goal of 2050: fighting for equality in society, accessible technology, and employment.
Temple Grandin used the term ‘different but not less’. Being different doesn’t make us less than anyone, Emile says. This movement has started to be embraced and the work is just beginning, ensuring that all individuals are being recognized. We want an equal society free of discrimination. Every individual has a purpose in life, and they need to fulfill it. I thanked Emile for all of the advocacy work that he does.
The community of practice is about us working for a purpose
One of the common questions Emile hears is about having relationships with someone. The social side of autism, in terms of relationship, is a common struggle, he explains. When Emile started to speak in sentences, he faced discomfort in social settings. He struggled to understand humour (and still does) and he struggled how to start conversations.
Emile received support from a psychologist in university where they did role-playing so he could practice how to engage in social situations. He said individuals on the spectrum tend to be alone, and seen as if they are in a bubble world, but it gets lonely. He wanted to contribute to society, to be independent, and to be in a relationship.
Emile is in a relationship with an autistic individual who plays a major part in his life. He feels very grateful to have met his partner. They met on an autism self-advocacy group at university. They understand each other. They embrace each other’s unique abilities. They are referred to a power couple inspiring others. He said we all need encouragement and determination to deliver this positive message.
He feels it’s his purpose to fight for all on the spectrum and for all disabled people. It’s a general fight that we have to have an inclusive society, to have equal education, employment for everybody, accessible society without discrimination and accessible healthcare.
Past attempts have exposed the challenges that individuals on the spectrum have, Emile explains. He believes we are all here for a purpose. General accessibility is a right, not a privilege. It’s a right, he emphasizes. The community of practice is about us working for a purpose and Emile is happy to contribute to this purpose and advocate for change, and encourages us all to participate.
Thank you to Emile Gouws for podcasting with us and sharing his story. It is great to hear from a self-advocate about his own journey and process and his advocacy work is truly inspirational. If you enjoyed this interview, please share it on Facebook or Twitter. If you have any relevant experiences to share, comments or questions, please put them below in the Comments section.
Until next week… here’s to affecting autism through playful interactions!