Culture of Death Hits the Autism Community

Posted By on October 14, 2013

For those who haven’t heard about it, I’m talking about the Issy Stapleton case. It seems like everyone has a response, and here’s mine. The situation, in a very abbreviated nutshell, is this: Kelli, the mom, got hit with the refusal of her daughter Issy’s  school to provide services to Issy after she exited a treatment center for Autism. Presumably despondent, mom attempted murder-suicide by carbon monoxide poisoning. Both survived but with serious effects.

First,  let me share some of the other responses I’ve seen.

Very little response has come from the mainstream media, aside mostly from local venues.  Some have attempted neutrality, some have come out in favor of the poor, victimized mother who didn’t get the support she needed. The blogosphere has been more active. Autistic Self Advocacy Network, not surprisingly, has been less supportive of  the woman accused of trying to kill her disabled daughter. Of course, their views rarely get referenced by those who believe it is better for others to speak for the autistic than for the autistic to speak for themselves. Speaking of which, I can’t help noticing that Autism Speaks opens its mouth but doesn’t say much. They don’t come out in support of the mother, but they only address the issue of resources, lending an implicit implication that the mother’s lack of support really was the cause of this tragedy.

Which leads me to what really angers me about this situation.

It is our job to advocate for the disabled. It is my job as a parent. It is Kelli’s job as a parent. It is the school’s job. It is Autism Speak’s job. It is not our place to get rid of them or view them as a family burden or an educational/financial burden. It is our job to take care of them. Period. And if Kelli, or Autism Speaks, or the principal of Issy’s school does not want to do that, then they should step aside.  Walk away. Don’t get in the way of this child getting the care — not disposal– she needs.

You see, I understand about the lack of resources. I am going to say here some things I”m not “supposed” to say, but I know them to be true and I’m tired of bureaucratic doublespeak. I have an autistic daughter that I can’t get sufficient resources for. I’ve been trying for years to get diagnoses for her and her brother, but with no cooperation from the medical community up until very recently. I am very fortunate that the school staff understand, but they do not have the authority to diagnose, and their hands are somewhat tied in terms of what accommodations they can make without a diagnosis.

First, I took my son (age 1 1/2) to the doctor. I told him what a difficult time my son was having, and was given some mild encouragement of the generic sort. At age 2, he went again and I told the doctor that his language development wasn’t right. He didn’t put two words together until the day before his second birthday, and that is not normal. Especially for a child who is very obviously extremely intelligent in other ways, and in a very verbal household. My doctor said “That’s perfectly normal. It’s just because he’s a boy.”

By age 3, all heck had broken loose. Our very obviously hyperactive son was breaking hundreds of dollars worth of things every single week. He was playing in food and cleaning chemicals on the floor. The final straw was when we woke at 6 AM to find that he’d broken the childproof latch and taken out the bleach. He’d removed the childproof cap and poured it out. He was sitting in a puddle of it on the kitchen floor. A very hasty bath, and he was unharmed, thank goodness. But we knew that we could not ensure his safety with traditional means. We tried a crib tent, invented for autistic children. He tore through it in three days. We tried barricades, tougher latches, locking cabinets, anything we could think of. Not a single one lasted more than a week before he broke it. He tore hinges and deadbolts out of walls. He tore DOORS off their hinges. Yes, plural. Several of them. He broke two cribs, two toddler beds, one dresser, three doors, two recliners, a rocker, three windows, and six dining chairs. Well that’s what I can think of off the top of my head. The doctor said he was normal. Others said I just didn’t supervise him closely enough. (Evidently I was supposed to lock myself and my younger child in the room with him while he napped.)

FINALLY I learned about Birth to Three. I called them and they set up an evaluation. My son tested as delayed in every category they tested. Language, comprehension, social skills, large motor, fine motor, etc.  It had taken two years of trying to convince people that something was wrong and we needed help. But people don’t like to give a “name” to things, because they think it will scar the child. It never occurs to them that you need a diagnosis to get services. Insurance doesn’t cover therapy because Mommy is dissatisfied with Billy’s progress.

At his 3-year appointment, I unloaded on the doctor and he finally gave me a referral to someone I was told was an expert. It turned out he was a pediatrician. He spent five minutes with my son, and told me that he had ADHD but otherwise was fine. “He speaks with intonation,” he said. “Autistic kids don’t.” He had stopped listening by the time I responded that every single thing my son had said had been a direct quote from Caillou, his favorite tv show, complete with intonation copying.  He had memorized episodes.

But at least he had developmental preschool. They were helping. A lot.

