Source: http://pediatrics.aappublications.org/content/129/2/e305.abstract?sid=17b1810d-43f8-4c01-aff1-94a64941a94b

Abstract

OBJECTIVE: This study aimed to investigate descriptive characteristics and co-occurring neurodevelopmental and psychiatric conditions in young children, children, and adolescents with a current and consistent or past but not current (PBNC) diagnosis of autism spectrum disorder (ASD) and how such characteristics and conditions may engender a change in diagnosis of an ASD.

Most of the time, everyone sides with the parent in a unanimous cry of outrage in the complete and total mistreatment of their child. Most of the time, that comes with very little information as the schools are often unable to comment on the situation, same with any enforcement personnel. This means that we only have the parent’s information to go on.

I won’t argue however that most of the time, that’s all we really need. What’s wrong is wrong.

Still though, this creates a situation in society that basically ties the hands of those teachers and care givers should they truly have the right or need to handle a situation where those circumstances arise.

Dear care givers

What I’m trying to say is, if you care for my child and he is in danger of hurting himself or someone else, please do restrain him. Please do send him for a time out, even to some other room if need be.

I won’t sue. I won’t call the media.

If my son hurts himself… in a private area… please do check it out. He’s hurt, he needs attention, give it to him. I understand that it’s not sexual, I understand that you have his and my best interests at heart.

I won’t sue. I won’t call the media.

But be warned

If my trust is abused or my understanding is taken advantage of, I will hunt down the person and make sure that no one finds them until skyscrapers start going up in remote parts of northern Canada.

My children are that important to me… but they’re also that important to me that I don’t want to see his care givers afraid to touch them for fear of me being the type of parent to make it a national news story.

The reality

The reality is that when my son completely loses it and hurts himself or his little brother, or is breaking things, or is just generally out of control… I will put him in his room. I will drag him there if I have to.

And I fully understand… no, I expect… that anyone else that I have entrusted with the responsibility of watching him would do the same.

I won’t call it barbarism when someone does the exact same thing that I would have done in the same situation. I won’t give my story to the first reporter that will listen to me.

The reality is that I understand how it’s come to this but I also feel disappointed that it has.

Somewhere, lines have blurred… and it’s often due to those who take advantage of the situation or react too harshly to the situation. Those care givers who go overboard and actually hit a child, or do something else that is completely inappropriate.

There’s also the “not knowing” that we must face… since our children aren’t great at relaying the details, we have to just hope that the teacher’s telling the truth. And if they did do something wrong, what would be the likelihood of that?

In a perfect society, every person that comes into contact with a child would be certified do-gooders with halos and wings that could never do any harm… but there is no perfect society and that leaves us skeptical and scared.

But I refuse to hand cuff those who care for my children by never letting them do what I would do myself to ensure their safety.

If I wouldn’t do it, damn straight I won’t let them do it. But if I would take an action, such as dragging my kid, kicking and screaming to a time out… then I fully support his teachers/care givers doing the same.

I know a lot of parents won’t agree with me, or simply aren’t willing to let “strangers” do those sorts of things… I can understand that. But it is how I am and how I feel about it. If I don’t trust the person that my son is with, he won’t be with that person. It’s that simple.

Just Believe

The Premise

Dustin Hoffman plays the magical being, Mr. Magorium… and by magical, I mean that he’s 243 years old and brings toys to life. His assistant is played by Natalie Portman who is struggling to find herself. She tells Mr. Magorium that she “feels stuck” and he responds by giving her the Congreve Cube… uh… a block of wood.

As you get accustomed to the magical world within the store, Mr. Magorium throws in a shocker in announcing that he has to leave… effectively, he’s going to die tomorrow.

This leaves her with a store that she’s not sure she wants, an accountant that hasn’t even seen a toy in years and a fun little boy sidekick type that is in the peak of his magic believing life.

The Magic

It’s a wonderfully fun movie for the kids… Cameron was mesmerized through most of it but did get bored a few times as the discussions about life would take away from the store and the magic.

But that was the thing, I think, in that this movie held so much more magic for the parents than it did for the children. I think that is what holds it back from being a classic like Oz or Willy Wonka but it’s also what makes it so important for parents to watch.

You see, as Mr. Magorium “leaves” and his assistant has to figure out her life, the store begins to lose it’s colour, the toys stop coming to life… essentially, it dies. It becomes a dark, dreary place that no one wants to step foot into.

It’s not until Molly (Natalie Portman’s character) realizes what it is that she has to do that everything comes back to life. She believes in the magic, she believes in the toys, she believes in the store and most of all, she believes in herself again… and the Congreve Cube begins to move.

It’s her belief that causes the cube to move, it’s her belief that brings back the colour and it’s her belief that leads the viewer to believe that, providing she always does believe, she too will live to be over 240 years old.

