29 Marbles

A consistent theme in my writing here is that parenting an autistic child is, first and foremost, nothing more than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent.

In response to Steve D’s call to revisit a favorite post I am reposting Enjoying the Scenery, which I originally posted in February 2006. I don’t know if this is my absolute favorite, but it is right there at the top.

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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?

Here is a quote from George Leonard’s The Way of Aikido that struck a chord with me as I’ve been thinking about parenting and autism.

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 t spend most of your time on the plateau. [T]o join the on 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.

Another way of looking at it comes from a saying I heard a while back, but can’t remember where:

A truly happy person enjoys the scenery on a detour

How’s the scenery on your detour?

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Two years later, I can tell you that the scenery is beautiful on this detour of ours. The road does get a bit rough at times, and I have to keep my eye on the road to keep from driving off, but that would be true on any other road as well.

A couple of weeks ago, I was asked to give a short talk on autism. Here’s a rough transcript of what I said.

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? (general murmur of agreement from the small audience)

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 I learned.

If the child study team that gave us the diagnosis had asked 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 17, 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.

If you are an autism parent, what are your thoughts on this? If your autistic adult (or nearly adult) son or daughter were offered and accepted a cure, how would you feel? How would you feel if they were offered a cure and declined?

(If this topic sounds familiar, it is because this question - and some of my thoughts on the question - were the subject of one of the earliest posts on this blog.)

When was the last time you changed your mind about something related to autism? If you read back through my nearly three years of posts here you’ll see that my own thoughts on the matter have fluctuated quite a bit. (Good thing I’m not a politician!). It’s not that I have trouble making up my mind, it’s just that I seem to learn something new everyday that influences my opinions.

In a post entitled Nestor Lopez-Duran Ph.D on Autism, Science and Faith-Based Advocacy, Autism dad Harold Doherty, author of Facing Autism in New Brunswick, references the following comments from Lopez-Duran:

what I believe doesn’t really matter, because “beliefs” rapidly turn into blind faith, even amongst scientists. Instead, good science only occurs when positions are flexible and reflective only of the status of the research (data) at any given time

Nestor L. Lopez-Duran Ph.D., Translating Autism, About Science and faith-based advocacy

Doherty goes on to provide his own thoughts:

Many issues such as the mercury-autism, vaccine-autism, genetics-environment arguments in autism discussions purport to revolve around science but often depart from the science and embrace the faith-based advocacy referenced by Dr. Lopez-Duran. To the great detriment of anyone with an interest in understanding the nature and causes of autism.

It is very difficult to maintain this kind of cold objectivity when the subject in question is your own child. But if we, as a society, ever want to get anywhere on these questions (assuming there is somewhere to get to), this is an important lesson to keep in mind.

On a completely separate note, I will be taking a short break from posting here. You may still, however, see my name pop up in comments of other blogs. I plan to return on April 2, not coincidentally World Autism Awareness Day.

I’ve written about autism and law enforcement before, but in a time when it is becoming increasingly dangerous to be different it is worth mentioning again. The catalyst for this particular post is the NY Times article Helping Police Officers Understand Autism, which talks about the ongoing efforts of Dennis Debbaudt (who is an autism dad and, as it turns out, also provided the inspiration for my previous post on the topic).

Some key points from the article:

• People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
• [W]hen Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
• Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials. He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him.
• “We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
• A bill cosponsored by [NJ] State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.

That last bullet sounds like a good idea that should be spread across the country to every state. (I’m going to see what, if anything, is being done here in Missouri.)

If you are the parent or caregiver of an autistic person, or if you work in law enforcement, you owe it to your self to check out Debbaudt’s sites: Autism Risk and Safety Management and Police and Autism - Avoiding Unfortunate Situations.

In US politics, we’ve got Republicans and Democrats, also known as the Conservatives and the Liberals. (Please feel free to substitute the two main political parties from your country if you are not from the US.) I don’t know if the following is accurate, but I remember hearing it somewhere in the seemingly constant barrage of US election year news: 30% of the population is Republican, 30% Democrat, and 40% Independent. Kind of makes sense if you think about it in terms of the “bell curve” and normal distributions in a population.

