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- Only 27% of people with autism are categorized as having profound autism, yet they’re largely excluded from research.
- The average time from autism research to treatment spans over 17 years, delaying crucial interventions.
- The ARIA autism initiative speeds up profound autism treatment through streamlined clinical trials that let many people join.
- The IMPACT network links leading centers to conduct harmonized autism clinical trials across sites.
- ARIA’s success is measured not just by publications, but by real-world treatment impact and participant diversity.
Autism clinical trials have often focused on narrow groups of people. This has left out individuals with profound autism, who need the most support. The Aligning Research to Impact Autism (ARIA) initiative, supported by the Sergey Brin Family Foundation, aims to fix this. It works to turn brain science into treatments people can get faster. The nationwide IMPACT network is key to this. ARIA pictures a future for autism research that is fair, allows many people to take part, and gets things done.
What Is Profound Autism?
Profound autism is not a separate medical diagnosis. It is a way to describe people on the severe end of the autism spectrum. These people have intellectual disabilities, can barely or not speak, and greatly rely on caregivers for daily tasks. Profound autism includes some of the most vulnerable and underserved people in the autism spectrum.
According to a 2022 report by The Lancet Commission on the Future of Care and Clinical Research in Autism, about 27% of people with autism fit the description of profound autism (Lord et al., 2022). These people often cannot speak, work, live alone, or handle daily risks without help. Moreover, some may experience additional health issues, like epilepsy, severe stomach pain, sleep problems, or hurting themselves. This makes care needs much bigger.
Even with these great needs, most autism research has looked at people with better thinking and speaking skills. It is simpler to sign up these participants for studies. They can follow surveys or join talk therapy. Because of this, people with profound autism are left out. It’s not usually planned this way, but it happens because of the way traditional studies are set up.
Why the Research-to-Treatment Gap Hurts Most Here
Turning science discoveries into treatments is a very slow process. It takes an average of 17 years from finding something in the lab to using it in the clinic (Morris et al., 2011). For people with profound autism, this wait is not just upsetting—it can cause harm. As time passes, the best chances for development get smaller. Without timely treatments, physical and behavior problems can become harder to fix and stuck in place.
Because of this, profound autism treatment cannot wait for science to move slowly. Families talk about facing daily crises. These include children who cannot sleep all night, teens whose aggressive actions put siblings in danger, or adults who become too hard to manage as they get older. These are not just ideas; they are pressing problems that keep happening. And there are no approved medicines or treatment plans made specifically for profound autism.
Also, treatments that exist are often not tested on people with profound autism. Many medicines approved by the FDA for being irritable or worried are tested on kids and teens with autism who have higher thinking skills. This leads to a risky belief that the results will be the same for everyone. In truth, people with profound autism might process medicines differently. They may react more strongly to side effects. And they often cannot say how the treatment is affecting them. This creates big issues in care, both about what is right and what works in practice.
Meet ARIA: A New Path for Research That Helps
The Aligning Research to Impact Autism initiative started to directly meet this need that isn’t being met. With money from the Sergey Brin Family Foundation, ARIA wants to make autism clinical trials go faster. It does this not with a top-down school approach, but with a model focused on researchers and families working together at the local level. It is built around a goal to bring urgency, fairness, and exactness to the parts of autism treatment that have been most overlooked.
ARIA works with a few main beliefs
- Autism is not a sickness to be fixed. But problems like being aggressive, having stomach pain, or sleep issues can—and should—be treated.
- Those who do research must put groups of people often left out first. This means especially people with profound autism.
- The system matters. To change results, we must first change the systems that cause delays in research.
So, ARIA’s main goal is not to make autism seem less important as an identity. It is to meet needs that require care in a way that makes life better. This includes improving independence, the ability to communicate, and basic health stability for people who need a lot of support.
The IMPACT Network: How the System Works
At the heart of ARIA is the IMPACT network. This stands for Infrastructure for Mechanistic, Precision-And-Clinical-Therapeutics. This network connects universities, children’s hospitals, and research centers across the U.S. It helps studies where people work together. This cuts down on doing the same things twice and makes the science better.
Four main sites act as centers for research where people can take part. These centers are made to include people with profound autism. They include big research places like
- UCSF Benioff Children’s Hospitals
- Boston Children’s Hospital
- UCLA Center for Autism Research and Treatment
- Children’s Hospital of Philadelphia
Each center is asked to sign up people from different backgrounds. But they also have to set up ways for people to join that do not keep out participants who have trouble speaking or thinking. Right from the start, these centers put stress on
- Trial appointments that can be changed (like in the evenings or on weekends)
- Help on site for sensory and behavior needs
- Staff trained to give special support for autism
- Help with rides, home visits, and support in many languages
By putting these things together with cloud-based data systems and standard ways to measure things, these research hubs are more than just places for tests. They show a way to run autism clinical trials that works and can be copied in many places, making them easier for people to join.
Why Research Networks Do Better
The field of autism research has often had problems with studies that are separate, look at only a small part, have few people joining, and whose results cannot be copied. Methods for collecting data that are not the same, rules about who can join that leave people out, and study designs made only for one place have led to wasted effort and unfairness.
