1 in 50, 1 in a million: What Autism Means to My Kids

An Interview With Rosie, Lily, and Bobby conducted early Saturday morning before I consumed enough coffee.

Me: Rosie, you know about autism, right?

Rosie: Uh, well I have it.

Me: Yes, you do. What is autism?

Rosie: I don't know.

Me: What do you think it is? Who else do you know has it?

Rosie: I'm not sure. Lily and Bobby have it.

Me: Where did you get it from? If autism is a way of thinking and being, who are you most like?

(Lily interrupts: "Mom, it's not a way of thinking and being, is it?")

Me: Lily what do you think it is?

Lily: Dang it. I forgot what I was going to say. I think I know what it is but it's hard to say

Me: Is it you?

Lily: No, it doesn't have to be you. That doesn't make sense.

Me: Okay, let's try this from a different angle. What part of being autistic makes you different from other kids? Are you different?

Lily: Well, umm, it's hard to answer.

Bobby: It's still the same for me, sis. Hard to explain.

Rosie:  Well, yeah. One time I was the only person to get a 100 on a test in my class.

Lily: What's that got to do with anything?

Me: Well, it might have to do with autism if we know what autism is defined as. Do you want me to define it? Let's see if Bob knows first.

Bob: Autism is a disability, some people say that. Others would just call it a mental impairment, but that's pretty much the same thing. 

Me: What's autism to you? You're autistic, right? So what does that mean? 

Bob: There's many challenges to overcome. So you find out what your strengths and weaknesses are and work to go around the weaknesses. Back to the subject on what people call autism, it's an impairment of the mind, how the mind was created, born, formed, how neurons work on it. (Oh, my boy--he shines, doesn't he? He absorbs information and has the capacity to amaze! Don't write him off, ever!)

Me: So you really have worked to understand it.

Bob: I've memorized what other people say.

Me: Do you see your mind as impaired or your sisters' minds as impaired?

Bob: No. Some might think that, but I don't. Some people might think you're the next Einstein or even greater. Wait till they grow up.

Me: So do you see autism in your dad and me?

Bob: Not really. But they say it takes two geeks to make an autistic child.

Me: Are Dad and I geeks?

Bob, Lily and Rosie: laughter and loud peels of "Yes! It's science fiction everywhere." Lots of cross talk about all of our collections. And then they got into a discussion of stuffed animals.

Me: Okay, let's talk about autism awareness month. Is there anything wrong with being autistic?

Rosie: Whaaaaat?

Me: April is Autism Awareness month--we wear blue, we go to the walk.

Lily: But, Mommy, I thought you don't do stuff with those people any more?

Me: Which people?

Lily: The people that do the walk.

Me: True, I don't volunteer on the committee. But we are going to the walk.

Lily: Okey-dokey. Are we going to wear shirts with a different message from everyone else to mess with them?

Me: Our shirts say Celebrate Diversity. Do you think that's different?

Lily: I guess.

Me: Bobby, do you remember what I don't like about the walk? Do you remember some signs you didn't like? Is autism a tragedy? (yes, leading, but he hates some of the signs--especially the autism affects sign)

Bobby: Oh, yeah. No, I don't like those signs. Autism is not a tragedy. It depends on where you are born, who your family is, whether it's a tragedy. Autism always has been here. Some are geniuses.

Me: Okay. So what about blue to increase awareness?

Lily and Bobby: Why blue? Why not another color?

Rosie: I love blue!

(Discussion ensues about blue being a sad color)

Me: Different organizations for different diseases and disorders have their own colors. Autism Speaks is blue.

Rosie: How come?

Me: I have no idea.

Lily: Are we an organization? What color are we going to wear? Why is there so much blue? Why is everything blue?

Me: (why did I start this?) So do you like Mommy's going blue for April?

(discussion on blue ensues, everyone talking over each other)

Bobby: I don't mind that at all.

Lily: It's okay as long as it's not for Autism Speaks.

Me: If I go blue for you, is that okay?

Bob: Yeah!

Lily: Sure, that will be okay. As long as it's not Autism Speaks, it's okay. If you don't like them I don't.

Me: (they listen and pick up on shit that surprises me) Okay, why do you think I don't like Autism Speaks?

(Autism Speaks and blue and the fact that Bob is wearing an Autism Speaks tee this morning--conversation between the kids gets heated)

Bob: Because they're money grubbing, some of them.

Me: We've met some really great people who want to help autistic people and their families. You can't just say something is all bad.

Lily: I know. But if you don't like them, I don't like them.

Rosie: Are they sad because they wear blue?

Lily: Blue is sad, so did they choose blue because they think autism is sad or because they like blue?

(Discussion of colors continues)

Me: Some organizations have all the colors but in puzzle pieces.

