A note to parents about your children and school.

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I notice many of you write of your frustrations and worries that your children are not progressing at school, that your children are not happy at school, and no amount of anything seems to help.

I think I can offer some valuable insight into the matter, because I was one of those children. In fact, I am the reason some little county school district on the west coast held their first IEP meeting over 20 years ago.

In most western countries, there is a free public education system, and attendance is mandatory. The point of this public education system is to enable children to learn, and though there is variation in learning styles from person to person, most humans process information in a fairly homogeneous manner, that does not fairly significantly from one person to the next.

With many children with AS, this is not true. Most children with AS have some type of processing deficit, such as auditory processing issues, and slow coding speeds. Many children with AS use a mental container, or visual categorization strategy, where they must group information a certain way visually or mentally before they can make sense of it. Many children with AS have very linear thinking, and get confused when teachers skip steps in favor of "tricks" that the majority finds easier to remember because it gets them to the answer sooner and they really don't care about how they got there.

In short, the public education system caters to the learning style of the masses, and not the learning style of many of those with AS.

To compound these issues, many children with AS have sleep disorders, such as delayed sleep phase syndrome. This is not really a disorder. People with DSPS will sleep a full 8-10 hours and run through a normal sleep cycle when allowed to do so, only this usually takes place during the hours of 4am and 12pm. This is nothing you can change. It is biologically determined (which is why I am up at this hour after 30 years of "trying to get on a proper schedule") and many children with AS are chronically sleep deprived.

And then there is the fact that many children with AS have little in the way of friends and school, and are frequently bullied.

So in the end, you are pulling your child out of bed after 4 hours of sleep, sending them to a place which only teaches them lessons in futility, and in which they either have no friends, or are bullied and harassed until you pick them up in the afternoon, and bring them home where they inevitably, and quite understandably, fall apart.

Eventually, usually after a lot of jockying with the school, you might get them a few psychs and an IEP.

For some children with AS, a program is going to be found that works for them....they are in the minority.

For most children with AS, the accommodations will not be effective. The reason is, they will still have to get up after 4 hours of sleep....6 at the most, they will still be taught by someone who really DOESN'T understand their learning style. They will still probably not have much in the way of friends at school, and they will still have X amount of material to cover in X time, because that is the law, and even though the point of public education is to educate children, the point of focus can't help but to degenerate into getting the child to follow the law, even at the expense of the child learning.

Children with AS are square pegs, and were born into a society which insists on pounding them into round holes, and no one is defending your child against this. Those tasked with helping your child are not actually tasked with helping your child. They are tasked with getting a square peg into a round hole (getting your child to follow the law) and to do this, they may try to shave some corners off of your child to make them less square, and more round (this is usually called medicating). Then they try to pound harder (this is usually called, threatening to put your child in a group home).

But your child is NOT going to go into that hole any more than a pig is going to fly. So stop stressing about it.

All that should matter is that your child is learning something, and has things in life they enjoy.

As long as they can demonstrate at home what they do not demonstrate on progress reports, and report cards, they are fine, they are learning something somewhere...probably at home in their spare time when they can study the things they are interested in and learn the way they can learn, and in elementary school, as long as they learn reading, writing, and some degree of arithmetic, that is really all that matters.

It's highschool that they have to do well on paper in, and even if they don't, there is always community college.

Word.

Hi Chronos, I found your post to be very-well articulated, succinct, and comforting. You do provide valuable insight. So I really appreciate your post, it re-affirms what I've known for a long time, and to see it in black-and-white (well, black and blue, really) on the computer screen validates my thinking.

Except for this:

This is far easier said than done. I wish it were that easy and I could just flip a switch and stop stressing. However, I find that managing my own stress is the most challenging part of being a parent.

I would like to know, did you go to college? Are you working? Thanks again for your kind post

Word.

I hope that by saying "Stop stressing about it" you actually mean "Don't stress if they don't excel in the NT public school world in the way the NT public school world expects them to"
The latter, I can understand. The former, by itself, makes me want to scream!

