My Thoughts about Autism and Cures

A lot of people are talking about the New York Times article that explores whether or not people with autism can be cured, and if so, why some seem to and others don’t. Can it be ascribed to parental and therapeutic influence? Or are some kids just destined from the start to be “autism-free” one day, and others aren’t? And even if you can cure people of autism, should you? Does anyone have the right to decide what constitutes a happier or more productive life for anyone else?

I’ve been thinking about all this and trying to put my thoughts into some kind of coherent form. Not sure I’m there yet, but here goes:

I believe we have to accept and love the children we are given. I also believe we should teach them the things we think will help them along their way. I don’t think that these two beliefs are mutually exclusive. For example: I have a daughter who isn’t academically inclined. We get it. We moved her to a less academic school and don’t ask her to take challenging courses. But when she has a test coming up, I encourage her to go to her room and study for it. Sometimes I even insist on it. Does that mean I’m trying to negate who she is as a person? That I want her to be something different from who she is? Nah. I adore her. I’d just like her to make a connection between working a little harder and doing a little better, so that for the rest of her life, when things are hard, she thinks, “I’ll just work harder” instead of “I can’t do it.”

Teaching your children is part of parenting. And identifying the things that are hardest for them and trying to find ways for them to be able to do those things–that’s also part of parenting. And recognizing that there are limits to what you can or should teach your children . . . also part of parenting.

Do I believe that autism can be cured? No, actually, although I’m not a doctor or a PhD, so there’s no reason to listen to me. I’ve simply come to believe that whatever the neurological damage is, it’s there to stay. Do I think many children on the spectrum can learn skills that will help them navigate the world around them? Yes–but that appears to be easier for some kids than for others, so no parent should feel bad if his child can’t learn the skills another child can.  Do I think our society should be more accepting of those who are different, in subtle or overt ways, and stop trying to impose a homogenous standard of behavior on everyone and judging everyone who doesn’t conform to it?

Abso-fuckin-lutely.

My son is 22 now. He was diagnosed with autism at 2 1/2 and had behavioral and speech therapy for years. He is finishing up at a four-year college where he has majored in graphic design. He’s a good person and handsome as can be and very talented. But he struggles on a daily basis, in ways that he himself has started to explore in a blog he started. I’m glad we worked so hard on his language in those early years because he has the words to tell us how hard it is for him, how hard it’s always been. And by telling us, he’s teaching us. I just hope people are ready to learn.

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Oops, quick change.

The live chat (see below) is now on THURSDAY, instead of Wednesday. All of the other info is the same. Cheers.

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Live Chat

Hey, guys, I’ll be chatting live online with Rachel Silberman over at Reading in Twilight tomorrow, Wednesday, July 23 at 7 pm EST, 4 pm here in LA.  Please join us and also tweet any questions for me you might have ahead of time to #ClaireLiveChat.

Some possible suggestions: Was I nervous about changing Austen’s ending to Mansfield Park when I updated it in The Trouble with Flirting? Is it true that my cat bites my ankles when she wants me to feed her? Do I write better fueled by Krispy Kreme donuts or Starbucks’ spinach-feta wrap? Do I know ahead of time who’s going to be killed off on the Simpsons?  Does my non-fiction writing about autism influence my fiction? What advice would I give would-be writers? Where did I put my sunglasses? (Actually, could someone else answer that one?)

Join us! You can ask me anything and I WILL ANSWER.

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a presumption that once our eyes watered

I have a bunch of pages stuffed into a file drawer that are covered with my high school attempt at calligraphy.  I never mastered the fancy writing, but I come back to those pages every couple of years to read through all my favorite quotations. Because that’s what they are: a collection of phrases and paragraphs and stanzas from the books and poetry I was reading back then. They’re pretty far ranging–I have quotes from Thomas Mann, Colette, Fitzgerald, TS Eliot, among others (I read good stuff back then; not so much now). Some day I should just type them up and share them here.

Anyway, there’s quite a few from Tom Stoppard, whose plays my father loved and whom I loved back then too (a painful realization: I haven’t reread any of his plays in decades). I’ve always liked this one: “We cross our bridges when we come to them and burn them behind us, with nothing to show for our progress except a memory of the smell of smoke, and a presumption that once our eyes watered.”

But today I found myself remembering a different quotation, one which, like the above quotation, comes from Rosencrantz and Guildenstern Are Dead. 

