A new consensus definition for profound autism, introduced at INSAR 2025, aims to ensure families with the highest support needs are included in research.
By: MAC Midwest
At MAC Midwest, we believe every story matters. Yet too often, the voices of individuals with the most significant support needs are missing from autism research. When those experiences are excluded, the findings do not reflect the full spectrum of our community, and families lose access to knowledge that could help.
That is why we were encouraged by an important step forward at the 2025 International Society for Autism Research (INSAR) Annual Meeting in Seattle. For the first time, researchers introduced a consensus research definition for profound autism. The project was supported by the Autism Science Foundation and the Profound Autism Alliance.
The new definition gives researchers clear and consistent criteria so people with profound autism are intentionally included in studies, rather than overlooked.
The Six Parts of the Research Definition
According to the panel, profound autism applies when all of the following are present:
- Autism diagnosis: The individual already meets criteria for Autism Spectrum Disorder.
- Age 8 or older: The definition applies beginning at this age, when support needs and developmental profiles are clearer.
- Ongoing adult support: The person requires daily supervision beyond what is typical for their age to ensure health, safety, and well-being.
- Challenges with daily living skills: The individual cannot independently complete most everyday activities such as bathing, dressing, or preparing food.
- Severe cognitive or communication differences: Either an IQ under 50, or very limited communication (single words or fixed phrases, often just for basic needs). Meeting either one is enough for this criterion.
- Consistency across settings: These support needs are not occasional but are seen across environments such as home, school, and community.
It is important to understand that this is a research tool, not a new diagnosis. Families will continue to receive the same autism diagnoses as before. The purpose of this definition is to give researchers a shared standard, making studies more inclusive and meaningful.
Why This Matters for Families
Families of those with the highest support needs often find that research results do not reflect their daily reality. With this consensus definition, studies can become more accurate, more representative, and more helpful. Over time, this means better insights and stronger strategies to support children, teens, and adults who need it most.
Not every family at MAC Midwest will personally identify with this definition, and that is okay. What matters is that when research reflects the full spectrum of autism, the benefits extend to everyone. By including those with profound needs, studies will paint a more complete picture — one that strengthens services, strategies, and advocacy for the entire community. This progress matters for families everywhere, including here in Minnesota.
Real People, Real Stories
Behind every research definition is a family living this reality each day. Parents and siblings describe profound autism as both deeply challenging and deeply human.
For example, Cassie Stevens, a sister of an autistic young adult, shared her frustration that her brother and others with profound needs are often excluded from research. After attending INSAR 2025, she expressed hope that this new definition will finally bring their experiences into focus.
Families also reflect on the dignity of daily life. In the Dignity Project, parents describe both the struggles and the love that shape their journey, calling for a world that sees their children’s humanity alongside their challenges.
These voices remind us that research is not abstract. It is about people, families, and communities who deserve to be seen and supported.
Our Commitment
At MAC Midwest, we stand with families every step of the way. We welcome this progress in autism research and remain committed to ensuring that learners with profound needs are not only included but valued for the perspectives they bring.
At its heart, this is about recognition. Recognition that every learner, including those with profound needs, deserves to be seen, studied, and supported. That recognition helps create a future where every family belongs, and every child’s journey is valued.
We will continue to share updates as this definition is applied in research, and as new findings emerge that may shape services here in Minnesota. By centering compassion, clarity, and progress, we can help build communities where every learner belongs and every family has the knowledge and support they deserve.
