Jonah came home from school last week and told me that some new kids in his middle school were acting very strangely. One boy was doing odd things in the hallway, and during recess, he was walking in circles, flapping his hands, and talking to himself. (Stimming.) Another girl was running up to the boys and shouting "boob" and then running away. I asked him what their aides were doing. He said that the aides were talking with each other and not noticing what was going on.
We had a little teachable moment and then moved on to homework. He forgot about it. I didn't.
In response to pressure to save money, our school district has slashed its budget for special education. Instead of having full-time trained aides, they hire local moms on a part-time basis. They don't train them. The moms come in for a couple of hours and are paid minimum wage with no benefits.
With the little information that Jonah gave me, it seems pretty clear that those kids are on autistic spectrum. And a lot of kids are. The new estimate is that 1 in 94 kids are on the spectrum. Half of those kids are pretty mildly affected, which means that they can placed in a mainstream classroom, but they need help. They need trained aides that shadow them in the hallway and in the playground. They need to be tapped on the shoulder to pay attention to the teacher. If they talk too much in class, they need to be told to quiet down.
Fully trained aides cost money. But this isn't a frill. It's a necessity. With good guidance, these kids can become functioning members of society with jobs and families. They can work in regular classrooms without disturbing the other students and frustrating the teacher. Proper care shouldn't just go to the kids with the loudest and most litigious parents; it should be distributed to all kids.
Even as we're understanding more about the extent of disabilities in our country, we are slashing the budgets to help those affected. It's very frustrating.
Apt. 11d 
Do you have time for school board or state-level advocacy this year to protest the cuts? My experience is that articulate, persuasive parents with good research skills are desperately needed. There’s a lot of anxiety and misinformation about kids with discrepant behaviour at school, many of them on the spectrum, others with non verbal LDs, Tourette’s, and so on.
LikeLike
This is one of the scariest parts of the recession to me: that the people who need help from the government are not going to get it and we’ll have bigger problems down the road. But we have enough people who think everyone should just help themselves and if you don’t have the money, well, just pray then. its very disturbing.
LikeLike
“But we have enough people who think everyone should just help themselves and if you don’t have the money, well, just pray then.”
Alternately, build new dog parks.
LikeLike
Or give people $4,500 each to destroy working car engines and buy new cars. Or give new homebuyers $8,000 each in tax credits to buy a house. Or borrow nearly a trillion dollars to save the economy, achieving 9.8% unemployment. As a nation, we’ve got to stop buying everything that looks shiny and start figuring out what our priorities are.
LikeLike
The teacher’s aides (or paraprofessionals, as they call them here) we’ve had have been a real crap shoot. None of them seem to have had much specialized training. Some of them are amazing, and deserve more than the (mediocre) teacher. One of the better ones we had was a mom who had a handicapped daughter.
One of the worst ones we’ve dealt with was the one with the most “training” – she had been an RN. I always wondered if she was as stupid and inflexible as a nurse as she was as a parapro.
What we really need is some way to reward really good aides, and discourage the bad ones. Some way to measure their performance and their skill in dealing with different kinds of SN kids, regardless of their training.
LikeLike
I’m asking an ignorant question, OK: I’m just ignorant–not evil or stupid.
Wouldn’t it make more sense to have aides for classrooms/classes instead of students? (If you want to save money, as an alternative to hiring less-qualified aides.) It seems like from the description, one aide could aid 4 kids.
LikeLike
If there’s one thing this downturn has taught me, it’s that definitions of “frill vs. necessity” are very fluid, even within my own house.
What do you do when there is simply no money for all the things on your “necessity” list? I don’t have a good answer.
LikeLike
“What do you do when there is simply no money for all the things on your “necessity” list? I don’t have a good answer.”
My hard luck radio guy advises people to cover basic necessities in this order: food, utilities and shelter (transportation is in there somewhere, but I forget where). Beyond that, if you don’t have the money, you don’t have the money. The tricky part is apparently keeping cool and refraining from paying creditors with your grocery or utility money, no matter how often collectors call to badger you into doing that.
LikeLike
The fully trained aides at our public school use recess time to catch up on gossip. The most severely handicapped children have long-term aides who only look after them. One is very good.
If a class has a child who’s assigned an aide, other children whose IEPs specify “must be placed in a class which have an aide” are then placed in that classroom. The kids who are mild don’t get aides.
LikeLike
I don’t mean to be pedantic, but both reports I’ve seen of this study have said it shows that 1 in 94 kids are on the autistic scale. But they then report the study as surveying parents, and finding that 1 in 94 have kids on the autistic spectrum. Since people who have kids have and average of more than 2 kids, doesn’t this mean that between 1 in 94 and 1 in 188 kids (but much more likely close to 1 in 188 kids are on the autistic spectrum?). Is this lazy/stupid journalism, or have I missed something?
