Just a plain, ordinary, loving, proud parent

I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child.

Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.

It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:

“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”

“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”

“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”

“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”

“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.

A meditation on censorship

The following meditation on censorship comes from 365 Tao (June 13). It’s been on my mind lately, and Kristina Chew’s recent post The R Word and Not So Nice Language has prompted me to share.

Emperors uphold censorship,
But extreme repression leads to extreme reaction.
Individualists believe in freedom,
But extreme expression leads to extreme reaction.

The challenge, of course, is learning how to live and act in between these two extremes, and how to deal with those who inhabit the extremes.

Some thoughts on advocacy

In our society today, autistic children and adults are publicly represented almost exclusively by non-autistic advocates; sometimes parents or other friends/family, sometimes medical professionals, sometimes others with their own particular reasons. There are, of course, an increasing number of autistic autism advocates, but they have a hard time gaining acceptance as “legitimate” advocates.

In fact, there are several bloggers and commentators who decry the fact that the most vocal autistic autism advocates are those with Asperger’s Syndrome, and that these “high-functioning” autistics can’t (don’t) speak for those with classical (or “low-functioning”) autism. Which brought to mind something I read a couple of months ago in Richard Farson’s book Management of the Absurd:

Suppose, for example, I were to post this question: “If you were asked to predict the group in our society that is most likely to mount a liberation effort to end its oppression, would you have greater probability of success by picking the group for which you feel most sorry, or the one for which you feel least sorry?”

If you employed the unconventional, paradoxical approach, you would have picked the group for which you feel least sorry. Liberation movements usually arise from groups thought at the the time to be perfectly content. That is why they so often have taken society by surprise. Earlier generations, for example, complacently saw Negroes as being happy in their place. Women, before the 1960’s, were thought to be on a pedestal, adored and provided for by men. And today, in spite of the efforts of child advocates to call attention to the often oppressive conditions of childhood, children remain in the public mind as carefree, fully protected, joyful in their innocence.

Next question: “From where is the leadership of those liberation movements most likely to come – from those most oppressed by the conditions or those least oppressed?”

If you said least oppressed, you’re beginning to get the idea. The leaders come from outside or from the margins of these groups, seldom from the most oppressed segments. African-Americans were most helped at first by white abolitionists. Gloria Steinem is hardly the most oppressed woman in America. Children are represented almost solely by adult advocates.

From this description it makes a certain amount of sense that those in the medical profession (psychology is part of the medical profession, right?) and parents were some of the earliest and most visible advocates, and even more sense that those considered “high-functioning” would lead the way for autistics themselves. What it doesn’t explain, though, is why medical professionals, parents, and others are so reluctant to include autistics in their advocacy activities.

In a later section of the book Farson also discusses the fact that, in general, the person or group most affected by a problem is in the best position to determine a solution to that problem. Experts (or, in management terms, consultants) may sometimes be needed to help, but it is the “afflicted” that know best what they need.

If anyone who doesn’t believe that autistics can act as autism advocates is reading this, I’d love to hear why you believe that. And why you think that parents, doctors, or other “experts” are better advocates for autistics than are other autistics.