Lily: So? Puzzles are good. I don't like how Autism Speaks uses one puzzle piece and it's blue; it's like they are saying that autism is lonely and sad.

Me: So that goes back to what is autism to you and what it means to you if I dye my hair blue. If I didn't dye my hair all colors throughout the year, would choosing to go blue in April because it's the most popular conception of autism be bad or good? If we work hard to make people notice what autism is to us, is blue the way to go?

Lily: I don't know. Blue's kind of sad.

Bobby: What about a rainbow? But bright blue is good.

Lily: Blue is sad, but if you're doing it for all of us it's is okay cuz it's not bad. But not the deepest blues cuz those are the saddest. Bright blue like Mommy does is happy. Whenever Mommy has regular hair, it makes me sad. I like her colorful hair.

Rosie: Woof, woof, woof....etc. (I don't know why she spent five minutes barking)

Me: Back to autism. What do you want people to think about autism in April? What do you want them to know?

Lily: It's not bad. Well, remember how you asked if autism was me and I said it wasn't? I want people to know that just because people have autism doesn't mean autism is them. It's not exactly something I am; it's just part of what I have.

Me: Is it like your hazel eyes? Your brown hair?

Lily: Umm, I don't know. Yeah, sort of--it's something I have. Just because I have brown hair doesn't mean I'm brown.

(arguing over brown occurs) 

Bobby: Not all people with autism are sad or depressed.

Rosie: Uhhhhh...But it means you have brown hair. Ughhhhhhhh...

(discussion of what having something means versus being something)

Me: Okay. Wait a minute. Is being smart something I have or part of who I am?

Rosie: That means you are smart.

Me: Can you be both smart and autistic, then?

Lily: Well, I guess so. It makes sort of sense. It doesn't mean you are intelligence, though.

Me: Okay, so could we say that autistic is a trait like intelligent, smart, kind, funny?

Rosie: Oooh, I know, the answer is yes.

Bobby: Yeah!

Lily: I don't really know.

Me: It's just another part of who you are?

Lily: somewhat, kind of.

Bob: yeah, depends on how people see it.

Rosie: yeah. you want a hug?

(discussion of donuts and breakfast takes over)

I have to conclude that while my children might  be diagnosed with autism, it is not, for them, something that has much of a role in their lives (the diagnosis--we all know it impacts them drastically) or in their concept of how they see themselves. It's a word, and it's something I talk about, write about, and that they overhear me discuss, but it's not particularly related to them. I also can see from this conversation that the discussions Bobby and I have had over the years have been taken in, thought about, and he has come to his own beliefs about autism and what it means for him...and for people who think that autistic individuals can't take into consideration others' perspectives? Bobby's contributions in our hour long conversation this morning reflect perspective taking.

That's good, yes, that autism is not paramount in their minds? But difficult as well, because it means that I'm more involved in autism than they are. They are busy living their lives and being themselves, removed from much of the drama that I've been involved in over the last four years. Four years. Holy crap. I've been blogging about autism for four years now!

So, would telling them that a new study by the CDC shows that the prevalence of autism appears to be 1 in 50 mean anything to them? I could launch into another very interesting conversation with them, but they are sitting here, laughing and talking while watching The Hobbit.

It might make them feel less isolated, but I don't think the girls associate their social difficulties with being autistic, so I think letting them know that parents are reporting higher numbers of kids between the age of 6 and 17 in 2011 than in a similar phone survey in 2007 would mean very little to them.

According to the study (phone survey), “School-aged children diagnosed in or after 2008 were more likely to have milder ASD and less likely to have severe ASD than those diagnosed in or before 2007.”

If the parent reports can be taken at face value, there's no evidence that severe autism is growing in prevalence, but that more children, as they get older, are facing issues that result in them finally being assessed and diagnosed: “Rather, much of the prevalence increase from 2007 to 2011–2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.”

Lots of people are blogging about this new number, and people are generating new graphics and using these graphics and the increase to scare people. Autism Speaks is not an exception to this:

"While the “1 in 50” results from this survey do not replace the CDC’s official estimate of 1 in 88 children affected by autism, they add to mounting evidence that large numbers of affected children – and adults – are going undiagnosed and without important services that can improve their lives and enhance their ability to be productive members of our society.
* These numbers underscore the urgent need for a powerful and appropriate national strategy on autism. We need autism benefits to be included in the implementation of the Affordable Care Act!"
Let me suggest that if the new cases are milder, then reacting as if the sky is falling and that we must rush into throwing money at this, at the organizations, at requiring a "national strategy" for autism is overkill. ADD/ADHD affects far more people but I see no panic to cure them. They don't have a month, do they? If they do, I've missed it.

