If my son is behaving in a way that you don’t like or which you think is dangerous for himself or others, and I say to you, “My son is autistic,” that does not mean:
- That I am excusing or justifying or even defending his behavior.
- That you should just keep doing what you’re doing like I said nothing.
- That you know more about what to do in that situation than I do, even if you’re an expert (you may be an expert in whatever activity we’re doing, but you’re not an expect in doing it with an autistic child).
Rather, what it means is:
- You should shut up and listen, because
- You are almost certainly doing something that is completely ineffective, or
- You are doing something that will make things worse, which could mean
- You are creating an even more dangerous situation.
When a parent of an autistic child is telling you that their child is autistic, it’s usually because there is a situation occurring in which what is being said and done will make things worse, not better. While threats (of not doing the activity, for example) may work with neurotypical children, they don’t work with autistic children. They either won’t care or, worse, they will care a great deal and be pushed toward having a meltdown over it.
If you are actually concerned about safety, and a parent tells you that their child is autistic, it’s time for you to shut up and listen, because it’s clear to the parent that whatever you’re doing or saying is making things more dangerous. You don’t dismiss us, and you certainly don’t double down.
We parents of autistic children know what works. It’s your job to seriously shut up and listen. I cannot emphasize this enough: S.T.F.U. and LISTEN!
Now, once you are listening, once you are paying attention, you will be told how to solve the problem. More likely, the parent will have a better solution once you explain to the parent what you need from their child. And if you want to actually have a positive interaction with an autistic child, don’t threaten, don’t raise your voice–literally don’t do anything you think would work, because you’re wrong.
Rather, calmly address the child and use reason to explain to them why they shouldn’t do what they’re doing. They will listen. And they will give you the behavior you want. Because while the autistic child may often appear like they’re not behaving rationally, the fact is that they respond to reason better than a neurotypical child does.
So, please, the next time someone tells you, “My child is autistic,” just shut up and listen. The person isn’t looking to make excuses. They’re trying to help you understand. And they’re trying to help you solve the problems occurring with their child.
Daniel is 8 and he hasn’t had a meltdown in probably 3 years. That doesn’t mean he doesn’t get frustrated–or loud–but he has it under control, and I can immediately redirect him. Daniel being verbal helps, though he wasn’t verbal until he was about 3.5 yrs old.
While Daniel is able to avoid having meltdowns, there are children out there who are no more autistic than Daniel who are still having meltdowns in their teens. It’s one thing if the child is so severe that they cannot speak and otherwise have extreme difficulty communicating–the frustration of trying to communicate and having your body refuse to cooperate is without question extremely frustrating. But there’s honestly no excuse for someone who is verbal to be having constant meltdowns (which isn’t to say that we won’t have our very, very bad days).
There are several things we did with Daniel that resulted in him no longer having meltdowns. One thing we would do was hold him until he calmed down. We would also repeat his name and try to sooth him by encouraging him to tell us what happened. Afterwards, we would talk to him about what frustrated him and ask him if his reaction seemed reasonable given the situation. He always agreed it wasn’t.
We also told him that if he felt a meltdown coming on, to squeeze our hands or to count down with us from ten. We introduced these at the same time that he was agreeing the causes of meltdowns were unreasonable.
The bottom line is that we always held Daniel accountable for everything he did, even during a meltdown. We made him apologize to anyone he may have harmed during the meltdown and clean up any mess he made. We helped him communicate rather then have a meltdown, and helped him to reason through his frustrations. Autistics can be reasoned with–perhaps more so than non-autistics–and so if you’re using reason with them, their meltdowns should becoming less and less intense and coming on less and less often.
What cannot be done is to accidentally reward them for having meltdowns. Never give in. Never avoid what may lead to a meltdown, as they will learn that having a meltdown will get them out of uncomfortable situations (or simply situations they don’t want to be in). Make them talk about it (if they’re verbal, of course). While it’s true that once you’ve crossed over a certain point, the person is no longer entirely in control of what they’re doing, since the world has become extremely chaotic and confusing, the fact of the matter is that autistics are in fact in control of themselves up to the moment they have their meltdown. If that weren’t the case, it wouldn’t be possible to reduce the number and intensity of meltdowns through reason and various calming techniques.
