"I Will Die on this Hill": Where Was This Book Twenty Years Ago?

 (Or any decent reading on autism for that matter. Man, Doctor Google was cruel in the early 2000s!)

I Will Die on this Hill was exactly the book I've been needing, as someone who often feels uncomfortably caught in the Uncivil War between autistic adults and parents of autistic children. (With I admit, perhaps from being so late diagnosed myself, a tendency to sympathize with the parents.) It just lays out so perfectly how both sides can listen to and learn from each other, and why they need to.

I want to save some quotes I found especially resonant, in no particular order (and somewhat edited to spare my fingers.)

I live at the convergence of two dualities in which parenting autistic children overlaps with being an autistic person. Sometimes these factors "play" well together. Other times, they seem to compete and/or work against one another. In either scenario, overall society is not as accepting nor as accommodating as we need it to be, and that can be hard. I have learned that being autistic does not magically grant me a sense of comfort if my child is hurting and in need and I can't always discern what's going on so that I can help. Similarly, being a parent of autistic children doesn't automatically conjure up a personal, invisible barrier shielding me from the realities that autistic adults without children face.

Yes. All of this.  (A frequent wry moment from my visits to parent support groups -- being the only one there who can't find someone to talk to.)

In practice, a social model of disability referencing a relational worldview would treat and autistic child quite differently than we currently do. The social model would explore a child's needs in a way that builds trust... Rather than using deficit-based language that makes children feel bad (yes they hear it, and yes they feel bad), evaluators would use affirming, strengths-based language while identify needed support.

"Yes they hear it, and yes they feel bad" -- oh man, we screwed up so royally in this regard. Take it from me, a person who seems in "their own little world" is still in yours.  

Autistic adults need to internalize the fact that, overall, non-autistic parents of autistic children are universally whiny, narcissistic 'autism warrior' martyrs who resent their children--even though youmight perceive them as such sometimes. Neither are they inherently angelic 'special' parents who should be lauded for their very existence, even though you might percieve them as such sometimes.... Regardless of how autistic adults might feel about non-autistic parents of autistic children, these parents ain't going nowhere--not when it comes to their children whom they love. No matter how much advocacy you do and how much you care, that parent and their children are a package deal, period. 

Your values do not have to change, but what can change is your perception of anner of engaging with the people who matter so much to the children in our community--their families, which include non-autistic parents. You must remember that they are human beings, who might not always say things the 'right' way, who are surrounded by hordes of misinformation, navigating circumstances in which they have no blueprint and no intrinsic knowledge, all while trying to ensure their children are cared for and have their needs met.

I don't want this to get unreadable, so going to stop here and hopefully do a part 2 or more.  

 

30 Days of Autism Acceptance, Day 4

Day 4: Reactions to 'coming out'

I don't have much to say on this topic, because mostly I don't. I've told Twitter and my immediate family. My therapist thinks it would be good to tell my doctors, and maybe it would, but I just can't face it. I hate being questioned and I know this would bring on a barrage of questions, and probably a lot of disbelief. I had enough of that when my son was little, and I couldn't get anyone to take my concerns about him seriously.

30 Days of Acceptance Day 3

My diagnosis/discovery story:

My story is boringly similar to other adult-diagnosed autistics. I had always felt different and had a hard time connecting to people -- and though I didn't really realize it at the time, was prone to meltdowns. But I had many issues to attribute this to: Living in a counterculture; moving around constantly; a childhood filled with neglect at best and abuse at worst.

And then I had a child, and endeavored to give him the most secure, loved, comfortably middle-class life possible. Nice home, which he's lived in since he was born. Loving parents. Christmas and Hannukah and Easter and Passover. Plenty of everything, but not to excess. Right out of one of my favorite children's books.

And nonetheless, he was basically me. The sensory needs, the anxiety, the odd freakouts. Like me, he was very happy and friendly and open when young, and then grew lonely and closed off and suspicious. Like me, he was intelligent, but had some communications issues. (I was a late talker, which no one thought anything of at the time.) Like me, he had a desperate need to chew on things. (I am so envious of what's known and available for this now. I chewed on my hair, the hands and feet of dolls, and pen caps. I hate to think how many chemicals I ingested.) Like me, he had a much easier time getting along with adults than other children.

He was diagnosed when he was two, so I had plenty of time to read about autism and notice all the ways in which I had been similar. I sought out an autism-friendly therapist, not really sure if it was for him and me. As it turned out, I started seeing the therapist and they diagnosed me. (I sometimes feel guilty about this, for "hogging" my therapist, but I'm not sure my son would be open to it anyway.)

30 Days of Autism Acceptance, Day 2

Day 2:

What I love about being autistic is... hmmm. This definitely requires some thought.

I love the pleasure I get from stimming, especially visual stimming. I love sensory experiences, though proprioception issues have ruined some of them for me. (Spinning and swinging both now nauseate me.) I love having a good memory and hate that I'm losing it as I get older.

And I love having insight into my son's needs.

