When Children With Autism Grow Up
February 9, 2015 4:44 AM   Subscribe

"I was 23 and needed a summer job; he was 21 and needed full-time support. He’s one of an estimated half million people diagnosed with autism who are soon becoming adults — and who society is entirely unprepared for." (Note: graphic description of sexual abuse; SL Buzzfeed)
posted by roomthreeseventeen (25 comments total) 28 users marked this as a favorite
 
This is a rare situation where reading the comments section is actually worth it, as family members of people with autism, other care aides, and those with autism themselves have been logging in. There are of course as many individual outcomes as there are "children with autism" (a better title might have been, When Children Whose Disabilities Preclude Most 'Activities of Daily Living' Grow Up).

I remember reading it and thinking it was a beautiful piece, and then getting to comments by other adults on the spectrum and feeling a bit ashamed I didn't--and don't always--question whose story belongs to whom to narrate and publicize in these kinds of accounts, however helpful they may ultimately be to others. Especially for a man like "Scooter" who has already relinquished so much of his privacy just by living in a group home with a revolving door of caretakers. That being said, I think Bob's day to day relationship with Scooter and obvious care and thoughtfulness makes him someone I'd be relieved to have assisting one of my own family members.
posted by blue suede stockings at 5:51 AM on February 9, 2015 [5 favorites]


Very moving at the end. Thanks for posting.
posted by colie at 6:04 AM on February 9, 2015 [1 favorite]


Yupper.
posted by Melismata at 6:37 AM on February 9, 2015


Excellent article, thank you. Now maybe people will start looking at the bigger issues. It can't be swept under the rug.

Because it’s not Scooter’s disability that isolates him; society does.

Somewhat disagree with this. At work, my boss's boss is forcing my boss to let her 23-year-old autistic son work in our department. It's such a clusterfuck I can't even tell you. Despite being given no training on how to work with an autistic person, and no support from his mother other than "see, my son can work just like everyone else, make it work!", I try to be supportive and help him with tasks and ask how his day was and smile when he talks about his favorite superheroes. But he also behaves in ways that would never, ever be tolerated in a neurotypical person at the workplace, and I'm getting closer each day to going to HR about it. There's a limit to how much society can tolerate someone's inappropriate behavior. Does this make me a bad person? I guess, oh well.
posted by sockerpup at 6:56 AM on February 9, 2015 [35 favorites]


Yikes - wish there had been a warning about the graphic description of sexual abuse.
posted by stoneweaver at 7:06 AM on February 9, 2015 [4 favorites]


Sorry about that. Mods, can you add a tw, please?
posted by roomthreeseventeen at 7:12 AM on February 9, 2015 [1 favorite]


being given no training on how to work with an autistic person

That's key, I think, although the article also notes that it can be very trying even with some kind of training. I worked with developmentally disabled children back in the eighties in a group-home setting, and we had an autistic teenage boy who, like Scooter, had been sexually abused and would frequently (and seemingly randomly) verbalize some of the things that his abuser had said to him, as well as touching staff members (particularly female staff members) inappropriately. The staff got no training on how to handle him or other autistic kids, because it really wasn't a facility for autistic kids, and we were further hindered by a group home director who was somehow convinced that she was a miracle worker, and saw herself as the potential Annie Sullivan to this kid and another inappropriately-placed kid who regularly attacked staff and other children. And the staff were paid crap and treated as essentially disposable. I went from that job to one as a janitor which was better in every way, including pay.
posted by Halloween Jack at 7:16 AM on February 9, 2015 [14 favorites]


From here:

"A Harvard study found that the cost of lifetime care for an autistic person is about $3.2 million, although the author, Michael Ganz, believes that the true cost is even higher because some variables are hard to measure...Although most people consider autism untreatable, many new studies show that “early behavioral intervention is associated with normalized brain activity in children with autism”. These studies have shown that children receiving intensive, specialized therapy before 3 are more likely to have higher IQs, better speech, and to function more similarly to their elementary school peers.

