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Magda Mostafa is an Associate Professor of Design at the American University in Cairo and autism design consultant at Progressive Architects. With over 20 years’ experience, she is a global leader in autism inclusive design and the author of the evidence-based design framework ASPECTSS. We interviewed Magda to expand our understanding of the role of architecture and design in the autistic life.
I have been involved in the autism world for over twenty years and while my focus has remained on architecture, the building typologies I have worked on over the years have really evolved. The genesis of my involvement was in 2002 which was very early days in the autism awareness world and a time when we were seeing headlines of an ‘autism epidemic’ in the USA. But this wasn’t an increase in autism per se, it was just a better understanding of the diagnostic parameters which resulted in more children being identified as autistic.
I was approached by a group of parents to design the first autism centre in Egypt and when I started the project and started looking for design guidance, standards or codes, and recommendations of best-practice, there was nothing available. So I made the decision to focus my academic research in this real-life design gap and determine how different spaces impact autistic children’s learning and behaviour.
Over the course of my career the focus has shifted from early intervention spaces, such as day-care and nursery schools, to primary and secondary schools, to higher education, to housing and workplaces. So my practice has grown up with that original cohort. Those children who in 2002 were 2 or 3 years old are now, twenty years later, are entering higher education or the workplace, so the peak awareness is now demanding us to think about those spaces. And I imagine in a couple of decades I’ll be approached to do autism friendly assisted living facilities.
The biggest challenge is to move away from the positioning of inclusive design as a charitable act for individuals, to a more respectful strength-based approach that is more attuned with the social model of autism and acknowledges that individuals on the spectrum come with strengths, abilities, insights, and alternate perspectives which they can bring to a home, learning, workplace, or public space environment.
“There’s a famous saying in the autism world: ‘if you’ve met one person with autism, you’ve met one person with autism’. The idea that everyone on the spectrum is exactly the same is an oversimplification.”
Another challenge is the basic human right of everyone to be comfortable and safe in their space. We need to realise that the ‘problem’ isn’t with the person - that it is not necessarily only the individual that is disabled and unable to access a space in a way that is safe and comfortable. The problem is within the space - that the space is set up in a way that can be disabling.
We need to realise that any large enough grouping of people, whether it is a workforce or student body, will statistically have people on different places along the neuro-diverse spectrum that will benefit from the reorganisation of space to meet different needs.
The first thing is to expand who we think about when we say ‘user group’. As an architect and designer you’re always given a user group for whatever space you’re working with and there’s been a lot of conversation about extending that definition around gender or physical mobility or vision and hearing. I would like autism to have that same place, so that when we think of the user it becomes common practice to think in an expanded way about the different neuro-diversities along a spectrum.
Secondly, we need to rethink the tools we are using to make them more accessible for autistic and neuro-diverse participants. While there are so many great tools that we use when we take a human-centred approach to design, like focus groups, interviews, surveys, and participatory design research and design thinking, these tools are based in a very normative model. They assume you’re able to speak, to engage in a social group, to focus for certain amounts of time, to do a survey in a particular format, and that your communication will be primarily verbal and not visual. These tools work around a normative template of abilities which excludes a whole group of people from the process of human-centred design.
I would also like to see a continuation of solutions similar to the Dublin City University Autism-Friendly University Design Guide, for there to be an autism-friendly workplace guide, an autism-friendly public space guide and an autism-friendly housing guide. To take general guidelines and consider them under different conditions so that we end up with a whole menu of widely available solutions that architects and designers anywhere in the world can start adapting and adopting in their own spaces. These guidelines are not a one-size-fits-all approach but a framework or ‘scaffolding’ through which we can tackle these problems. We need to be thinking about the same issues but not necessarily reaching the same conclusions. Customisation, flexibility, and adaptability are all really important in design solutions in different physical and operational contexts.
And the final challenge is addressing policy and legislation so that it becomes a requirement of decision makers to design in this way. At the moment it’s left to the goodness of people’s hearts as there’s no top-down legislation or requirements (codes) to make sure that autism is included, just like deafness, blindness and mobility, as a requirement in the design of spaces.
When it comes to human-centred design and bringing the user to the core of problem definition and problem solving, adjusting the typical design workshop format can make this process more accessible for autistic individuals. Typically, design thinking methods are very open-ended and they’re meant to put you in a space where there’s a little bit of discomfort with the intent of keeping your ideas and creativity open. But this lack of structure can cause a lot of anxiety for people on the spectrum.
Being very organised and pre-deterministic about the expectations of the workshop, increasing predictability through scheduling (we use almost minute-by-minute agendas), checking in regularly and being open to suggestions for different ways to do things, are all ways to make the process more inclusive. And enabling individuals to engage in multiple ways and use methods that focus more on the visual rather than the verbal, for example, sketching, drawing and marking-up, or sharing thoughts with someone who can transcribe them. Providing a range of options and supports will make sure that everyone has a way to engage comfortably.
