WARNING: This post talks about prison, crimes and inmates. It describes realities which may be disturbing to the reader. If these situations disturb you, imagine the feelings of the people forced to live them. Reader discretion is advised.

If you’ve seen a prison movie like The Great Escape, The Shawshank Redemption, or even Toy Story 3, or have seen reports of people who have spent time in prison, you know it’s a hard place to be. Television has tried to spread this message to kids, but they are limited by what can be shown to a school age viewing audience. For example, in an episode of Drake and Josh where they were unknowingly being used to sell stolen miniature grills called Gary Coleman grills (a parody of the George Foreman grill), they got arrested and taken to prison. As they were being taken away, Josh tells Drake “I’ve read about prison…it ain’t fun”. The line was repeated when the guys who did steal the grills got taken to prison, but it never showed the realities. While prison is never a good environment (the theory is that prison should be, in part, to rehabilitate, but that requires budgets most prisons don’t have), it can be much harder if you have autism or other intellectual disabilities. The Marshall Project, a nonprofit journalism site about criminal justice, helps shed some light on this very important issue.

When Drew Harrison was doing time in Greensville Correction Center in Virginia for assaulting an ex-girlfriend, it overloaded his senses just to sit in his cell. He would cover the fluorescent lightbulbs with toothpaste or paper to dim them and would wrap his uniform around his head to mask any overwhelming odors. One time when he asked to stay in the prison yard longer, he was told he was being insubordinate and put in restrictive housing. His mother, Judy Harrison, explained Drew’s autism made it difficult for him to grasp the rules. It was only after she lobbied a Virginia state legislator did Drew’s “good time” get reinstated. He was eventually released in 2019. Judy says she doesn’t know how someone with Drew’s diagnosis would have survived in prison without an advocate. You can’t teach someone not to have autism. The prison environment is difficult to navigate for any convicted person, but experts say it’s particularly challenging for people with autism and similar disabilities, largely because state officials often fail to identify prisoners with developmental disorders.

The Americans with Disabilities Act, or ADA if you will, was signed into law in the summer of 1990, mandating that people with physical and developmental disorders receive equal access to programs and services provided by public institutions, including correctional facilities. Unfortunately, advocates for these people have long argued that too often, prisons don’t fulfill that promise. A possible reason for that is a number of states don’t adequately identify prisoners with developmental disorders. The Marshall Project sent out questions to all 50 state correctional facilities asking if and how they screen prisoners for developmental or intellectual disabilities. 38 agencies responded and 25 of them reported using screening protocols which a number of mental health and legal experts say don’t meet professional standards. Five states even said they don’t screen for developmental disabilities.

When these kinds of prisoners go unidentified, they’re even less likely than the overall prison population to receive services they’re entitled to under federal law, like help in understanding the prison rules or obtaining medications they need. This leaves them vulnerable to medical misdiagnosis, isolation in solitary confinement, denial of legal and educational opportunities, abuse and bullying by fellow inmates. Susan Politt, a supervising attorney at an advocacy agency called Disability Rights North Carolina, says this mirrors what goes on in society with people with disabilities often being hidden and not seen, but the situation being more dire behind bars -with people getting out in worse condition than they were when they went in.

I don’t know what would’ve happened to me if I either went unidentified or people continuously refused to comply with the ADA. I’ve had a couple of teachers who refused, but my parents are both strong advocates and taught me to self-advocate. My nephew, who has a different learning diagnosis, may have had it worse. When he was in third grade, his teacher knew of the accommodations he was entitled to but she refused to comply. The principal didn’t help because he said he didn’t want to fire a teacher that late into the school year, and the students all had problems learning. In the end, the teacher retired, but 40 percent of that class didn’t come back the next school year. Again, my nephew’s parents stepped in as his advocates, but not all parents have the skills to do so, particularly if the family is economically disadvantaged – and this economic disadvantage often follows racial lines. Experts say that incarcerated people of color with intellectual and developmental disabilities are affected disproportionately because they’re less likely than white people to be diagnosed before they enter prison.

Developmental disability is an umbrella term for a group of disorders that originate in childhood restricting a person’s ability to learn, speak, behave or physically develop. This includes autism, cerebral palsy, and language and speech disorders. Intellectual disability is the most common type. Maggie Nygren, executive director of American Association on Intellectual and Developmental Disabilities, says it’s generally accepted that between 2 to 3 percent of people worldwide have an intellectual disability. Research suggests the proportion of people with developmental disabilities behind bars is likely to be higher than the general population. The estimate falls between 4 and 10 percent of U.S. prisoners having an intellectual disability. In 2015, the Bureau of Justice Statistics reported about 20 percent of prisoners mentioned having a cognitive disability, which includes developmental disabilities. They are the most left behind of an entire left behind prison population, with little chance of rehabilitation in the prison system.

