On this Episode…
The International Council on Development and Learning (ICDL) Board President, autistic self-advocate, Dr. Emile Gouws and I discuss April’s month of autism awareness, acceptance, and appreciation, and the need to move towards action and inclusion. What does all of this mean and how does DIRFloortime® fit in?
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Moving from Awareness, Acceptance, and Appreciation to Action and Inclusion
Emile says that autism awareness is knowing that autism exists, acceptance is understanding that autistic people belong, and appreciation is recognizing the unique strength and contribution of autistic individuals, but action is where real change happens. We need policies, he says, inclusive education, reasonable accommodation in the workplace, general accommodations in civil society, and more importantly, meaningful support systems that don’t just acknowledge autism, but that actively empower autistic people.
There is a big disconnect between what we hear self-advocates talking about (in so many new podcasts and on Instagram posts–social media is really active with the voices of self-advocates) and what’s actually happening in schools, work places, in policy. Bridging those two together is something we’ll be watching going forward. Listening to the voices of self-advocates online, it’s very evident to me that the definition of autism has seemed to change, due to the neurodiversity movement.
I asked Emile what he sees happening going forward where people like me are diagnosed as autistic versus someone like my son who has disabling co-occurrences like dyspraxia, sensory processing disorder, anxiety, and others like ADHD, that really disable every aspect of every day. Emile says that we see it now with the neurodiversity movement where there’s a lot more parents doing advocacy for their children and many self-advocates talking about their lived experiences, speaking at major conferences and on social media.
Misunderstandings about Autism
Emile says that the biggest misconception about autism is that neurodivergent people lack potential. The truth is that we think, learn, and communicate differently, Emile explains. It’s not necessarily a weakness. We are trying to move away from the medical model and towards a social model where we acknowledge autism and its co-occurrences. There are many talents autistics have to be able to cope with their differences and to be able to make a success out of their lives, Emile asserts.
Research and advocacy have shaped our understanding, Emile continues. Autism is a lifelong developmental difference that is not something that has to be fixed. It’s not a tragedy. It’s a different way of experiencing the world, but we have to take into account context and time, he insists. Autism is not a static concept. It evolves based on context, time, and societal understanding.
Decades ago, only children with significant support needs were diagnosed, often under different labels, Emile continues. As our understanding grew, so did the spectrum, recognizing individuals with differing support needs. Outdated terms have been removed and different views of autism have been embraced.
Autism Around the World
In different areas of the world, autism is understood differently and can vary widely, Emile continues, along with services available. Autism is a dynamic concept shaped by both science and society and most importantly, by lived experience. We must continuously adapt our approaches to ensure that every person–regardless of where they live or when they were diagnosed–receive the respect and support they deserve, Emile insists.
Autism understanding varies so much around the world. Based on Emile’s different roles from researcher to self-advocate, he can say that research differs around the world. Various countries in Africa hold various walks for autism in April to promote awareness, but for instance, South Africa didn’t do a proper census of disabled people, which means that their research is outdated. South Africa has a high suicide rate among neurodivergent people who don’t feel a purpose, Emile shares.
The south of the globe varies from the north, Emile states. In the global south, a lot of influences contribute to the understanding of what autism is, Emile shares. There’s cultures, traditions, religion, and socioeconomic status. There is filicide where parents kill their children due to misconceptions about their children’s diagnosis. Any disability can be seen as a punishment from a higher being. Research must share awareness to equip the global north and global south, Emile says.
Emile will talk about this topic in Florida at the International Conference for Autism and Neurodevelopmental Disorders (ICAN) this April where they’ll compare the global north and south in a presentation symposium which includes Temple Grandin. An example Emile brings up is that there is no sign in sign language for autism in South Africa. We need to hear more about lived experiences. More is needed. There are many non profit organizations in Africa that supports families, and this is where ICDL comes in, Emile shares.
ICDL supports parents in forming connections with their children. Having caregivers understand their children better using Floortime helps them to see their children’s strengths. As Mickey Rowe said, “Our differences are our strengths.” I shared that I listened to a podcast that said the percentage of disability is about the same in the neurotypical population as in the neurodivergent population, but the perception of autism is only about the disabled part of that population. Let’s move away from the medical model and support the disabling aspects of autism. We want everybody to have a place in this world.
Identity is Everything
For many autistic people, accepting their neurodiversity and understanding their diagnosis is a source of pride, Emile states. It’s a part of who they are. Understanding identity over a disorder to be overcome allows autistics to advocate for themselves and push for meaningful change. Autistic identity moves beyond awareness. The importance of language when referring to autistic adults is that it shapes perception. Most autistics prefer identity-first language (i.e., “autistic person”) over person-first language (i.e., “person with autism”) because autism is part of who we are, not something apart from us. When we change how we talk, we change society and how society treats autistic people, Emile believes.
What’s in Store?