I was thinking about how anxious I’m feeling about sending my daughter away on a trip with friends for over a month, and then I reminded myself that I was being ridiculous to worry and that I was almost her exact age when I went off to college, and then I wondered whether it had been hard for my mother to watch me go, and then I had two thoughts at the same time, which is weird, but really happened, and the two thoughts were:

1. I’ll have to ask Mom how she felt back then, and

2. Mom’s been dead for an entire decade.

The two contradictory thoughts clashed and the second one destroyed the first one like rock beats scissors, and I felt it like a physical pain.

And that’s when the Rosencrantz and Guildenstern quote was suddenly there, not full-blown or anything–it was choppy and came in bits and pieces and I had to look it up later to get it exactly right here–but still, I heard the words. I even felt them.

“No, no, no…you’ve got it all wrong…you can’t act death. The fact of it is nothing to do with seeing it happen – it’s not gasps and blood and falling about – that isn’t what makes it death. It’s just a man failing to reappear, that’s all – now you see him, now you don’t, that’s the only thing that’s real: here one minute and gone the next and never coming back – an exit, unobtrusive and unannounced, a disappearance gathering weight as it goes on, until, finally, it is heavy with death.”

Stoppard got it right. The initial disappearance of someone you love gives way to something else, something that isn’t at all dramatic or exciting or public, something small and private and personal, which stays and only grows with time, and which, for me, pretty much boils down to one simple, sick feeling:

I want to talk to her, I can’t, she’s not here, she won’t ever be here again.

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A post by my son on what it feels like to identify as autistic when there’s so much negativity out there about autism

This piece was originally published on my son’s website. He is 22 years old and was diagnosed with autism when he was three.  He’s saying some very important things here and I hope people will listen. It is not okay to try to promote your organization or ideas by vilifying people who are on the spectrum. If you’re part of a group that is putting out the message “Do this thing we’re telling you to do, or your child might end up with autism,” you are actively harming many people who crave societal acceptance. (And odds are good your claims have no scientific validity.) But I’ll let my son speak for himself.

How it feels to be part of an identified “group” of people…
Autism is in the media more so than ten or fifteen years ago. With the 2000s tech revolution and social networks in the mainstream, it has been easier for organizations to promote Autism in recent years. Today, practically everyone knows the word, “Autism,” unlike ten or fifteen years ago when mostly parents and experts knew the term. It’s easy to say that Autism is a well-known and well-documented cause.
Despite the tech innovations, there have been several PR issues and controversies that have shed Autism in a bad light within the last five years. From the anti-vaccination movement, to organizations with false advertising, to celebrity moms (not naming names) saying “Autism is a curse from God.” And there are even organizations, including Autism Speaks, that do great fundraisers to support Autism research, but advertise Autism in an unflattering light. Many people I have known have even said things to me like “you don’t know how to participate in conversations,” “why are you even here?”, or “what you are saying makes no sense.” And that honestly worsens the issues of negativity between “normal society” and Autistics. Oh, and, the suspect of the Santa Barbara shootings from over a week ago was suspected to have “Asperger’s,” on the media, but many experts in Autism Research believe this was a misdiagnosis.
The point that I’m trying to convey in these posts is that while Autism can be considered a disability, many people on the Spectrum certainly don’t identify themselves as “cursed” or “disabled.” In fact, there are actors and actresses out there including Dan Aykroyd and Daryl Hannah, who are known to be on the Spectrum and have had very rewarding lives! Many other people with Autism I have met are brilliant in many areas, and some of them are certainly the best artists, programmers, or writers out there, who work probably harder than the average person!
Just like being gay or another race, which are examples of the types of groups constantly attacked, being Autistic is EXACTLY the same thing. I even have a brother who is gay, so I can certainly say that Autism is being “attacked” by some areas society just like gay marriage is. Some areas of society, on the other hand, have recognized the importance of gay marriage very well. From my experiences seeing the media and other organizations shed a dark light on Autism, only saying negative things about it, honestly really upsets me, and probably several other Autistics out there. If you think about it, many Autistics are being victims to bullying, peer pressure, and sexual abuse. Autistics notably have issues with social skills and communication, so it’s definitely hard for them to stand up for themselves. Even from what I have experienced in life, I am a pretty sensitive person and even when people tell me what I’m doing wrong in a social situation, I get uncomfortably self-conscious and feel worse. It can get worse to the point that I start throwing fits with a lot of profanity. This gets worse and worse to the point that I start losing touch with close friends. It makes me feel even worse about being on the Spectrum, to be brutally honest.
So I would just like to ask you all a kind favor and when people whom you know on the Autistic Spectrum are in doubt about their lives, please reach out to them and don’t ignore or make them feel worse about themselves. Even more so, please promise that none of you readers will victimize Autistics in harsh ways. Also, it would be great to recognize when you know the media is advertising Autism and what can “cure” it falsely and make sure to NOT buy what they are saying.
I know this is really a lot to take in, I really appreciate your kindness and patience reading this piece :)

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You’re Not on the Side of Decency

This should be obvious, but I keep reading news stories that make it clear it’s not, so can we all just be straight on one simple thing?

