The Two Conversations About Autism That Never Meet
Thirty one states have written Employment First into law. The Lancet Commission has defined a quarter of autistic people as needing round the clock care. Neither framework mentions the other, and families are stuck in the gap.
Put it in an email, not a phone call, and ask for a written answer. You are not being difficult. You are asking a public agency to describe a service array it is required to have. If the answer names only supported employment, skill building, and community living supports, you have documented the gap in your own county, in writing, with a date on it. That email becomes your first exhibit in every appeal that follows.
Two literatures
Employment First research and profound autism research are published in different journals, presented at different conferences, and read by different people. They almost never cite each other.
The federal push
The U.S. Department of Labor’s Office of Disability Employment Policy has funded Employment First state leadership for more than a decade. There is no equivalent federal initiative for adults who need 24-hour support.
26.7%
Meet the criteria
Of autistic children in CDC surveillance data across 15 sites, 2000 to 2016, met the profound autism criteria. That is not a fringe. That is one in four.
0
Prevocational slots
Michigan removed prevocational services from the Habilitation Supports Waiver, with a six month transition to skill building or out-of-home nonvocational habilitation.
The quiet substitution
When employment becomes the preferred outcome, the alternatives get renamed rather than funded. Skill building is a real service. It is not a day.
Who gets counted
Employment First reports competitive integrated employment rates. A person who was never a candidate for that outcome does not appear as a failure. They do not appear at all.
What each conversation assumes
A transition coordinator told me my daughter’s goal should be community based employment. I asked what happens if she cannot do that. She looked at her form. There was no box for it. She said, we would work on prevocational skills. I said those were discontinued. She said, then we would work toward employment.
When the plan only has one destination
Escalate in this order
- 1Email your supports coordinator asking, in writing, what services exist for an adult who will not reach competitive integrated employment.
- 2Request the full CMHSP service array document, not a summary. Ask which of those services your family member is eligible for today.
- 3Ask for the person centered planning meeting to record the gap in the plan of service itself, in your words.
- 4If the plan still lists only employment goals, file a written request for a second person centered planning meeting under the Michigan Mental Health Code.
- 5Request a local dispute resolution or grievance through your CMHSP customer services office and keep the date stamped copy.
- 6Ask for a Medicaid fair hearing if a needed service is denied, reduced, or simply never offered.
Bring these to the meeting
- A one page functional description using the Lancet criteria language
- The physician or psychologist letter naming 24-hour supervision needs
- Your own log of a typical week, hour by hour, for two weeks
- The most recent plan of service with the employment goals highlighted
- Any written notice about prevocational services ending
- A list of every service you have asked for and the date you asked
- The names of everyone who was in the room, with titles
- A written request that the minutes record your objection
You are not arguing against employment. You are asking the system to say what it does for the people employment was never going to reach.
The transition meeting had gone well for about eleven minutes. Then I asked a simple question, and the room changed temperature.
What I asked was this. If competitive integrated employment is the goal, and my daughter is not going to get there, what is the plan? Not the aspiration. The plan. The service, with a name, that she is eligible for, that exists in this county, that she could start next month.
The coordinator was kind. She was not evasive. She genuinely wanted to help. She looked down at her form, and the form did not have a place to put my question. That is the whole story of this post, and I want to be careful here, because the failure I am describing is not a person. It is a shape. Two enormous policy conversations have been running in parallel for a decade, and they do not talk to each other, and my kid lives in the space between them.
Conversation one: everyone can work
Employment First is the policy framework that says competitive integrated employment should be the first and preferred outcome for working age adults with disabilities. Not sheltered work. Not a facility. A real job, at a real wage, alongside people without disabilities. Thirty one states have passed Employment First legislation. Sixteen have executive orders. Thirty two have state agency administrative policy pointing the same direction. The U.S. Department of Labor has funded state leadership on this for years.
