Given how many autistic people there are in the world, it's odd how much of the conversation about autism revolves around children who don't exist. The most common such child is the one who is "indistinguishable from his peers." This is the child who will supposedly emerge after successful therapies or treatments for autism leave the child essentially "normal."
This hypothetical normal child is closely related to another, younger one--the 1- or 2-year-old who was typically developing before the signs of autism became apparent. These two types of hypothetical children are linked by the assumption that their autism obscures their "real" selves. The hope for parents is that if the autism can somehow be removed, the real child will re-emerge.
I came across yet another hypothetical child when I was interviewed by Dr. Will Clower on "The Business of Health," a radio program on Pittsburgh's WMNY. You can listen to the interview here, beginning about 28 minutes into the program. Toward the end of the interview, Dr. Clower asked me whether I have any other children besides my autistic son, Sam (I don't). Then, assuring me that he was "the nicest person on earth," Dr. Clower said this:
Some people will hear this, people who are afraid people, they would hear this and they would say, "Ah, you're sticking with one because your probability of having a second one and having your next child be autistic is higher and so of course there's a reason to be afraid."
The first lesson to draw from this is that if someone precedes a question by assuring you that he is the nicest person on earth, it's not likely to be an appropriate question. More important, though, is the appearance of a third hypothetical child, one who bears an even more tenuous relationship to reality than the first two.
By conjuring this child into even temporary existence, Dr. Clower made some dangerous assumptions about the child I actually have. After all, the whole premise of the question is that there is something wrong with Sam, something that my wife and I wouldn't want in a second child. It assumes that the reason to have a second child would be to somehow achieve what we did not achieve with Sam -- a "normal" child. And it assumes that not doing so would be a failure that would further compound the "failure" we had with Sam.
It ought to go without saying that people have or don't have children for all sorts of reasons. (Like most decisions here in New York City, it's based at least 50 percent on real estate). There's no way to know exactly why a couple decides to have or not have children, and there's certainly no reason to draw any conclusions about autism based on those decisions.
It seems equally off base to make decisions about treating autism based on the "normal" children we hope our children will become or once were. It seems to me that this is why a group of autistic self advocates and their allies has tried to rebrand April's Autism Awareness Month as Autism Acceptance Month. Perhaps acceptance seems like a rather uninspiring goal. But when many conversations about you are about how to make the world have fewer people like you, acceptance can seem like a pretty good idea. I believe that many autistic people are asking that we stop concentrating on the hypothetical people and start listening to the real ones.
In our home, the big victory of the week is that Sam rode the #3 New York City subway train for the first time. This was a big deal because it is the culmination of a multi-year effort that began when we discovered that Sam had developed a terrible phobia of the #3. Early on, if my wife or I were traveling solo with Sam, we'd have to enlist a stranger to yell to us from the platform to tell us when Sam's beloved #2 was finally coming. Sam, meanwhile, would be cowering next to us halfway down the stairs because he didn't even want to risk seeing a #3.
Through therapy, social stories, and a lot of games in which stuffed animals had phobias, we helped Sam reach a point where he could stand on the platform and watch a #3 train go by. And then he told us that he was going to ride one with his babysitter. And he did. Today he announced he's planning to do it again in two weeks.
We didn't do a lot of thinking about hypothetical children throughout this whole process. There wasn't much point in wondering whether some other version of Sam -- or some entirely different child -- would have been able to just get on the train. And we know that Sam's achievement doesn't mean that he is about to become a non-autistic child indistinguishable from his peers.
The only hypothetical person we're really interested in is Sam's own best self. There will be other #3 trains he will want to ride, and our job is to help him do so, even if it's more challenging for him than for others. His victories will be won as an autistic person. And whatever they are, they will be enough for us.
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The little boy who would run down the daycare hall screaming "daddy" and jump into my arms.
The little boy who put his arms around me and tell me he loved me as “big as the sky”.
The little boy who would crawl into bed with me ask me to read a story with him and then curl up next me asleep.
I realized I loved him exactly the way he was, exactly who he was, perfect, and I would not change a thing.
That does not mean I won't help him be the best person he can be. But it means I am not going to go around thinking he is broken and cursing the world for creating him. I truly pity the parents who are so busy being angry and resentful that they cannot appreciate the beauty of the child they have. I can and I am forever blessed by it."