As parents, most of us will never stop "stressing" about it. If we didn't stress about it, there would be no IEPs and no accomodations and the world we send them in to every day would be even worse. I think we probably have different understanding of what those words mean.

Well...i've had phases where i just "stopped stressing about it" , actually. with all their running and prompting and punishing and being outraged about my son, sometimes i just feel like laughing out loud. as long as he has time for his special interests, school is just a NT terrarium to him, where he can learn about the mecanics of friendship and power and pecking order. 8 hours of that every day is a bit long though, i wish he had less school time and more learning time but hey, the law is the law!
i might homeschool him in the future though. right now he is just very interrested in working all these nt stuff out, so i'm letting him. If and when he gets sick of it , i will not go against his will.

I didn't write "Don't stress" but I would, and I would mean this:

Make sure your level of stress does not produce anxiety that becomes a problem in and of itself. This is the biggest unnecessary problem I see with parents of autistic children. I don't want any parent to care one whit less about any child. I want parents of kids on the spectrum to recognize that they under extraordinary amounts of stress and that they must do things every day to deal with that.

It's hard to take care of yourself if you have a child whose needs seem to be constantly unmet. Many parents of kids with autism feel bad if they go see a movie with their spouse. Many even feel bad if they make time to spend alone with an NT child. And you've got to, got to, got to figure out the logistics, find the energy, and do those things. Having a child with autism does not give you the right, or your body the ability, to live in a state of perpetual crisis.

The one place where I would vehemently disagree with Cronos is in the solution to the sleep problem. I think you should do literally everything in your power to get your kid eight to ten hours of sleep a night. I suggest that you do it mostly by turning off the lights in your house and everything that makes noise when its time for your child to go to bed, and that you give them all the comfort you can as they make the make the often very painful transition from wakefulness to sleep, and back again. As a parent of any child, these should be your highest priorities:

Making sure your child eats three healthy meals a day
Making sure your child gets eight to ten hours of sleep a night
Making sure your child gets some physical exercise every day

If people did those three things, most kids would be able to handle school, even with autism. It's just that those things are incredibly hard to get any child to do, and we pretend they just magically happen. They are nearly impossible to do for kids on the spectrum, and I'm so sorry you have to work so hard at them all the time.

But you do. Honestly, keeping yourself sane and making sure your child's basic physical needs are met should be your top priorities. And they're tough nuts.

I think kids should be in school, as much as possible. I think few kids on the spectrum should be at school all day, every day-- the best solution is often a late start, which eliminates a lot of the sleep issues. If your kid is two years ahead in math, hire a tutor just for that and let him start school third period. Better yet, skip any subjects OTHER than math or English-- it's all kids are tested on in a high stakes way anymore, and, boy, do the school's know that. Homeschool for one or two subjects rather than pulling your kid all the way out. Or hire a tutor like me who has autism or specializes in working with kids on the spectrum.

Don't worry about things beyond the basics, because really taking care of those is more than a full-time job for a parent of an autistic child. Don't beat yourself up for the times you don't up everything, because you're a real person, too.

That's what I would mean by, "Don't stress."

And please- - - don't.

I think we could start a whole thread about "don't stress about it."

To the extent problems are actionable, ie have a valid solution, the pursuit of that solution is a worthy goal even if it entails a little stress from the parents. Since I honestly believe that kids can thrive in education when the right environment is found, to the extent that stress is the push to find that right environment, I'm for it.

But, too often, we as parents can end up stressing over things that are not actionable, and do not have a valid solution. Stressing over those things can create an unhealthy environment for the child in multiple ways. It can put pressure on the kids, and on the parents. It can push the parents into expensive and unproven therapies that end up increasing the stress in the family, and create a treadmill the parents are afraid to jump off of, but that actually takes them nowhere, and the whole time they have to keep running. Being told "step off that treadmill" is sometimes the best thing you can tell a parent.

Yes, by "stop stressing about it", I mean your child is likely never going to conform to what the school system wants, so when something doesn't work don't "rip your hair out".

