DAN!, Neurodiversity, and Me

Warning: this one's LONG, folks. Lots to say today.

After being immersed in the world of autism for over five years now, I believe that I can divide that world into three rather distinct camps.

You have the DAN! folks, which we used to align ourselves with almost exclusively. If you haven't heard of it, DAN! stands for "Defeat Autism Now!" - and who doesn't want to do that? They even include an exclamation point because, hey...this is urgent! And of course it is. The sooner science can find some answers, the sooner these kids might have some chance at a full and meaningful life. In short, the DAN! folks focus on biomedical interventions: gluten-free/casein-free diets, vitamin and mineral supplements, chelation of heavy metals, and various other treatments designed to treat autism as a medical condition. You can find countless anecdotes from families who claim that their children have been completely cured of autism by using these methods. I am hopeful that those reports are true, and that these methods really are working for some kids. We spent a great deal of time, effort, and money to pursue various forms of testing and treatment along these lines, and did not see any appreciable change in Stephen. We did the diet (for over 3 months) and he got worse. We did testing for heavy metals (after months of struggling to get a urine sample) and we did chelate Stephen for lead. It's hard to tell if he became more verbal due to the chelation, or other behavioral therapies he was undergoing at the time. That's part of the problem with the DAN! folks - almost all kids are getting therapy at the same time they are undergoing biomedical treatments, and who's to say which is helping?

But, I digress.

So, you've got the DAN! group. Then you've got what I'd like to call the "middle-of-the-road-open-minded-but-intelligently-skeptical" group. Clever verbiage, no? That's where I'd place David and myself right now. Because of some things he uncovered while taking a histology course recently (both of us have biology degrees, just to provide some history) we now question the efficacy and accuracy of some of the biomedical interventions. So, while we still firmly believe that we want to investigate every possible avenue, we are less than impressed with the DAN! protocols at this point. I want to deal with this particular journey separately, and will do that another time.

Meanwhile, we find ourselves in that "middle" group...hoping always for new medical breakthroughs but doing our best to use good judgment, and more importantly, not expecting a miraculous cure because we feed Stephen crushed violets while he stands on one foot under a full moon. The DAN! protocols may not be quite that outlandish, but sometimes it feels pretty close.

That brings me to the newest camp - at least for THIS parent: the group of people who vehemently insist that autism is a NATURAL phenomenon, and that it is something to be celebrated...a place where joy can be found...autism isn't a disability, or a disease, or a problem. It just creates NEURODIVERSITY.

Now, before I get into this too far, let me make a couple of things crystal clear: there isn't a day that goes by that we don't experience some happiness, or even joy, with Stephen. Is it BECAUSE he has autism that we have those positive moments? No...emphatically no. We find those things IN SPITE OF his autism. Secondly, autism has become such a widespread, umbrella term for a mind boggling array of "spectrum disorders" that I wish the people in charge of such matters (whomever that might be) would change the classifications. My son's autism is classic in nature. He flaps his hands, he does not have conversations, he wears a diaper, he tantrums for often unknown reasons. There are kids (and adults) with HFA (high-functioning autism) and AS (Aspergers Syndrome) that live very functional lives, often with some idiosyncrasies or unique and different behaviors, but functional nonetheless. If people who live with HFA/AS want to consider themselves as adding to the neurodiversity of the world, I am happy and thrilled for them. They should enjoy their lives to the fullest and print up T-shirts that say, "I have HFA and I'm neurodiverse!"

But those same people, preaching the neurodiversity message, have absolutely no right to lump my son in with their "joy of autism" seminars, or their "autism is fun!" workshops. We don't belong there, and we refuse to sit back quietly and struggle to accept the ludicrous notion that Stephen's autism is something to celebrate and enjoy. Because, dear readers, let me tell you in no uncertain terms...THIS kind of autism is something to obliterate. It needs to be GONE from the face of the earth.