But there was a time a time when I was not so sure about what I felt. He was five years old and struggling at times. I wasn't sure how he was going to do in life, how he was going to make it. I was in a great deal of emotional pain. I was talking to my mentor in a program, and felt like I was being torn apart. My younger brother was severely mentally and physically disabled. It tore my parents lives apart, and all I saw was life going down that exact path. I cried out “Why in hell did God damage my son's brain, why him???” My friend looked at me with great compassion and said “ I don't know”. He then asked me “Do you love Tim?” I told him “With all my heart”. He then said “ If I was able to give you the power of God right now...what would you do, what would you change?”. My mind whirled, but I was suddenly stumped. What could I change about him that would not change the parts of him that were unique and beautiful?
Once these impurities are removed, your REAL child will come bursting forth.
The program involves the following:
1) All organic gluten, soy, casein free-diets
2) Vitamins
3) Using 100% non-plastic, non-toxic cookware and utensils
4) Special water filters that remove impurities in the water to help detoxify the autism.
5) Special tests (most expensive part)
After 6 months of the program, your child will be autism free.
Downside is, if your child eats so much as one morsel of anything with toxins in it, they will have to reset the 6 month timeframe from the beginning.
I visited them and paid ~$10,000 to help cure my son's autism.
It's been about 7 months and he isn't cured yet, but it's most likely because he ate something wrong at school.
Some people say that this center is a waste of money.
Just because the founding doctor and previous executive director(Andrew Wakefield) had his medial licence revoked due to fraudulent research, doesn't mean it's not working. He was clearly a man ahead of his time.
Once my son is cured, I'll show him off to the world and make believers out of everyone.
http://www.johnson-center.org/
That statement has nothing to do with dreaming up some hypothetical child or making assumptions about existing children but rather has everything to do with the costs associated with raising a child with autism.
Let me put it this way, I would be afraid to be hit by a car because I know that it will hurt. But that doesn't mean that I am calling into question the value of cars nor does it disparage a specific car. I can say that I am afraid of being hit by a car and take steps to minimize the chance of that happening while at the same time be a big fan of cars.
In the same way, fear is a perfectly rational and reasonable response when faced with the challenges and costs of raising a child with autism. If you fully understand what those costs are - i.e. you have a child with autism - then it is reasonable to be afraid of the costs and challenges of another child on the spectrum. But saying that doesn't mean you are calling into question the value of a child with autism.
It is simply acknowledging the reality that children with autism come with a much higher cost than a typical child.
I also wanted to 'cure' my son's autism, but that was out of ignorance. At my son's diagnosis, I was told there was no cure and little hope. In fact, it was so depressing at the time, I gave up on him. It took a couple weeks before I was able to look at him and say, "like hell I'm gonna let you drift away."
It's been 3 years now. I can't even count how many physical therapy and floor time sessions I've taken part in. The interventions have become part of our everyday life, 24-7. The results have been spectacular.
3 years ago, my son was trapped without any hope. He started Kindergarten last fall-- completely integrated, ahead of his class by several grades in reading, writing, and math. He's a brilliant little artist with a train obsession. Loving. Laughing. Fun. Uninhibited. I couldn't be more proud or love him better.
And he still has autism. It's still pronounced. And I wouldn't change it.
Your article is important because the world seems torn between 'cure' and 'no cure'. It's the wrong conversation. It discourages parents from taking control of treatment and fighting to help their children overcome. How many beautiful lives have been wasted because so many doctors shake their heads and say, "there is no cure."
This is about overcoming obstacles, not removing autism as though it were a veil over a 'real' kid.
Love your work. Thanks again.
Now that I see ASD as a spectrum ranging from profoundly challenged to neurotypical acceptance makes a great deal of sense. However, it also raises another, crucial issue: in Making Sense of ASD, Dr. James Coplan points out that a gap still exists between that kids who lose the diagnosis and neurotypical kids in terms of their skills (for instance, no longer needing physical therapy is not the same thing as having the hand-eye coordination that would enable a child to do well on the baseball field; being able to hold a conversation doesn't mean social-pragamatic language issues no longer exist). In this context, to say that one's child has been "cured" is to participate in an argument that deprives those children of therapeutic supports they still need.
