Dr Marwa Qaraqe of HBK University explains the country's local, regional and global initiatives

Imagine having a family that just received a diagnosis. And so the first thing that goes through their mind is, where do we go from here? There's a lot of questions. What services are available to my child? Looking at, you know, how does schooling and education look like for my child? And a lot of families often require extra support. So where can they go for counselling? And so until recently, all of this information, you know, families had to go out and look for it themselves. And it was a very fragmented way of kind of trying to obtain this information and what the Autism Community Hub does is that it integrates all this information into a single platform autism is part of the diversity of human experience yet for many autistic people and their families finding the right support can still be challenging as our understanding of autism continues to evolve so too must the way we think about support focusing on meaningful inclusion accessibility and personalized support throughout life Well, joining us today on center stage is Dr. Marwa Karaki, an associate professor in the College of Science and Engineering at Hamad bin Khalifa University. She's also the co-founder of the Autism Sensing ASense Center at the College of Science and Engineering at Hamad bin Khalifa University. Last year, on the sidelines of the United Nations General Assembly, she helped launch the Global Autism Advocacy Coalition, a groundbreaking initiative founded by Qatar Foundation, Ministry of Social Development and Family, Ministry of Public Health, Autism Speaks, UNICEF, and also supported by the World Health Organization. Dr. Marwa Karaki, welcome to Center Stage. Thank you very much. Now, it's been a year since the launch of the Global Autism Advocacy Coalition, which Her Highness Sheikha Moza bint Nasser has pushed for internationally as a way to strengthen global cooperation on autism why was it launched in the first place and what have you been able to achieve since so thank you very much for having me the global autism advocacy coalition or the it's a really a first of its kind initiative and it brings together international governments organizations advocates autistic individuals policymakers and investors around really a one a global agenda for autism. And the main idea behind the GAC is awareness in itself is not enough. We really need to start moving from awareness to advocacy and coordinated action on a global scale. So over the past year, the focus for the GAC was really on building the infrastructure needed and expanding its membership. So now it also includes education above all, the Autism Impact Fund and the Blue Light Foundation. And it was launched, as you said, last year in United Nations General Assembly and this year in the 81st United Nations General Assembly the GAC is going to be announcing its flagship initiatives so these initiatives are really designed to address system-wide gaps in autism on a global level so looking at diagnosis, investments, research and innovation and lifelong services on a global scale. GAC as you were mentioning there so it's clearly spearheaded now by Qatar Foundation that is a not-for-profit organization based here in Qatar and with the leadership of Her Highness Sheikha Moza as you were saying the need for awareness and further advocacy around autism that's being addressed but in what ways is that happening not just in Qatar here but also for the region and globally? So in terms of, you know, what's happening around the world in autism, we just discussed the Global Autism Advocacy Coalition. And this is an effort, an international effort, to bring more awareness and advocacy and action on an international scale. But the GAC is really just the latest chapter when it comes to over 18 years of advocacy that's been led by Her Highness Sheikha Moza, who is the chairperson of Qatar Foundation. So looking back at 2007, Her Highness proposed to the United Nations the establishment of a World Autism Awareness Day and this proposal was accepted by the UNGA officially marking April 2nd as World Autism Awareness Day. And we also really need to acknowledge Qatar's groundbreaking hosting of the first ever accessible World Cup where they had accessible features within the stadiums and six sensory rooms that could be utilized by individuals on the spectrum as well as individuals who had different sensory profiles. Looking a little bit closer to Qatar Foundation within Qatar, you know, Qatar Foundation has really built an incredible ecosystem around autism, spanning diagnosis, specialized education, community support, and research and innovation. So in 2016, RINAD Academy was established, and RINAD Academy is a school for children who are on the spectrum for Qatar and the region as well. In addition, to be able to better support autistic individuals and their families and to meet their challenges and needs. In 2023, QF launched a task force. This task force was led by Dr. Dina Al-Thani from HBKU, and I served as the research lead. And it really focused on, you know, building a 10-year strategy for autism for QF. And the strategy was launched in April of 2025. And it focused on four main priority areas, looking at health, you know, education and employment, research and innovation as well as autism support for the autism community in general and it really put together you know specific outcomes and targets that should be achieved by 2035. You're just mentioning their strategy it seems like this has been a long time coming because when you talk about strategy in recent years a lot has changed when it comes to autism but there's been a part of Qatar Foundation strategy has included building an autism community hub here what does that provide exactly and how can it help the autistic community as well as families of those individuals moving forward when when there is perhaps a diagnosis or a lack of it so thank you for mentioning this actually one of the most recent outcomes and the first outcomes of the strategy was the