In a 1998 cost-benefit estimate [PDF] for early intensive behavioral intervention, the authors conclude that the savings of 3 years of EI between 2 and school entry can save an estimated $187,000 to $203,000 per child ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years with an initial cost of $33,000 to $50,000 per year."

Yet North Carolina cut $18 million from their Early Intervention program and two senators, who've taken thousands from Blue Cross Blue Shield, repeatedly block ABA insurance reform, leaving thousands of families with limited options for their disabled family members.

It doesn't have to be like this. If you live in North Carolina, or another state without autism insurance reform, please help.
posted by PrimateFan at 7:42 AM on February 9, 2015 [9 favorites]


[Added a warning to the post.]
posted by LobsterMitten (staff) at 7:44 AM on February 9, 2015


I found myself really moved by this. My 20 year old son is much, much further along the spectrum than Scooter, but we still face uncertainty and stress about how he will live as an adult. We are finding some help from our state rehabilitation commission.
posted by Biblio at 7:55 AM on February 9, 2015 [2 favorites]


I went from that job to one as a janitor ...

And this is how we lose people that we desperately need to care for one another, whether it be our kids, our aged, or our autistic folks.

Thanks again shitheels, for worrying about women's bodies and embryos, but not giving a damn about real people needing actual help.
posted by BlueHorse at 8:22 AM on February 9, 2015 [7 favorites]


This is a great article, but it doesn't explain much about how our society is unprepared and talks a lot about the individual case of this one guy.
posted by corb at 11:07 AM on February 9, 2015 [3 favorites]


This is a rare situation where reading the comments section is actually worth it

This is especially the case, because there's a commenter who mentioned knowing both Bob and "Scooter" and who argued that "Scooter" was actually more functional than the article let on.
posted by jonp72 at 11:45 AM on February 9, 2015 [2 favorites]


This is especially the case, because there's a commenter who mentioned knowing both Bob and "Scooter" and who argued that "Scooter" was actually more functional than the article let on.

[Yup--I was asked by a moderator to modify my original response to the FPP to allow folks to read the comments themselves instead of posting them here, but that interchange you're referring to is fascinating.]
posted by blue suede stockings at 11:49 AM on February 9, 2015


This is especially the case, because there's a commenter who mentioned knowing both Bob and "Scooter" and who argued that "Scooter" was actually more functional than the article let on.

I don't know if he argued "Scooter" was more functional. He was upset Bob didn't spend more time emphasizing his good qualities.
posted by schroedinger at 1:06 PM on February 9, 2015 [1 favorite]


The comments are kind of fascinating: there's at least two or three high-functioning autistics on there who are mortally offended that... what? Someone wrote an article about caring for a man from the lower end of the spectrum? I don't get it.
posted by Oktober at 1:06 PM on February 9, 2015 [3 favorites]


This is a great article, but it doesn't explain much about how our society is unprepared and talks a lot about the individual case of this one guy.

special education generally is directed at the developmentally disabled - which, excuse me for saying the word, we used to call the retarded - there are fairly well known methods and tactics that work with these kind of people that often bore the autistic to death, resulting in inappropriate behavior and lack of motivation

i've been banging my head against the wall on this for the last year - there's all sorts of good programs for the developmentally disabled that my daughter just doesn't fit into and together with her other issues, it's causing me and those running the programs a lot of headaches right now

she already knows the different denominations of money and yet here she is, almost 19, sitting in a classroom where she's being taught these things and other things that she already knows

she has trouble thinking logically, but her memory and ability to learn is well above average - and it's very frustrating for her to sit through stuff like that

also, our society just plain doesn't understand much about autism yet, even people in special ed
posted by pyramid termite at 1:08 PM on February 9, 2015


Moving article. Thanks for posting it.

