The One In Which I'm Feeling Both Patient and Impatient With People (also The One In Which I Spend a Lot of Time Telling You What You Think)

My son has high functioning autism.

You probably don't know what that is. And that's a problem.

See, hardly anybody knows what it is and the people that do know what it is all have different ideas of exactly how it looks and acts.

With my son, it very often appears that there's nothing wrong with him. He speaks well (really, really well) and he can understand anything you say to him (or pretend to.) But, he might seem awkward. Or clumsy. Or rude. Or self-centered. Or rebellious.

It is, of course, completely impossible to look like a good mom if your child has high functioning autism. If your child has autism and cannot speak or is obviously impaired in some way, people are understanding. They think that you must be doing your best. At least, this is what I hope people think if they see someone with an autistic child.

But, if your child has high functioning autism, your child can talk like other children, your child can learn like other children, your child can participate in any physical activity like other children. So, why should anyone believe that your child has a disability? The answer is: they don't.

What people think INSTEAD is that YOU are a horrible parent. What people think is, "I would NEVER let MY child get away with such and such." What you don't know is, "Nor Would I!" My child does NOT get away with things. But, my child is COMPLETELY unpredictable. The best thing that I can predict about him is that I won't be able to predict him.

So the answer to the question, "Why didn't you stop him from doing such and such before there was a problem?" is, "I didn't know there would be a problem. Last time he was fine. I have to allow him to do SOME things."

At a play audition this weekend, for example, we waited for 3 and a half hours through auditions and callbacks. My son was being a little quirky in his movements -- he always is (this is the usual tipoff for people who know something about autism), flapping his hands a little in excitement and running funny throwing his feet out to the side instead of behind him. But, otherwise, was connecting to the outside world fairly well.

Then I heard that the moment he walked into the audition room, something changed. Where other kids walked in and saw a room full of chairs and said, "Oh, here are the chairs, it must be time to sit in them." MY son saw something else. I'm not sure what. But, something said to him, "Here is a room full of chairs, I'm going to make a playground out of it" and he started running around the room and jumping up and down from the chairs.

So, now WHAT does he look like to the people running the audition??? He looks like a loony child, that's what he looks like. He looks like a child that has ADHD that's unmedicated. He looks completely uncontrollable.

If I'd been in the room, I would have told him, "Come sit here now" and he'd have done exactly what I'd said without a SYLLABLE of complaint. But, I wasn't supposed to be in the room. And, I didn't know that he was going to change the moment he walked through that door except that I know that it takes nothing at all to change him and so it's very probable that a change in the environment can change everything.

So the casting director felt he could not work with him. Of course he thought that. Who would want to cast an unmedicated hyperactive child in a play and babysit him through who knows WHAT behaviors for months at every rehearsal?

And I wouldn't even know how to advise him. It takes a while of watching and studying before you can begin to understand how much you don't understand about my son's behavior. You'll think you have it all down and he'll throw something new and weird at you. You'll think you've thought of everything, given him every rule that he could possibly need, but you didn't think you'd have to remind him to wear shoes. Or to put on pants. Or to not eat stuff that isn't food. Or to not get overly offended because he got up from his chair and walked across the room so someone else sat in his chair thinking it was free. You can't predict everything that his mind might come up with.

So, I feel impatient that no one knows anything about high functioning autism. I feel like people should know something and know what they are looking for. Please stop thinking that if I just did THIS punishment (soooooo many people have tried to tell me THEIR success stories about discipline. PLEASE. I use discipline. You cannot retrain the mind of an autistic child completely with discipline. You can make slow progress over a long time and you will not be successful in everything) or used THIS medication then he would be fine.

There IS NO MEDICATION FOR AUTISM. I am not being some stubborn mom who refuses to medicate my child. There is no medication. He looks hyperactive sometimes, but he's not. What he's doing is misinterpreting the situation. He didn't realize everyone else was sitting in the chairs. He didn't make note of the other people in the room at all. In his mind, those other people are stored in the same place as inanimate objects. He does not take his social cues from other people any more than you or I would look at a table in the room and decide that we, too, should get down on all fours and let people put their plates on us.

The easy solution is to give my son a guide. Someone who IS familiar with his situation who can instruct him in ways he understands. All he needs is someone to tell him, Sit here. We're not talking now. Now it's time to be still. And he'll do it. He's not rebellious. He's not hyperactive.

I would be this person. But, hovering stage moms are not popular so why would anyone want to work with me around? Especially when it's much much much easier to dismiss my child as a behavior problem and not work with him at all.

