Senior Advisor to the Interdisciplinary Council on Development and Learning (ICDL) where he also sits on the Board of Directors, and Autistic Self-Advocate, Emile Gouws, returns this week to discuss the topic of his PhD studies, the experience of university students who learn differently. 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.
Emile and I will be working together at ICDL to bring the self-advocate and parent perspectives forward and look forward to presenting together at this year’s 2021 ICDL Conference in November. Emile says that it’s about getting more first-hand experiences and about getting the community of practice involved where we work together, starting from the ground and working our way up.
Examining the Experience of Autistic Students in Higher Education
An Ableist and Masculine Approach to Difference
Emile shares his personal experience that higher education is a challenge for any individual who’s different due to an ableist and masculine approach to difference. The ableist viewpoint is based on the negative stereotypes and cultural assumptions such as efficiency and difference. It sets a standard of perfectionism, which requires a social transformation approach to ensure that these individuals are accommodated. Those who are different are expected to fit into their environment. Often, students with a physical disability are being accommodated, but not those who have psychosocial or sensory disabilities because they are somehow not seen as being disabled. Their disabilities are invisible impairments.
It’s an interesting approach to disability and how we analyze society, Emile states. He explains that society and public institutions, including universities, have distanced themselves from students who behave differently. Students with disabilities are part of the minority and are regarded as separate entities and are isolated as a result. He feels that all students with disabilities and their parents feel discriminated against. Standards set by the institutions stigmatize differences which are seen as weakness, which places difference in a negative light. Students are victims of discrimination, he continues. The logistics of the institution employ ableism in their practices, and this set of assumptions contributes towards disabling the student and promotes unequal treatment, he explains.
Emile points out that’s he’s talking from multiple lenses, from an adult autistic’s perspective. In the autism field, he says, there is a negative perspective towards students on the autism spectrum and some feel that these individuals need to be ‘fixed’ or ‘normalized’. So it’s important to note that for students with an invisible disability, public institutions are not inclusive enough. These students experience many concrete barriers when they participate in everyday activities. The standards of the institution need to create an inclusive environment to make them feel safe and accommodate them on cognitive, emotional, social, and physical levels, and while making reasonable accommodations, ensure that this individual has the opportunity to reach their full potential, Emile suggests.
I gave an example of how someone with Attention Deficit Hyperactivity Disorder (ADHD) might require more time to finish an exam. An ableist view might say that’s not fair because everyone should receive the same amount of time to complete the exam. But this ignores that ADHD brains process information differently and thus require reasonable accommodation. Emile draws our attention to legislation like the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). In South Africa specifically, the White Paper 6 refers to reasonable accommodation, which are the appropriate accommodations and adjustments, assistive devices and technologies that are used to ensure that the person is accommodated on an equal basis so they can fulfill their full potential.
Emile says it’s important to also look at the process of reasonable accommodation. He refers to it as the three columns. The first column is your impairment, which varies for students with disabilities including the physical, the psychosocial, the sensory, the intellectual, the neurological. The second column is the barriers: the physical (which includes a sensory or motor challenge), attitudinal, information, and communication barriers. This refers to the types of challenges the individuals will experience. The last column refers to the accommodations, Emile details: the technology, assistive devices, adjustments, and modifications such as using a speech to text function, adjusting the size of the text on the paper or screen, or providing additional time.
If you can understand these processes of reasonable accommodation, you can automatically create an inclusive and accessible society, Emile believes. But how does this process get going? How smooth is it? If there are barriers to advocating for yourself and your needs, an individual could give up simply because the steps to take are too cumbersome. If there are flights of stairs and numerous steps to take during specific hours and other barriers, the process of even getting started isn’t welcoming or accessible, I suggested. Barriers can include people assuming that students requiring accommodation are difficult and a pain to deal with. Emile says, yes, ideally every student would be seen as welcome with whatever individual differences they bring.
Prerequisites for Inclusion and Accessibility
In order to reach the dream of a fully inclusive and accessible society, Emile refers to four aspects. The first is Universal Design (UD), which acknowledges different legislation around reasonable accommodation and to ensure that students are accommodated. UD also refers to general accessibility in order to accommodate different needs, as described above. The next aspect is Information: the research that is available in order for us to ensure that reasonable accommodations are met. It’s essential that the information is relevant as well because research from USA, Canada, Switzerland and the UK may not be relevant in South Africa, for instance. It’s important to identify the gap and invest more in research and information, Emile states.