30 Days of Autism Acceptance Day 1

(I don't know who to credit for this, but I got it from AutisticZebra.)


Intro post:

I love challenge prompts. Usually I use them for reading, but I hope this one will spur me to do more blogging. I'm already behind!

I asked my son if he wanted to join but looks like it's just me.

Crosspost: On the Edge of Gone by Corinne Duyvis

(I originally wrote this for my reading blog, then realized it would make sense to put it here as well.)

I'm having so many thoughts and feelings while reading this that I decided to write a reaction post as I read, rather than try to do a traditional review.

The story is narrated by Denise, a biracial autistic teen living in Amsterdam. It opens as the earth is just about to be hit by a comet. Denise and her mother are late leaving for their assigned shelter, because they're waiting for Denise's missing sister, Iris.

-- I wonder if the author wrote this partially to address her own fears about how she might survive as an autistic person in a cataclysmic disaster? I know it's something I've thought about a lot myself -- one of the reasons I'm really not attracted to dystopian fiction -- and especially now that I have an autistic son.  When I told my husband the premise, that's immediately where his mind went and he thought the book would be too scary to read.

(One of my favorite stories is John Varley's The Manhattan Phone Book (Abridged). You can read it online. In it he writes,

"We all love after-the-bomb stories. If we didn’t, why would there be so many of them? There’s something attractive about all those people being gone, about wandering in a depopulated world, scrounging cans of Campbell’s pork and beans, defending one’s family from marauders. Sure, it’s horrible, sure we weep for all those dead people. But some secret part of us thinks it would be good to survive, to start all over.

Secretly, we know we’ll survive. All those other folks will die. That’s what after-the-bomb stories are all about."

Not me. I have never believed that. In my scenario, if I survive, I will undoubtedly die shortly thereafter.)

-- Denise's beloved missing sister is a trans woman. This worries me in a post-apocalyptic story. (It turns out not to be an issue at all.)

-- (32%) I appreciate the nuance of this portrait and it feels really well balanced. Denise is realistically having trouble dealing with stress and melting down, but she's also contributing. She's neither SuperAutistic Girl or Autistic Robot Girl.

--  (37%) "It's the end of the world; I knew I would have to change. "

I pondered this sentence for awhile. It seems an ableist point of view. I guess Denise means she will have to be really brave? To do things that are very hard for her? Does she really think she can just decide to change?

-- (60-something%) This plan is so messed up. Does no one think about what it will be like to spend the rest of your life stuck with people who will utterly hate you?

-- The moral ambiguity in this scenario is excruciating. I hope the story will find some good way to resolve it, but I can't imagine what.

-- Oh. Now I understand what the earlier thought about needing to change was about. It is an ableist point of view, because it's internalized ableism. Denise thinks she has to be more "normal" and useful in order to justify her existence in the post-apocalyptic world.

Ending -- Wow. Just wow. I'm so impressed with how this played out. It's an amazing book. I wish I could read it to my son without scaring him to death. This is why #ownvoices matter.

Rad

Today I came across the RAADS-R, a diagnostic tool for assessing people who may not display more obvious signs of autisms. Although it had some questions that were difficult to parse, I really appreciated the fact that it makes a distinction between childhood and adulthood feelings or behaviors. So many times I've taken autism quizzes and had the response, "Well, I was exactly like that when I was a kid..."

It's really good to have a diagnostic tool that acknowledges that autistic people change and develop over time. Lack of awareness of that fact is destructive and helps contribute to a lot of chicanery in autistm "treatment."

Accessible

My mom always speaks admiringly of how well my son expresses his feelings.  I always had tremendous difficulty talking about what was going on with me; she's told me that once during a very bad time she broke her own strict rules about privacy to read my diary but it was no help at all. I didn't even write about my feelings. Possibly I didn't even understand them myself.

Son has always been encouraged to understand and express himself, with additional expert guidance since he was 3. Today I noticed an unexpected benefit of this: when you have words to understand your own feelings, it's much easier for someone else to explain their feelings to you.  Telling him "please be quiet because your dad is stressed" brought out frustration and stomping. Reminding him that noise is one of the worst things when he's feeling stressed brought peace and a loving apology.

He absolutely has empathy, no question of it. As with so many issues regarding disabilities, it's just a matter of the right access.

Just As It Should Be

A little over a year ago, I started blogging about autism by writing about my son's uncomfortable reaction to an Autism Speaks fundraiser at Toys R Us.

Today, my son is working on a youtube video about how autistic people are treated in the media.

He's speaking for himself now.

Link

I think this post in the #IAmNotKellyStapleton flashblog is one that gets beyond anger to make valid points: First Do No Harm

"How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.

How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed."

I'm Miserable, And You?

The phrase "How are you?" makes me deeply uncomfortable. Although I've trained myself to answer in a non-committal way -- having, after decades, finally learned that it's not really a question and it's not supposed to have a genuine answer -- I still have trouble reciprocating as I'm "supposed" to. Every time I make myself say, "Fine, and you?" during a business transaction, I die a little inside. My unconsciously developed preferred method is to deflect with something true and generally acceptable: "How are you?" "Okay... isn't it hot today!"

