Tag Archives: autism

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

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.

Autistic kids – and their parents – deserve to have fun, too

Many parents of children diagnosed as autistic spend a large majority – sometimes all – of their “free” time trying to make their child “more normal” or “less autistic”, and not enough time on letting their child just be a kid. This is also true – maybe more so – at school, where the focus is often a single-minded (dare I say, “autistic”) dedication to implementing an IEP.

Many IEPs are so focused on making kids normal that they deny kids the chance to be part of a normal environment. It is not uncommon, for example, for schools to take autistic students on “life skills” field trips to a grocery store or McDonald’s while their classmates take a trip to a museum or other entertaining – and educational – locale. Life is for living, and this is as true for our autistic children as it is for our non-autistic children.

In her book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities, autism parent and blogger Lisa Jo Rudy addresses these questions, that really fall into two distinct categories:

  1. Why should you “get out, explore, and have fun” with your autistic child?
  2. How do you do this?

The first two chapters of the book should be required reading for all parents of children who receive a diagnosis of autism, that’s how important her message is in answering the “why” question. If autistic kids are never given a chance to experience life, how will we – or they – ever know what they want from life?

Lisa spends the bulk of the book exploring the “how” of getting out. As the parent of an 18 year old autistic son who has gotten out there, explored, and had fun, I can say that she has done an excellent job compiling not only lists of possible activities, but the good and potential bad of each as well as tips on how to make sure the experiences are valuable ones.

What I most appreciated in the “how” section is that she doesn’t sugar coat anything. Far from being pessimistic about things, she is simply honest about what you are likely to experience. She also reminds us to be realistic in what we expect of our kids, and of those we interact with “out there”. Even though the “why” applies equally to all kids, the challenges of the “how” will vary. Autism is, after all, a spectrum, and the experiences parents will have when they “get out” will cover a wide spectrum as well.

Only parents can appreciate the challenges they will face with their own kids in trying to get out there. My only suggestion here is that you lean toward stretching your boundaries, and your kid’s, by trying something just a little bit harder than what you think you can do. You will find that this can be hard work, but you will also see that it is worth every ounce of sweat you put into it.

If you are the parent of a young – or not so young – autistic child, you should get and read this book. And give a copy to your child’s teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

Is there autism in heaven?

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

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.

Parenting is a journey, not a destination

Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

Consider this quote, from George Leonard’s The Way of Aikido:

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice. Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing to spend most of your time on the plateau. [T]o join the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Sounds a lot like parenting, doesn’t it?

Take the time to learn from your kids

I have had a lot of teachers throughout my life. Some taught me because they were paid to, some because they were supposed to, and some because they wanted to. Many of the best teachers in my life, though, had no idea that they were teaching me. (Or, perhaps more accurately, that I was learning from them.)

At the top of this list of unintentional teachers are kids, especially my own.

When the relationship between parents and their kids is discussed, “parent as teacher” is a common interpretation. There is no doubt that parents need to teach their children. But if we only see ouselves as teachers, whether it is because we are supposed to or because we really want to, we are missing out on some of the greatest learning opportunities we will ever be given the chance to experience.

This is especially true if your kids are different from you, or different from what you expected them to be. For example, if you are a “jock” and your kid a “geek” ( or vice versa). Or your kid is disabled and you’re not.

If you are a parent, take the time to learn from your kids. You’ll be amazed at what they can teach you.

Make up your own mind about autism

Every now and then when I’m out with friends, or introducing myself to someone new, the topic of conversation winds its way around to autism. Sometimes the person knows someone who has an autistic child/niece/nephew/etc, or maybe they have an autistic child themselves. Since I am the parent of an autistic son they ask me to help them understand autism, and their autistic relative, a little bit better.

There are many possible ways to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here). How about, there is no need to “treat” the autism, you just need to treat your child as a child; different, but still just a child.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations.

To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

If you are new to autism, because you have a newly diagnosed child or you are just curious, listen to what the extremists and fundamentalists have to say. Read the blogs and books of parents of children with autism and the books and blogs of autistic adults.

And then pay attention to your own instincts and make up your own mind.

Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best.

Not just for your autistic child, but for you. For your spouse. For your other children. There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

Sounds a lot like parenting, doesn’t it?

Autism Awareness Month 2011

Every year when April – otherwise known as Autism Awareness Month – rolls around, I ask myself, “Awareness? Awareness of what exactly?” In the past I have often forgotten my own advice and tried to find a “one-size-fits-all” answer to the question. (My advice: there is no such thing as one-size-fits-all for anything.) Some years I just bailed on the question altogether. Like last year, this year I’m going to focus on one aspect – a theme, if you will – of autism awareness.

A consistent theme throughout all the various incarnations of this blog, not to mention my life as the parent of an autistic son, has always been that parenting is parenting, no matter what kind of kid(s) you have. It seems fitting that I use that as my theme.

Everyone is different, of course. The challenge with autism is that autistic kids – and their parents – are different in a different way, a way that many people are not familiar with and – more importantly – not comfortable with.

So, for the next month I am going to revisit and repost some old articles and write a few new ones to build on this theme. I will also be looking around the web for others talking about the same theme. If I can make just one person more aware that parenting is parenting, even for those with autistic kids, I will consider my efforts a success.

Of course, I’m expecting to reach more people than that.

Different is the new normal (a mathematical view)

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Back in April I wrote a post titled Different is the new normal. In that article I looked at “normal” and “different” in the cultural sense; this is the primary context in which most people put this discussion. It occurred to me a week or so ago, though, that it would be interesting to see what this would look like from a mathematical perspective.

The first thing I think of when I hear “normal” is the normal distribution curve. So I thought, what if we put normal in the middle, and different on the ends to represent the current (and hopefully fading) view. And then, to represent different as the new normal, switch it up and put different in the middle and normal on the ends. So I started sketching out the diagrams to the right.

I played around with it a bit, mostly trying to figure out how to label the diagram. Using “normal” and “different” just didn’t seem right. I really like Seth Godin’s description of today’s normal as “factory work”, so I adopted that as “normal”. To split it into the ends, it made sense (to me, anyway) to label them as “blue collar” and “white collar”. Factory work is factory work, after all.

Labeling “different” was a bit more of a challenge. Though I like Seth’s idea of linchpins, it just didn’t seem to fit in this context. I did know that I wanted to use “artist”, as Seth describes them, as one end of different. Then I read Hacking Work and “hacker” became the obvious choice for the other end of different. But I was still stuck on how to describe “different”. Until, that is, I read The Art of Non-Conformity today.

Then it was obvious.

Some thoughts on Dads, IEPs, and PTOs

This is a repost of something I originally wrote in the summer of 2007. Three years old, but just as relevant now as it was then.

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Last summer (2006) in the post “Men must attend IEP meetings”, I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox’s quote:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that ‘men must attend meetings.’ [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at About.com:Autism

Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?

Fortunately, I’ve never had to endure this. The IEP teams we’ve worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I’ve had jobs that gave me the flexibility to attend.)

To be honest, I’ve had a more difficult time trying to be an involved father in the PTO’s of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking 😉 ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child. *

But I’m here to tell you – and I know a few guys out there who will back me up – that autism dads are here, and we care, and we’ll let our IEP teams know that we’re here and we care if they try to ignore or marginalize us.

On the subject of autism divorce, check out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.

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