Another aspect is Communication which involves the assistance of faculty members, academic staff, and student support team working together to ensure that that specific student is accommodated on campus cognitively, emotionally, socially, and physically. Finally, we need to consider the Institudinal Practices–not institutional, which has a negative connection, and we are following a social approach to disability–which is making sure that the student is accommodated by involving the community of practice, including training sessions with DPOs, NPOs, NGOs, self-advocates, and parents in order to educate and to initiate difference, Emile explains.
If we can get this started from the ground up, we’ll have more autistic students succeeding at higher education. I asked for clarification on the acronyms. DPOs are Disabled People’s Organizations who advocate for disabled person’s rights, usually referring to the United Nations documentation and conferences that are self-advocate led. NPOs are non-profit organizations, and NGOs are Non Government Organizations that work together with DPOs to initiate change. These DPOs and NGOs are typically the first place where students and parents need to go for their voice to get heard. From there, you can refer back to society and public institutions, Emile explains.
DPOs often are requested to provide training by the institutions on reasonable accommodation, inclusion and accessibility in the workplace and in higher education. It’s important for the community of practice to work together to initiate change, Emile says.
Emile’s Personal Experience
Every student has a personal story. Personal stories are important to Emile. For any student who is enrolled or who aspires to study at any educational institution, it is an honour. You study because you want to improve your life and show that you are independent, he says. For himself, he believed that by attending university he could get rid of the misconception that a student with autism cannot function in society or that a student on the autism spectrum cannot be independent. For him, he wanted to get rid of that chain, he said, that he had every single day in school. He also wanted to get rid of the ableist and masculine approach.
Emile wanted to prove that a student with an invisible impairment–someone with different challenges cognitively, emotionally, socially, and physically–can succeed in society. He needed to adapt to a universal environment with different legislations, approaches, standards and requirements. He had to get used to everything all over again. As a student, he functioned well in a normal school, but when he went to an unfamiliar environment with unfamiliar expectations, it affected his functioning abilities on the four dimentions he mentioned. It was extremely difficult for him. Also, as a student who was non verbal, he struggled with the communication factor.
It’s not just about academic performance, he explained, but about the social well-being of students as well. This was one of his most difficult aspects. He had the support from different service providers such as a psychologist who helped with communication. It was difficult to get used to the standards. It took a couple of years, but it helped to formulate his identity and he succeeded. It shows that a student who is non verbal can succeed, despite the challenges he experienced, and it showed the value of support.
The Importance of Relationship
Emile highlights how important the relationships at home are. As a student who was primarily attached to one parental figure at home, his mother, it was extremely difficult for him to be able to adapt from his home environment into a residence. Emile really wanted to succeed, and as a student with neurodevelopmental challenges, it was a concern for his parents.
We need to look at the individual behind the diagnosis before we stigmatize.
They wondered what might happen to their child? Will he function and succeed? Will he graduate at the end and will he be employed? But they believed in Emile’s abilities. This support and belief in him is why he succeeded. They exposed him to experiences that created the path for his success and supported him the entire way. Although there were family members and staff who thought Emile shouldn’t take the university route, he wanted to show that he could succeed because he believed in his own capabilities like his parents did, and the support was key, he asserts.
Emile’s Advice to Parents
Emile says that the number one important thing to do is to identify the student’s interest. From there, you can start to think of different avenues the child might go to. Also, consider the different challenges the child experiences cognitively, emotionally, socially, and physically. You need to critically analyze it and you need to believe in your child’s capabilities, he says. With the autism spectrum, though, Emile says, there is no blueprint for parents since each individual is so different and unique. The continuous support is vital, though, Emile stresses, because depending on the people and standards in the environment, as well as the expectations and requirements, the individual will need that support to function.
Emile says that there will be times where the student has challenges socially or emotionally, and physically–sensory-wise, so it’s important to make the support strong and make the institution aware that the student is different, and to make contact with all of the available support services and disability units. Make sure that there are reasonable accommodations to ensure that the individual can succeed. I asked Emile if he has any advice around being too supportive, where parents almost take over for their child and prevent their child from becoming independent? He says this is normal for a parent due to the uncertainty factor of the autism spectrum.