And I want to say clearly that this movement earned its win. The history it was reacting against is genuinely ugly. Subminimum wage certificates. Workshops where adults sorted plastic parts for years and took home forty dollars a month. A default assumption of incapacity that followed people from age six to age sixty. Employment First said that presumption was backwards, that support should start from capability, and it was right.
It was right about a lot of people. That is the part that makes this hard to write.
Conversation two: a quarter of them cannot
In 2021 the Lancet Commission on the future of care and clinical research in autism proposed a term for the part of the spectrum that keeps disappearing from policy. Profound autism. The criteria are specific. Age eight or older. Requiring 24-hour access to an adult caregiver. An IQ under 50 or minimal spoken language.
When the CDC applied criteria like those to its own surveillance data across 15 sites from 2000 to 2016, 26.7% of autistic children met them. Roughly one in four. That work was published by Hughes and colleagues in Public Health Reports in 2023, and it is the closest thing we have to a prevalence estimate for this population.
One in four is not an edge case. It is not a rounding error in a policy model. It is the size of a constituency that, in any other domain, would have its own line item, its own federal initiative, its own set of performance measures. It has none of those things.
How the gap becomes a service cut
Policy frameworks are not just talk. They reorganize money, and they reorganize it faster than anyone updates the plan for the people left behind.
Michigan is a clean example. Prevocational services were removed from the Habilitation Supports Waiver. The transition plan gives beneficiaries a six month window to move to skill building or out-of-home nonvocational habilitation instead. On paper that is a substitution. Something ends, something else is named, the array stays whole.
On the ground, a substitution only works if the replacement has capacity, a provider willing to deliver it, and a rate that makes delivering it survivable. Ask any family in the middle of that six month window how many providers called them back. The service exists in the waiver document. Whether it exists in your county on a Tuesday morning is a different question, and the waiver document is not required to answer it.
This is what the gap does. It is not that anybody decided to abandon adults with profound autism. It is that when one conversation controls the direction of travel and the other conversation has no statutory home anywhere, the second group’s services stop being defended. Nobody has to cut them. They just stop being anybody’s job to protect.
Why the count matters more than the label
People argue hard about the term profound autism, and some of that argument is worth having. Functioning labels have been used to deny services to people called high functioning and to deny agency to people called low functioning. IQ testing in nonspeaking people has underestimated capacity, sometimes catastrophically. Communication ability is not fixed. Those objections are real and I do not wave them off.
But strip the vocabulary fight down and something practical is underneath it. A population that is not counted cannot appear in a budget projection. It cannot be the subject of a performance measure. It cannot generate the kind of evidence that moves a legislature, because legislatures move on numbers and there are no numbers. Whatever you want to call this group, somebody has to count them, or the policy machinery cannot see them at all.
Employment First has counts. It reports competitive integrated employment rates, wages, hours, placement durations. Every one of those measures is built from the population that was a candidate for the outcome. A young adult who was never going to be in that denominator does not show up as a failure of the system. They do not show up.
What families can actually do about it
I am not going to pretend an individual parent can reconcile two national policy conversations. You cannot. What you can do is refuse to let the gap stay invisible in your own file.
Put the question in writing. Email, not a phone call. Ask what services exist for an adult who will not reach competitive integrated employment. A verbal non answer evaporates. A written non answer is evidence.
Use the clinical language. Requires 24-hour access to an adult caregiver is not advocacy phrasing. It is a published criterion, and a reviewer reading it hears a support level rather than a worried parent. Put it in the plan of service, the physician letter, and every appeal.
Make the plan record your objection. Person centered planning is supposed to be driven by the person and their family. If the plan comes back listing only employment goals, ask that your objection be written into the plan itself. Meeting minutes are a public record in a way that hallway conversations are not.
Say it out loud in rooms where both conversations are present. Public comment at a CMHSP board meeting takes three minutes and enters the record. The gap only closes when enough people describe it in the same words at the same time.
My daughter is not a policy failure. She is a person with a Tuesday that has to get filled, safely, by somebody, whether or not a framework has a box for her. I would settle for a system that could say her name. Right now I am still working on getting it to admit she is in the room.