Hurting other people is bad. Not hurting them is good. If you hurt someone who has done nothing to harm you, you are the sinner, the criminal, the perpetrator, the asshole.  Not the person who wasn’t hurting anyone. You.

I don’t care what your beliefs are. I mean, seriously, I don’t care. Your beliefs are irrelevant to my life. Keep them to yourself. I don’t care whether you don’t like people who look a certain way or who lead a certain kind of life or whose beliefs don’t line up with yours: if you’re the one doing the hurting, you’re the villain.

There is no justification for cruelty. There is no justification for criminal behavior. There is no justification for bullying. There is no justification for hurting someone who isn’t actively threatening your safety.

You are not on the side of goodness, righteousness, religion, or decency if you’re doing something cruel. Period. If you’re trying to convince yourself that you’re beating up or bullying someone in the name of any of those ideals, you are a hypocrite and a liar and you’re just trying to find excuses to be the violent and sadistic sack of shit that you are.

If you hate people who are different from you, you’re an intolerant bigot, and if you want to hurt people who are different from you, you’re a dangerous intolerant bigot. You are the evil in this world, no matter what religious text you quote from or what jingoistic phrases you spout. You are the force that tries to destroy our country. Not the people who come from other places or who have different customs or who don’t follow your narrow-minded ideas of tradition. You.

Maybe we can’t get evil, small-minded bigots to stop doing the horrible things they do but we can at least call them  on their hypocrisy and keep reminding the world that evil is as evil does.

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The Narcissistic Parent of the Special Needs Child

So in her new autobiography (no link–please don’t buy it), Toni Braxton apparently spends some time speculating that her child’s autism may have been God’s punishment for an abortion she’d had. I’ll leave others to argue the theology here. I’ll even let others discuss the inarguably revolting, small-minded, bigoted and hurtful assumption that autism is a punishment. I’m just going to focus in on the mind-boggling narcissism of that statement.

So this is all about you, is it, Toni? Your previous behaviors in some way influenced the child who was born to you? Does that mean children are meted out according to how we’ve conducted ourselves in the past? “You once swore at your mother and shoplifted–you get a kid with a learning difficulty”; “You, over there, nice work on your college thesis! You’re going to get a smart and adorable little girl, just like you always wanted!”

Oh, for fuck’s sake . . .  (Excuse the language, but some things are so ridiculous they deserve a hearty “for fuck’s sake,” don’t you agree?)

As my smart friend Angie pointed out, this is really just the flip side of the people who say that special needs kids are “bestowed” on those parents who are so patient, kind, and strong that they can deal with it. If you’re a mom struggling with a tough situation, feel free to think that–I’m of the “whatever gets you through the night” school of parenting. But here, on my page, can we all agree that our children aren’t a referendum on us and our behaviorbut people in their own right? That no one is handing out children based on our past activities or some secret personality test?

Here’s the deal: when you decide to have a child (or, you know . . .  just have sex without using birth control), you’re signing an invisible contract, one with a lot of small print on it. And that small print says that there are no guarantees about the kid you’re going to have. If you want baby perfection, get a doll. Real kids come with real problems and real surprises. From the moment the sperm hits the egg, you’ve given up control (actually, if you were doing it right, there was a fun loss of control right before the sperm hit the egg, but that’s not really the point here).

That baby is going to come out of you with his own agenda, needs, and brain. (Any parent who’s tried to get a newborn to sleep at night should have learned this lesson already.) He is not a reflection of you. She’s not a reward for your great patience or punishment for your evil deeds. He’s not here to fulfill your unfulfilled dreams. She’s not here to reflect glory on you all the days of your life.

Here’s what the real deal is: by getting pregnant, you agreed to love and look after this child for as long as you both are alive. And your job is to see your child for who she really is–imperfections and all–and to make her the absolute best, most realized, most comfortable version of herself she can be. For some kids, that may require multiple trips to the hospital; for others, it may include a lot of speech and behavioral therapy; for others, it may be more of a “sit back and let him rip” kind of situation.

You give your child what your child needs, and you give it with love and acceptance. This is your child. He’s not a good conduct medal and he’s not a punishment and he’s not a way to prove you’re a better mother than your sister. Look at your child. Know your child. Love your child. Teach your child. Be there for your child. And maybe hold off on buying any more Toni Braxton songs on iTunes.

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