That’s why it’s referred to as a neurodevelopmental challenge, Emile says, because parents know their children’s behaviour and emotional responses in unfamiliar environments best. Emile himself says that although he was age 18 and at that level in school, emotionally he was more like age 9 or 10 depending on the environment, so it’s normal for parents to have that concern. But that is the brilliance of neuroplasticity, he continues, where the environment and the support from the environment will accommodate the student to make sure they can adapt and function in the university environment. That is why the brain’s development is quite important, he states.
It’s unfair for him to say, though, as he said before, what to do to a parent because each child’s pathway is different. But there will be times where, in terms of the emotional development, the individual feels the need to be independent. But you have to be there when support is needed, Emile concludes.
I believe there is a pathway for each autistic individual, not only at any form of higher education, but also in the workforce. So it’s quite important for us to identify the unique abilities and to identify the interest, and to let that individual go through the process to identify their needs and follow their dream. But, be aware of the different challenges that these individuals experience on different avenues. And also be supportive every step of the way.
Emile’s Challenges Through University
I asked Emile about personal challenges he experienced and how it was getting accommodations and support for himself. He reminds me how it’s easy to accommodate physical challenges, but what’s quite difficult with autism is that it’s hard to identify reasonable accommodations for the challenges that these individuals experience along the four categories identified–cognitive, emotional, social, and physical (which includes sensory). It was quite difficult for the institution to accommodate Emile, he explains, because he was an able-bodied student, he didn’t have a physical impairment, and he looked like a neurotypical student. But there were certain challenges he experienced including sensory-wise.
For example, in a lecture of over 300 students, his senses were overwhelmed. He struggled to communicate effectively and this was the time where he had started to speak. The assistance of the university psychologist was quite important because he was introduced to the formal aspects of conversation including how to start or end a conversation and how conversation works like a dance where you alternate steps with somebody. She needed to break it down for him to understand, Emile explains. Emile used those techniques for communicate and form relationships. And yet, in an environment that was very ableist and masculine, it was very hard to get acceptance because although he looked like an able-bodied student, his behaviour was different.
After two or three years, he says, the students started to accept him, both in residence and in classes they took together because they started to see the challenges he experienced and he started to emphasize and this made all the difference, Emile says. Academically, he had additional time, and he also made use of assistive devices like audio recordings of his lectures due to the sensory overload that he experienced. In his dissertation he’s been working on in the past year, he identified these aspects and much more from a masculine and ableist lens. What’s important, he emphasizes, is that yes, he had these challenges, but he also had the support from different avenues.
The campus he attended was smaller. There were a lot of students, but not as many as other faculties had, so he could cope with the necessary support. There were a lot of challenges, but also a lot of positivity that came out of his experiences, he recalls. Emile says that the reason why he’s here on this podcast as a student in the final year of his PhD is that these experiences made him stronger–not only as an autistic person, and not only as a student who is different, but also as a human being. With these lessons, he wants to create an inclusive society that is accessible for all.
I asked Emile how he would record his lectures because if there was a lot of noise, for instance, the recording would include all that noise, but at least he wouldn’t have all the rest of the sensory input to process at the same time. He said we have to go back to the type of diagnosis. Emile experiences visual sensory overload where he cannot see the faces of students. Each person is different. Some autistics have stronger auditory senses than visual, he explains, while others have stronger visual than audio. Some will be fine visually, but they’ll cut out the sound, he says. In his case, audio was fine but his visual-spatial sketchpad (the manner in which he the brain protects the brain from sensory input) protected him from the sensory input he received. When he played back the audio in a private space, his visual was not exposed.
It also depends on the ethical considerations of the institution, Emile continues. Some staff members were quite approachable. This is why it’s so important for everyone to come together including the DPOs, the student, parents and faculty members. The social interactions and communication are often some of the biggest challenges autistic students have so it takes a tremendous effort and determination, which affects self confidence, to go to someone and tell them about the diagnosis they have, and to ask for support. To accommodate the social anxiety and emotional well-being, it’s quite important to have assistive devices in place, Emile asserts.