The important thing is that these attempts by the school system don't inhibit your child from learning.

Don't force your child to learn one thing when they are clearly focused on something else at the time. When a child with AS is focused on something, they will absorb that information like a sponge. You can get back to the other thing.

Don't bar your child from extracurricular activities or "fun" things as a punishment or a way to motivate them. This doesn't work with most AS children. It has an isolating effect as it deprives them from potential social interaction and learning experiences, and they will likely spend the whole time they are not engaged in this activity they wanted to do having a meltdown, or in shutdown mode.

The only thing I would do is, spend 30 minutes or so each day teaching your child to do some kind of structured study work, because they will probably be able to tolerate the education system a little more by highschool, and may actually do very well in college as they are allowed to study what they want with a few inconvenient courses on the side, and they will have to be able to sit down for a while and do some degree of structured work they don't want to do.

And if your child refuses to go to school for whatever reason, and you have the time, take them some place education that day. Take them to a museum or library. Have lunch with them. Talk to them. Listen to them and try to find solutions that actually address their issues instead of ignoring them.

Here is an example of what I mean.

Child with AS: "I can't go to school, it's too stressful!"

Wrong response: "Work is stressful and I still have to go"

Right response: "If you can tell me some specific ways that it's stressful, maybe we can try to fix it."

Child with AS: "I don't know, it's just stressful and I can't do it!"

Wrong response: Well you have to, it's the law. I have to do a lot of things I don't want to do.

Right response: Run down this list.
"Are you tired in the morning?"
Yes: Consider sleep issues.

"What do you hate most about school?"
"What do you like most about school?"
"Do the other kids talk to you?"
"Are they nice to you?"
"Do you have any friends?"
"Do you want friends?"
"Do you want to be friends with children in your class?"
"Do you eat lunch with them?"
"Do you play with them at recess?"
"What do you do at lunch and recess?"
"Do you ask the teacher for help when you need it?"
"Do you tell the teacher when you don't understand something?"
"Does the teacher listen to you and help you?"
"Is the teacher nice about it?"
"Do you feel like the other kids have information that you don't?"

Your child might maintain that the whole thing is just too stressful. This is an indicator that you will probably not find a fix for this issue in the arena of the standard school system. Your child might just do better with some alternative or home school system, supplimented by a lot of fun social or extracurricular activities, that you as a parent are going to have to involve yourself in because most children with AS are not going to spontaneously form friendships in a room full of children their age and need an intermediary who knows that 9 near olds don't make friends by going up and introducing themselves like adults.

Excellent original post, Chronos. We should bump it every week.

This. What I keep seeing over and over again is that the parents who stress a lot are the ones who haven't yet given up on getting their "square peg" aspie child to fit into the "round hole" neurotypical school system and society. It isn't going to happen. Yet, they keep trying, even though nothing works, and that's what stresses them out.

The parents who have truly accepted that their aspie children are "square pegs" that will never fit into a society of "round holes" - like DW_a_mom, and the lady with the hippo avatar, for example - they don't stress about things they can't fix. They just work on fixing the things they can fix. It's that acceptance that will allow parents to "stop stressing".

The way I read him, Chronos is saying that still won't get us an actual 8 hours of truly restful sleep. The only way to do that would be to let us sleep until noon, and find a school that doesn't start until 1pm.

That would have worked really well for me, though it would have been unrealistic. I hadn't thought of it as an aspie trait until now, though.

Excellent, thoughts! This is helping me wrap my head around this a bit. What I see though is not parents hoping their square pegs will become round but hoping and fighting for the school system to finally create some square holes for our precious square pegs so that they can be comfortable and NOT have their corners shaved off.

Who was the guy who was doomed to push the boudler up the hill for all eternity...?

Last edited by Bombaloo on 12 Nov 2010, 4:57 pm, edited 1 time in total.

Interesting list of questions and suggested responses, Chronos. I've given a lot of "wrong" responses, but the do have their place over time, because parents are just people with their own issues and even AS kids have to learn that.

