Enough with the pearl-clutching: re-homing of one form or another is common, and often necessary, with the severely autistic
By R Medina
A few weeks ago my social media got flooded with posts expressing moral outrage after there was news that a YouTube star and her husband had “re-homed” their severely autistic son, whom they had adopted from China. Apparently the son’s behaviors were more difficult and dangerous than they had bargained for so they found some way to place the boy with another family.
Now I don’t know anything about those YouTubers and this post is not about them or the boy’s autism. Was he a feces-smearer? Was he attacking his siblings? Did he screech at 2am, chew the drywall and break windows? I don’t know what prompted it. But this much I do know. Re-homing, in various direct and indirect forms, is entirely common with severe autism. In fact, one form or another is inevitable in most cases. All the sanctimonious judgment and social media pearl-clutching seemed based in obliviousness about what happens, over time with overwhelmed severe autism families, in the real world.
I would say there are at least 50 different shades of re-homing, from outright giving up custody to many more sublte forms. Clearly few pathways to re-homing are as early or overt as this case. But they all start from the same place, a single parent, couple, or sometimes caregiver sib who are so physically, mentally, emotionally, and/or financially exhausted or imperiled, or who have become so old or infirm, that they can no longer provide adequate care for the child or adult. Very often, as the children grow into adults, they become terrified of their strength and unpredictable violence.
Let me tell you about some of the shades. One is called “ward of the state.” I have a friend who is my age (46). Her younger brother had autism. But when he was young and the parents couldn’t take it any more, they made him a ward of the state. He now lives in a group home in a rural community about 500 miles from here, and his family members visit on rare occasion. When the parents relinquished him was there an uproar? Is there an uproar now? No.
Another shade is called “residential school.” This is a temporary form of re-homing. When an autistic child is too dangerous or destructive for a local school district and parents to handle, the IEP team will sometimes place the child in a residential school, often in another state like Kansas or Utah. Some of these schools are year-round, giving exhausted and overwhelmed parents a long break, with the hope of some improvement in skills and behaviors. When the the clock runs out on the IEP the parents are often faced with the difficult-to-impossible task of finding a new home for the young adult who has just fallen off the services cliff.
Now let me tell you about the most common form of re-homing, it’s sort of a passive form, a kind of abandonment. It is called “parent (usually the father) has a sort of nervous breakdown and simply leaves.” I have seen this play out more times than I can count. The dad exits, and the child is re-homed to the care of a now single mother, often left impoverished and with little support. Where has the community outrage been when a dad leaves his disabled child — something that happens every day in this country, from what I can tell? Not a peep from the social media arbiters! A mom walks out and BLAMMO HASHTAG WARRIORS GO, but a dad? Here’s your free pass, sir.
Another shade is the group home. I used to work closely with a group home agency. Do you know what? Even people much more mildly disabled than those with severe autism were routinely placed in group homes. People really quite sweet, competent, capable. I never heard a speck of outrage when the families put them in group homes, permanently.
Another shade is inpatient care. When families hit the breaking point, they desperately seek an inpatient program where doctors and therapists could use drugs and therapy to help make the child or adult more manageable. This gives parents a break, sometimes for longer than you would know, I knew of a case like this that lasted almost two years. The single mother had her aggressive, self-injurious autistic son placed in an inpatient program and after that ended he could not return home, so he lives round-the-clock with 2 to 3 caregivers in a home rented through a government subsidy program. I do not pass judgment on her, she did exactly what she needed to do to survive. But it is a form of re-homing. And it deserves no condemnation.
I could go on with other examples, but I hope you see my point. With severe autism, re-homing by other names, other means, happens. All. The. Time.
Finally, can we please acknowledge two things. First, my work with families has shown me the the decision to place a severely disabled child or adult outside of the home is excruciating and heartbreaking for the parents, even for those parents covered in bitemarks and bruises, and who haven’t had a decent night’s sleep in years. It is never done lightly. It is the last resort, done out of desperation. Do not dare to pass judgment on these parents or mob them on social media unless you have walked a mile in their shoes.
One last lap here. Let’s acknowledge the darkest, most horrible truth of all. Parents are temporary. No matter how much they love their disabled kids, they will die. As they age we are in for wave upon wave of massive re-homing of severely autistic adults. Autistic re-homing is not an outlier, but a necessity, these adults have no ability to live on their own. Where they will go, I don’t know, but one thing is clear: whether we like it or not, re-homing is the future of autism.
R Medina is a pseudonym for a mom and disability community worker who lives in Southern California.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.