autism community hub and for us to really understand the importance and the significance of this hub, we have to look at it from the viewpoint of families themselves. So imagine having a family that just received a diagnosis. And so the first thing that goes through their mind is, you know, where do we go from here? There's a lot of questions, you know, what services are available to my child? Looking at, you know, how does schooling and education look like for my child? And a lot of families often require extra support. So where can they go for counseling. And so until recently, all of this information, you know, families had to go out and look for it themselves. And it was a very fragmented way of kind of trying to obtain this information. What the Autism Community Hub does is that it integrates all this information into a single platform. So it brings together services, programs, information across seven different pathways, providing information on screening and diagnosis, on specialized education, on therapy services family support higher you know higher education and employment vocational training and skill building as well and community services so you could look at the autism hub as a one-stop shop you know for for families across all stages of the autism pathway and I really do invite everyone to share these resources with friends and families or loved ones who may need it yeah I actually have someone who was asking about this just last week I like the idea of a one-stop short because it can be very tricky terrain when you know a family is introduced to something and they need help with with navigation there um as i was saying in recent years you know we've also seen a lot of changes when it comes uh to autism from how it's being perceived by people maybe by society um to how it's also being uh diagnosed but you've previously as you were just mentioning earlier that said that you know we're talking about awareness when it comes to autism but the world does need to move on from just awareness to advocacy how so so awareness is always the first step and it's a very important first step so over the past two decades awareness really helped the global community better understand what autism is and help us understand that you know autistic individuals as part of our communities and be able to understand the challenges and the needs of the autism community and it's really through awareness that we saw you know we need better screening and diagnostic methods and we've seen a global research trend that's going into you know establishing better diagnostic methods and it's through awareness that we've also seen a shift between asking autistic individuals to adapt to their environment to ensuring that the current environment is accessible to autistic individuals meaning more sensory friendly rooms you know more accessible communication methods and more trained staff that understand the behavioral differences of the autistic and why is for example sensory room important for for people with autism a lot of autistic individuals and children they do have different sensory profiles and so they can easily get overstimulated and sensory rooms provide them kind of like a safe space for them to go and be able to interact with the environment in some in a way that's more comfortable for them. What are some of the misconceptions when it comes to autism? When I first started I had a lot of questions myself You know, what defines autism? You know, all the different misconceptions, also depending on where you are geographically, perhaps. So awareness has really gone a long way for us to kind of, you know, overcome a lot of misconceptions that comes around autism. But, you know, I think there's still some misconceptions. And I think one of the biggest misconceptions is that autism looks the same for everybody and that simply isn't true so autism is a spectrum meaning that it's very heterogeneous and we can have two autistic individuals that have very different sensory profiles or have different you know communication skills different strengths and weaknesses so support really has to be individualized when it comes to autism and we've seen this you know through A-Sense center where we look at so A-Sense is co-founded by myself and my colleague, Dr. Dina, and the idea behind it is that we're leveraging emerging technologies, sensing technologies, and AI to be able to personalize content and education and therapy for autistic individuals. So I think this is one of the misconceptions still around. Another misconception is that autism is a childhood disorder. And again, that's simply not true. Autism is a lifelong neurodevelopmental disorder. So that means children who have autism eventually grow up to become adults who have autism and so the system and you know support system really needs to be able to provide support at all stages of the autistic you know autism life pipeline and i think we've already started seeing this in initiatives like the cutter foundation strategy for autism you know they've highlighted pathways for employment and higher education and vocational training. And we've also seen this in initiatives like the GATT, where they really take one of their pillars is to be able to provide lifelong system of support, you know, not only on a national level, but on an international level. You mentioned the Autism Sensing Centre, you're co-founder of that at HBKU, and it's called ASENSE. Tell us more about that project. Okay, so A-Sense is co-founded by myself and my colleague, Dr. Dina Althani, and the idea behind A-Sense is that we really focus on leveraging emerging technologies, state-of-the-art sensing technologies, as well as artificial intelligence, to be able to understand behaviors of autistic children a little bit better in a more objective way. And then utilize that, you know, understanding to navigate more personalized learning schemes and develop more tailored interventions and therapy methods. Some of the examples that we're working on, you know, look at can we assess, you know, attention objectively and through