If my child had cerebral palsey and needed some additional consideration and perhaps the assistance of a parent, my guess is that the casting committee would find it charming to include such a child in their performance. But a child that seems to have a discipline problem is not charming. And telling people that he has autism, just makes it look like I'm making excuses for him.

I'm not. He CAN change in little, little ways. But it takes a LOT of concentration for him and sometimes he will get distracted and forget. And, he is a teenager, sometimes he might dismiss what I'm telling him and think he knows better. I do think that he should be disciplined if he does not do what he's told. If he's told by an adult or a person in charge to sit down and he does not -- his autism EXPLAINS IT but does not excuse it. There should be a consequence. If there is not, then he will not go through the EXTREME MENTAL EFFORT AND CONCENTRATION that it will take in the future to do things that do not make any sense to him.

I try to explain it to people this way:

If I told you that you need to talk backwards all day tomorrow and the next day and the next day and forever, you'd think I was crazy. You would never believe that there is ANY need for you to talk backwards and it would take a lot of effort and concentration for you to talk backwards. You would see NO down side to NOT talking backwards and you would see NO upside TO talking backwards. So, why would you do it?

This is how it is with my son. When I tell him he has to do things differently because it's causing him a problem, he thinks I'm crazy. He sees no problem, so why would he do things differently?

He doesn't notice that he has no friends. He doesn't notice that people get irritated with him (he CANNOT read your facial expressions or your tone of voice. If you don't tell him in words "I am angry with you" he WILL NOT KNOW. Ever.) He doesn't realize that he looks odd or rude or rebellious. He doesn't know.

So, I have to tell him and then I have to convince him. And as he gets older, he's more willing to believe me. Mostly because he's capable of comprehending more of the evidence.

I can tell him "Other people have friends that call them sometimes."
He says, "I have lots of friends, they don't call me because they don't have my phone number."

I tell him, "Other people make SURE to get their friends' phone numbers because they want to call them."
He says, "they probably forgot."

I say, "people don't forget to do that."

This is how I have to convince him that there is a NEED to change. If you see me doing this, you will think I am a cruel mother pointing out to my son so obviously that he has no friends. If I don't do this, you will think I am a horrible and neglectful mother who cannot find SOME way to change my child's behavior.

There is no way for the mother of a child with high functioning autism to look good. No matter how I handle it, YOU will think that there is SOME trick you have that would CURE the autism and make it all better. I promise you, there isn't.

So, what do I think about my son not being allowed to participate in things because of his behavior? (they also won't move him up a grade in school using his behavior as an excuse -- thus we homeschool. You will think that it's homeschooling that makes him weird. You are wrong. He actually received his diagnosis before he was EVER homeschooled. And he learns FAST. You have never met a child who learns so quickly. No, your nephew is not like that. No, he isn't.)

I don't know what to think. I wish people understood his disability and were willing to make a FEW adjustments (letting me be on hand to explain things to him in a way he understands, for instance) to accomodate him. I wish people understood ME and that we're not neglectful parents, we're just taking part in a slow process of improvement. (There is every reason to believe that he is capable of marrying and holding down a job and living on his own IF he gets to practice all these rules that he thinks there is no need for. Children with undiagnosed high functioning autism tend to live in their parent's basements for decades because they rub EVERYONE the wrong way and can't get more than one date or hold down a job.)

Also, I understand that people don't want to work with an unpredictable and unpleasant child. Why would you? Even the schools despise him and they are paid to tolerate all kinds of kids. I can't tell people, "do this and this and he'll be fine." because I never know if he'll be fine.

I don't disclose to everyone that he has autism because we've been advised by the experts not to. They say, if he knows we're telling everyone he has autism, he won't put in the work he needs to do to change and adjust to the world. He'll use the excuse also. He'll start telling people, "Oh, I have autism" instead of trying to adjust. Then he'll live in our basement alone for the rest of his life.

So, part of me says, "Geez, I know that other kids with disabilities get to do stuff that takes a LOT more accomodation than my child, how come no one is willing to just work with him the littlest bit?" and another part of me says, "Yeah, I get it. There's a group of typical children who want to do a typical thing and not have my weirdy son messing it all up with his unpredicability." Also, "I haven't told anyone he has autism and few people know anything about high functioning autism so they don't see it and wouldn't know what to do even if I did tell them." I get that he's not pleasant. I get that he's frustrating. I get that there is no magic cure for him. I get that he makes you crazy. He makes me crazy often, too.

And why should you have to put up with him? Why would you see any benefit to doing that? It's like I'm telling you that you need to talk backwards.