Education is a Right
While an ableist view might look at some of the accommodations as preferences, they are actually necessities for individuals to learn. Emile says that education is a human right. Making all levels of education accessible and inclusive contributes to the work force and gives individuals purpose in life where they can fulfill their own potential instead of dropping out because they are different. We want everyone to contribute to society, have a voice, and be able to make an impact. It all starts with education and training and how we accommodate the individual, Emile says. This will decrease the unemployment rate among neurodiverse individuals.
Emile’s Perspective on Inclusion
I asked Emile’s opinion on institutions that cater strictly to those who learn differently. While we of course want inclusive and accessible environments everywhere, some may not want to deal with the discrimination and effort that comes with being in a typical environment and prefer a higher education institution that only has those who learn differently so the inclusion and accessibility is already there, for a more stress-free environment. Emile says that this is what is interesting about the autism spectrum. Each autistic adult has a unique background, upbringing, personal experience, education level, and parenting styles that their parents taught. Emile follows a social ecological approach in terms of impairment and autism.
There’s a lot of discussion of different approaches used in the education field and in intervention. Referring to his personal life, Emile says that if it wasn’t for his mother who continued to expose him to different environments, he would not be where he is today: a student sitting here talking about different theories and about to submit his PhD dissertation. It’s about the type of student on the autism spectrum, Emile believes. It’s about the child’s experiences and capabilities. The critical time, he says, is in early childhood development when the process starts after an early diagnosis. Education was vital in Emile’s development, he says, and why he is sitting here.
There were certainly hard times but the approach his mother took worked for him and helped him be able to function and to succeed. It’s quite important for you to identify what works for you as a parent and what your child capabilities are. It doesn’t matter what academic institution your child attends as long as they can function, he says. We live in a very cruel society, he continues, where ableism and masculinity are preferred. We certainy have become more accepting as a society, but unfortunately there are still some aspects of society that are not inclusive enough for individuals on the autism spectrum and the unemployment rate is very high due to the challenges that these individuals experience.
In Emile’s personal point of view, in order for an autistic adult to function, that adult needs to adapt to society and come together with others to fight for an accessible society. He saw dramatic changes in the community of practice and in the public institutions where they are becoming more aware. Public facilities and service providers are becoming more aware about autism and if you come with a complaint about an inaccessible aspect that you might have been confronted with, people will understand. Yes, it takes a lot of education. But it comes down to understanding each individual child’s capabilities, he asserts. If the individual shows signs of coping and has the desire to function along with the capabilities, we must not stand in that individual’s way.
Focus on the Individual
The field of autism is controversial when referring to the disability, the impairment, the different theories and interventions, and the ways in which we approach autistic adults. Emile says we have to look at the individual. Depending on the experiences of individuals, our main concern must be that individual who we are aiming to develop and for them to succeed and not be a part of the unemployment statistics.
Focus on the abilities of the individual and not the diagnosis or all of the things that are out there. This is why we have a gap in the field, he believes. Everyone is too concerned about the different words and signs that we use. Emile says in his case, if they listened to all of the small things, he would not be a success story. Uplift the parent and uplift the child. That’s what’s most important. That is why DIR is important. Focus on the individual.
The main purpose as self-advocates, service providers, and educators is to ensure that these individuals function, are accommodated, succeed, fulfill their destiny, and are members of society. Our main concern must be the individual and not what’s out there. We are working in the field in order to uplift, to educate, and to change perceptions.
This week's PRACTICE TIP:
This week think about how your child benefits from the support you provide to them, as Emile described. Also ask yourself what you believe about your child’s capabilities.
For example: What does your child rely on your for? Where is the line between what they depend on for support versus what they are capable of? What would they crumble without? What can help them thrive and uplift them? What uplifts you as their caregiver?
Thank you to Emile for sharing his personal experiences as an autistic university student with us and giving us a lot to think about. If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below–especially from this week’s PRACTICE TIP. Also stay tuned for next week’s podcast where I’ll chat with DIR Speech and Language Pathologist, Marilee Burgeson, about Dr. Stanley Greenspan’s WAA concept in Floortime: Words-Affect-Action.
Until next week, here’s to affecting autism through playful interactions!