And finally, flip the user/expert model and be upfront in focus groups, workshops and interviews that you are here to hear from, learn from, and understand the autistic perspective about the built environment. I always try to approach my work not from an expertise position, because I don’t think anyone can claim expertise until they’ve had the lived experience from something. As a non-autistic individual I can’t claim to be an expert on autism because I’m not autistic. However, I’ve had the privilege to work alongside many individuals and spaces that deal with autism so I have some experience that I can share that may be useful. Most of the knowledge and guidelines that we’ve come up with over the years have always begun with an autistic insight. I just had the architectural tools to put it together into a built environment format because I was there with the mind of an architect to observe it and be able to replicate it and codify it. We need to take away the ego of ‘the designer as the expert’ and move towards ‘the user as the expert’ to empower the autistic perspective.
“As designers we need to get comfortable with the fact that our users exist along a spectrum and have different needs that all need to be legitimised. And that spectrum is abilities, genders, races and ethnicities, and perspectives of how we see and experience space.”
There has been a growing interest around neuro-diversity in the workplace, and specifically autism in the workplace, that I think has largely been sparked by the mental health crisis around the Covid-19 pandemic and around the rethinking of workplaces because of lockdown and remote work. But the sectors that seem to be most interested now are sectors where autism self-advocacy has found a place. For example, the autism-friendly university was largely capitalised by an autism self-advocacy group and students on the spectrum demanding and lobbying for their needs to be considered in their higher education space.
In some individuals on the autism spectrum, their strengths will lie in numeracy and pattern identification or certain other strengths and insights that position them to be really great computer programmers and coders and to think in very innovative ways. So the tech industry has responded to this growing employee base and one of the first and most influential workplace initiatives started at SAP in 2013 through an initiative called Autism at Work that considers how the design of the workplace can support more inclusive autism friendly spaces.
The one sector that I think should be giving this more attention is the healthcare sector. There are shocking statistics around autism and physical health outcomes. For example, individuals on the spectrum present with more complicated medical problems, have shorter life spans and higher mortality rates, and get sicker for longer than their peers in other average groups. There is emerging evidence that part of the problem behind these poor outcomes is access to healthcare and anxiety for autistic individuals of being in healthcare spaces. So if we can create healthcare spaces that are more autism-friendly, more accessible, more comfortable and that don’t cause as much anxiety then part of the problem can be resolved through design.
The best place to start is by rethinking who they’re designing for and expanding our idea of the ‘user’. As an industry we must break the mould of the standardised user – of Le Corbusier’s modular man. This standardised average person we are designing for does not exist and we need to get comfortable with the fact that our users exist along a spectrum and have different needs that all need to be legitimised. And that spectrum is abilities, genders, races and ethnicities, and perspectives of how we see and experience space. We have become so accustomed to looking at our spaces and thinking about our spaces from this normative lens that we have ignored that there are other ways to experience space. The perspective of what space is like from an autistic experience is so valuable and we need to start listening to individuals on the spectrum and understand what their experiences are like in space.
Thinking through a neuro-diverse, sensory lens has to start from the planning, programming, and problem identification stage. That doesn’t mean you can’t come into a building that’s already built and retrofit it to make it more accessible. You can of course, but there’s so much more that you can do if you start right at the beginning.
One of the key challenges I face in my work is selling autistic-friendly design to decision makers who are concerned about the cost of space modifications on their bottom line. My argument is always that the money and time spent creating a more inclusive space is offset by the expenses that you’re going to have to pay later to support these individuals if you don’t act. So one of the things I always say is “good design is cheaper than bad design” because although cheap design can be done quickly and you don’t have to hire a lot of experts, the money you save through that process will be lost through inefficiency, lost productivity and retrofits down the road many times over. And even post-occupancy there’s a lot that can be done around scheduling and programming, because how you schedule something and how you operate a building, if it doesn’t align with the intent of its design, no matter how well the building is designed it’s going to fail.
The core value is that an autism friendly space can end up being a friendlier space for everyone. Because when you design to meet the extreme, you end up designing better for the centre. Autism is just a heightened manifestation of challenges that most people have about processing their environment or engaging with sensory stimulation around them. Autism can be seen as an exaggerated focus on these elements, so when you tackle the problem from that perspective you can create much friendlier, softer, respectful, and comfortable spaces for everyone.
A lot of the strategies and guidance we propose through our work to meet the needs of autistic individuals intersects with the needs of a range of other people, such as the elderly or people with dementia, or making spaces safer in post-Covid worlds. So there are benefits for other individuals and groups, it’s not just for the small percentage of the population who are autistic.
None of us are exactly the same, all people exist along a spectrum because each is slightly different from the next, and once we start thinking outside of the standardised, one-size fits all model of thinking, you get spaces that are more connected to nature, spaces that think about colour in a way that’s different, spaces that are about both their aesthetics and acoustics, spaces with different textures, temperatures, and flows.
Essentially, when we start focusing more on the experiential aspects of our architecture and our cities we will end up making better cities. We may start out to make it better for autistic individuals, but along the way we’re going to be making it better for so many others.
Magda is an architect, scholar and educator focusing on autism and inclusive design. She is currently an Associate Professor of Design at the American University in Cairo and a practicing architect at her practice, Progressive Architects. She specializes in autism inclusive design and is the author of the Autism ASPECTSS Design Guidelines, the world’s first research-based design framework for autism worldwide. Magda is also a co-director of the New York based MIXDesign Neurodiverse Studio.