Guest Blog: What Do Moderate Support Needs Really Look Like?
Read now (8 mins) | A Much-Needed Lived Perspective on Moderate Support Needs Clarifying the Grey Zone
A couple of months back, I saw a beautiful and detailed comment in a Facebook group about the realities of living with moderate support needs, something that is so often misunderstood, overlooked, or misrepresented within the Autistic community. In autism spaces, the public conversation often gets framed as a binary:
On one side, parents and caregivers of children advocating for resources, services, safety, and visibility for their high support needs autistic kids, including those who are often nonspeaking, have co-occurring intellectual disabilities, or require 24/7 care.
On the other side, adult autistic self-advocates who are speaking, articulate, and often perceived as “independent” or, god-forbid, “high functioning”, though many of us still experience significant internal struggles or invisible disabilities. We are passionate about disability rights, neurodiversity, and opposing ableist or compliance-based models and speak out against narratives that frame autism as a tragedy or burden.
But what about our community members whose needs are neither high nor low, but somewhere in the middle where assumptions are often made and support is inconsistently offered or misunderstood?
With the exception of Love on the Spectrum, I can’t think of any arena where this part of our community is heard, valued, and respected. (And I’m not sure we can say Love on the Spectrum is heavy on the respect.) I reached out to the commenter and asked if she might be open to expanding on her insights, and I’m honored to share this guest blog post with you today. Her piece sheds much-needed light on what it means to live in that “in-between” space.
Autistic culture is for everyone, and all autistic voices are valid and valuable in this conversation. It’s not enough to center only the most visible narratives; we also need to amplify the nuanced, complex, and deeply lived stories that don’t fit neatly into the usual categories.
This post is an invitation to listen, learn, and reflect on how we, as a community, can do better in acknowledging the full spectrum of support needs—and the humanity of those living them.
Guest Blog | by Luma
July 30, 2025
Hello! I'm an autistic person with moderate support needs. And I am writing this to clarify a few things that the wider autistic community misunderstands about having moderate support needs.
When people don't talk to us about what it's like to have moderate support needs, wrong and even harmful information is being shared. I have noticed our lived experiences being spoken over, and I get it because not all of us can speak up for ourselves very well, and there aren't as many of us on the internet. And most people don't mean to, l know that, but our experiences should still matter.
So, let's jump right into some terminology.
🎉 Learning, yay! 🎉
"Moderate" vs "Medium" Support Needs
I notice that a lot of people are starting to remember that moderate support needs exist, outside of only high and low support needs. But people are calling it by the wrong name. Medium support needs are not a thing. The correct term is moderate support needs.
Most things in the medical world are "moderate" not "medium". Every time I hear someone referring to medium support needs, I know that they probably haven't been getting their information from someone who actually has moderate support needs.
What Are Moderate Support Needs?
Support needs are based on an overall view of a person's needs. Some may be high, some may be low, but for someone with moderate support needs, our overall support needs are moderate. Some people may have very low support needs in some areas, but they overall have high support needs. Some people may have very high needs in one area, but when their needs are viewed collectively, they may have low support needs.
I'm not considered high support needs because I'm very language-able, can speak well (thanks to the support of speech therapy), have no intellectual disabilities, and don't need constant supervision. I've been asked about daycare programs, but my caregiver meets my needs well enough that I don't need to attend one. I can help out with some tasks around the home, and I can take care of a bunch of my hygiene needs on my own most of the time, and I have been able to make my own friends.
Even with all of my abilities, the supports my need are still considered substantial.
I can’t live independently or work.
I need a caregiver to be with me full-time most days.
I have not been able to speak for months at a time and needed to write.
I needed educational support in school.
I need help during meltdowns with Self-Injurious Behaviors (SIBs).
I need supervision when out so I don't wander into roads or off of ledges.
I need people to take me places because driving wouldn't be safe for me.
I need help with some parts of hygiene.
And I need lots of support if I want to cook something.
Not all autistic people with moderate support needs are the same as me; some have more social needs and less physical needs. Like all things with autism, it just depends on the person. The individual support needs we have are still different, even when the overall type of support needs we have are under the same umbrella.
"Support Needs" vs "Functioning Levels"
Support needs are not the same thing as functioning levels, for a few reasons.