The Lesson

As Molly dances around the store and the toys begin to move, dance and fly, the colours come back, the music builds and builds and the children come running in the front door to see all of the magic, my son sat on the couch, hugging the couch cushion with a huge smile on his face.

I love to see him being so happy that he can hardly contain it. It’s a rarity.

So I decided to see if Cameron got it:

Me: So what did she have to do to make the magic come back?

Cameron: …  believe?

Me: Right! …  And what did she have to believe in?

Cameron: … magic?

Me: Nope… herself! She had to believe in herself!

Cameron: believe in herself?

Me: Yes, that means that she had to be happy being her. She had to know that she was smart and a good person. She had to know how awesome she is!

Cameron: and that makes the magic?

Me: Exactly. If you believe in yourself, the magic will happen.

While I don’t know just how much of that will stay with him, I know that it will stay with me. And I hope it stays with every parent that watches the movie.

Never stop believing in make believe. Never stop believing in silly, childish, wild and wacky fun. Never stop believing in magic. And most importantly, never stop believing in yourself.

It’s this that I will always remind my boys and will always do my utmost best to remind myself.

Autism or not, if you believe in yourself, the magic will happen.

The usual problem

The problem that most autism parents face is isolation… that feeling you get when your child is never invited to birthday parties. The parent feels this through osmosis, meaning, they feel isolated because their child feels isolated. They know that the question is coming one day: “Mom/Dad, how come I never get invited to birthday parties?”

It’s a terrible feeling, and not just because it is saddening, but it’s also maddening. Because deep down, you know the reason. In fact, in a way, you probably don’t even want your child to go to those birthday parties. So loud, so bright, so much excitement, socializing, awkwardness…. yes, for many children with autism, it’s far more a nightmare than a dream and yet… the child doesn’t know that. They just know, or one day will know, that they are missing out on a world of fun.

And so, as a parent, you are left with a twisted up stomach, knowing your child feels alone, knowing your child feels like they’re always left behind, knowing that one day your child will ask you and knowing that one day, you’ll have to answer.

The unusual problem

In my son’s (Cameron) case, we don’t have the usual problem because of the great school that he attends. He is in a “regular school” but they have dedicated 5 classrooms to children with autism, which means that his friends all have autism as well.

So when his friends have a birthday party, he’s invited. Or when he has a birthday party, he has friends to invite. It’s actually pretty awesome in many respects because, not only are they not missing out, but they’re gaining those valuable party skills that they’ll need in college (hey, I can dream, can’t I?).

Here’s the thing… even though the other kids in all of those 5 classes have autism, not all of their parents really “get it”. What I mean is, they don’t realize how lucky they are to have their kids going to birthday parties.

The problem that I face, is whether or not to invite certain other autism children from those classrooms. They’re the ones that easily meltdown, easily get aggressive, have little verbal ability…  you have to understand, they’re great kids and I love to see them when I stop in at the school, but it’s obvious that they will need some extra help and attention at a place like a birthday party.

What I expect, and this is probably where I am going wrong, is that their parents would understand this and do something as simple as… stick around. You know, go to the party and be there with their child to help out should a meltdown occur, to say to me “oh, don’t do that because my child doesn’t like that” or “my child can’t eat that”…  stuff like that. I don’t mind changing things up on the fly, I’m an autism parent too!

But they don’t do that. They leave.

And to be fair, I’m not talking about the parents who honestly and truly have something they need to do, like work. But the ones who see it as a break…. a chance to be free.

It’s not a chance to be free. It’s a chance to learn valuable socialization skills. It’s a chance to do something that many other children with autism can not. And this parent is taking it for granted. They’re taking advantage of it.

What to do?

So at my son’s next birthday party, I have a choice to make.

Do I invite that child even though I know that things could be… well, let’s just say, more of a struggle?

Should the child miss out because of their parent? Should the child be punished? Or, would it be more of a punishment to actually invite the child to a place that he/she won’t be able to cope with? I mean, if I don’t invite the child, the child stays home with their parents, where they’re comfortable and at ease, right?

I’m not really sure what the right answer is… all I know is that it would be so much easier if the parent just took it more seriously. If the parent would see it for what it is.

To those parents:

Don’t make me have to choose whether or not to invite your child just because you can’t be bothered to stick around.

Birthday parties aren’t the same for you or I, compared to “other parents”. Not for the person throwing the party nor for the parent of the child that is invited.

I’m sorry that it’s not happy, fun, break time for you like it is for other parents. But that doesn’t mean that it can’t be a really great time.

You need to step up.

You have to realize that this is a boy who really has no concept of the value of money except that we parents make it and use it to buy them stuff. He doesn’t really get that some things can cost more than others or that sometimes we just don’t have the money for what he wants.

