For three years, I worked as a direct support professional, or DSP, for autistic teenagers with higher support needs in group homes. They were sent there for violent offenses committed in the community. I recall my times there so others have an idea of how group homes operate and the impact it can have on the people who live (or are forced to live) there. All names and identifying information have been changed to protect the identities of the individuals mentioned throughout the pieces.
The program I worked for intends to make the clients act more safely in the community, as well as to be as independent as possible. This entailed making sure they take their medications at the time intervals predetermined by their psychiatrists, completing hygiene like showering, brushing their teeth and flossing, and putting on clean clothes.
They also had to complete “goals,” which would consist of things like cooking for themselves, exercising for 30 minutes, practicing social scenarios by pretending to have a conversation with a person they’re about to interact with in the community, or looking up routes for public transportation. While these are all great things, the clients are mandatorily required to complete all these tasks, as well as their full hygiene routine and two chores, before going out into the community. In other words, the clients were imprisoned in a house in suburbs with neighbors having no idea what occurs next door to them.
I will start the Group Home Chronicles with the first client, and that is Ben. This is his story and my observations working with him.
Ben’s meltdowns seem to happen when he doesn’t have access to things. The kids are only allowed to go out to eat twice a week, and at his house it’s on assigned days. Very often Ben will hyperfocus on his food outing (they use the behaviorist term “perseverations” to describe it), constantly saying “food outing” so he can be taken.
More often than not, he’ll have a meltdown over it because he’s overwhelmed and feels unheard, hitting himself in the head, attacking the staff, and banging his head into the walls and floor. I think he does it because it’s illogical to him why he can only eat out on specific days and not when he wants, since the places are open and he has money to spend.
When he has meltdowns, he has to put a sparring helmet on to protect his head and is escorted to his bedroom, which is mostly padded except for his doorframes. He is echolalic and can only speak in short sentences, usually when prompted. When laying down in his room during meltdowns (which he’s not allowed to leave until the meltdown is over for five minutes), he’ll say “say sorry,” “feeling sad” (while crying), and “grumpy.” We are told to ignore these statements and not acknowledge them. This is inhumane to me. Behaviorists tell us to do this.
He, as well as all the others, cannot grab snacks without permission (even if it has their name on it and belongs to them). He also loves going to the library, which he’s only allowed to do a number of times a week.
My coworkers say these rules are to teach him to be independent. So does independence mean you can’t go to the library, even though everything is free there and it’s always open? So many of the rules make no logical sense.
I should share background information on Ben for context. He was sent to the group home because he had attacked his siblings and a parent. It went as far as him fracturing that parent’s eye socket. However, none of the documentation explains why this happened or what led up to it. This goes for the other clients as well. Key pieces of the story are omitted, painting the clients as violent perpetrators in the process. Without both sides of the story, it’s easy to form a bias against the client.
Their actions should not be automatically excused, but the full picture should be explained so any communication gaps between both parties should be mitigated. Since the documentation comes from the state’s disability department, is that not important to them? Speaking of the parent, they would rarely visit the house to see him. The clients’ parents/guardians are required to visit their children once a month. Zoom meetings count, even if they don’t visit their child physically.
When Ben talks to his mother, staff are required to coach him to use full sentences with her, which are very unnatural and difficult for him to execute. They do not validate regular communication means, which are one-word answers, pointing, and pulling the person to the object he wants.
While I was at a doctor’s appointment with Ben and another staff, the program manager and Ben’s mother were on the phone with the doctor instead of being physically present. Around this time, Ben had a tendency to touch staff’s private parts randomly. We don’t know if this was caused by hormones, as he was 16, or if he learned this from someone or even the group home itself.
The mom requested the doctor if he could consider putting Ben on female hormones to make him stop this behavior. Ben is not transgender, or at least we never had an indication that he was. For the record, the mother is a nurse at a nearby hospital. What made her believe putting her son on female hormones (which he did not consent to) would make him stop this behavior? The mother does not allow us to teach him sex education, although he’s 17 years old and is not taught about it in school or by his mother. He is capable of writing as well as reading the subtitles on movies and TV shows, showing that he’s capable of understanding and processing speech. The mother also won’t allow him to watch The Simpsons for reasons that are not clear.
Ben often gets up walking away from the TV he’s watching, to which staff threaten to turn the TV off if he walks away. I never understood what this was teaching. That you’re not allowed to walk around if you have the TV on? He’s ADHD and can’t help it. I believe he has dyspraxia too, as many of his movements appear involuntary (this is based on observation and is not a diagnosis, as I am not a physician).
When he gives hugs to staff, the staff have to say “what do you ask?” which prompts him to say “can I have a hug please?” The tone in his voice sounds as if he doesn’t understand what he’s saying and why, but rather because it’s expected of him to obtain what he wants, in this case a hug.
No matter how long you’ve known him, staff has to say it every time no matter what, to teach him in case he was to hug someone he doesn’t know in the community.
Theorhetically, the entire group home program is intended to teach the children how to act in the community, as well as how to be independent and care for themselves. The latter principle, based on my observations, is utopian at best. Ben needs assistance in the bathroom as well as bathing, as he has intellectual disabilities in addition to his autism. I could be wrong, but if he still needs this assistance at 17 years old, what are the odds he will no longer need it when he’s 30? Autism and intellectual disability is lifelong and does not disappear, nor does it need to, as it’s a natural variation of the human brain.
There is nothing wrong with needing help throughout your life. Only about 1% of the population is autistic, according to the CDC. The other 99% is more than capable of caring for them. Evidence from The New York Times shows skeletons of people with physical disabilities who died at an old age, which would’ve required assistance to keep the person alive that long. This shows that communally caring for our disabled neighbors is possible, especially with how many more neurotypical people there are than autistics.