I have, I believe, been quite candid in describing some of the situations we have found ourselves in as far as Stephen's autism is concerned. In a moment, I'm going to completely take off the kid gloves...it may be uncomfortable to read, but there is a point here. First, let me share with you some quotes from and links to sites that wave the neurodiversity flag the highest. I have a bone to pick with some of these folks.

I have done a bit of skimming of a few sites that fall in this category...nothing that really got to me much. Until yesterday. I had five minutes to kill before I left the office, and I casually did a YouTube search for "autism." On the second page of results, I found a film entitled "Autism Every Day is a Doctored Film." http://www.youtube.com/watch?v=46LYd4Xe63Y Now, I have directed many friends and interested parties to the powerfully moving film "Autism Every Day," provided by the organization Autism Speaks, as a way of showing what life with an autistic child is really like. I wasn't able to watch the entire anti-AED film till later last night, but in reading the comments on YouTube I could see what the gist of it was. Here are a few quotes from the YouTuber's (christschool) description of his film:

"What Autism Speaks will offer you is hopelessness, pity, and research to find a cure for future generations of autistic people so we won't exist anymore. If you believe Autism Speaks will help your child right now, you are wrong."

"This video is strictly about how Autism Speaks funded a manipulated film and marketed it to the public for the sole purpose of stigmatizing autism and autistic children in order to raise funds for research that will eliminate autistic people. No other interpretation should be applied."

To the first quote I simply say...we are not trying to exterminate autistic people. We are trying to exterminate AUTISM. To think otherwise is delusional. I love and adore my son, but I want him to be cured.

And the second quote? The person who posted this film claims that the director, Lauren Thierry, instructed the families not to "do their hair, or vacuum" so as to emphasize the negative nature of life with a child with autism. This in itself is so silly I can't even begin to express it...as a parent who lives with autism, every day, I can tell you that there is no manipulation of the facts in this movie. There is no stigma here - our children didn't CHOOSE to be autistic. This is a disease with a cause (and someday a cure) and this film opens people's eyes, and promotes understanding.

Many people have commented on YouTube in support of this person's agenda; parents claiming that raising a child with autism is no different, or certainly not harder, than raising a neurotypical child. Some of the parents claim that since autism is a part of their child that they cannot hate autism - to do so would be hating the child! I could cry at the injustice of such statements.

The people reading these words - friends, family, people who know my heart - know how deeply and profoundly I adore Stephen, and how I thrill at every accomplishment, and celebrate each little victory. The negative comments I left for the YT guy were met with snide responses such as "You don't think your son deserves to be celebrated for his positive qualities?" or "Too bad you didn't take this chance to mention something good about your son..." This guy seems to be trying to take the attention away from what I'm saying. Maybe it's too painful for him (a self-proclaimed Aspie) to admit that I'm right. If he doesn't want to be cured, great. If he's happy with himself and his child whom he says has "classic" autism? Super. But don't tell me I'm a bad parent because I'm fighting against autism.

So here is where it gets ugly. Here is where I lay out the bare bones of living with a child with this detestable disease, for it can be called by no other name. I want someone who carries the banner of neurodiversity to tell me how living this way is to be celebrated and enjoyed.

My son stopped saying his precious baby words (gone-gone, bye-bye, Mama, Da-da) when he was about 15 months old. They went away. He withdrew into his own world, and left us. With great effort we have pulled him back, at least partway. But a part of him isn't here, and it may never come back. Isn't that fun?

I don't know what Stephen's favorite color is. I've never been able to tell him about the day he was born. I can't sit and reminisce with him about his toddler years and watch his face light up the way his big brother's does when I talk to him about his life. It's fabulous!

Stephen eats about six foods. I've never been able to bake cookies and give him a little taste, and watch his face light up because he likes them. We don't have family meals...Stephen eats when he gets hungry, and there's no other way around it - unless of course we want to enjoy tantrums at dinnertime. It is SO special!

