The Functioning Labels Debate: Why It Matters for Your Family’s Advocacy
This isn’t an academic argument happening somewhere else. It shapes policy, drives funding decisions, and determines whether your adult child’s needs are even visible to the systems meant to serve them.
Whichever broader position you hold, using specific, concrete support-needs language, what your family member actually needs, rather than a functioning label, makes your advocacy communication clearer and harder to dismiss either way.
Where the terminology has moved
The DSM-5’s severity levels, support-needs language, and identity-first versus person-first language all reflect an evolving, unsettled framework.
The autistic community’s perspective
Many autistic self-advocates argue functioning labels erase real struggles in those labeled ‘high-functioning’ and real strengths in those labeled ‘low-functioning.’
Visibility in policy is a genuine concern
Some caregivers of Level 2/3 adults worry that moving away from functioning language makes their family members’ distinct, significant needs harder to see in funding debates.
Both concerns can be legitimate at once
This doesn’t have to be a contest between communities. Both concerns point at real, documented problems worth taking seriously.
The practical advocacy impact is real
How you describe your family member’s needs in a CMH meeting or legislative testimony directly affects whether services get approved.
Specific, concrete language works best
Describing actual, specific support needs, regardless of which broader terminology debate you favor, tends to be the most effective advocacy approach.
Language that tends to work in advocacy settings
Describe specific strengths and specific, real struggles
Describe specific support needs and specific abilities
Cite documented, assessed support needs directly
Concrete impact and specific need beat broad labels
Documented, individualized need drives approval more than labels
Corinne had always described her son as ‘severely affected’ in CMH meetings, a phrase that felt accurate but somehow never seemed to move a stalled request forward. A disability rights attorney suggested she instead describe exactly what he needed and exactly what happened without it: specific hours, specific tasks, specific consequences of a gap. The next meeting, using that more concrete language instead of the label, approved a request that had been denied twice before.
When you’re advocating and language becomes a factor, here is what to do
Escalation ladder
- 1Notice which functioning labels you’ve been using out of habit.
- 2Replace broad labels with specific, documented support needs.
- 3Describe concrete impact: what happens without a specific service.
- 4Use this specific language consistently across meetings and testimony.
- 5Stay aware that this debate exists, without needing to resolve it personally.
- 6Prioritize whatever language actually moves your specific advocacy forward.
Have ready
- A review of language currently used in your advocacy materials
- Specific, concrete support needs written out, replacing general labels
- Specific examples of impact without a needed service
- Consistency across CMH meetings, testimony, and written appeals
- Awareness of both community perspectives in this debate, without needing to fully resolve it
This debate will keep evolving. Your advocacy doesn’t have to wait for it to settle. Specific, documented need moves meetings regardless of which broader label debate you land on.
Corinne had described her son as severely affected in every CMH meeting for years, a phrase that felt honest and accurate to her but somehow never seemed to actually move a stalled service request forward, meeting after meeting ending the same frustrating way. A disability rights attorney, reviewing her notes before an appeal, suggested dropping the label entirely and replacing it with something more specific: exactly what hours of support he needed, exactly what task those hours addressed, and exactly what had happened the one time those hours weren’t available. The next meeting approved a request that had been denied twice before.
Why the terminology keeps shifting
Diagnostic and descriptive language around autism has moved considerably over the past decade, from high-functioning and low-functioning terminology toward support-needs language, DSM-5 severity levels, and ongoing debates over identity-first versus person-first phrasing. None of this is fully settled, and families are often left navigating shifting language without clear guidance on what actually serves their advocacy best.
The autistic community’s concern, taken seriously
Many autistic self-advocates argue that functioning labels erase real individual variability, minimizing genuine struggles faced by people labeled ‘high-functioning’ while simultaneously minimizing genuine strengths and capacities in people labeled ‘low-functioning.’ This concern is well documented and reflects real harm experienced by autistic people navigating a label that rarely captures their actual, specific experience.
The high-support-needs caregiving community’s concern, taken equally seriously
Some caregivers of Level 2 and 3 autistic adults worry, with real justification, that moving away from functioning terminology in policy and public conversation can inadvertently make their family members’ distinct and significant needs less visible in funding debates and service design, particularly when broader autism advocacy increasingly centers the experiences of more independently functioning autistic self-advocates.
What actually moves advocacy forward, regardless of where you land
Specific, concrete, documented support-needs language, describing exactly what your family member needs and exactly what happens without it, tends to be more persuasive in CMH meetings, fair hearings, and legislative testimony than any broad functioning label, on either side of this debate. This practical approach doesn’t require resolving the larger philosophical question. It requires being specific.
Corinne’s son’s needs never changed between that denied request and the approved one. The label describing him did. Specificity, more than any particular label, is what actually got the meeting to say yes.
Jim Palasty is the founder of OASIS for Autism and a single father of an adult autistic daughter in Michigan.