Thank you, Dr. Wing

When I first began researching autism, I came across the work of Dr. Lorna Wing, a true pioneer in the field of autism research and acceptance. Dr. Wing was a female researcher and psychiatrist at a time when that was a rarity. She was a mom trying to deconstruct her daughter’s elusive condition. She resurfaced the work of Hans Asperger, and renamed "autistic psychopathy" as "Aspergers syndrome" for fear of what the earlier term might connote.

Dr. Wing was an early proponent of the notion that autism doesn't necessarily equal intellectual impairment. And, she was at the forefront in arguing that autism is likely a cluster of underlying conditions with a common core of symptoms, not a singular condition, something many scientists are just now coming to understand.

One could argue she was an early proponent of the notion that autism comes with many gifts, once saying, "I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviors and personalities of musicians and scientists." Sounds a lot like Temple Grandin, I think.

Personally, she was one of the first people I'd heard of who had turned their professional expertise into a lifelong passion in response to a deep need to help their child and others, something I aspire to myself, though on an admittedly much smaller scale.

So it was with sadness that I learned of her recent passing. I am grateful to her and those like her who have set us all in the right direction.

What I've been reading - June 2014

Here are some things I've been reading that you might find helpful, informative, or inspiring. Bury My Son Before I Die. "I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do." Gut-wrenching and brutally honest. Read more

When You're Gone: Practical Planning for Your Child's Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they're gone. Read more

The Obsessive Joy Of Autism. "If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not 'age-appropriate', stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared." Read more

Sesame Street, This is an Autistic Speaking. An adult with autism makes a heartfelt plea to Sesame Street to reconsider its partnership with Autism Speaks, an organization she feels stands in stark contrast to the inclusion and acceptance Sesame Street is known for. Read more

On Education and Communication; A Message to Parents, Professionals and People with Autism. A powerful, hopeful message from Ido, a young man with autism who, though once written off by teachers and therapists, is now proving them all wrong. Read more

I Am a Pushmi Pullyu. A 50-year-old with autism comes to grips with being both an extrovert ("Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist.") who struggles with social situations, sensory issues, and PTSD. Read more

Tips for Encouraging Joint Attention. Fun, easy ways to do just what the article title suggests. Read more

What I Wish Your Child Knew About Autism. Ten things one mom wants you and your non-autistic child to know about her son, Leo. Read more

Out of the Closet. Observations by Ido on all the children who are "new communicators," finding their voice through assistive technologies. Read more

And finally...

Mayor de Blasio and Speaker Silver Announce New Steps to Help Families of Students with Disabilities. Great news for NYC families — like ours — who have struggled with the DOE. Read more

Father's Day wish

2014-06-14-c-beach@2x The thing I want most this Father's Day won't come from anyone but me: I'd like to be the dad I am on my best days (and in my better moments), not the one I am on my worst.

Whose journey is this?

2014-05-28-c-pond@2x

I started writing this blog to give something back.

When C was first diagnosed with autism, I wanted to learn as much as I could. A big part of my research included reading ASD parent blogs, some of which were so helpful that, after a while, I felt I might like to share what I was learning, too.

Over time, however, I was reading fewer parent blogs and more blogs written by people with autism. As my son is still young, hearing from older people with autism was revelatory and inspiring.

And so lately I've been wondering, whose journey is this, anyway?

As someone who now follows autism closely — including the political, social, scientific, financial, and philosophical perspectives — I feel the focus is still mostly on us parents and what we go through, and not enough on the people who actually have autism.

Or, as Tommy Christopher recently put it, "Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them."

I'll continue to share my experiences as a parent, some of which are difficult. But as I write about this journey, I want to be careful to make it clear that this is not a tragedy, and we are not victims. Yes, the system is broken. Yes, there are challenges, just as there are challenges in any life. Yes, I have fears and frustrations.

But mostly I'm happy because my son is awesome, and on a daily basis I consider myself damn lucky to be his dad.

...

I started writing this blog to give something back.

I wanted to help parents just as I'd been helped by others. That hasn't changed. But what I've come to realize, and what I hope to share with others, is the perspective that what matters most isn't us parents, but our children...our children who will become teenagers and then adults.

This is their journey, and we're just along for the ride.