technologies? Can we look at engagement during play, you know, between children playing through computer vision? You know, can we have a video and can it tell us instances that the child is engaged or not engaged? We also look at using artificial intelligence to be able to let us know different types of cognitive functioning. So like planning skills, we're looking at assessing planning skills through games and through eye tracking. And so this is the focus. It's really AI-enabled personalization for children with autism. That's the focus of the work that we're really doing at HBKU and at ASENSE in particular. And then beyond ASENSE, we do a lot of work at HBKU that's very multidisciplinary. So looking at, you know, autism from the genetic and the biological dimension to looking at autism diagnosis, you know, leveraging eye tracking to be able to support better screening and diagnostic methods. And beyond just technology aspect, you know, a lot of the work at HBKU, you know, looks at the intersection of autism and policy and inclusivity and accessibility, as well as, you know, developing systems and services for autism. And with that, you take that back to GAT. to expand perhaps for it to be implemented globally absolutely so again with the gaps you know regional hub model Qatar is going to serve as the regional hub for the MENA region and then we have the bilateral foundation that's going to be piloting the hub for the Central Asia and Autism Speaks for North America but so ASENSE will really be looking at you know scaling technologies and how we can leverage technologies and provide such technologies in the region for MENA. So this is how we look at, you know, how we can scale the work that we do at Hamad bin Khalifa to support the wider community. So that's really interesting because, of course, sometimes what might fit for one country might not fit for others. But I wanted to also ask you beyond advocacy, as I was saying, some countries might have the structure in place. maybe they don't know how to implement it and therefore there becomes a a big reliance on families of people with autism how can that be addressed or in what ways is this being addressed by GAT? So I think I mean the conversations are already there and I think both the local the regional and the international communities have already begun to realize that support for autism cannot you know solely be on the shoulders of families and although families are you know amazing advocates and their lived experiences should always continue to shape changes that should come around autism but I think initiatives like the GAT are already starting to you know change the conversation from family you know based advocacy to more community and international based advocacy we have also initiatives like the strategy we you know on the task force you know it doesn't it didn't really the task force didn't really ask parents and families to navigate the system better it's really you know try to optimize the current systems and meet the needs um for for autism community um so i think you know there is already a progressive shift that's happening on different um levels locally regionally and internationally that's really um driving advocacy from previously being family oriented to being more community and government and you know um different institute oriented so there we're talking about um you know reliance on families and perhaps shifting and moving away from that but you've talked about increased global awareness in helping shift that responsibility from just being families to also including community members perhaps leaders um how do you make sure that people that do have a form of autism wherever that is in the spectrum are involved that perhaps they're not entirely having decisions made for them and that they are the ones that are driving that conversation forward for themselves their community and for the future when it comes to that sort of support that they need now this is a really important question and i think this brings us to a very important principle which is nothing for autism should be designed without autistic voices so um you know autistic individuals and their families as well as their lived experiences they really need to be at the heart of any initiative that happens around autism whether it's you know establishing policies for autism or research and development or you know community services it's really important that we include autistic individuals and their families from the very beginning and not just consult them at the very end and again on both local and national and international level we've been seeing this you know looking at the international level there's many organizations that are co-led or influenced heavily by, you know, families and autistic individuals. We have, again, the strategy, the task force. So on the task force, we had several members from the autism community, including parents who heavily influenced the QF Autism Strategy. And we have ASENSE, you know, the work that we do there. All of our work there is co-designed with autistic users and end users from the very beginning and throughout the research. Could you give examples of how that input is helping? This is a good question. So a lot of times we design technologies for a challenge that we believe is needed, but we really don't understand what are the current challenges if we don't have these conversations with the end users. So if I'm not able to sit with, you know, the therapists and the educators who sit with autistic children on a day-to-day basis or the families themselves, I won't really understand the critical challenges on a day-to-day basis that they face. And so at Asense, we do, and we sit and we listen. And one example is a project that we have on attention. You know, we sat with the therapist and she just says, we really don't know if the child is giving attention or not during this linear short time that we're providing them the therapy. And so it went back, you know, and we thought, well, how can we leverage AI and the technologies that we currently have to