Award winner for Ambition

So what did he say?

“Stuff that we need shouldn’t cost anything because we have to have it and that way, we’d have more money for the stuff we want.”

Simple right? Makes sense too. I mean, you start to think about all of the homeless people, the hungry people… the people who need basic necessities that simply can’t get it because they have no money. They should have these things because they need these things. We all should.

The things we want, now that’s what we need to work for. That’s what we need to earn.

The things we need, we deserve… simply by being human. The things we want, we have to work hard to deserve.

So it stands to reason that, if society could be revamped, from the ground up, the things we all need should be made available to everyone while the things we want would cost money.

The problem, as my wife and I saw it, is that most people don’t really know what they need. For example, most people think they need their cell phone. They don’t.

Many women think they need a good hair-do and make up while many men think they need access to sports or a fast car/big truck. They don’t.

It’s a bit of a warped mentality that we’ve all become accustomed to.

But I think that a system as my son envisions it, would really help to put things into perspective and firmly place that dividing line between needs and wants for us.

Another problem would be that those people that provide the shelter, food and other basic needs need to be compensated for their hard work…  but with enough thought, I’m sure that could be worked out.

Anyway, I’m not trying to work out the foundation for a new society, I’m just demonstrating how sometimes the most simple, yet profound, thoughts can really get you thinking.

And it came from, of all the unlikeliest of places, my 6 year old son who really has no grasp of needs vs wants nor that of money/value on things.

Or at least, I thought he didn’t.

Mike is 12 and is entering puberty, and he is noticing the changes in his body. We too have noticed how he is starting to sprout pubic hair and has begun to notice girls. My wife laughed hysterically when, upon discovering said pubic hair, he exclaimed, “I’m turning into a sasquatch!!” In the past six months we have noticed that he has asked more than one ‘girl’ to kiss him, including his married after-school teacher among them. So yes, we are kind of freaking out about puberty.

Perhaps we were unglued because his two older brothers were (comparatively) less demonstrative in noticing the fairer sex upon entering puberty. Or maybe because autism did not give Mike a ‘filter’ that neurotypical children have when expressing themselves; he just says what’s on his mind. As parents of an autistic child, any verbal expression (appropriate or not) is like gold; we just want to keep hearing it. So we have begun weaving social stories about girls and kissing and appropriate behavior. Personally, I hope this works for at least a little while; I don’t think I’m ready to give Mike ‘The Talk’.

Puberty, in and of itself, may have unintended effects on his developing brain and cognitive ability. Research has shown that there is an association between fetal testosterone and autistic traits. To many in the research community, it is not simply a coincidence that a diagnosis of autism is made four times more often in boys than in girls. To this end, I worry about what effect the influx of testosterone during puberty will have on Mike. Could it ‘worsen’ his autistic traits? Could it blunt his cognitive development? Could it make him more aggressive?

These are certainly possibilities that tend to keep us up at night, but are comforted in part by knowing that Mike is learning to be empathetic, and has a degree of self-awareness. Just like noticing the physical changes in his body, he knows when he becomes angry with others, and is apologetic and often embarrassed by it. He readily takes note of babies and younger children who are crying and wants to “make them happy again.” He has initiated greeting our neighbors, and has asked to play with some of the neighborhood kids.

Big change.

Not all of change is bad per se; his verbal and comprehension skills have markedly improved in school and his brief chats with us have slowly progressed to often conversational proportions. His teacher confided that she is thinking of submitting him for consideration for a self-contained class in a General Ed school (otherwise known as a satellite program). Mike has shown he has the capacity to do more academic school work, as opposed to being vocationally-inclined only. With this thrilling possibility brings change, and change always brings the possibility of failure and regression. Mike has thrived and become transformed at his current (out of district) school for the past three years after languishing in-district as the Special Ed department struggled to develop its resources and plans. The thought of returning him to a similar setting is tempering our enthusiasm but reinforces our feeling as parents that our son has more possibilities open to him now. I have quietly begun to think that Mike is inching toward the higher-functioning end of the autism spectrum.

His desire to someday become a paleontologist/chef/zoo keeper/book writer is not so far-fetched after all. Big change indeed.

It seems Mike is poised and ready for bigger and better things, despite all the pitfalls inherent with puberty. My little boy is growing up. I hope his mom and I are ready.

The problem with this is that my son Cameron is especially affected… since a sudden loud voice like that can send him running to hide under some blankets.

At least when that happens though, it’s instant. I’m done, he’s done… we go about our day. No worries.

The real issues come into play when it’s not done and over in an instant.

A positive is a negative

Cameron shows some pretty amazing resilience sometimes when it comes to being able to handle himself. Yesterday was a perfect example of this.

My boys were invited to a birthday party at an indoor playground where kids were free to just go anywhere and do anything. There were games all around, flashing lights and a huge network of netting and tubes to climb and go through.