Stephen wears diapers. He is almost eight years old. He is about four feet 6 inches tall, and weighs close to 90 pounds. He has no desire or understanding about using the toilet. He comes to tell us when he has pooped, and we lay him down like an infant to clean and re-diaper him. The people yammering on about how "Autism Every Day" doesn't preserve the childrens' dignity need to come over and watch as I wipe my son's little butt and put on his new Pull-Up. Now THAT is how you instill dignity in kids with autism. It's so...neurodiverse!!!

In his short life, Stephen has hurt others while having a tantrum - not in any way maliciously, but he can be aggressive, strong, and hurtful. I have had two bloody noses, assorted scratches that drew blood, kicks in the stomach that made me lose my breath, and a knee to the throat that had me spitting up blood. It's a laugh riot, let me tell you.

Stephen plays with preschool toys, and watches preschool videos. He should be chasing his big brother, and borrowing his Bionicles without permission, and wanting to be just like Kerry. Instead he is sweetly but almost pitifully attached to his baby toys. Joyful, isn't it?

Stephen often gets up at 3 in the morning, and one of us must get up with him so he doesn't get hurt or injured somehow. If we're lucky he's in a good mood at 3 a.m. If we're not, he's fussy and crying and loud. It's especially fulfilling when the downstairs neighbor comes up to complain about the early morning noise. We just giggle and say, "Don't be silly! It's neurodiversity time!" And the constant state of sleep deprivation I find myself in? Pah! It builds character. Who needs sleep? It's way overrated.

Stephen sometimes gets hurt, like any other child. If I'm fortunate, I witness the bumping of the head, or the stubbing of the toe, and I can try to offer comfort if he will accept it. Sometimes, though, he cries and sobs, and I don't know why. I could ask him till I'm blue in the face, and he will only cry more. I can't ask my son if his tummy hurts, or if his throat is sore. He can't tell me, you see. But, that only makes life more interesting, no? It's like being a detective. Yay!

My beautiful, gorgeous son can't tell me if he had a bad dream. He doesn't tell me he loves me unless he's prompted. Barring a cure being found SOON, he will never have a girlfriend, go to the prom, play a sport, go to college, get married, or have children. It's...beautiful?

Forgive what I know is an overuse of sarcasm. But I am so angry. This is the real deal. This is autism. This is what I hate and detest and deal with EVERY SINGLE DAY. I'm not saying this is everyone's story. I'm thankful that it's not. But this is OUR story - and the story of countless other families dealing with "classic" autism. Autism has made it impossible for us to do even the simplest things as a family. We don't know what it's like to casually decide to go the park. We don't get to go on vacation as a family. We don't get to have a relaxing dinner out as a family. Not ever. We deal with these issues on a daily, sometimes hourly basis...and we get tired. We get hopeless. We fall into despair when these issues build up and build up over the course of a day, or an evening.

That is why the film "Autism Every Day" is therapeutic for me. I need to know that I'm not the only one. There is real comfort and strength in the bond of shared experiences. One point from the film that has been criticized to the nth degree is when one mom says that she has been to the edge...she felt like she wanted to put her daughter in the car and drive them both off a bridge.

The anti-realists decrying the film gasp! How HORRIBLE! This woman is clearly a would-be murderer!

Give me a break. I know parents of typical kids who have wanted to throw them out a window after a trying day. Do they do it? No. A huge majority of people express their frustrations (healthily) and move on, resolving to be better parents. Multiply these frustrations a hundred fold, and you get what it's like to be the parent of an autistic child on a bad day. Of COURSE you walk to the edge of that deep, dark hole. Of COURSE you want to give up. Of COURSE you think that life is one long series of hopeless disappointments. But then, as I've expressed in this blog, your child smiles...and the despair recedes...for the moment. The idea of condemning this mom (and the filmmaker) for expressing this honest, raw feeling makes me sick. Unfortunately there HAVE been tragic ends to the lives of some poor babies with autism (and for a great many more innocent babies who DON'T) - but that does not mean that every parent who tiptoes to the outer edge of desolation and hopelessness is to be condemned for merely expressing those feelings. On the contrary: getting those feelings OUT is a key to survival, and to being able to continue on.

