Acceptance Must Include Support Needs
This week, I felt very alone at times in my advocacy work. As a clinician and the mother of a 20-year-old autistic daughter with extensive support needs, I found myself defending why suffering, safety, and caregiver well-being belong in neurodivergent affirming conversations.
It took me five years to say how frightened we were for her well-being and our family’s safety. We lived with exhaustion, hypervigilance, and dangerous situations.
When I describe that fear, I am sometimes told to center my daughter or stop seeking pity. What specifically have I written that suggests her needs were secondary? Her worth has never been in question. We needed help keeping her and everyone around her safe.
These experiences deserve attention. In a study of 1,380 autistic children and adolescents, parents reported that 68% of the children had demonstrated aggression toward a caregiver at some point. This describes aggression within that sample, not the percentage of caregivers injured or a characteristic of every autistic person. Acknowledging these experiences should lead to support, not shame. (Kanne & Mazurek, 2011)
This week, I asked neurodivergent-affirming clinical spaces how they address autonomy alongside safety, acceptance alongside suffering, caregiver and sibling well-being, communication barriers, and ethical decisions when adequate services are unavailable.
The responses differed sharply from those in caregiver spaces. Few clinicians explicitly affirmed that all these concerns belonged in the conversation. Caregivers described exclusion and shame. I was also removed from two clinical spaces following these discussions. Words from my professional group were shared elsewhere and, from my perspective, reframed without context.
When Language Leaves People Out
Some expressions are meaningful when people choose them for themselves. Applied dismissively to others, they can obscure needs:
· “Autism mom,” “warrior mom,” or “martyr” can discredit caregivers seeking help.
· “Autism is autism” or “We’re all disabled here” can erase meaningful differences in daily assistance and safety needs.
· “Superpower,” “neurospicy,” or “Everyone is a little autistic” can trivialize substantial disability.
· “Accept your child” or “They’re not suffering; you are” can dismiss distress and portray help seeking as rejection.
· “That’s a co-occurring diagnosis” can derail support for a person whose needs overlap.
· “Behavior is communication” offers a starting point, but families also need assessment and practical assistance. When this principle is used dismissively, it can turn complex needs into accusations of caregiver failure.
· “Presume competence” must include recognizing intellectual disability and providing necessary support.
· “Center autistic voices” must include people who cannot independently participate online.
· “You’re making your child look bad” can silence necessary discussion of unmet needs.
Shared autistic identity does not automatically qualify someone to represent another autistic person. Caregivers have limits too, but their knowledge should not be dismissed. The person’s own communication, preferences, and rights must guide advocacy.
When Providers Reinforce These Narratives
How does “My child is suffering, our family is exhausted, and we need help” become interpreted as “This mother sees her child as a burden” or “She has made her child’s autism her entire identity”?
When providers repeat these judgments while calling themselves affirming and labeling those who question them non-affirming, their professional authority gives those assumptions added weight. Requests for support become reframed as rejection, while the autistic person’s distress and unmet needs are overlooked. Families may become reluctant to disclose dangerous situations, fearing judgment from the professionals they need.
Clinicians can challenge harmful language, protect dignity, and listen carefully to families. Calling ourselves affirming does not establish that our actions are affirming. We remain accountable for whose experiences we dismiss and whether our responses help people access support.
The Whole Person Needs Support
My daughter experiences her autism, intellectual disability, communication differences, and distress together. Families should not have to assign every difficulty to one diagnosis before receiving help.
A study using the 2016 National Survey of Children’s Health estimated that 77.7% of autistic children ages 3–17 had at least one mental health condition reported by a caregiver, and 49.1% had two or more. These estimates concern mental health conditions in children, rather than every co-occurring condition or autistic people of all ages. (Kerns et al., 2020)
Affirming care must address the full range of needs a person experiences.
Movements Must Examine Their Own Impact
A commitment to inclusion does not place a movement beyond examination. Research describes an “activist’s dilemma”: some protest tactics attract attention while reducing public support. Although this research did not examine neurodivergent affirming spaces, it highlights why intentions and outcomes both matter. (Feinberg et al., 2020)
Online dynamics also deserve attention. An analysis of 563,312 tweets found that each additional moral-emotional word was associated with approximately 20% greater sharing, particularly within ideological groups. This research did not examine autism advocacy or establish that widely shared messages are harmful or inaccurate. (Brady et al., 2017)
My concern is what happens when judgments about caregivers are repeated and rewarded without context, especially when providers give those judgments professional credibility while labeling disagreement “non-affirming.” That is my interpretation of my experience, rather than a research finding about the neurodiversity movement.
A movement committed to dignity must examine whether its practices silence people whose needs it intends to represent.
Support for Families Like Mine
Five years after our family’s crisis and my daughter’s move into a residential education setting, I fear that too little has changed. Autistic people with full support needs and their caregivers still seem pushed into the shadows.
My greatest concern is that families now face compounded risks: systems that fail to provide adequate help, and dismissive narratives that undermine their credibility when they speak up. When providers reinforce those narratives, they further erode caregivers’ dignity and may make seeking support feel even less safe.
Behind every dismissed plea is an autistic person whose needs may remain unmet. Five years later, I am still asking: where can families turn and be heard?
References
Brady, W. J., Wills, J. A., Jost, J. T., Tucker, J. A., & Van Bavel, J. J. (2017). Emotion shapes the diffusion of moralized content in social networks. Proceedings of the National Academy of Sciences, 114(28), 7313-7318.
https://doi.org/10.1073/pnas.1618923114
Feinberg, M., Willer, R., & Kovacheff, C. (2020). The activist’s dilemma: Extreme protest actions reduce popular support for social movements. Journal of Personality and Social Psychology, 119(5), 1086-1111. https://doi.org/10.1037/pspi0000230
Kanne, S. M., & Mazurek, M. O. (2011). Aggression in children and adolescents with ASD: Prevalence and risk factors. Journal of Autism and Developmental Disorders, 41(7), 926–937.
https://doi.org/10.1007/s10803-010-1118-4
Kerns, C. M., Rast, J. E., & Shattuck, P. T. (2020). Prevalence and correlates of caregiver-reported mental health conditions in youth with autism spectrum disorder in the United States. The Journal of Clinical Psychiatry, 82(1), 20m13242.
https://doi.org/10.4088/JCP.20m13242