A child’s paradise!

Cameron is in green

When we arrived the place was full which meant the entire place was just a wall of noise. An occasional crying child somewhere in the distance, lots of screaming and a bit of laughing mixed in.

Cameron and his little brother jumped right in and played just as any child should… it was quite nice to see. They had a lot of fun.

But I knew, I just knew that this was going to be too much. It was too much for me and I wasn’t right in the middle of it.

See, Cameron won’t just have a meltdown right in the middle of the place… instead, he’ll store all that pent up energy until he’s back home where he feels safe.

So, even though he can have a great time and handle himself quite well for quite some time… it comes with a price.

Solving the mystery

At first, this presented quite the challenge for us as parents as we’d have to figure out why our little guy was completely out of control for a day or two. To us, it would seem completely random that he’d just be really moody, extremely hyper and very much unwilling to listen to us or do the things we asked of him.

But it wasn’t random. It was actually very much a cause and effect situation (which most things are), where the effect was hyperactivity, irritability and lack of control… and the cause was over stimulation that no one had noticed.

What would happen is that my son would go to school and they’d have an assembly, or go on a field trip, or a party like the one I just described… something somewhere would happen and even though my son had a wonderful time and everyone thought he was just the most perfect little boy… there was actually a time bomb building up pressure, waiting to get home.

The biggest thing is, it’s entirely up to us as parents to solve that sort of thing too because no one else will ever see it. They only see the boy that holds it all together during the day.

Over time, I’ve come to recognize the clues though. For example, at that birthday party, when it came time for everyone to sit and have cake, all of the kids were excited.. but only Cameron bounced in his seat. Literally.

He had so much pent up energy in him, beyond what the other kids had, that he quite literally could not keep his butt on his seat. And while he was still quite happy and having fun, I knew that if he can’t keep his butt on his seat even after I ask him too, that it’s a sensory problem that’s been building up.

Something he just has to do for himself

This is one of those cases where, we as parents, could decide to just not go to those places so that we don’t have to deal with the after effects but that’s not very fair to him. He loves going to those places and doing those things.

We could read every book we have and talk to every professional we can find and try to set up systems and procedures to deal with the after effects at home in a constructive way.

But ultimately, this is something that he has to learn to deal with. I can help to guide him as best I can, help to calm him, focus his energies somewhere… but this is something that is likely to stay with him for the rest of his life.. unlike me.

And to be honest, I think he’s starting to get it. When he gets home, he’s still moody and hyper but he’s learning to take time for himself to go off and make believe something on his own. His little brother gets mad sometimes that he can’t go be with his brother but it’s obvious that it has to be that way.

When he’s given his space and allowed to get that energy out through pretending his favorite video games, pokemon or bey blade battles… what ever it is he needs to envision… it works for him. At least usually.

It’s great that he’s able to do that. And it’s even greater that he’s able to put it all aside in the moment and be “just one of the kids” when there is fun to be had.

It’s been hard for us to figure out and to deal with… I’m sure it’s been even harder for him… and we’ll always get people asking questions about it as it’s not quite ‘normal’… even by autism standards… but it is what it is and it works for us.

As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.

Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.

You get the idea.

So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.

As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.

This month, we’re taking the first steps, which seem so very trivial and yet, so huge.

First of all, we’re encouraging them to do some things on their own.. they can both get dressed on their own now, which is a great first step. Now we’re pushing forward with having them brush their own teeth, dry themselves after a bath and little things like that.

But now, the big one… getting their own juice!

This is a very scary one for one simple reason… one wrong step and it’s sticky, juicy, splash city all over the kitchen!

So what we did was visit the local dollar store and pick up a smaller jug. It has a smaller handle and is smaller over all.

This makes it a lot less heavy and much easier to get their little hands around.

Also, we moved their cups from being up in the cup/glass cupboard to down into the gluten free food cupboard under the counter. This way, they can go and get themselves their little plastic cups any time they want.

The pouring is still a pretty scary task but it is now so much more manageable for them and they feel so proud each time. Often, when they ask for juice and I give them the go ahead, one of them will rush off to pour glasses of juice for both of them because they’re so eager to be such big boys.

This is one little step closer to me no longer being a servant and one huge step closer to them being able to do things for themselves.

It’s also worth noting that Cameron is 6.5 years old while Tyler just turned 4…. and while Cameron is doing grade 2 school work while he’s only in grade 1… when it comes to the motor skills required to pour juice, because of how autism affects him, they’re actually pretty even skilled.

In a way, I kind of feel bad that he’s learning the things his little brother learns at the same time, when it comes to tasks such as this but at the same time, I do like that they get to learn them together and gain an even closer bond that comes with the success of independence.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.

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Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”