By the time he began kindergarten, it was quite clear that my son was on the spectrum. He toe-walked and hand-flapped. He quoted entire infomercials. He spoke robotically, in very precise language. He understood everything entirely literally, and people frequently thought he was joking when he responded in kind. He was in trouble daily at school, for his hyperactivity and “disrespect.” He corrected everyone, constantly. His favorite sentences always started with “actually,…”

Let me point out that if I had been told about Birth to Three when I brought my son in at 2 for his well child exam, he could have received help a year earlier. He might have had a good kindergarten year. If I had been told that the pediatrician we were referred to wasn’t qualified to diagnose autism, I could have saved myself three hours of driving and sought someone who was. If the doctor had been allowed to refer to a professional outside his network, we could have had a diagnosis at age 2, instead of trying to get one at age 9. We could have gotten an 504 plan or an IEP from kindergarten on, instead of having him get disciplined every time he acted autistic or hyperactive.

Now let me back up three years. When Son was 2, Daughter was born. She was going to be the “easy” one. Or so we thought. By age 9 months, her stranger anxiety was so extreme that if exposed to anyone who did not live in our household she would scream in terror. Even family members. I thought it was a phase. By the time she started kindergarten, I realized there was something off, but I did not know what. Autism did not occur to me because she wasn’t “nerdy” like her brother. She obsessed about cats, not keys. She was an early talker, and never, ever, ever stopped. She talked loudly, as though she had no concept of volume control. She didn’t walk on her toes, or flap her arms. But oh, she got into things. No egg was safe. She loved the feel of flour sifting through her fingers on the floor, or eggs sliding on the linoleum. Or a wet Pull Up. Yes, she was still incontinent at age 5. She barely learned to control it during the day in time to start school, and constantly asked why she had to bother. She didn’t feel like using the toilet; it wasn’t that she was unable.

We got her into therapy, because we had to know what was wrong. She was diagnosed with anxiety and ADHD. Right around that time I happened upon an article about girls and aspergers. I learned how it looks different on girls than it does on boys. And they described what a typical aspie girl might look like. It was a behavioral photograph of my daughter, except that my daughter had more intense emotional disturbances.

I took that suggestion to her therapist, who poo-pooed it. Every time we brought up a behavior, she said “That’s perfectly normal. She’s just very creative.” She had been suspended from school six times, but the therapist also thought that was normal.

Finally we got a piece of good news. A therapist who dealt with children had joined the local medical group. We transferred Daughter’s therapy to the local lady, and she saw what was happening. She was bothered by Daughter’s 9th, then 10th, then 13th suspensions. She referred us to someone outside her medical group who could do autism evaluations. She referred both of the two. (By this time she was seeing Son, too, after he’d gotten an emergency expulsion because of OCD related intrusive thoughts.)

Which leads us to the present.

Now, there are several points I think it necessary to ponder.

  1. So much of this could have been avoided if our doctor had taken my concerns seriously.
  2. So much of this could have been avoided if our doctor had referred us to someone qualified to give an evaluation.
  3. So much of this could have been avoided if our doctor had had a list of resources for worried parents.
  4. I assure you that while I can’t claim to have walked in Kelli Stapleton’s shoes, I do know what it is to have overwhelming challenges and no community backup.
  5. I never tried to kill my children. I never tried to harm them. I never did anything other than love them, do my best to protect them and meet their needs, and occasionally escape for respite.

And that fifth point is the really important one. The more I fight for the kids, the more I LOVE them. I am their advocate, not their adversary. Even when they are really rough on me. And if I ever reached the point where I simply couldn’t do it anymore, I would find someone who could, rather than harm them. And I would keep looking for resources until I found them, no matter how long it took. Which is what I’ve been doing.

For those who defend Kelli Stapleton, I ask you this: do you really believe it’s understandable to try to kill someone you were put on this earth to protect? Because I can tell you, it is not. I can’t understand it, and I cannot defend it. No. Matter. What.

And that’s because I do not buy what the culture of death is selling. Healthy children are not worth more than unhealthy children. Easy children are not more valuable than difficult children. Many of the greatest molders of society have started out as very difficult children. But we’ve been sold a bill of goods, a lie that tells us that children with problems should be exterminated before they have a chance to become an inconvenience. We’ve been told, even, that it’s for their own good.

But out of all the groups I mentioned above, who had talked about the Stapleton case, the one group who didn’t think it was for Issy’s own good was the Autistic Self Advocacy Network. It isn’t autistic people who are saying autistic kids are better off dead.  If autistic people can see the value of all people, but society’s political thinkers can’t, then it kind of begs the question: who is really the superior person?


One Response to “Culture of Death Hits the Autism Community”

  1. Mom says:

    Wow, Christina, great letter. I didn’t realize how much you reached out and were let down. You are an amazing mom and I believe God chose you for those children because no one else could do it. I know it’s hard. You’re always in my prayers. I love you so much and you make me so proud.

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