Tag: Asperger’s Syndrome

Different – and normal – are in the eye of the beholder

~ g BRETT miller (he/him/his)

What does it mean to be normal? What does it mean to be different? These are big questions in any discussion about autism or other disabilities. The term “disabilities” itself begs this question, since a disability is defined based on “normal”.

I like what Kristin has to say on the matter (the emphasis is hers):

“Normal” is such a complicated word.

We each grow up with our own entrenched ideas of what normal is, which means, of course, there is no such thing. Yet the world loves to pretend like there is—if normal doesn’t exist, exactly, then at least there’s a perceived ideal normalcy that we should all strive for, or even pretend to have grasped….

There is no “normal”—at least not in a societal sense—and we need to stop pretending there is. We need to stop talking about it, observing the world through it, and assuming it as we report on and read the news.

Most of all, we actively need to teach our kids to identify the falacies embedded in “normal,” and see through to the other side…. We need to embrace rather than hide what makes us different. We need to prove to the world that what they see as “messed up” can be a very beautiful thing.

What I like even more is that Kristin is not talking about autism here, or any other disability for that matter. These are not questions limited to autism and autism awareness, they are questions for us as a whole.

Different, as Kristin says, is the new normal. Time to get used to it.

Take time to listen, and to learn their language

~ g BRETT miller (he/him/his)

Open and clear communications is one of the most important things between parents and their kids, and a lot of parents spend a lot of time trying to figure out how to do this. Read just about any book on how to improve your communications skills and you will find that one of the most important aspects of interpersonal communications is the ability to listen.

Unless, of course, you are reading a book about helping autistic people “learn to communicate”, in which case it is all about trying to get them to listen, and pay attention, to you; very rarely will those types of books try to help you, a non-autistic person, figure out how to listen to an autistic person.

In fact, the very definition of autism in the DSM-IV is based on, among other things, “qualitative impairments in communications.”  What the DSM is really saying is that autistics are autistic because they don’t communicate with non-autistic people in a way that non-autistic people can understand and they don’t understand the way non-autistics communicate.  Almost like they speak a different language.

As if communications is something that autistics can do on their own.

Communication is a two way street for parents and their kids. This doesn’t change just because a kid is autistic. In fact, it is even more important then, because in many qualitative ways, the parent and the child are speaking different languages.

Unfortunately, there is no Rosetta Stone to help out. But there are plenty of other parents, and plenty of autistic adults, who are willing to help you out.

Don’t ask me, ask him (about the autism C-word)

~ g BRETT miller (he/him/his) ~ 2 Comments

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by what I learned.

If the child study team that gave us the diagnosis had asked me that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”) But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make.

At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 20, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for out autistic kids, even if the path is a bit longer or rockier. It is, after all, their life to live.

Devote more time to your kid’s strengths than their shortcomings

~ g BRETT miller (he/him/his)

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent – any parent, for that matter – will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not.

But that doesn’t mean that is what we should be doing.

Normal people aren’t normal either

~ g BRETT miller (he/him/his) ~ 1 Comment

Set in the near future (30 years or so), Elizabeth Moon‘s novel The Speed of Dark is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision. As you might imagine, Lou gave quite a bit of consideration to what it means to be normal. (Even in the future, it seems, there is a desire to make people “normal”.)

I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are in the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.

And some of his thoughts based on a specific situation:

Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing in the aisle. I thought- he told us – that he was teaching us how normal people shop.

But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.

As parents we often spend a lot of time trying to help our kids to fit in, to be normal (even as we ask them, “If everyone was jumping off a bridge, would you jump too?”). Of course, this is often because our kids want to fit in. And there is nothing wrong with that.

But if you find yourself trying to get your kid – autistic or not – to fit in, to be more normal even if they don’t want to be, take a moment to ask yourself why you are doing it. And think about what it is that you are trying to get them to do. Is it something that you think Everybody is doing, when in fact Nobody really is?

Is there autism in heaven?

~ g BRETT miller (he/him/his) ~ 4 Comments

If there is indeed a heaven, and your autistic child goes there when he dies, will he still be autistic?

Over the years I’ve come to believe that asking someone this question about autism in heaven is one of the best ways to understand how they view autism. Even better than asking them whether they believe that autism needs to be cured, though of course there is probably some correlation between a person’s answers to these two questions.

I guess it really comes down to an even simpler question: Is there autism in heaven?

But it isn’t really that simple, is it? Because if you ask that, you also have to ask, “Is there deafness in heaven? How about blindness? Are schizophrenics still schizophrenic when they get to heaven? Are there wheelchairs in heaven?”

Obviously there are no “diseases” like diabetes, heart disease, cancer… in heaven, those are all physical things. So why would there be a need for wheelchairs. And blindness and deafness, those things are usually physical manifestation, so they shouldn’t be in heaven either, right?

But what would heaven be for someone who is blind here on earth? Or deaf? Or confined to a wheelchair. (Kind of gets you around to the question of what, exactly, is heaven, but I really don’t want to go there.)

Many years ago I heard a story on NPR‘s Morning Edition, Ben Mattlin’s commentary Valuing Life Whether Disabled or Not. It was, in fact, this story that first prompted my question about autism in heaven.

Commentator Ben Mattlin has been quadriplegic since birth. At the memorial service for a disabled friend who passed away, he came to realize the world needs to expand its definition of what it means to live a successful life, disability or not.

What caught my attention:

Are there no wheelchairs in heaven? I’m not buying it. For me, if there is a heaven, it’s not a place where I’ll be able to walk. It’s a place where it doesn’t matter if you can’t.

Is heaven a place where there is no autism? Or is it a place where it doesn’t matter if you are autistic?

Enjoying the scenery on your autism detour

~ g BRETT miller (he/him/his) ~ 1 Comment

If parenting is indeed a journey (as I wrote yesterday), parenting an autistic child is a detour from the path that a parent’s journey normally takes. Several years ago I heard the following (I wish I could remember the source):

A truly happy person enjoys the scenery on a detour.

Would I have chosen this detour at the beginning of the journey, if I’d been given the option? Probably not. The road has been rough at times and it has taken a little bit longer to get from way point to way point along the path.

But I’ve seen things, experienced things, that many parents will never even know are possible. I’ve learned things about myself, about others, and about my kids that I would never have otherwise learned.

I have to say that I’ve enjoyed the scenery on our detour. I encourage you to try to do the same.