My Autism Story: Shannon Has a Son on the Spectrum

Jeanne Sager
Tweens & Teens

Photo from Shannon Des Roches Rosa
Shannon Des Roches Rosa is a self-described "happy science-loving liberal geek," raising three kids with her husband in the San Francisco Bay area.

But she's better known on the web as Squid Rosenberg at Squidalicious, the oft hilarious, always compelling blogger about autism and parenting since 2003 and community editor for parenting kids with special needs at BlogHer.

That's because of her three kids -- Isobel, Leo, and Mali -- third-grader Leo is on the autism spectrum. She shared her story with The Stir in honor of Autism Awareness Month.

How old was your son when you first suspected he might have autism? What were those initial signs?

Leo has always been happy, loving, and sweet, so at first we didn't think anything of his talking less than his precocious chatterbox older sister. A visiting pediatrician friend pointed out Leo's lack of joint attention and social disinterest when he was 20 months old, but we were in denial and didn't get hopping until he was 2, when his nursery school teacher suggested we have him evaluated. Everything snowballed from that point. We had a full-time home ABA therapy program in place by the time he was 2 1/2.

In those first moments when you found out his diagnosis, how did you react? And how did that reaction change over time?  

Like I wrote, denial. Then anger and depression because of my expectations and ignorance -- our culture teaches us to expect perfect neurotypical children, and to pity or (tacitly) avoid those children who don't fit the mold.

All I'd ever heard about autism was horror, horror, horror, Rain Man, horror. I'd never heard of, never had any interaction with accepting, complicated-but-happy autism families like mine has become.

What is his exact diagnosis? And what does that mean in laymen terms?

Leo has the standard one-size-fits-all autism stamp. Which, since "autism" means something different to every person who has that label, tells you very little other than that his social skills need work. He isn't much of a conversationalist, but speaks "fluent requesting."

He's an amazing visual thinker, like many people with autism -- he spots and fits jigsaw puzzle pieces much more quickly than anyone else in the family. He's very focused -- when he's targeting an object or idea, it's not always possible to distract him.

But he's also usually better-natured than his sisters, in terms of going along with what the family's doing, unless we're in chaotic or noisy environments -- those can overwhelm him, and he sometimes acts out.

What are three things you wish someone would've told you about autism that you had to learn on your own?

  1. Your child's own wonderful self should be your first priority. His or her autism may loom large, but it's secondary.
  2. No one can predict -- or should limit -- the future for any child with an autism diagnosis
  3. Be skeptical when it comes to autism treatments and therapies -- don't try something on your child just because you really, really want to believe in it.

What or who has been your greatest resource for information and support during this time?

We've been so fortunate -- Leo has had the same home (and now school) program supervisor since he was 2. She's constantly training us as well. Our families are very supportive.

And I'd be lost without the communities we've become part of, both online and offline -- the people who get it. The Internet has been my autism classroom for the past seven years, almost like reliving college and grad school in terms of mind-molding and knowledge-flow-harnessing -- though it still can't compete with the immersive intensity of books like Unstrange Minds and Gravity Pulls You In.

What's been the most challenging part of dealing with a child with autism?

I'd probably rephrase this question as: "What's been the hardest part about your child having autism?" although I've probably used the same phrasing in the past.

The biggest challenge is seeing my son want to, need to communicate and not be able to fully do so. He and I both feel powerless, and he gets so frustrated -- it's heartbreaking.

But he's starting to learn to type and read, and I have hopes that this new wave of AAC (Augmentative/Alternative Communication) applications for iTouches and iPhones will open up new communication opportunities for Leo and his peers.

Tell us something about Leo that's special or unique that you love.

Leo is capable of more pure joy than any child you'll ever meet.

Finally ... the debate around the cause(s) of autism is very heated right now. What do YOU think causes autism?

I don't think there's any one type of autism or cause, frankly.

In Leo's case, I suspect a syndrome that hasn't yet been identified. I keep encountering people whose faces look uncannily like his -- regardless of race or age -- and who have similar autism symptoms. I suspect these people have a chromosomal disorder similar to Fragile X -- which itself was part of the general "developmental delay" pool until scientists identified consistent chromosomal defects in kids with similar appearances and symptoms sets in the mid-'80s.

I also think autism can be inherited. Kids with autism often have parents and relatives who are fairly quirky -- sometimes an official diagnosis, sometimes a smattering of traits.

As for those whose autism doesn't qualify as chromosomal or inherited -- I don't believe vaccines cause autism, but I wouldn't be surprised if environmental chemicals have been affecting development.

Either that, or they live really close to someone else who has autism.

Read More