Why the Hard Parts of Profound Autism Need to Be Seen
There are really two truths that can exist at the same time. Being nonverbal or intellectually disabled does not mean a person's life should automatically become public simply because someone else is caring for them. But there is another reality that sometimes gets pushed aside in discussions about consent. Some people with profound autism and severe intellectual disability may not have the cognitive ability to understand what social media is, what public exposure means, or what it means to give informed consent to sharing a video. Saying, "Ask them for consent," does not solve that problem when the person cannot understand the question.
That puts parents and lifelong caregivers in an incredibly complicated position. They are already making decisions every day about medical care, safety, transportation, education, hygiene, medications, finances, and countless other parts of life. Sharing information about that person's life becomes another decision that has to be weighed against dignity, privacy, and the reason for sharing it. This is where I believe the public conversation often becomes too simplistic. If families are only allowed to show the pleasant parts of profound autism, society gets an inaccurate picture of what profound disability can actually require.
People are generally fine with seeing the smiling photographs, outings, accomplishments, and affectionate moments. But what's missing from that is the self-injury, aggression, screaming, sleepless nights, toileting problems, elopement, destruction of property, medical uncertainty, constant supervision, and a person being unable to explain where they hurt. Those realities are uncomfortable to watch, but uncomfortable does not automatically mean exploitative. There is a meaningful difference between humiliating someone for entertainment and carefully documenting difficult moments because the public, policymakers, clinicians, researchers, and service systems need to understand what these families are actually living with.
Without that visibility, it becomes very easy for society to underestimate the level of support some people require. And there is a cruel paradox here. The people who are least able to explain their own needs may be the very people whose lives are hardest to show because they cannot provide conventional informed consent. If every difficult part of their lives must therefore remain completely private, profound autism can become invisible. This means the public never sees or understands why a mother needs another trained caregiver in the home as protective supervision is indeed 24 hours a day. They don't understand why ordinary respite may not be enough. They don't understand why some caregivers cannot maintain traditional employment. They don't understand why properly trained residential services, crisis support, medical care, behavioral support, and long-term funding matter. Keep in mind, governments tend to fund needs they can see, measure, and understand.
That doesn't mean everything should be shown. There should still be boundaries. Intimate toileting footage, nudity, deliberately humiliating material, or content posted primarily for shock value raises very different ethical concerns. Caregivers can also think about whether someone's identity needs to be shown, whether a difficult moment can be explained afterward instead of filmed, and whether the educational value outweighs the loss of privacy. But I strongly resist the idea that the only ethical portrayal of profound autism is a sanitized one.
If a parent carefully shares a short piece of an extraordinarily difficult reality because they are trying to show what profound autism actually looks like and why families desperately need support, I don't think the conversation should end with, "Did the disabled person consent to being filmed?" But, let's face it, the full picture of profound autism isn't pretty and it's very uncomfortable to witness. A better question is: How do we protect the dignity of people who cannot provide informed consent while also allowing their families to tell the truth about lives that society desperately needs to understand? That is a much more important conversation.
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