LikeLike
Is this lazy/stupid journalism, or have I missed something?
I’d go with lazy journalism. Speaking of journalism (not that I see anything lazy in this story), our local paper is reporting that a suburban school district is trying to kick out two kids who are served by a homeless shelter in the district on the grounds that most nights they actually sleep in a church outside of the district. Everytime I get optimistic about the future of this region, something reminds me of public school and/or public sector pensions. Either one has more than enough problems to kill any positive momentum and no plausible solution.
LikeLike
Oooh, good question, Harry. I’m going to have to look at the study again. The previous figures that I’ve read is that 1 in 94 had autism.
Some kids need one-on-one aides, others can get by with an aide who watches three or four. But no kid should be roaming around a playground stimming by themselves or shouting “boob” at other kids. They either needed a more attentive aide or more individual help.
SamChevre. re: classroom aides. Yes, that’s a fine solution for some kids. Others really need one-on-one help. It just depends on the kid.
LikeLike
That’s the downside of confidentiality. No adult employed by the school system, nor any aide, will speak about what happens on campus. If the parents knew that their children were stimming on the playground, or shouting “boob,” there’d be heck to pay. Their children won’t tell them, though. What happens in school, stays in school.
LikeLike
I read the study — it’s self-report: “Has any medical professional told you that your child is on the autism spectrum?” Of the people Of those who said yes, 1/2 said their child no longer had the diagnosis. And, of those still with a diagnosis, many described the condition as mild (which I think, in this case, would not mean that a 1/1 aide was educationally needed). I do no think the study gives us a very good estimate of the number of children in a school or classroom who will require one on one aides.
LikeLike
PS: The article does have actual incidence rates. They do not commit the journalistic error of double/single counting children in the same family. You answer the survey question for each child (or for a designated child).
The survey was a national health survey, and asked a lot of other questions, too.
LikeLike
Is it so awful if a kid stims during recess, or acts oddly to other kids? I agree the situation with untrained aides is awful, but I’m not sure this demonstrates why.
If the kid was getting beaten on for stimming, maybe I’d be more worried.
LikeLike
I agree about the stimming — one of the lessons I take home from personal autism accounts is how much the stimming (Grandin’s squeeze box is pretty ugly sounding to anyone else, for example), can help people cope with their own atypical neural circuits.
LikeLike
And, if a kid was getting beaten on for stimming, it’s the beating that should be stopped, not necessarily the stimming.
LikeLike
See, I disagree. Stimming is stigmatizing. This isn’t an issue that we’ve had to deal with personally, but it is for some of Ian’s classmate. His school would never allow that. Stimming is fine in private, but not in public.
LikeLike
So if a kid flaps his arms and talks to himself, but does his schoolwork fine and can handle the class routines, he should be kept hidden or made to stop even at recess? I don’t get that. It’s not a big problem for my kid either but my understanding is there are otherwise very high-functioning autistics who have some weird behaviors they find calming. Yeah, maybe some of those behaviors are distracting but so are a lot of highly normal social behaviors that are tolerated in school.
I’d be pretty happy with an aide who kept my kid on task in the classroom but backed off unless s/he was needed to help with an interaction on the playground. It makes me cranky sometimes, how much my kid is hovered over in special ed. There’s no room for her to take any risks because there they are at her elbow.
LikeLike
So if a kid flaps his arms and talks to himself, but does his schoolwork fine and can handle the class routines, he should be kept hidden or made to stop even at recess? I don’t get that.
Me neither. I think these kids deserve to have down time during the day when they’re not being forced to conform, assuming they’re not harming other kids. Adults with full-time jobs can usually get time alone for a couple of breaks a day. Kids in schools deserve the same space, especially kids who have to work so hard to keep it together for most of the day.
I also believe that in many cases, part-time moms can do a better job than the full-time trained aides I’ve seen. In both cases, it comes down more to caring and common sense than a community college course.
LikeLike
In an ideal world, kids who need to stim would be able to stim. Other kids wouldn’t judge them. But that’s not how things work. Other kids aren’t educated about these matters. When they see a kid flapping his hands, they run away. They are afraid. They refuse to talk to the kid and may even hurt him/her. It’s dangerous behavior.
LikeLike
To get back to bj’s earlier comment, if kids are beating up on or hurting a kid who is stimming, it’s the beating up behavior that is the problem.
I wish we could find some way to engage this issue without the constant talk about budgets. As others have noted, not all paid aides are equal; devoting money to the issue won’t necessarily fix it. And it’s just a no-win situation to be fighting over crumbs, arguing about what should be cut first (which is just going to end with every parent advocating for the thing their kid needs).