By contrast, IMPACT aims to break down these separate efforts by using the same steps everywhere. Instead of starting over with research steps at every site, the network makes trial designs, consent forms, lists of data terms, and tools for checking results all the same. This model, where things can just plug in and play, helps universities and local centers take part without having to build a whole system from scratch.
The advantages are big
- Signing up participants faster
- Data sets that can be copied
- Easier to work together at many sites
- Data shared that makes the study results stronger
Finally, this model sees clinical research not as a single action. It sees it as part of a process where people work together. This process always aims for treatments to be ready for use.
Tackling Real-World Challenges: Treating Problems, Not Names
ARIA’s new way also involves using an approach to autism treatment that looks at specific areas of function. Instead of treating “autism,” researchers focus on specific areas that affect a person’s quality of life. These include
- Sleep problems (like not being able to sleep or having bad dreams)
- Stomach and gut pain (constipation, irritable bowel pain)
- Being aggressive or hurting oneself
- Trouble with movement and not being able to move
- Problems with talking and understanding
- Being very sensitive to sights, sounds, etc.
When doctors treat these problems, the care situation for the person can change a lot. And their ability to do things on their own can increase. A child whose stomach pain is taken care of might sleep and go to school more regularly. An adult who is less aggressive might be able to get along better with caregivers or join job training.
This practical focus matches what families care about most. It also opens up ways to treat that can be made specific to the person, measured, and used on a larger scale. This is true no matter where someone is on the autism spectrum diagnosis.
Letting People Join From the Start—Not As an Afterthought
A key part of the ARIA autism initiative is putting fairness first. Letting people join is not just added at the end of how research is planned. It is a basic part of every rule and step.
Key steps include
- Hiring recruiting teams that speak many languages and understand different cultures.
- Putting caregiver voices into research plans.
- Putting participant ease first (like doing tests at home).
- Not keeping people out because of their ability to speak, race, or how much money they make.
This is very important for building trust in groups of people often treated badly or ignored by medical systems. When people see themselves in the researchers, the places where studies happen, and the support systems, joining a trial is not only possible, but it also gives them power.
Can We Learn From What Worked Before?
ARIA looks to successful models like SPARK (Simons Foundation Powering Autism Research) for ideas. SPARK became the biggest study on autism genetics by focusing on
- How easy it is to join
- Using online tools
- Getting many people involved
- Clearly sharing what was found
ARIA applies these same principles, but with an even bigger focus on designing things with the community. By asking self-advocates and caregivers to help decide what research is important, ARIA bases its work on real life experience. This step of working together helps make the work more useful, keeps people involved, and has a bigger effect over time.
Real-World Help for Families and Caregivers
For many caregivers of people with profound autism, the ARIA initiative offers more than hope. It provides a lifeline. There are many real-world benefits
- Finding useful treatments faster for aggression or fits of rage
- Tools to handle waking up at night and having too much trouble sleeping
- Medicine trials that are safer and better tested for people who do not speak
- Caregivers feeling less tired out because treatments are more specific
- Better planning for when teens become adults
Most importantly, these good changes are not years away. They are planned to happen faster, within shorter times from trial to treatment. By making things go faster, ARIA may stop crises and lower costs to society over time from emergency care, being placed in institutions, or caregivers missing work.
How Will ARIA Measure Its Success?
ARIA will measure how well it is doing by looking at both science results and results for the community. This includes
- How many autism clinical trials start that include people with profound autism.
- How well the studies sign up people from different backgrounds.
- Creating and using ways to measure results for people with all levels of thinking and talking skills.
- How fast study progress leads to tools that doctors and families can use.
- Growing the system so it can help people with other conditions related to brain development.
Success is not just about mentions in journals. It is about real change, ways of working that can be copied easily, and making the daily lives of people with profound autism and their caregivers better.
Ethics, Fairness, and Letting People Join: Beyond the Science
At its heart, ARIA asks us to think again about who should be part of research. It gets rid of old rules for who can join, like minimum IQ scores or needing to speak well. By doing this, ARIA shows that how smart someone is does not decide their value and that letting people join must be done on purpose, not just happen by chance.
It goes against the old idea that patients who are seen as “difficult” should be kept out so the data looks neater. Instead, ARIA says that science is better, more careful, and fairer when it fully shows what it is like to have different brain experiences.
Looking Ahead: Can ARIA Become the Best Way?
The ARIA autism initiative could be useful for more than just autism. If its system works well, similar ways of doing research that turn science into treatment could help people with Rett syndrome, Fragile X, or cerebral palsy. Working with schools, local health centers, and Medicaid could bring new study ideas into everyday care.
Finally, ARIA offers something new—quick, real clinical progress that includes people who have often been left out. Families who have waited too long now have a reason to hope: the future of profound autism treatment might finally be catching up to what they need.
Citations
- Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., … & McCauley, J. B. (2022). The Lancet Commission on the future of care and clinical research in autism. The Lancet, 399(10321), 271-334. https://doi.org/10.1016/S0140-6736(21)01541-5
- Morris, Z. S., Wooding, S., & Grant, J. (2011). The answer is 17 years, what is the question: understanding time lags in translational research. Journal of the Royal Society of Medicine, 104(12), 510–520. https://doi.org/10.1258/jrsm.2011.110180