One reason is, that functioning levels focus on what we can do to contribute. Support needs focus on what we need. The difference in how these two terms make us feel is important. It's hard to live life where your functioning is constantly critiqued. Using the term support needs instead makes me feel like people care about what I need more than what I can do for them.
Another difference is that my functioning fluctuates day to day. What I can do as an Autistic person, and what I am capable of, changes based on a lot of factors, but my support needs do not fluctuate day to day. They can change over the course of a person's life, but not day to day.
I need so many specific supports that I may not be able to even try to go to certain places. Such as most restaurants, the zoo, amusement parks. Definitely not vacations or concerts. Even if I was given a very high amount of supports, things can get dangerous quickly for me even with help. Places that specialize in helping people like me, even sensory-friendly events and camps for people with disabilities, have still had to turn me away because meeting my needs was not feasible for them. So, for people with moderate or high support needs, we may require an impossible-to-obtain level of support to do certain common activities that people with low support needs can do with some extra accommodations.
When our abilities never fluctuate to the point of us needing low supports, it does not feel good when people with low support needs talk about how their support needs fluctuate to moderate or even high support needs when they go to concerts, or traveling, or other specific situations, when outside of those experiences they are doing things daily that we know we will never be able to do. For many of us, these activities remain impossibly out of reach, even with the right supports. Even more so for people with high support needs.
It does not feel good when people with low support needs talk about how their needs fluctuate when they are doing things that we know we will never be able to do.
Needing temporary supports to be in place for specific situations or events is really not the same as needing those same supports every day for survival. All Autistic people need supports, but the truth is that not all Autistic people have moderate support needs, and that doesn't change based on a temporary need for higher supports.
How Moderate Support Needs Affect Personal Autonomy
A lot of supports cost autonomy on some level, and I don't think it's talked about enough. I can't always make my own decisions if I want to do something that isn't safe for me to do. For instance, having support that helps me get places when I can't drive or take a bus means I'm always at the mercy of other people to take me places. I have to check with someone else’s schedule to see if they're free to do things I was invited to do because people have to watch me to make sure I'm safe, since I can’t go to or stay at places alone.
I can’t be trusted to cook, and that affects my autonomy and whether I can eat the things I want. Not being able to go to the grocery store means I can’t always choose the foods I want, although I can request things for special occasions. This is true for all kinds of stores, I can’t just buy a drink when I want one, or new clothes, everything has to be planned in advance, and may take months longer to happen than I’d have liked if at all.
I am so, so grateful for the supports that I have. They make life possible for me. But that doesn’t mean that my autonomy is the same as someone with low support needs.
Assuming Low Support Needs Can Make Us Vulnerable
Because I speak really well and can hold a conversation, sometimes people wrongly assume that I'm low support needs. I have been separated from my caregiver and couldn't speak to tell people what was wrong, I've been left alone in dangerous areas like kitchens or parking lots, I've been scared and alone, and confused.
These incidents have been traumatizing, both emotionally and physically. I have been left with blisters, bone bruises, slipped spinal discs, multiple types of nerve damage purely from tense muscles, and unable to walk because no one could "see" my needs and assumed I would be fine, or that something would be fun. They thought it was okay to keep me or put me in situations I couldn't actually handle or fully understand because they didn't know what my needs actually were.
This kind of situation only gets messier when you are trying not to get infantilized, and your caregiver is a family member. It's scary to be so vulnerable, and for no one around you to even realize how bad the situation you're in is.
Support needs do not have a look. They are defined by how much support we need to survive in our daily lives, not by how well we hold a conversation.
Asking is better than assuming, every time. Assuming can actually be dangerous. I will be in pain every day for the rest of my life, specifically because people have assumed for me what my support needs are. Plus, you never know what specific supports a disabled person needs, so asking is better for everyone.
Final Thoughts
All of us Autistics have support needs, and are Autistic. No one should be left to struggle without support. But we can still have very different life experiences, co-occurring conditions, and privilege. I think it is important to understand different support needs so that no autistic people feel like their life experiences are forgotten, spoken over, or misunderstood.
I’ll leave you with a picture from Worry Lines that I found that I really think sums it up well. Thank you for reading and considering my perspective.