LikeLike
“And it’s just a no-win situation to be fighting over crumbs, arguing about what should be cut first…”
MH?
LikeLike
They’re not going to get educated if they never see a kid stimming, are they?
I agree there are issues with people picking on the disabled, but I disagree that this should be solely the problem of the visibly disabled person. No one would say that Down’s kids should get their eyes fixed so no one will pick on them. (Or maybe they would. Ack.)
And I get that some work should go into helping kds with visible stims try substituting something less noticeable but I still can’t agree that it should be “not allowed” and that if a kid is seen stimming, an aide didn’t do her job. If you go too far down this line of thought (and I know you aren’t advocating this), you start institutionalizing people for their own protection.
LikeLike
Kids will shun the kid who is stimming. That kid will have no friends and will attract a whole lot of negative attention. That’s just reality. I would be plenty pissed off if my kid’s aide was off talking to friends and not redirecting anti-social behavior.
LikeLike
In other autism spectrum news, a 9-year-old has reduced aggression and tummy pain after getting a prescription for medical marijuana.
http://www.doublex.com/section/health-science/why-i-give-my-9-year-old-pot-part-ii?page=0,0
LikeLike
I have friends who have children on the spectrum. I’m not qualified to have an opinion on whether it’s a good or a bad thing for a child to stim during recess. On the other hand, if it is a school policy for the autistic kids not to stim in public, and they are assigned aides to encourage the preferred behavior, the aides aren’t fulfilling the tasks assigned them. Those tasks are probably on the IEP. (I could easily believe that the school pays attention to students’ behavior which could lead other children to shun them. My children’s elementary school paid a great deal of attention to social skills, particularly for students with certain diagnoses.)
Here’s the thing. Recess is a public time. Teachers and administrators, if not parents, are in a position to observe this child stimming, i.e., the aides ignoring their charges. Why should any parent assume that the aides are any more attentive in the classroom, which is less easily observed by those in charge?
LikeLike
I think we have no reason to believe that the stimming in question is in fact “not allowed” in this particular child’s IEP (in J’s school). Given that I believe there’s a fair amount of evidence that stimming might have positive benefits for the child with autism, I’m frankly surprised to hear that stimming is not permitted in I’s school.
As Maura says, going down the line of “it will cause others to shun you and therefore you should correct it” leads to the path of children with Downs getting surgery, children in wheelchairs being forced to walk as much as possible, children with glasses not wearing them (or, I guess, these days, getting contacts) so that they won’t be taunted, and eventually the isolation of some to avoid the shunning.
I think demanding that the behavior be completely suppressed avoids the general acceptance in many autism communities that the stimming has beneficial value to the individual, helps them cope with other situtations that might be important. If a kid can do their math if they’re chewing on a straw, a straw seems pretty desirable.
It will (probably) not be possible to make someone with autism the same as a typically developing child. Differences will almost always be notable. Educating children to be as comfortable with differences as possible is just as necessary as (perhaps more necessary than) educating the different child to be as similar as possible. The individual circumstances matter.
I’m guessing that the yelling inappropriate language needs to be controlled, the flapping, not quite so much, but it’s an issue to be discussed specifically in each IEP.
LikeLike
I seriously doubt that J’s school has any policy on stimming. We’re talking a public school here.
Grandin is actually really clear about stimming. She says over and over that it should not be allowed in public. While her press machine was great for her, she said that it was something that could be contained to her free time at home. She says repeatedly that kids should not be allowed to flap their hands in public, and she thinks that 50s discipline was the best thing for her. She had to sit at the table and not do whatever she liked. The goal is to get the kids to fit in, because they need to have friends and to get a job some day.
While Ian doesn’t hand flap or anything, he does compulsively read the small print on things or recite movie scripts when he’s nervous. He’ll probably always do that, but he just has to do it covertly so nobody knows what he’s doing. As I’m thinking about it, he hasn’t done that in ages. He’s probably growing out of it.
LikeLike
In an ideal world, kids who need to stim would be able to stim. Other kids wouldn’t judge them. But that’s not how things work.
This sounds kind of like the argument that queers should stay closeted, for their own protection of course.
Some of us have the philosophy that the most important thing is for our kids to fit in, and some of us think it’s more important for them to do what they need to do in order to feel good. Sometimes both can be possible, over time, but especially in elementary school, I wouldn’t expect children (including non-spectrum children!) to behave in socially appropriate ways at all times.
LikeLike
I find Temple Grandin very interesting but a lot of her opinions seem to be based on a sample of one very exceptional autistic person.
LikeLike