in common

 ddg

{Image is a photo of two ducks and a goose. Or three birds.}

 

For a very long time, I struggled with the concept of Brooke having any real commonality with autistic people who were not identified / diagnosed as such until adulthood.

You see, there was no way that my child could ever have gone without being identified as autistic. The first speech therapist who came to the house when she was three took approximately thirteen seconds to refer us to a local autism clinic. It took that neuropsych two hours to offer up the clinical diagnosis of Autistic Disorder, also called, she explained, Classic Autism. It took us a year on the waiting list for Boston Children’s Neurology Dept to come around to what they, too, took two hours to definitively diagnosis as autism.

In school, Brooke needed (and still needs) immense amounts of support, both academic and otherwise, to make it through the day. There was not a snowball’s chance in hell that she could have been passed from one grade to the next without ever being identified as a kid who .. well, needed immense amounts of support to make it through the day.

And so, I (faultily) reasoned, someone who had made it all the way to adulthood without an autism diagnosis really couldn’t have a whole lot in common with my beautiful, talented, amazing, really damned challenged kid.

She had almost no novel speech. She played and socialized in ways that were so far from typical that we were told that she did neither. She melted down under the weight of sensory overwhelm with such constancy that at times it seemed impossible to leave the house. Or stay there. While she was verbal, she was almost entirely incapable of expressing her needs in a way that we could understand.

So while I wanted desperately to find people who could offer some insight into what she was experiencing, I found it pretty hard to believe that a person who wasn’t diagnosed with autism until adulthood could possibly be the one to offer it.

I was wrong.

Very wrong.

Here’s why.

Nearly everyone I know who was diagnosed with autism as an adult WAS diagnosed previously. They were diagnosed with various types of learning disabilities, a laundry list of mental illnesses (some appropriate, many not), and an alphabet soup of just about everything else imaginable.

So it often wasn’t that they weren’t diagnosed, it was that they were partially diagnosed or just plain misdiagnosed. (This is particularly true for girls / women as they, far more often than their male counterparts, are, thanks to scientific, societal and foundational bias, overlooked.)

And so the primary basis of my inclination to discredit people who didn’t have a diagnosis until later in life was, well, discredited.

But that was just the tip of the iceberg. I had plenty of other ways to write them off as too different from Brooke, especially when we were beginning our journey.

Many, if not the vast majority of the autistic folks I meet online have Asperger’s, a form of autism, but one that can appear at first glance to have about as much in common with Brooke’s version of autism as a steak does with a Ferris wheel.

Say it with me …

I. Was. Wrong.

Really wrong.

As I started to dive below the surface I found that despite the differences (even immense differences like verbal vs nonspeaking) there were startling similarities.

I soon became obsessed with finding autistic people and reading everything they offered up. And as I did, I found that some of the mysteries that I’d been trying so hard to unravel with and for Brooke began to reveal themselves.

Not everyone was like her. Some folks’ personalities and interests were so vastly different from hers as to be nearly comical. Some sought sensory input while others spent their lives avoiding it. Some craved the company of others while others thrived on solitude. Some – most – did one or the other moment to moment. Some, like Brooke, often did both at the same time.

People, autistic or not, come in every shape, size and flavor imaginable. So simply being on the spectrum didn’t and doesn’t mean that someone would be exactly like Brooke. But it did and does mean that, in nearly every case, there was something that she had in common with them. If nothing else, they shared the fact that they saw and interacted with the world differently than most. Even if they saw and interacted with it differently from one another, there is commonality in difference itself.

But the stuff that I saw as non-negotiably too differentiating – verbal communicators vs nonspeakers, for instance, well, wasn’t.

The people who arguably taught me the most about my daughter seem to have the least in common with her on the surface.

M has Asperger’s. He was diagnosed as an adult. Words come easily to him. They are his safety, his solace. They are, often, Brooke’s nemesis. And yet, there were and are so many moments in which their internal experience of the world is apparently similar. And the fact that he has the words to describe what she doesn’t yet, well, yeah.

Barb is nonspeaking, or, as she prefers, mute. She is, as per her own definition, severely impacted by autism. Until her teens she had no reliable form of functional communication. She has taught me more than I can ever say.

John

Julia

Zoe

Kassiane

Emma

Conner

Kate

Ibby

So very many others

Not one of the people above really “looks” like Brooke from the outside. Not one of them is exactly like her on the inside. But by writing about themselves, every one of them has taught me something invaluable about her. (And myself.)

Of course no one has taught me more about her than she has. That will never change. But time and again, she shows me that she shares far more with them than I ever would have thought.

In January, I wrote a post called Playing Favorites. In that post, I said the following.

They are people who live life through a lens that is different from mine. They have a unique perspective on autism because, like my daughter, and I’ll say this slowly just to make sure it’s clear …

They … Are … Autistic.