It has been my experience that older children especially will actually use meltdowns to get themselves out of things they don’t want to do–such as go to the store, stay home, apologize to someone, go to class, or even be around someone in particular. If you give in because they have a meltdown, that will tell them that meltdowns will get them what they want. While I do not think you should punish a child who has had a meltdown the same way you would punish a child who threw a temper tantrum (since they are hardly the same thing), there should still be consequences for the meltdown, as already mentioned–apologies, cleaning up the mess, etc.
Too often we find ourselves tempted to offer the “autism excuse” to justify ongoing meltdowns or other behaviors. Somehow excuses are only offered for the most problematic behaviors that we can in fact learn to control, while we are held responsible for “minor” things that are in fact more emblematic of autism and less under our control. When that happens, we mostly end up being pitied rather than taken seriously. We aren’t given accommodations for reasonable things and given excuses for the most outrageous ones. This benefits no one–especially not us.
Tali Shenfield’s Child Psychology Blog has a post on improving executive function. I have written on executive function before (here and here and here and here) but this post goes into greater detail about all the things affected by executive function, including:
- achieving goals we set
- achieving goals others set for us
- short term memory
- organization skills
- emotional self-regulation
Shenfield also points out that executive functioning is on a gradient, meaning a 12 year old could have the emotional maturity of a 9 year old. Or, as I’ve told my wife, Daniel (8) has the emotional maturity of his brother, who is 5, while his cognitive abilities are much more advanced. But with executive functioning essentially making him “act 5,” most people don’t realize how advanced he is in many other ways.
I have issues with all of the above listed, which shouldn’t surprise anyone. At the same time, once I have all my ducks in a row and I have said I’m going to do something, you can take it to the bank that it will get done. In the end, I can achieve goals I set or other set for me because for me it’s a matter of integrity to do what I say. Deadlines loom large for me, and that helps me overcome at least that issue–when a clear deadline is actually set.
After losing a full time freelance to full time position because the company I was working for learned I have Asperger’s and, as they put it, they had “no intention of accommodating you,” I started substitute teaching for Dallas ISD. Because I live in Richardson, a suburb just north of Dallas, I was restricted, due to travel time, to which schools I can teach at. And through some sort of bizarre set of coincidences, I was somehow only been able to take special education classes — meaning, I was surrounded by autistic children almost every weekday for over half a year.
It was a very eye-opening. I saw and interacted with autistic children in elementary, middle, and high school. And I saw how nobody — not a single special education teacher, not a single teacher’s aide, let alone any of the regular teachers in which some of these students have “inclusion” — has the foggiest idea what to do with these children. I saw them try to interact (and discipline) autistic children as though they were simply neurotypical children with behavior problems. But this is exactly the wrong way to think of them. Given what we have learned about autistic people, given what we know about why they behave so differently from neurotypicals, one is bound to fail to teach proper behaviors, let alone provide them with the rest of the education they need to receive at their schools. As a result, I have seen in the high schools extremely intelligent young men and women who have not received nearly the education they could have received.
At the elementary school, there was about a dozen students, most of whom had autism. When they would “misbehave,” they would be threatened with moving colors, etc. that are typically used in the schools. These tactics clearly had no effect whatsoever on their behaviors, as they didn’t mean anything to the children. Abstract symbolism don’t mean much to us. Yes, there were picture cards for the students, but the use of those picture cards seemed to be limited at best. Picture cards are necessary for autistic children, but they have to be used constantly and consistently. But more than that, threats upset autistic children, shutting them down, pushing them toward having breakdowns. If you want to change an autistic child’s behavior, you have to use logic and reason — and use it repeatedly. Also, if they are doing something to another child, you have to get them to empathize with the other child to get them to stop what they are doing.
For example, one of the children was poking another in the back. The one being poked was just sitting there and taking it (probably having gotten used to her poking him all the time), but he was obviously annoyed, as anyone would be. I got down on the floor and said to her, “Would you like it if someone poked you like that? Would you like it if someone poked you like that? Would you like it if someone poked you like that?” I tried to get her attention, repeated her name, and kept asking the question. After a while, she finally said, “No.” I said, “Well then, you shouldn’t do that to him if you wouldn’t like it.” And she stopped. And she never did it again — at least, the day I was there.
