When support is difficult to obtain, an autistic person’s future can become a question of what is available rather than what is appropriate. Families should not have to wait for exhaustion or an emergency before receiving meaningful help. I believe America’s approach to autism should begin by challenging assumptions that make limited choices seem acceptable.
The urgency extends beyond language. An October analysis by KFF, an independent nonprofit health policy research organization, reports that almost 650,000 people are on waiting or interest lists for Medicaid home and community based services.
These lists cover several populations, and states differ in whether they check eligibility before adding people. They do not establish that everyone listed lacks assistance. Nevertheless, they raise questions about whether appropriate support is reaching people when needed.
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In my work with families, parents often want help making everyday life manageable while their children develop skills and relationships. As adulthood approaches, those concerns can shift toward meaningful activities, daily assistance, and housing. When options are scarce, families may find themselves planning around service gaps instead of the person’s preferences.
That is where attitudes and access meet.
If autism is discussed primarily through presumed limitations, it becomes easier to imagine a narrow future for everyone with that diagnosis. I believe public institutions should resist that framing. Recognizing substantial support needs is essential, but it should lead to a more careful assessment of the individual, not an assumption about where that person belongs.
When Options Are Limited
Concerns about institutional language also have a specific history. The Justice Department’s account of Olmstead v. L.C. describes two women who remained institutionalized for years after professionals determined that community care was appropriate. In 1999, the Supreme Court recognized unjustified segregation of people with disabilities as discrimination. The case illustrates how placement can persist even when a suitable alternative has been identified.
That history does not make every residential arrangement inappropriate. It does explain why situations involving belonging and isolation from community life deserve scrutiny. For me, the distinction is between a setting chosen around someone’s needs and one accepted because other support is unavailable. Calling both situations a choice obscures the difference.
Such assumptions can reach the highest levels of public discussion. In April 2025, Robert F. Kennedy Jr., speaking as Health and Human Services secretary, said autistic children would "never pay taxes." CNN’s coverage included his subsequent clarification that he was referring to those with the most severe needs. Even with that qualification, I believe framing people’s futures through economic contribution sets the wrong standard for care.
The response should reach beyond correcting one public statement. Neither employment nor independence should determine someone’s entitlement to dignity and support. A person who requires extensive assistance deserves the same consideration of preferences, relationships, and daily life as someone seeking a job. Better language matters when it changes the questions institutions ask and the services they fund.
Building Better Support Systems
A practical alternative would connect individual planning to dependable provision. For one person, that might mean communication assistance and supported employment. For another, it could involve intensive daily care, accessible activities, and respite for relatives. With reliable help, families could plan more confidently, and individuals could have greater opportunities to participate on their own terms.
Without that investment, the risk is that exhaustion becomes the deciding factor in where someone lives. Supporting community life must therefore mean more than expecting relatives to keep providing unpaid care. Residential options should remain available where appropriate, with meaningful involvement from the person concerned. Families should not be judged for needing help that cannot reasonably be provided at home.
State officials should publish funded plans for adult disability services, developed with autistic people, families, and providers. Before committing to additional institutional capacity, they should assess suitable community alternatives, identify the staff required, and compare full costs without presuming either approach is always cheaper. Plans should include delivery deadlines and a clear route for families to report unmet needs.
Success should be assessed by whether promised assistance actually arrives and whether it supports the person’s goals. That requires listening to people with varied communication abilities and levels of need, including those whose preferences take time and support to understand. Our expectations should never become the boundary of someone else’s future.
Cristina Busu is the founder of Help Hope Solutions and has more than two decades of experience supporting children with autism and developmental challenges; her company may benefit from expanded demand for these services. All opinions are the author’s own.