I was reminded of this today when a poster on Twitter, who's recently suffered a terrible loss, talked about it. What a horrendous sting it is to hear that at a time when you're in great pain, from someone who doesn't really care about the answer and whom you probably wouldn't want to discuss your grief with anyway.

How very fucked up it is that autistic people are trained to behave in socially acceptable ways that are so messed up to begin with. "Welcome to the neurotypical world, now start lying!" I do understand the need for some social lies, but it's perfectly possible to be polite, even friendly, towards someone you have a transaction with without needing that false interaction.

This is Brilliant

By lovely synchronicity, I just ran into this video which relates so well to my last two blog posts.

It really confirms my feeling that we were right to cancel ABA, and that losing that huge stresser is probably a big part of why my son is doing so well now.

Where to Put Our Support?

If you're boycotting Autism Speaks, how do you find alternate charities? Here's one personal account that offers suggestions.

The straight up Autism charities that exemplify Nothing About Us Without Us are actually run by Autistics. These are Autism Women’s Network (AWN) and Autistic Self Advocacy Network (ASAN).  Autism Women’s Network is working hard on getting together some more on-the-ground initiatives, to get money and resources back to the right people who need it. I know this because I am on the board now.  Autistic Self Advocacy Network has created a sea change in the way Autistics are able to see ourselves and come together in action, as well as carve a place for ourselves at policy tables, even at the very highest levels. This has literally changed the world for me and many people I know. I think ASAN is also looking into a grants program. Both of these groups increase our dignity and well-being every day without wasting good people’s money lining greedy pocketbooks or financing harmful ad campaigns or research into preventing us from being born. Both of these groups are bona fide what a charity should be, and growing and doing more every moment of every day with your help.

Functioning and Quality of Life

As a follow-up to my last post, this very interesting post goes into some more of the issues with assessing autistic people as high or low functioning:

For autism research, measures of success and function might better be tied to what is, after all, considered to be a core deficit of autism: social communication challenges and impairments. For people like my son, the answer to the question, “Is he high functioning?” isn’t the one the doctor probably has in mind. Yes, my son has good cognitive skills. But his ability to respond to cultural and social demands and expectations is what defines his functioning — and his autism. The doctor should really ask my son, “How satisfied are you with your quality of life?”

 We had a prime example of this recently.  My son is doing very well in piano class. His class was performing at an evening concert, and I was so happy that this was something he could participate in, with all the other kids.

We dressed up nicely, even getting him into a button-down shirt, and arrived at the scheduled time, only to discover that the concert was in progress and children were already at the keyboards and there was no empty spot. My son, being faceblind, couldn't tell if it was his class or a different class. He stood there desperately flapping, trying to get the attention of the teacher, but it was dark and noisy. By the time we established that it was his class, it was all over. And he wondered if he'd been deliberately left out because people thought he'd ruin the concert.  When you feel freakish a lot of the time, your mind tends to go to places like that.

It turned out that there were specific verbal instructions which my son missed, because he wears headphones in class. Or possibly because he spaced out or got distracted. Why his freakin' AIDE didn't make sure he got the info... in any event, the school let him down. And my son was left not feeling good about the fact that he can play piano well, but lousy about the fact that once again, everyone else knew something he didn't.

High and Low Functioning are Meaningless Terms

One of the issues highlighted for me by the recent Flashblog was the desperate need for better vocabulary around autism. We commonly use the terms "high-functioning" and "low-functioning" and it's becoming ever more clear that these terms are meaningless.

Dozens of autistic people contributed thoughtful, well-written posts about being autistic.  What we don't know -- unless they tell us -- is that some of those people are writing those posts in diapers. Or had a meltdown that left them incapable of speaking last week. Or are never able to speak at all without technological assistance.
 
Some people are skeptical about these bloggers. And certainly the potential for deception is there. But my son has a youtube channel, which I check out periodically. It's always kind of... confounding. Videos of himself show the boy I see the most -- smart, cute, but decidedly still a little boy, much younger developmentally than his biological age. Visually oriented videos demonstrate technical skills worthy of an adult. The comments he leaves are the most confounding of all: they sound like an average teenager years old than he is. They tend to be on the blunt, even rude side, but that's pretty much normal for youtube comments.

He's at his most "autistic" when he's at school, trying to process too many voices and too many unwritten rules. So was I.

This is one of the reasons I have no trouble believing that autistic adults who write intelligent blog posts are "low-functioning" in real life.  Technology and the internet make use of what are often an autistic person's greatest areas of competency, and eliminate a lot of barriers to communication. Many autistic people have a voice now. It's time to listen to them.

Autism Really Speaks

For more information on why many in the autism community are protesting against "Autism Speaks," see this joint letter to their sponsors, co-signed by numerous disability organizations.

ETA:

Have a look at Autism Speaks' Charity Navigator ratings.