be able to objectively assess whether a child is paying attention through their behaviors, you know, through eye gaze and their body movements, and then provide this insight to the therapist so she can, you know, either personalize the intervention or stop and readjust and just to provide more insights to her. So without these conversations with, you know, the experts, we really wouldn't know how to, you know, design meaningful and impactful technologies and solutions. And perhaps more personalized? And exactly, in more personalized solutions. So because autism is a spectrum, you know, therapy and care and intervention really needs to be personalized. And the only way to be able to personalize technologies is to be able to sit, you know, with individuals who have autism and be able to understand what are their needs and how technology can accommodate their needs. Now, of course, the conversation right now, certainly in the headlines, has been about AI recently. How is it helping you, AI? And what do you see the future of AI when it comes to being able to perhaps diagnose autism or so on and so forth? So AI really has the capacity to really revolutionize autism support. But before I talk about AI, I wanted to kind of discuss a little bit about, for example, how is autism diagnosed? So we know that autism is a behavioral disorder. And so children who have autism often exhibit differences in their behavior. And so experts like, you know, developmental pediatricians or psychologists really look at these behavioral differences and look at the, you know, developmental history to be able to make a diagnosis. And the diagnosis is usually based on certain standardized psychology tests like the ADOS, but it's really focused on the clinical judgment of that particular expert. And so it introduces some subjectivity in the diagnosis process. And so this is where we see AI helping. We could utilize AI to kind of assess more objectively the behaviors of children and provide this insight to, you know, the development specialist or the psychologist. So they're able to provide more objective diagnostic practices. Another venue that, you know, AI can really be important in is in therapy. So again, you know, autism is very heterogeneous so a one-size-fits-all model simply doesn't work when it comes to autism and can you imagine how long a therapist would have to sit with each individual child to be able to really understand their learning preferences what engages them how they pay attention to be able to understand their sensory profile I mean this simply isn't doable you know at a human scale and it doesn't scale as well so we see a lot of potential for AI in this field to be able to you know be objectively assess behaviors to look at eye gaze to be able to assess attention and engagement and then be able to utilize that information to create you know more targeted intervention and personalized learning methods for you know therapists to be able and educators to be able to use in the centers and at schools as well so it sounds like certainly a much more efficient way as AI seems to be showing in in many parts of our lives but you know with AI it's still a work in progress there must be some sort of pitfalls or concerns that you may have surely so absolutely I mean anytime we talk about artificial intelligence we have to always proceed with caution right and we have to always remember that AI should always augment and support humans and never replace their decision making this is a key understanding that we have as you know when we're talking about AI and health and for humans also ethical considerations should be key in anything that we develop with AI, looking at data privacy and data ownership, looking at bias as well. And another aspect that we should be careful about, because AI is the new big thing. AI isn't valuable just because it's AI. Whenever we're talking about using AI, we really need to make sure the algorithms and the systems and the technologies that we're developing are truly impactful or else they're just going to sit on the shelf and you know not be used so again we need to be having conversations with the end users to make sure that whatever we're building is going to make an impact on the day-to-day life you know of children and individuals with autism and families. Dr Marwa I can hear your sort of passion when it comes to this this is something that you've worked on for a very long time on a personal level why have you dedicated so much of your career to understanding autism? So I think it's really something fundamentally human right I think the challenges that we hear from families and from autistic individuals they resonate with us all on some fundamental level you know we all want to be included and fit in we all would like to have you know opportunities that allow us to reach our full potential and so I think this is one of the reasons why I'm so passionate about it and also as a mother myself of two little boys a lot of the times when we hear stories from the parents um i always envision my children in the same you know kind of environment and in my line of work and in ASL we deal with the children all the time so i'm you know either engaging with them and and seeing them you know in their environment really ignites my passion even further and i think this is why i'm you know very passionate about ASL and the work that i do you know because we speak with families really understand their concerns and then try to leverage my expertise and our expertise and you know what we can do to help develop solutions and technologies that could help you know hopefully be able to alleviate some of their challenges that they have on a day-to-day basis yeah and it's such a personal journey but for many um dr marwa karaki an associate professor in the college of science and engineering at hamad bin khalifa university here in qatar and also co-founder of the autism sensing center of the college of science and engineering at HBKU, thank you very much for your time for speaking to Center State thank you very much, I appreciate it