I’ve come to think that the same may hold true in the world of autism ideology. I use the term ideology quite deliberately here. From dictionary.com, ideology is defined as:

• the body of doctrine, myth, belief, etc., that guides an individual, social movement, institution, class, or large group
• such a body of doctrine, myth, etc., with reference to some political and social plan along with the devices for putting it into operation

On the one hand, there is the ideology of neurodiversity, defined on wikipedia as:

…an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.^[1] The concept of neurodiversity is embraced by some autistic individuals and people with related conditions, who believe that autism is not a disorder, but a part of their identity, so that curing autistic people would be the same as destroying their original personalities.

On the other hand there is the ideology that believes that autism is indeed a disorder, an abnormality in development caused by various environmental insults to a fetus or young child that must be cured in those that are currently affected and prevented in the future. The most commonly blamed environmental cause is mercury in the form of the thimerosol preservative used in vaccines, and more generally the large number of vaccines now on the vaccination schedule for young children. (The term “curebie” is sometimes used to describe this position. Although there is not an official “curebie” site like there is for the neurodiversity movement, check out The Age of Autism for more info on this position.)

Just like in politics these two “parties” have within them a broad range of beliefs, from the extreme (”all autism is mercury poisoning” and “society should accept and accommodate everyone, no matter how different”) to the moderate (”we need to make society aware of the special needs of our autistic kids - and adults - and help those kids and adults make their way in the society to which they belong”). And, again like in politics, you have that overlapping area where the moderates of the opposing parties seem to be more like each other than the extreme element of their own party. (You may have noticed that I only gave one example of a moderate view, instead of separate ones for each party.) It is in this middle, the meeting point between the moderates of the two parties that you find the independents.

If you’ve read this blog for a while, you know that I fall somewhat in the middle, though I lean a bit more toward the neurodiversity side. But sometimes I get very frustrated at the whole discussion, the absolute statements from both parties that leave no room for deviation from the party line. I believe that this can be dangerous in politics, I also believe it to be dangerous in our efforts to understand autism and its affects on society. And at times, I feel like just dropping out of the discussion altogether because it just seems to be the same things over and over again.

But then I’ll come across something like …there of necessity will be much arguing from Dave Snowden of Cognitive Edge that makes me remember why I continue to write here:

If something matters, it is worth arguing about; consensus is for the ordinary and inconsequential things of life. Of course it does need good [wo]men if argument is not to degenerate into bitter polemic. Exploring ideas, supporting a position you do not necessarily believe in to test an argument, taking a contrary view for the sake of argument are all mechanisms by which human knowledge can advance.

I have seen the discussion about autism “degenerate into bitter polemic” all too often, and would like to think that I am one of the “good men” that help advance our collective knowledge about autism and what to do about it. I’m not much for New Year’s resolutions, but for this year I resolve to continue the discussion, stir the pot, and keep the arguments as honest as I can.

Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.

Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God’s Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.

Here’s how Ginger describes the series:

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The series includes, as Ginger mentions, six parts:

The Least of These - In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

Those with Autism - What Matthew 25 means to you whose autism has allowed you to be mistreated is profound. It means that not only does The God of the Universe see what happens to you, He stands behind you at all times taking careful note of all your interactions with others. He records who victimizes you, who ignores you and who works their butt off to get to know you give you what you need.

Parents of Autistic Children - Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Friends and Family - It is their innocence and vulnerability that God stands behinds and uses to judge those who come into their sphere of influence. It is precisely because they are so easy to dismiss and mistreat, that God watches closely to see which of us have extracted ourselves from our own self-centeredness and selfish ambitions to notice someone who is need and to bear their burden with them.

Those in Power over Those with Autism - If you have taken responsibility for any part of the life of someone with autism, or even if that responsibility has been thrust upon you, take this time to measure yourself. Have you lived up to the responsibilities that you have been given to the innocent and vulnerable lives that Jesus has chosen to represent Him for the purposes of His judgment in his absence?

For All of Us Who Have Failed in Our Duty - When those of us with autistic people in our lives take a hard, honest look at ourselves, we realize the question is not have we failed them, it is how often and how big have we failed them.

As fellow autism dad Wade Rankin says in his post about Ginger’s series, “For anyone who has an interest in the spiritual side of this autism thing, or who may have questions about reconciling the notion of a benevolent God with the autism epidemic, it makes for good reading.” Make sure you check out the comments discussion between Ginger and Jonathon for even more on the latter.

Last summer 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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