May 21st, 2006 by Jemaleddin Cole

Alison Tepper Singer, said:

“There are par­ents that are forced to put kids in schools that are com­pletely over­crowded and 12 kids and 1 teacher. And the – the kids don’t make progress. But I remem­ber that was a very scary moment for me when I real­ized that I had sat in the car for about 15 min­utes and actu­ally con­tem­plated putting Jodie in the car and dri­ving off the George Wash­ing­ton Bridge and that that would be prefer­able to having to put her in one of these schools. And it’s only because of Lauren, the fact that I have another child that I prob­a­bly didn’t do it.”

That’s a pretty ter­ri­ble thing to say. But it gets worse: she said it with her daugh­ter Jodie in the room. Don’t believe me? It’s about 6 min­utes into the Autism Every Day video pro­duced by Autism Speaks1.

Now depend­ing on how much anti-​autism pro­pa­ganda you’ve seen, you may believe that she’s either a whack-​job who doesn’t deserve to have a child, or a poor suf­fer­ing mother who is going through the cru­elest ordeal a parent can face. As the father of an autis­tic child, I’m going with whack-​job.

For those of you with­out autis­tic family or friends, your only window into this world prob­a­bly comes from groups like Autism Speaks, or Cure Autism Now2!. As advo­cacy groups, their goal is to raise as much money as pos­si­ble for research and edu­ca­tion fund­ing. In order to do this, they have to make autism seem like the worst thing that can happen to a parent. On the same video, another woman says:

“We’re just judged more harshly and more con­stantly and they expect you to do things that no human being should be expected to do.”

Please note that she’s talk­ing about what she as a parent has to go through, not what an autis­tic has to face. It’s her life that’s dif­fi­cult, not her child’s. But the bitch­ing doesn’t stop there:

“We never have any time to be together, it’s always one of us with Jodie.”

Oh my good­ness! Those poor par­ents having to take care of their child! They never could have imag­ined that having a child would mean look­ing after it! Oh cruel world!

And, as is typ­i­cal for these groups, they don’t mind making up sta­tis­tics to sup­port their cause:

“When you have a child with autism, I think the rate of divorce is like 80%.”

And I’m sure we’ll all take that stat with like a grain of salt.

Look, par­ent­ing an autis­tic child isn’t always easy. I spent years up all night with Jared. I’ve spent hours clean­ing up messes that would shock and amaze you3. And we’ve been really lucky both with Jared’s progress and his sweet dis­po­si­tion. Here’s what I wrote over at Autism Diva’s site:

You know, life hasn’t been easy with my son, and there were times when we got depressed. But in ret­ro­spect, I real­ize that it wasn’t ever Jared that got me down, but the things that doc­tors and spe­cial­ists and books and the inter­net told me:

Jared would never show me he loved me. Jared would never have a sense of humor. Jared would never get mar­ried. Jared didn’t even have real feelings.

And you know what? None of that turned out to be true. Jared is the sweet­est, kind­est, fun­ni­est, coolest little boy I’ve ever known. Jared loves noth­ing more than tickle fights and pro­longed hug ses­sions. Jared makes jokes (at my expense!) all the time. Jared has been the thing that got me through the depres­sion that he was sup­posed to be causing

So don’t believe the hype. Being Jared’s father is one of the best things that ever hap­pened to me. I’m a more patient, more expres­sive, more loving man because of Jared, and I wouldn’t change him for the world. And I cer­tainly wouldn’t kill either of us.

1 You’ll need Win­dows Media Player to view it and you have to view it in WMP as it’s streaming.

2 No, really, there’s an excla­ma­tion point in the name.

3 Like when he knocked the TV off of the enter­tain­ment center, poured milk in the lunch meat bin of the refrig­er­a­tor until the bologna floated out, and then used the bologna to com­pletely tile the now empty area of the enter­tain­ment center by chew­ing each piece into a rough square.

Category: Autism, Family, Personal
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3 Responses to “Autism Speaks Doesn’t Speak for Me”

  1. RE: Autism Speaks Doesn’t Speak For Me…
    I’ve seen the “Autism Everyday” video and read your com­ments. As another parent of an Autis­tic child, I have to say that I can iden­tify with both points of view pre­sented in the film and from you. The film­mak­ers and the par­ents involved in the film were brave enough to air the deep­est, dark­est thoughts that many care­givers (not just par­ents) of the dis­abled carry in their minds. I say “brave enough” because no parent would ever want to admit to feel­ing this help­less. What we can’t forget is that we, as par­ents, are human. There is no train­ing to pre­pare you to be a parent of a child with Autism. And as strong as we want to be, we just can’t be more than what we are…and that is simple human beings. We are all enti­tled to our feel­ings. We need val­i­da­tion and under­stand­ing.

