Photo by Me-Liss-A (flickr.com)

Replies continue to come in on the question posted on another forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Have empathy,” said one respondent. “”He’s still family. Don’t forget he exists,” said another. And still another: “Open your eyes!”

“Do not be afraid,” one reply said. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

“My wonderful Aspie is now 16 years old, and we have overcome so many hurdles,” one respondent said. “If I
could turn back to yesterday, these are some of the things that I would have said: ‘It is not my lack of discipline that has made him this way and I don’t appreciate being told that is it poor parenting.’ ‘It’s okay that you didn’t invite me to family get togethers because my child is too high-strung. Someday when he is older you will regret your decision to exclude us all those times’ (and they did regret!). ‘Yes, I have to remind him to say “thank you” when you give him something. It’s not that he is spoiled, rude, or ungrateful. It’s just that sometimes he forgets our social standards.’ I couldn’t stop at just one comment either!”

With an eye to celebrities and debate: “Please stop judging our love for our child based on our (un)willingness to try every anecdotal therapy you hear about from Jenny McCarthy or Oprah.”

“Love him because he’s different,” said another. “He’s no one to fear and deserves the same love and respect as his siblings.”

I’ve always liked to think people liked me because I was different.

***

Autism Speaks Family Services has released its Autism Safety Project, which provides first responders with information and guidelines for communicating with individuals with autism in emergency situations.

The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?

Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:

“Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”

Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl.

Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ’sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”

Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.

The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:

Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to.

I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?