So tell me. Where's the joy of autism? Parents who want to believe that autism is present from birth (christschool again) are more than welcome to enjoy the "benefits" of autism in their families. Quirky behaviors, non-potty-trained children, what have you...live it up, people! But know that you are deluding yourselves. Do you think that if you admit that autism is a DISEASE that your children suddenly don't matter? That they don't count? Nothing could be further from the truth. My child counts as any other child - and as such he deserves a full life, and a chance to interact with the world around him with understanding and perception. There's a blog called "The Joy of Autism" http://joyofautism.blogspot.com/ where a mom details the joyful life she shares with her son. I can tell from reading a few of her entries that her son is fairly high functioning. Well, here's a quote:

"Thank goodness I've got my son, and not them and not whatever they claim to have 'kidnapped' him, cause it sure doesn't look like the Autism we know. You see, autism around here looks normal to us. It looks friendly, it still learns and grows, and it makes our family happy when it smiles. It's learning to type, it's learning to swim, it goes to school with other children and it seems quite happy there. It likes to travel and tends to speak more when relaxed and seeing new things. It likes to jump and likes to run and is just learning to ride a two-wheel bike. It likes to play musical instruments and likes to coordinate its beat with its music teacher. It reads signs well and is learning about dangerous things. It sure doesn't look like it's holding anyone for ransom here. Our son knows he's different, even if he doesn't know who your Autism is, and it's only what you make of it that he will be fully aware of. You can choose. You can tell my son that Autism is holding him for ransom or you can tell him that he's free to choose what he wants and he's alive, and beautiful and we are all here to help him succeed."

Okay. Autism does NOT look normal "around here." Look at all the things her son is doing. It's wonderful, and should be applauded...but Stephen doesn't do those things. Stephen doesn't "know he's different." Stephen doesn't know he's "free to choose what he wants" - I don't even know how much self-awareness he has. It's not beautiful. Not even close. No wonder she doesn't see a problem! No wonder the parents of high-functioning kids say, "We're great, don't call OUR kids disabled!" That's all well and good, but MY son is most definitely disabled, and I want him to get better. End of story.

One more quote from "The Joy":

"My friend with two disabled children is here too. She said to me last night, 'it makes me so sad to think that there won't be any more people with Down Syndrome in twenty years.' I think she has summed it up for many of us parents with genetically different kids. We don't see the problem, here. (Well, I can think of a couple of bloggers who think there are major problems, and as they are parents themselves, I cannot relate to them whatsoever). It is only the medical profession and the media which profits from such a gaze -- the medical gaze, if you will."

Sad that there won't be any more people with Down's? What? Oh, wow. THIS parent of a "genetically different kid" most certainly sees a problem, here. Isn't eliminating a genetic disease that limits the lives of certain individuals a GOOD thing? Call me crazy, but I'd say that's a fantastic thing. Eliminate all diseases! Down's, autism, Fragile X, CP, cancer, AIDS...all of them! They are all diseases that rob people of vitality and well-being.

Did I say "eliminate all the people who HAVE these problems"? No. That's patently absurd. Love them, cherish them, celebrate them...but don't tell me that because I wish those diseases didn't exist that I'm some kind of neurodiversity Nazi.

I will step gingerly down from my soapbox now. My legs are tired, and my brain is buzzing from trying to get these thoughts out in a (hopefully) coherent fashion. At the end of the day, I hope all parents can agree that loving our children as they are is the fundamental rule of parenting and raising a happy family. I love my babies as they are, and want only the best for them. For Kerry, that means continuing to be surrounded by friends, and with laughter, and with the best personality I've ever seen in a kid. Do I want more for him? Always! Reaching higher, and teaching our children to reach higher, is part of being a good parent. For Stephen, it means fighting autism every step of the way. It can't have him. I won't let it. I won't lay down and let it take him away any further.

It's a hard fight, but one we are determined to win.