And while some of them may be autistic in [what looks to me like] a very, very different way than my daughter, there are aspects of their experience that will be far more similar to hers than my own. That matters.

A young woman with Aspergers’ once explained it to me thusly (and I hope she’ll forgive a very sloppy attempt to paraphrase): Let’s say I’m a duck and a nonspeaking, severely autistic child is a goose. I’m not claiming that I’m a goose or that I know exactly how it feels to be a goose, but I do know how it feels to be a bird.

I know, wow, right?

I know.

Wow.

Right?

I know it can feel like a huge leap to think that someone who can write an eloquent blog post has enough in common with your child to teach you anything about them. I get it. I really do. But please, if you take nothing else away from this blog, take this. They do. And if we dismiss the voices of the people who happen to have words to describe what our kids don’t yet (simply because they have words to describe it), we toss the greatest resource we have into the wind. And moreover, we show our kids that once they find their own voices, they won’t matter.

That’s not a message I’m willing to send.

17 thoughts on “in common

  1. We can all learn from each other if only that was better understood and recognized by everyone in general. Professionals are reluctant to learn from mere parents..if Mom is a nurse Oh that is worse( that is my world)…….Yet without each other then everything is so much harder…
    We could all learn so much from Sesame Street…oh the people on the street……
    Thank you for what you write as always it came at the right time.

  2. “You see, there was no way that my child could ever have gone without being identified as autistic.”

    Oh, you’d be amazed. The combination of clinician bias/ignorance and parental denial can be astonishingly powerful. Especially in the early 80’s.

  3. Great post. Really explained a lot about parents of autistic children’s reluctance to seek autistic adults out for help. We tend to know so much about different treaments, having been through them ourselves. I once had little speech and was at a special education preschool for it, so I have some background in being treated with unreliable speech as do many of us adults. So many of the great self-advocates also include non-verbal adults such as Amanda Baggs, Amy Sequenzia, and Larry Bissonette. It all comes down to the results that we can’t speak for others because we are verbal or that we can’t relate to certain peoples children. The analogy of the duck and the goose really explained the truth about that well, and that is what I’ve been trying to get people to see for a long-time. Very eye-opening post.

  4. Yours is one of the very, very few “parent” blogs that I read, because nearly every time I attempt to participate in an autism discussion on the Internet with anyone other than my fellow autistics, I am dismissed by people who say “You are NOTHING like my child.” I am dismissed as “too high-functioning.” They say, “You can go on the Internet and type, and therefore you are NOTHING like my child.” If a parent asks, “What should I do to celebrate my autistic child’s birthday,” and I say, “Why don’t you ask your child what he or she wants to do?” I am dismissed by parents who say that obviously I am too high-functioning to grasp the concept that an autistic child would apparently not know what they want to do for their own birthday.

  5. Thank you for this really insightful blog. We would never want to learn auto mechanics from musicians, so why would we want to presume that we have nothing to learn from Autistic adults and instead listen to nondisabled people who don’t live in community with Autistic people?

  6. As an adult-diagnosed woman on the spectrum, I had a lot of feelings about this post. Mostly that I’m happy your daughter has a mother like you, and that I kind of like being a birb.

  7. Thank you for this. These past few days have been kind of a smack in the face for a bunch of autistic adults, who are so, so tired of trying to explain that we are “like your child.” It seems sometimes that there are no NT parents who really do get it. You get it, and that makes me so happy and relieved and grateful that you have put the time and effort into understanding and accepting us as we are. I really appreciate your effort and your words.

    • and thank YOU for all that you do to help parents like me to get it. i promise there are far more of us out here than not. and we are grateful.

  8. I appreciate this post as I was not diagnosed until adulthood. I think comparison can be a slippery and dangerous slope. I am sure many parents can read your posts about Brooke and wish their 11 year old could write emails (even with a little help) and speak to you. No autism looks the same, on the inside or out. As a child I was dx with a speech delay, social anxiety. I was perceived as a really weird kid who was presumed to be a brat because my continual meltdowns were not understood to be due to sensory overload, but being a bad kid. I didn’t “pass”. If I was 3 now instead of the 80’s, I would have been dx immediately and gotten all of the help I needed. I wouldn’t have floundered in school socially, academically and in pretty much every possible way.

    People assume because I have a family I don’t have as many challenges. I cannot hold down a job or handle social situations. My partner shoulders a lot of responsibility regarding bills as I have intense executive functioning challenges. I have severe sensory issues and crippling anxiety. my children are autistic and have severe challenges.

    I hear this a lot, parents who only want to listen to other parents because any autistic who can type or write could not possibly have anything in common with their child. But they are wrong and its a very ableist view, dismissing decades of challenges that were ignored and resulted in bullying and worse. Most of us didn’t “pass”. We were missed, mistreated and in some cases bullied/abused because people did not realize we had a disability and weren’t choosing to respond to certain situations that way.

  9. Pingback: What I’ve been reading – October 2014 | ASD Dad

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s