My son had a wonderful elementary school experience and, overall, a less positive middle school one. I've given serious thought several times to pulling him, but he hasn't wanted me to. And the reason I mention this is that your posts, Chronos, don't mention potential conversation number 3, which is basically where the parent explains that they do understand what is stressing out and upsetting the child, but have constraints A, B and C which prevent them from just pulling the plug, but perhaps there are options D and E out there which could be made to work if the child thinks D or E would be a good solution. My son always turns down D and E, but in doing so also ends up feeling more in control of the situation he is currently in, and becomes more willing to figure out how to make it work, because he just made an affirmative choice to stay in it. I've never presented D and E with the goal of making him work harder at the current situation; those are always real alternatives, but it is interesting to see how just making that offer changes things in the here and now.

I agree, Bombaloo, btw, that what most parents on these boards want most is for the schools to change the shape of the peg holes.

My parents had to take me out to homeschool me because I was going to eventualy commit sucide if they didn't.

i think its definitely important for us to realize that our kids dont necessarily fit the usual boxes that schools and society try to put them in. but i think its equally important for us to not assume they wont fit simply because of their diagnosis. for instance, dont assume they have a sleep disorder and just accept it without trying to learn what the unique childs issues are. my son has serious sleep issues. conventional methods werent working. if we had assumed he had a sleep disorder and just let him stay up every night until he dropped from exhaustion, which was what was happening at the time, that would have done nothing to address the problems it was causing for him. instead, we threw out everything, both conventional and autism related, and approached it with what we knew about him specifically. voila! he now goes to sleep at a consistent age-appropriate time every night.

for me personally, if i choose to stop stressing, that would be giving up. stressing motivates me, it keeps me working to solve problems. i only stop stressing when no improvement is needed. thats probably a function of my own personality tho, its just how i operate. us parents are unique individuals too =)

our goal shouldnt be to stop stressing though, the goal should be to figure out how to mold those holes in society to fit our child's shape. to change those round holes to fit our square pegs. but dont assume your peg is square just because its not round. maybe its octagonal =)

It sounds so simple but as you acknowledge it's anything but simple. I have by now sincerely accepted that my daughter is not going to follow the same academic and social trajectory that I did or that anyone I know did. She luckily sleeps quite well and has a physically vigorous enough stim that it seems to be giving her exercise. But that "three healthy meals a day" part is not working out so well. She'll get fixated on one food and eat that one food almost to the exclusion of anything else for a worrisome length of time. She'll go without eating for a worrisome amount of time- skipping one and sometimes two meals a day. I have talked to her perdiatrician about it and the pediatrician checks her for any signs of malnutrition and has found none but dcan't give me any advice beyond "make sure she eats 3 healthy meals a day". But...what if she doesn't? I can't actually make sure she does that. I can fill the house with healthy food and banish unhealthy food and hope that hunger will drive her to eat what happens to be there and sometimes that actually works. But it's stressful.

From the moment my son was born, feeding was difficult and it continues to be so. For years I got very stressed about it.

About 3 years ago he was referred to a dietician at the local children's hospital, and instead of talking about those "three meals a day", she suggested that I should accept that he is a "grazer". She said to continue offering food at mealtimes, and also to have food available to him throughout the day. As she said, eating three meals a day is really a social custom and it doesn't suit everyone. That advice really helped me!

Some people have said, "but if he eats between meals then he won't eat his lunch/dinner!". Easy answer to that is that he was never guaranteed to eat more than a few mouthfuls, if that at mealtimes anyway, and this way I know that he is eating at least as much as before, and probably more.

Edited to add:

Reading this post back to myself, it occurs to me that by catering (literally!) to my son's eating habits, I have created a square hole for that square peg, and that is what really did remove the stress for all concerned. Previously I had been trying to make him fit into the round hole of the "three meals a day".

Last edited by Marcia on 12 Nov 2010, 8:53 pm, edited 1 time in total.