Milder cases. Milder. My Lily is 'mildly' impacted. What she needs is not a national strategy on therapies and cures, but an environment that respects her differences and doesn't pathologize them. She needs tools to navigate the world, and she needs to find her niche, where she can shine. As do we all.

The survey was a large phone survey (nothing like GenRes's pitiful phone survey): “A total of 91,642 NSCH 2007 interviews were completed from April 2007 through July 2008. A total of 95,677 NSCH 2011–2012 interviews were completed from February 2011 through June 2012."

The survey authors' were careful to look at nonresponse bias: "The overall response rate for 2011–2012 (23.0%) was lower than the rate for 2007 (46.7%) primarily due to the inclusion of cell-phone interviews in 2011–2012. Nonresponse bias analyses suggest that, although the potential for bias cannot be ruled out, differences between respondents and nonrespondents should not have a major impact on the conclusions in this report.”

But how do we know the children identified were thoroughly examined? We don't. We're relying on honesty, here, and understanding. It's a risk, given our tendency to misremember, refashion memories, and sometimes just lie. The authors explain how they classified ASDs: “Children classified as having ASD were those with a parent report of ever being told by a doctor or other health care provider that the child had ASD, and a parent report that the child currently has ASD. This measure of parent-reported ASD is analogous to measures of ‘‘parent-reported ASD’’ (9) and ‘‘current ASD’’ (10) used in previously published reports on NSCH-based estimates of ASD prevalence and trends.”

They conclude that “survey-based measurement error was unlikely to have been a major contributor to the observed prevalence increases.”

It appears that the increase is related to later diagnosis: “Among children aged 14–17, almost none (1%) of the children with diagnoses in or after 2008 were classified as having severe ASD, yet 18% of children whose ASD diagnosis was received in or before 2007 were classified as having severe ASD.”

The authors conclude: “Together, these findings suggest that the increase in prevalence of parent-reported ASD may have resulted from improved ascertainment of ASD by doctors and other health care professionals in recent years, especially when the symptoms are mild. Changes in the ascertainment of ASD could occur because of changes in ASD awareness among parents or health care professionals, increased access to diagnostic services, changes in how screening tests or diagnostic criteria are used, or increased special education placements in the community.”

In other words, we're getting better at recognizing the milder traits and getting diagnoses, but that we still have a hard time of recognizing the milder traits when the children are young.

1 in 50.  I don't know about you, but my kids are 1 in a million. Better recognizing the milder end means we can help these kids have, hopefully, an easier time of navigating social situations, understanding that they are not wrong, not broken, not defective, just a little different.

I cannot imagine throwing Lily or Rosie (or Bobby for that matter) into a never ending series of therapies designed to make them look indistinguishable from their 'normal' peers. I'd rather let them live their lives, accepted and appreciated for the unique fascinating people they are. Parenting means I'll cover those areas where they have weaknesses, help them and guide them, but I'll be damned if I'll ever let them get a sense that they are somehow defective.

In short, we will celebrate diversity and work to create communities that do the same. We are all different. We all have challenges and issues. Some of us fight harder to overcome the obstacles our neurology create for us in our rigid cultures. Since changing neurologies is sketchy at best, doesn't it make sense to change society instead to accept those who are different, to be more accepting?

I'm not sure this is tremendously different than the process of removing the stigma attached to homosexuality and transgenderism, at least when we are talking the milder end of the spectrum. The DSM finally removed homosexuality as a deviancy. The APA needs to get their act together and instead of renaming gender identity disorder as gender dysphoria, it needs to recognize that it's a natural human variant. Just as autism is. And ADHD is. And ID is. And our culture needs to follow suit. We need to quit thinking school should be one size fits all. We need to quit thinking that people should conform to a rigid view of what is desirable. Temple Grandin is right: we need all minds.

That doesn't mean we don't work to support individuals, to assist them in gaining the tools to cope adaptively and find their niche. Humane, compassionate cultures should appreciate diversity and find a place for everyone at the table.

Whatever autism's true numbers, does it really matter? The spectrum is wide and encompasses individuals with milder traits and those who are severely impacted. We need to appreciate all of them and offer them appropriate accommodations and assistance. We need to find ways to reduce the severity of autism (and we need to keep acknowledging that there are those who are significantly, seriously disabled and in need of better care and assistance).

Whatever color we choose to embrace in the month of April, if we don't embrace that philosophy of honoring the innate value of all human beings, well, it won't mean a hill of beans, will it?


kathleen said...

i really loved "Just because I have brown hair doesn't mean I'm brown" hahahaha...your kids are just perfectly wonderful...Thanks for going over the "new numbers" rationally...:)

kathleen said...

i really loved "Just because I have brown hair doesn't mean I'm brown" hahahaha...your kids are just perfectly wonderful...Thanks for going over the "new numbers" rationally...:)

melbo said...

Awesome squirrel all round!