I was in that class with the special ed teacher’s aide. During recess, the aide asked me, “How on earth are you reaching these kids?” She had never seen anyone change their behaviors so quickly before. Of course, there’s nothing I was doing that I haven’t learned from simply doing research on autism and some of the behavior modifications used. It is nothing anyone out there couldn’t do or learn about. So I told her what I was doing and why I was doing it. It was a complete revelation to her. I gave a brief explanation of what is happening with children with autism, why they acted as they did, etc., which of course ties back in with how to properly teach proper behavior to autistic children.
That same day, toward the end of the day, the same girl got upset and ran to the other side of the room. She threw a tissue box and tried to hide among the pillows in the corner. I went over to her and told her she needed to pick up the tissue box. She of course just withdrew. I had noticed earlier that she liked playing a computer game with a gorilla, so I grabbed a toy gorilla and started talking to her through the gorilla. The gorilla asked her if she wanted to come back to story time and if she would pick up the tissue box. She smiled at me, nodded, and stood up, picked up the tissue box and put it away, and then walked over and sat with the other students and listened to the story. Why did this work? Autistic people are object-oriented, she liked the gorilla game, and I got her to focus on an object she liked and had it talk to her. In other words, I successfully communicated with an autistic child. But few truly understand how to do this.
At one of the high schools at which I used to sub, I taught in all three of the special education classes, which range from classes with students so severely autistic that they are nonverbal and can just barely function at all to talkative, intelligent, humorous students who I wonder why they are not in inclusion classes. There are students who are clearly only in school just to give their parents a break — they won’t be learning anything, and whatever they learn, the won’t be applying outside of school, as they are not going to be holding any sort of job. But those aren’t the students I want to talk about.
The students I want to talk about are those who are together in a special education class that is designed to teach little more than a handful of practical living skills, but who really ought to be in a regular class, because they are definitely intelligent enough to do the work. Many of these students are in fact probably more intelligent than the vast majority of regular students. Why, then, are they not in regular classes? It is because of their “behavioral problems” that have followed them throughout their school years. These have been lucky enough to be identified as autistic, so their behavioral problems were sequestered away in the special education classes rather than the behavioral units (more on that later), but as a result, they have also been sequestered away from a real education. And it is all because nobody understands how to properly modify their behaviors. By the time they reach high school, they haven’t been taught how to properly interact with anyone other than other autistic people — and a dozen frustrated teachers. As a result, we have an army of highly intelligent people who have received no education to speak of and thus will not be able to live up to their full potential. The person who could have been the next Newton may be that socially awkward, “slow” young man or woman who talks funny busing your table before you sit down at the restaurant. That is all they are really being taught to do, and that is a real shame. And it is all because nobody understands how to raise autistic children to be functioning adults.
But, as troublesome as all of this should be to you, I promise you that things can be far, far worse. I know, because I have seen it.
One day I was assigned to a middle school behavioral unit. If you know anything at all about the regular behavior of middle school students, you can only imagine how over-the-top ridiculously bad the behavior of these students had to have been to get them in a behavioral unit. We are talking about repeat offender fighters, kids who take offense at everything and anything and who are convinced that beating the crap out of people is the solution to every problem. In here was one student who — other than cursing like a sailor at the drop of a hat — quietly did all of his school work and played on the computer. He wanted to be left alone to do what he was doing, but of course none of the other students would allow that to happen. They would harass him, turn off his computer, do anything they could to get him riled up and curse at them. A girl in the class, however, would first harass him until he called her a “bitch,” at which point she would get mad and hit him. She hit him four times before she was taken away (by the other adult in the classroom with me the whole time, since there is supposed to be at least two people in there most of the time) to be suspended.
However, there was a time when the other adult had to take three other students away, leaving me with this student and another. The constantly harassed student suddenly came up and started talking to me. The first thing I noticed is that he had an odd way of speaking (odd if you’re not autistic) and seemed a bit awkward. It was obvious to me that he was somewhere on the autism spectrum. He started complaining about the other kids, and I said that if he didn’t like these kids, why was he doing things to get in the behavioral unit? His answer?