Speaking as someone who used to want to "cure" autism, I think it is important to acknowledge that, for some, the desire to "cure" autism isn't about discovering the "real" "normal" child trapped inside an autistic shell; rather, it can be fueled by the desire to save our children from the struggles and sorrows that go hand in hand with some of the symptoms of autism. It's heartbreaking to think that my child might have the desire, but the inability, to communicate or that he might want to join his friends at a party or participate in class but be unable to tolerate the noise. Speaking as someone whose child's symptoms have dramatically improved, I can say that when my child couldn't enter a room full of people, or played alone in a corner of his daycare because he was so overwhelmed--when he seemed to be standing on the other side of a chasm I couldn't cross--I would gladly have pursued a "cure" if I thought one were possible.
First I'd like to say that I really enjoyed interviewing you on my program. I found you to be a thoughtful and articulate voice. I have to disagree, however, with the motives and assumptions you assigned to my question. It was and remains my working assumption that there is nothing at all wrong with Sam and that he is blessed to have parents like you. I believe I reiterated this in our interview.
From my question, I simply wanted you to articulate exactly what you did (to some extent repeated in the post above), to in effect remove for the audience any sense that there is anything not "normal" -- as you put it -- in your life regarding your family decisions.
In any case, I am sorry that our conversation led to an interpretation that is so totally, so 180-degrees, from my intent or actual assumptions. Thank you again for your time and work, Todd.
Will Clower
Good, we're talking about autism in Autism Awareness Month, but ugh, do we have to frame it in terms of fear? Fear of what's causing it, fear of having a child with autism, fear of having ANOTHER child with autism. Fear of what people are afraid of. Fear that the numbers are wrong. I know it's talk radio, but really, there's enough doubt and fear out there without stirring that pot again.
Wish you would find a better entry into such an important topic.
For instance, you could discuss how school and behavioral health systems are having to adjust their procedures to deal with the higher incidence. Autism was never something that our society expected to be at 1 in 55 kids. The higher incidence is happening in other countries as well (ref. South Korea - 1 in 38?). Military ASD kids overseas don't have the kind of support they need because the behavioral health resources away from home are extremely limited.
Since we know you love politics, I bet you could figure out in a heartbeat which party is likely to respond to the crisis, and which one will ignore it. What are your thoughts there?
I agree! A segment on which set of politics (right or left) will lead to better support is an awesome suggestion. For example, the recent change to a more narrow classification for ASD may impact how much support is allocated. Unfortunately, the needs are exactly the same ... it's just the classification that has changed.
So, if that classification change is used as a pretense for pulling out funding, there will have to be even more adjustments "on the ground". And which party is more likely to allow funding to lapse? Hmmm, I have my suspicions. But something I would like to better understand is what kind of support military ASD kids need that they aren't getting.
Okay, at the risk of rambling on too much (which, I guess is what the radio show is for, lol), I want to let you know that I do try to stay positive always, never be incendiary or inflammatory, and assume the very best about people. That's just who I am, and I do hope that comes through in the show.
Thanks again, Fran, for your candor and good thoughts!!
Will
Thanks for reading the post and for clarifying your intentions.
In a live interview situation like your show, it is of course difficult to quickly figure out the motives behind a particular question. Your setting up the question by saying "Some people might respond by saying..." leaves open to interpretation whether you're one of those people. I take you at your word that you're not. Nevertheless, these negative attitudes about autism are common in our culture, and that is probably one reason why it was so easy for you to frame a question from a perspective that you don't believe in.
Of course, I made a film about controversial topics, and I expect to answer controversial questions. But if, as you say, you share my views of autism, I'd urge you to spend more time promoting those views and less time adding to the fears about a disorder that already causes too much anxiety.
Thanks again.
Todd
. In fact, when they were diagnosed, we were given a sheet that said that the problem was the 'refrigerator mom'. I had the chance to wad it up and throw it away in front of the professionals as I said "This does not apply here." We were also told that our children would probably have an IQ of about 80, again I told them that "This does not apply here." In fact the circumstance was that my 3 year old son and daughter could both read, this was downplayed - it must be just a "savant" thing. The professionals said the children really couldn't understand what they were reading, because autistic children have a problem with language. We were also told that we should go through a period of morning because of losing the children we thought we had. I don't think they believed me when I said nothing they had presented us with was any reason for changing our expectations for our kids. We never did and now both are college graduates, and my son is pursuing an MBA. I guess what we need to say is as with any kids expect them to always do their best and you may be rewarded by them doing just that.
I thought of you tonight as I went to a screening of a documentary about a group of men, all father's of autistic kids, called Autistic Like Me. It was interesting.