Both.

"Autism is not a shame. It is a way of sensing and processing the world that looks different from yours and mine. And I have come to realize the world is a better, richer, smarter place for the creative and creating minds of autistic individuals."  -me, August 2012

I wrote these words in my first public blog post about autism. I still believe everything I wrote that day, sort of.

Our world is indeed a richer and smarter place because of autism. Without a doubt, we have inventions and businesses and art and all sorts of things because of their minds that can do things we neurotypicals aren't capable of doing.

On the other hand, we have had and will continue to have thousands of people who can't reach their potential, are misunderstood, are mistreated, or live as handicapped individuals - and sometimes all of the above. Any of the noteworthy autism-parent writers will tell you that labels like high-functioning and low-functioning are insulting and irrelevant. I get that; Henry's high-functioning until he's not. I mean, he functions awfully darn well until 5 other kids are playing with the train table at his Grammy and Papa's house, and then all bets are off. Then, I wouldn't blame anyone observing who would whisper, "He's high-functioning? Are you sure?"

But the fact remains that Henry talks. Henry doesn't bang his head incessantly in frustration because his mouth can't tell us what he's feeling. Henry, at 5, can now tell us he's lonely, frustrated, angry, sad or tired and is even beginning to explain why. ("Why?" is the hardest question for an autistic person to answer.)

The fact remains that Henry is capable of feeding himself, dressing himself, bathing himself. 

The fact remains that Henry doesn't spend much of his day having seizures or suffering from any of the other myriad of ailments that often accompany autism.

Henry has challenges; therefore, Keith and I have challenges. But I would be an insulting buffoon if I pretended all autistic people - and their parents, by extension - have the same experience. While I appreciate all that autism has brought to the world, and I maintain it is not shameful, I can't deny that it causes much pain. 

Autism Daddy wrote this in November:

" […] I feel that I can hate my son's autism and yet still love my son […]
In my opinion, it's not one or the other."

I'm relieved and grateful to him, who has a huge following, for writing these honest words, for I feel the same way. I love my son with all that is in me, and I am in awe of his gifts, but some days I hate autism and it drives me to swear and throw and rage and dissolve. Just flat-out dissolve.

It's not an either/or proposition. The newly christened autism mom of 2012 just didn't know that yet.

I have to believe - no, I know and have seen - this is the case for any disability or illness or syndrome. Blessings, yes, but also pain. I believe, too, it would be the case if my son was neurotypical. Surely, he would have some vice - even an undesirable trait of mine, and I would hate to see it in him. 

Everything seemed so simple that day Keith and I came home from the meeting with the psychologist. I wrapped Henry in a hug, and I told our friend Libby something naive and optimistic like, "Well, he does have autism, but we're gonna continue the therapy we're doing and it's going to be fine."

I was right, but only in the most elementary way. I couldn't have foreseen the paths our lives would take. Nothing is ever so simple, including my thoughts about this word that now defines us and rolls off my tongue so easily, sometimes too easily.

Autism. My son has autism. I so wanted it not to define us; of course it defines us. It is not the only definition, but it is an important one. Maybe that's why, more than 2 years later, I'm still figuring it out.