When The Marshall Project sent out their questions, only 4 of the 25 states that shared their 2019 numbers reported the population of prisoners with developmental or intellectual disabilities was in that range, with the other 21 states saying their prison populations had less than 4 percent of prisoners with developmental disabilities. Bill Van Der Pol, a senior staff attorney at the Alabama Disabilities Advocacy Project, says “there’s no rational basis under which a prison population should have a lower percentage than a general population”. Thirteen states also told the Marshall Project they didn’t track the population numbers or couldn’t provide them. It’s clear that the law is not being followed, and that this vulnerable population is unprotected.

A majority of states are using screening protocols medical and legal experts say are below professional standards. Nygren says these exams should assess a person’s intellect, capacity to participate in daily activities, and how old they were when their condition began. Unfortunately, 11 states said they either didn’t check for those points or test for intellectual ability at all. Several states say they primarily rely on an IQ test as a screening tool. In North Carolina, prisoners take an IQ test in a group upon entering the system. If they score a 70 or less-the state’s cutoff for intellectual disability-they take the exam again. This process prevents people who do have intellectual disabilities from being identified because it builds familiarity with the exam and the prisoner can get a higher score the second time, according to former North Carolina prison psychologist John Schwade.

In an email, Schwade wrote that the screenings for intellectual disability aren’t designed to identify and provide these inmates the help they need, but are meant to exclude as many inmates as possible from getting the help they need. Politt responded that the consequences for these prisoners was a total failure in accommodating and protecting them. John Bull, the communications officer for prisons at the North Carolina Department of Public Safety, says that strategy allows officials to quickly identify disabled prisoners without wasting time on the ones who don’t need extra help as prisons are very short-staffed. Massachusetts, South Dakota, North Dakota, New Hampshire, Iowa, Texas, Utah, and Idaho, all among the states that test prisoners during screening, all said they use the Test of Adult Basic Education designed to evaluate academic achievement instead of IQ, which could give hints about a person’s disability but doesn’t identify developmental disabilities. Kentucky, Maine, Virginia, New Mexico, and Delaware all say their agencies don’t use a test to screen prisoners for developmental disorders; they say they rely on the prisoners to tell the staff themselves, have clinicians estimate general intellectual levels, or rely on medical and educational records.

Another parent of a disabled prisoner, Anne Morel, whose adult son David is doing time in Louisiana for possessing child pornography, says prison officials don’t know he’s mentally challenged. David was diagnosed with intellectual disability at age 6 and told he had an IQ of 63 at age 25. His mother says he often gets scammed by prisoners persuading him to buy things with the money he needs for food and she believes he’s being physically abused as well. Jamelia Morgan, an associate professor at the University of Connecticut School of Law, says people with autism and intellectual disability often have difficulty understanding prison rules and norms, making them especially vulnerable to being exploited in prison, adding “there’s disproportionate exposure to violence, sexual or otherwise”. I’ve been the target of bullies when I was very young, but my environment has been pretty sheltered and my family prepared me to be aware of situations which could have gotten out of control. If any of these situations apply to you or someone you know, I can’t imagine how you feel being taken advantage of but you have my sympathies.

A number of parents of incarcerated people with developmental disorders say they feel powerless to help their children cope behind bars. When Gary Glissman’s adult son Michael was in an Omaha prison for theft, he submitted medical documentation to health officials demonstrating Michael, who has depression and anxiety related to Klinefelter Syndrome, a genetic developmental disability that can lead to abnormally low levels of testosterone and difficulty controlling emotions while stressed, had a clinical need for testosterone replacement therapy and psychological counseling. Glissman says he wasn’t surprised that officials didn’t respond, adding that “it’s very basic in the prison system; either it’s broken or bleeding, or too bad”.

I have come to realize that I am a person who has led a privileged life. A number of schools and work environments have accommodated the disabled over the years, but things still need to change for persons on the spectrum to be more comfortable in a world where it’s very hard for them to feel comfortable. People all over need to know what these individuals need in order to fully thrive and survive, even in places like prison. As a Christian (a lifelong Catholic), I understand the meaning of the saying “if you did this for the least of my brothers, you did it for me.” Maybe a small way for change to begin is for each of us to examine the situation from the perspective of someone with the least opportunity but the biggest challenges, and to act as the decision makers. If you have the right to vote, you are a decision maker on things like budgets and how laws will be enforced to protect the disabled. Talking about prison reform is a start, but the better starting place is the schools which fail to diagnose or assist the student who is starting to fall through the system’s cracks. With help in the early years, that student and the family may not need to face the reality of a prison cell.