The comments are kind of fascinating: there's at least two or three high-functioning autistics on there who are mortally offended that... what? Someone wrote an article about caring for a man from the lower end of the spectrum? I don't get it.

It's just speculation on my part, but perhaps they're upset that we don't get to see from Scooter's point of view, or perhaps they're upset with what they see as demeaning treatment of another human adult. I don't necessarily agree, but I can understand where they're coming from. So-called "low functioning" autistic adults—"functioning" labels are problematic—often understand much more about their situations than they can articulate, and like anyone else, they respond emotionally. Descriptions of behaviour can fail to fully capture the lived reality of the person in the group home. I am not sure what the solution is. I actually think this article did a good job of treating Scooter as an individual rather than dehumanizing him.

For more background on the backlash against group homes, here's a post by Amanda Baggs, a "low functioning" nonverbal autistic whose writing skills far surpass my own:

What Makes Institutions Bad | Ballastexistenz

Again, which is not to say that this applies to Scooter's story, but it is a reality for too many autistic adults who get warehoused and infantalized, kept separate from "normal" society.

It's good to see articles on autistic adults. We exist! We may need different kinds of assistance, and sometimes no assistance, but we all deserve dignity.
posted by quiet earth at 2:16 PM on February 9, 2015 [5 favorites]


The article shows a very pointed example in a 21 year old man, who requires as much care as a patient in an ICU, really with violent episodes thrown in. The article demonstrates an enormous need for early intervention. The cost example is a mountain of money that won't even buy the minimum for adults who are helpless. The poignancy of Bob's connection to his younger charge is also a microcosm of helplessness and loss, when multiplied by the number of individuals institutionalized a huge picture comes into focus. I am glad Bob has the heart to continue working for people with needs.
posted by Oyéah at 2:29 PM on February 9, 2015


I had to stop around the time Scooter's descriptions of his abuse came up. I have Tourette Syndrome, sometimes repeat things I hear (echolalia), and sometimes say incredibly painful and personal things. If someone quoted my tics in an article without my consent I would be utterly devastated. I would feel incredibly hurt, wronged, violated, and specifically targeted as a victim because of my intellectual disability.

As someone who didn't read the full article, much less the comments, I don't have a grand ruling on the "was writing this article the wrong thing to do" question, but on a personal level I have extraordinary empathy for Scooter.
posted by Juliet Banana at 5:51 PM on February 9, 2015 [4 favorites]


I have so much more to say on this, but keep getting distracted by links in the main link and here. Just wanted to pop in and quickly say that Juliet Banana hit the nail right on the head what the commenters who had autism were saying--that some very personal things were said about this person without his consent--and that even if anonymous, the effect is of treating a person as a non-person just because they have autism. It's something that is all-too-common--see great post linked by quiet earth as well on institutionalization. While that seems to be written more about actual institutions (and I would guess mental health institutions at that) it does also touch on the parts that still exist as part of "home and community based supports" -- which are the Medicaid alternatives to institutions, and what most "group homes" are, although the definitions will vary from state to state.

Right now CMS (Medicaid) is in the process of enacting new settings rules which every state must comply with. Most states are in the process of finalizing their transition plans for this. For anyone who has a disability, has a family member or someone else they care about with a disability, people who work in "the field," or even just any good citizens out there with half a brain and time to give input, it would be great to find out what your state is doing and provide some input. See more info at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html.

posted by freejinn at 6:19 PM on February 9, 2015


Perhaps I didn't notice that he didn't explain the looming crisis too much because I'm already too aware of it. Just "got it" from the article because I spend most of my day neck deep in it.

Current average pay for direct care staff for people receiving disability services in my state: $8 per hour.

85% percent annual employee turnover. Service providers will pretty much take any warm body that walks through the door...no, wait, check, that...they will take pretty much 50% of any warm body that walks through the door, because the other 50% who apply get disqualified for not passing a background check.