“I’ve been in the behavioral unit since I was in first grade. I was put in it after I bit my teacher. I’ve been in the behavioral unit in first grade and second grade and third grade and fourth grade and fifth grade and now sixth grade.”
“You’ve been in the behavioral unit all this time because you bit a teacher in first grade?”
“Well, no . . .”
Well, of course not. But from what I had been witnessing — and what I would witness in the last hour of the day — convinced me that, in a real sense, he was in fact in behavioral units since first grade because he was in one in first grade.
Here is the probable scenario. This kid was/is an undiagnosed autistic. Maybe Asperger’s, but definitely on the spectrum. And definitely prone to meltdowns. His odd behaviors were probably enough of a turn off for his fellow students and teachers, but no doubt they considered his meltdowns to be mere temper tantrums. Meltdowns occur when a stressful situation — or series of them — becomes too much. Meltdowns can appear to be very violent — many autistics will also engage in self-harm, especially if they are not allowed an outlet for their frustration. It would not surprise me if more than a few people have gotten bitten by an autistic child during a meltdown if the adult was intervening wrong. And if the child is undiagnosed, he’s not an autistic child who needs help (but who won’t get the right kind of help because almost nobody understands how to help them), but a serious behavioral problem. So we get a child who gets easily stressed having a meltdown, a teacher who is stressed dealing with it wrong, and therefore get a bitten teacher and a first grader sent off to the behavioral unit.
Of course, the kind of children in the behavioral unit are anything but understanding and kind. They are cruel, bullies, a certain percent are sociopathic, and autistic children are weird and seem to be the perfect victims. So they get picked on, the stress results in violent meltdowns, and the child remains in the behavioral unit. Year after year after year. And the problem is never solved, but is in fact worsened by such an environment.
That is the situation this poor child is in. He’s been placed in a never-ending Hell, all because he’s an undiagnosed autistic. His fate? He has been taken away to the mental hospital twice. And based on his conversation with me, he is very, very, very angry.
So after being picked on all day, he was told at the end of the day to go outside and get his backpack. He didn’t want to, but I talked him into it (which got me cursed out a few times for my effort). He stepped out to see his papers being blown away, the girl who was being suspended for hitting him all day having apparently dumped out his things. And that’s when the meltdown occurred. He began picking up desks and throwing them. Keep in mind that he’s eleven. All of the desks and chairs ended up in a pile in the middle of the room. It was a slow-motion rage — oddly controlled, as he went out of his way to make sure he never threw a chair or desk in such a way that I would be hit by one. And I was close to him the entire time, trying to talk him back.
I never did talk him back. The bell rang, the teachers told me they would take care of it, and I had to pick up my own children from daycare and school. When I walked away, he was outside the portable, banging his head against the metal side. I glanced back one last time to see a chair flying out of the door.
Without a diagnosis of autism, and without parents like us, Daniel could have been that child. That is a sad, terrifying, and infuriating thought.
One thing people do not seem to get when it comes to people on the spectrum is that they literally cannot help certain behaviors, and they do not necessarily respond the same way as regular children or adults do to given situations or requests, depending on how they are delivered. To expect them to do so would be equivalent to expecting a blind student to look at you when you speak to her, or a deaf child to listen up or a man in a wheelchair to walk over to you. There is a tendency to think that the issues surrounding people on the spectrum are “simply” behavioral; however, there is a powerful underlying neurology that affects that behavior and the way they interact with the world and other people.
As a consequence, the situation in our schools is, for those of us who understand what is really going on with autism, absurd. We expect autistic children to simply change their behaviors. However, if there were a deaf child, do you think they would refuse to have someone who could do sign language to communicate, but insist that she listen like all the other students? For similar reasons, it is important to understand that there is far more to autistic people than meets the eye, and dealing with them does in fact require training. That training is lacking in a variety of institutions, in schools across this country, including in special education — I have seen the lack. But that lack needs to be remedied.