    Par­ent­ing an Autis­tic child is frus­trat­ing. Some­times you think “Why me? Who thought I could do this?” There are times where you just worry. You wonder when you will see progress. Will your child be able to lead a some­what inde­pen­dent life? What does the future hold? You beat your­self up. You always believe that there is more that you could do. If there were more resources. If there were more money. Can’t some­one just come into our lives and give us the answers? HELP! HELP! HELP!

    I believe that all of the par­ents involved in the film would tell you that their chil­dren are bless­ings to them. Although I expe­ri­ence frus­tra­tions (on a daily basis), it just takes one smile, one giggle, one hug, or one kiss from my daugh­ter to remind me how pre­cious she is to me. This is where I agree with you. I also some­times ponder what my life would be like if my daugh­ter were typ­i­cally devel­op­ing. Per­haps I’d be self-​absorbed. More enveloped in my career and spend­ing less time at home. The per­sonal growth I’ve expe­ri­enced because she is in my life is astro­nom­i­cal. I am more patient. I am a more empa­thetic and char­i­ta­ble person. I am extremely aware of real­ity and the human con­di­tion.

    So please do not dis­count these par­ents for express­ing the frus­tra­tions that we all have felt (to some degree, whether we admit to it or not). For me, seeing them in sit­u­a­tions famil­iar to me and express­ing frus­tra­tions also famil­iar to me, helped me to feel like I was not alone. At the same time, the rest of the world should know that Autism is not a prison sen­tence. We are par­ents who love our chil­dren and want what is best for them just like every parent does. And our chil­dren are people who just want to live their lives, just like any other child.

    — Angela S November 25th, 2006 at 7:04 pm #

  2. I HAVE WRIT­TEN TO SEV­ERAL “AUTISM” SITES WITH NO RESPONSE TO A SUG­GES­TION I BELIEVE MIGHT HELP REDUCE THE NUMBER OF CHIL­DREN
    BEING BORN WITH AUTISM .. IT’S AT LEAST WORTH CHECK­ING OUT.

    I HAVE AN 11 YEAR OLD AUTIS­TIC GRAND­SON .. AND THIS WILL NOT HELP HIM .. BUT HOPE­FULLY OTHERS…………

    AUTISM HAS GROWN IN DIRECT NUM­BERS WITH THE AMOUNT OF
    TECH​NOL​OGY..IE: CELL PHONES, COM­PUT­ERS, MICROWAVE OVENS, ETC.

    I BELIEVE THAT IF WOMEN WHO BECOME PREG­NANT COULD WEAR SOME
    TYPE OF, PER­HAPS NASA INSPIRED MATE­R­IAL UNDER GARMENT,WHICH COULD PRO­TECT THE FETUS DURING THE 9 MONTHS OF PREG­NANCY,
    PER­HAPS, JUST PER­HAPS ..??? IT’S CER­TAINLY WORTH A TRY, NO FANCY
    TEST PERI­ODS .. JUST HAVE WOMEN WHO WISH TO TRY IT, TRY IT ..
    AND IF FEWER AUTIS­TIC CHIL­DREN ARE BORN .. IT’S A MIR­A­CLE .. IF THE
    SAME NUMBER ARE BORN .. NOTH­ING VEN­TURED, NOTH­ING GAINED.

    I WANTED TO SEND THIS TO “AUTISM SPEAKS” .. BUT I’M NOT COM­PUTER
    SAVVY .. SO IF SOME­ONE ELSE WANTS TO SEND THIS IDEA TO THEM, BE MY GUEST .. I’M NOT LOOK­ING FOR CREDIT .. JUST A CURE.

    — JAN KLEE April 22nd, 2007 at 10:29 pm #

  3. Okay, as a person diag­nosed with Asperg­ers Syn­drome (a form of autism), let me address all you parents/grandparents of chil­dren with autism who think about killing you child/grandchild just because they have autism:

    GET OVER YOUR­SELVES.

    Autism is not a dis­ease, it cannot be cured. We don’t need to get rid of autism, we need to HELP people WITH autism. You people show no inner strength what­so­ever, and you all dis­gust me. And I’m pretty sure you dis­gust other people in my posi­tion too. I’m seri­ous. I lit­er­ally want to throw up when­ever one of you comes on TV, or when­ever I hear about one of you doing some­thing dras­tic like killing your child JUST because their brain is wired dif­fer­ently than yours.

    Let me tell you some­thing: your child/grandchild has autism. Accept it. There’s noth­ing you can do about that, and you shouldn’t WANT to do any­thing about it. It makes them dif­fer­ent. Good. Dif­fer­ence is what keeps you from being a lousy human being.

    House, MD expressed it best:

    “Spoken like a true circle queen. See, skinny, socially priv­i­leged white people get to draw this neat little circle around them­selves. Every­one inside the circle is normal. Every­one out­side the circle needs to be beaten, broken, and reset, so they can be brought back into the circle. Fail­ing that, they should be insti­tu­tion­al­ized. Or worse— pitied.”

    — Adam May 15th, 2007 at 7:23 am #