Emile says that the future needs to include lived experiences of different neurodivergent voices including non speaking autistic adults. This community needs to be promoted for the right reasons to show what’s possible. Schools must prioritize inclusive education and mainstream education for autistics. The workplace must include real opportunities for autistic individuals and have policies shaped by autistic people themselves. Awareness is not enough. We need the input of the community of practice, Emile asserts.
Emile wants to see that we’ve implemented real measurable changes to ensure that the autistic population isn’t just included, but are valued and supported. It’s a real concern of Emile’s about the capabilities of neurodivergent individuals. Many are not being paid minimum wage due to a big misunderstanding and discrimination. It’s against the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and against the civil rights movement. It’s a form of discrimination.
How can we incorporate Floortime and how important is it?
Floortime changed my life, Emile shares. He sees it as a specialist teacher and now as an educator of Floortime. Floortime is a game changer, he asserts, because it focuses on connection first. Instead of having autistic individuals fit into a rigid system, Floortime meets them where they are. It helps parents and caregivers understand their child’s unique way of thinking and communicating by joining them in their world and following their lead, using their interests to form meaningful interactions.
The more we engage this way, Emile continues, the more we nurture confidence and form trust and deepen relationships with autistic individuals. It’s all about connection before correction. Instead of forcing autistics into rigid expectations, it respects their natural way of thinking and interacting. This approach fosters self-confidence, emotional growth, and meaningful communication. If we appreciate and act on autistic needs in this way, we create environments where learning and relationships can thrive, Emile emphasizes.
The way people work with autistic people has changed. This month every year allows us to reflect on the autistic people we know and work with, reflect on how they’re being included, respected, and wondering if we are giving them the benefit of the doubt, presuming competence, supporting their needs, and how that will continue to evolve and change.
As more autistic voices have entered the conversation about their needs and preferences, Floortime has evolved to emphasize and respect the individual’s agency and autonomy and the technique emphasizes following their lead which respects their own interests and communication styles which aligns with the neurodiversity movement and celebrates differences. For Emile, though, the most important aspect is fostering emotional regulation through connection.
This highlights the importance of emotional understanding and authenticity, Emile says. Floortime has evolved to emphasize these elements. As our understanding has deepened, Emile continues, we are fostering and advocating for self-expression of exploration of identity. It encourages the development of communication in ways that feels comfortable and meaningful to the autistic individual allowing for self-advocacy awareness and connection to their autistic identity.
If you accept your own identity, you can accept your difference and you can cope in society.
The Floortime framework makes meaning of how to do that with each individual who is so unique. One thing that makes Floortime stand out so well is the interdisciplinary aspect. Dr. Greenspan so wisely surrounded himself with experts with specializations in sensory processing, sensory integration, how to connect with people emotionally (psychologists), educators and how to include Floortime in education, bringing movement into the day and not having everyone conform to one way of learning. The multidisciplinary aspect and this framework makes it so adaptable to promoting development and everybody’s potential.
Emile says it’s all about connection, using play and meaningful interactions to foster engagement and emotional development, and recognizing that true learning happens when the child feels connected, valued, and understood. The focus on relationships is key because it teaches others how to interact in ways that feel natural and meaningful.
ICDL and DIRFloortime® respect neurodiversity by acknowledging that autism is not something to be fixed, but is a different way of experiencing the world, without forcing anyone to conform to neurotypical expectations, but in ways that make sense to them. I shared a quote from my upcoming book, We Chose Play: Raising an Autistic Child to Thrive and Feel Understood:
“One of the greatest insights in parenting an autistic child is that, often, we are the ones who need the intervention, not the child. The overwhelming focus on the child can cause us to forget the impact we have on them.” (from Chapter 3, entitled, “The Role of the Caregiver”).
This is the strength of Floortime: modifying ourself, the therapeutic use of self, to really understand the child. Emile says that this is the importance of patience, understanding, and the individualized support to meet the unique needs of every child. This is the foundational structure that can impact the development of each neurodivergent individual. We should not discount children who don’t appear the way we expect growing up.
Support for Autistic Individuals
Emile thanks his mother-in-law who is the main support system for him and his wife. Buildlng a solid support system is their way of functioning. A support system is essential because an autism diagnosis is lifelong. To cope with everyday life, individuals must navigate unfamiliar environments, expectations, and people—factors that can affect behavior, functional abilities, and coping. Emile’s experience is just his, but by understanding different people’s living circumstances and expectations, we can make a difference, he assures.
This episode’s PRACTICE TIP:
Let’s think about our understanding of autism this month and where we can foster inclusion and action.
For example: Have conversations with people you know about autism inclusion and how autistics experience the world differently from what they understand. Ask about opportunities business owners provide for autistic individuals. Follow the Autistic Self Advocacy Network (ASAN) and join campaigns to promote inclusion and action.
Thank you to ICDL’s board president, Dr. Emile Gouws for sharing his concerns about autism awareness, acceptance, and inclusion. I hope that you will share it on social media.
Until next time, here’s to choosing play and experiencing joy every day!