Our child and family services begs the disability services folks for more help--more respite, more behavior support, more programs--to help prevent the need for DCFS to step in when families can't meet the child's needs by themselves, but even when we allocate the money we can't get the staff. We have a higher rate of autism than most states-and this problem doesn't apply just to autism--but yeah. Crisis is correct, if we can't find ways to change the system. Which is why, despite what I said in my last comment, I'm going to cut this guy--who really does seem to care and has actually stayed working in "the field"--a lot of slack. I think a lot of his points were spot on.
posted by freejinn at 6:29 PM on February 9, 2015


There's a limit to how much society can tolerate someone's inappropriate behavior.

Did you mean the son's autistic behaviors, or the mother's blatant nepotism and lack of support?
posted by freejinn at 6:45 PM on February 9, 2015


This comment might be upsetting.
I think the trigger warning itself should be enough to keep people from reading this if it's likely to upset them, but the truth is that working with people who are severely disabled with autism or schizophrenia or other disorders can be pretty gritty and the point of the article is that the great increase in the number of severely disabled autistics is coming to the forefront as they grow to adulthood - and we, as a society, are not prepared; in fact, we have no idea how to go about getting prepared. He's speaking about the folks whose day-to-day existence involves unprovoked violence and unpredictable, dangerous behavior that, sooner or later, is going to affect people who just happen to be in the vicinity. The whole idea is a warning that what we're used to in the way of "autism spectrum" has, in some ways, left us unprepared for the reality of the more severe forms of the disorder.

Way back in the 70s I knew a family with an autistic son - this was, obviously, before the "spectrum" expanded the term to so broadly encompass those with milder forms of autism; in fact, it was also at the time that autism was blamed on "cold" mothering. Anyway, (I'll call him) Dean's father was an engineer and his mother a homemaker and he had a brother who was a gifted student (graduated college at 17) a few years later. Dean had been a handful to raise, but all in all things were going pretty well when he was 14. He was tall and skinny and hyperactive, and one day he and his mom were in Baskin-Robbins for ice cream. Dean was watching the ceiling fans turn; all at once he jumped up and grabbed one of the fan blades, which was metal. The blade sliced his hand badly and he grabbed it with the other hand, too, which also was slashed. It was a dreadful mess - I won't describe it, since it would be upsetting, but it was exactly the kind of ordeal this article is warning about.

A few years later Dean knocked both parents down and ran into a busy street where he was struck by a car driven by a woman and two children. He survived, but he was badly injured and it wouldn't be surprising if the woman driving the car is in treatment for PTSD. No, we're not prepared.

Anyone who's worked in nursing homes (yes, that's where they put people they don't know what to do with) can attest to the fact that those with a violent bent to their autism are rarely medicated to a level where they're no longer dangerous. What makes these poor people more difficult to deal with than the everyday violent person is the unpredictability and randomness of their episodes.

The stories are harsh and gritty and bloody and frightening - and true.
posted by aryma at 7:47 PM on February 9, 2015 [4 favorites]


Anyone who's worked in nursing homes (yes, that's where they put people they don't know what to do with)

Assuming we don't put them in prison. I have been somewhat of a broken record in other threads about Pete Earley's book CRAZY, which describes our mental health system (and is what the book title refers to - our system, not the people) and how we handle the people who aren't getting the care they need.

Earley is focused primarily on folks with mental illness, as the book was started because of his son's needs. But it talks at length about how we shuttered state hospitals where we used to warehouse folks who needed us and just shunted them out into the street, where we now do our best to ignore them till they upset the apple cart and they often end up in the criminal justice system. It's unquestionable that folks on the spectrum are going to go through what Earley describes as well.

I understand the concern of folks in those comments who felt that telling Scooter's story could represent a violation of confidence, but if we can't tell these anonymized tales I'm not sure how the world will ever know how we're failing vulnerable folks.
posted by phearlez at 8:01 PM on February 9, 2015 [6 favorites]


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