Take for example the issue of meltdowns, which are unfortunately not uncommon among people on the spectrum. If you are having a meltdown, you have no control over your behavior whatsoever. This is an unfortunate feature of children with autism, especially younger children. It occurs when they get stuck on something and/or are completely overwhelmed in sensory and social input. This is a feature of autism which many children grow out of, but which some do not. Meltdowns occur when a child is in a situation in which he feels so overwhelmed and threatened by his environment that becomes overwhelmed. This is not an intentional behavior problem. There is nothing intentional in meltdowns.
A meltdown should not be mistaken for a temper tantrum, as the latter are an intentional way for the child to get what he or she wants, while the meltdown comes about from a distressing situation. They can often be mistaken for tantrums because there is typically some object of focus involved. To understand what is happening, you have to think about what happens when there is positive feedback in a sound system. The sounds gets louder and louder until it becomes a deafening screech. The same thing is happening in an autistic meltdown. This is a feature of autism, and it cannot be punished. What must happen is the distressing situation must either be avoided or the person has to be prepared for it.
If someone is having a meltdown, you cannot control having that meltdown, since it is a feature of autistic physiology. Unlike with a tantrum, a meltdown should not be punished, as it makes as much sense to punish someone for something completely out of their control as it would be to punish a deaf person for refusing to listen. Yet, these are seen as “behavioral problems” all too often.
These sorts of problems arise when the adults do not have the training they need to deal with an autistic child, to ensure they are not overwhelmed and so they understand how to deal with things like meltdowns. Our son, for example, is also hyperactive, and as a result he has a hard time sitting still. In a school environment, it is expected that the children sit still for long periods of time. However, Daniel simply cannot do this — at least, not without giving him something that will keep his mind busy in place of his body. Understanding the nature of autism would go a long way toward helping educators deal with autistic children and help them to get a good education.
Fortunately for Daniel, his mother and I understand these things, and we plan to fight to make sure Daniel is treated well. Don’t get me wrong. There are plenty of behaviors we don’t put up with. But we also know how to deal with them and how to get Daniel to stop them. Repetition and logic work best for Daniel. And talking him into empathizing with the person, if he’s aggravating someone else. But nobody knows these things, including most special education teachers. I have seen plenty trying to treat autistic children like regular children, and they inevitably fail to get the desired results. All because, although (if we include Asperger’s and autism, as the DSM-V does) around 2% of the population is on the spectrum, it seems that nobody really knows anything at all about it. That is something that needs to change. That is something I intend to change.
I suppose it must be tiring to live with someone who has autism. Especially younger children, and especially the more severe it is. You never know what’s going to cause a meltdown, and getting upset at the child having the meltdown only makes things worse. You have to step back, let things calm down, and then try to guild the child toward calmer responses to things. You feel like you’re walking on eggshells all the time, and you hope eventually the meltdowns will stop.
I do understand the feeling, even if everything is in many ways in reverse for me. I feel like I’m walking on eggshells all the time. I’m always afraid I’m going to say or do the wrong thing at the wrong time to the wrong person.
For example, it can be hard to have a discussion, let alone an argument, when you have short term memory problems. You know you heard the person say something that led to you having a particular response, but you don’t get what they said exactly right, and then they rightly are upset that you got what they said wrong. But you don’t mean to get them wrong. Worse, in any sort of discussion that is even a little heated, it can get confusing and you start hedging and trying to find your words, and while you’re trying to find your words, the other person is still going.
Now imagine you have a history of people misunderstanding you, taking what you say and do wrong, because they are interpreting all your behaviors as being neurotypical, even when they ought to know better (because most of our interactions are driven by unconscious assumptions, you cannot actually expect people to ever be consistent in their treatment of and assumptions about you). You go through life always wondering if you’re saying the right things and doing the right things, and you can never be yourself, and you have to always adjust your thinking and your behavior to everyone else. Talk about walking on eggshells! It’s no wonder we on the spectrum are full of anxiety all the time.
So I can understand why parents of autistic children, why those with autistic spouses, might feel they are always walking on eggshells. I really can. And I’m sure, given that Daniel seems to hold things together pretty well at school, that he understands to a great degree as well. After all, he has to constantly adjust his behaviors to everyone else’s expectations. It’s our jobs as parents to help our autistic children to be able to do that by helping them come up with coping mechanisms better than getting upset–even if there is a great deal to get upset about in the world.