A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability.
I. Theory, Background, Questions and Concepts
What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.
There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:
“My child is severely autistic and will never be able to live on their own.”
“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”
The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.
Consider this scenario:
My elderly neighbor lives alone.
Based on this statement, you’d assume he’s independent, right?
How about this scenario:
My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.
Is he still independent? Dependent? Something else we’ve failed to consider?
Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.
Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives? Continue reading (In)Dependent→
When I was researching language pragmatics for my recent echolalia and scripting post, I came across an IEP goal bank. For those of you who aren’t familiar with these terms, IEP stands for Individualized Education Plan, which is a personalized document that describes an educational program designed to meet the needs of a child who is enrolled in special education. It includes, among other things, information about current performance, annual goals, services, accommodations, and progress.
Presumably to make these unwieldy documents easier to create, there are databases (goal banks) of scripted goals and objectives (sub-tasks of goals). One can search the goal bank for items that can be inserted into a child’s IEP with a small amount of customization. Of course, I couldn’t resist digging through the databases to see what types of goals autistic children are being asked to meet.
It quickly became obvious to me that I, as a 45-year-old autistic adult, could not consistently meet many of the social and communication goals and objectives that autistic elementary school students are expected to achieve. As I kept digging, patterns began to emerge. Continue reading Unreasonable Goals→
Accommodations make life easier, but as Otterknot pointed out in a recent comment, asking for accommodations often sounds simpler than it is.
Why is that? Why are we so reluctant to ask for something that will improve our quality of life, our relationships or our ability to succeed at work or school?
The biggest obstacle is often disclosure. Asking for an accommodation or support means disclosing that we’re disabled. Accommodations are for disabled people, after all. For those of us who have spent a lifetime instinctively trying to pass as nondisabled, it can be hard to make the mental shift to being openly or even semi-openly disabled.
There is also the question of whether the other party will understand the nature of hidden disabilities. Unlike a visible disability, a hidden disability carries a certain burden of proof. So we hesitate, wondering whether the other person will believe that we really need this particular accommodation or perhaps dreading the amount of explaining and/or convincing that will be involved.
Finally, there is the specter of self-doubt. Do I really need to ask for this? Can’t I just continue to suck it up and power through like I always have? Maybe if I work harder, I don’t really need any supports. Continue reading Asking for Accommodations→
When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness. Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:
We often have atypical symptoms and atypical reactions to medications
We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it
In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:
Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.
Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.
Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.
Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.
I’m sure I’ve missed things, both here and in the AWN article so, as always, I’m looking forward to your comments.
A few months ago, I watched a lecture by Sam Goldstein about resilience. At the start of his talk he mentioned how in Utah, teachers used to begin IEPs with a discussion of a child’s strengths. They’ve moved away from this in recent years because, as he put it, many teachers felt that listing what a child can already do well is a cursory exercise–in other words, a form of busy work that was taking up time they could be using to list all the things the child can’t do.
Now imagine that child moving through school, trailing this long list of things he can’t do behind him. That’s twelve-plus years of people emphasizing what he’s bad at and what he needs to fix. If he’s lucky, he has at least one cheerleader in his corner, telling him what he’s good at. Because when he sits down to fill out his college applications or goes for his first job interview, no one is going to ask him what his worst subject is or what he can’t do.
Transitioning into adult life requires knowing your assets. Universities and employers are looking for people who know how to put their strengths to work for them. Assets, Goldstein says, insulate us from risk and make us resilient to adversity.
The tension between building on assets versus fixing deficits is at the core of what we face as autistic people living in a neurotypical world. Much of what is framed as interventions and skill building and self-improvement is about being more normal, about “passing” better. But that feels like a Sisyphean task. Continue reading Focusing on Assets, Building on Strengths→
In addition to the new set of questions that my diagnosis raised, it’s also forced me to think about my identity and how I want to own being autistic. I wrote a bit about identity very early on in this blog. At the time I challenged myself to revisit the subject in the future, after I’d had more time to educate myself and think about the labels I’ve been given.
In the past couple of months, I’ve been using autistic and aspie interchangeably to refer to myself. Not because the DSM-V will be eliminating Asperger’s but because it feels more comfortable. I’ve also been learning about the social model of disability, which says that disability is created by the way society is organized rather than by a person’s differences.
My previous concept of disability had centered on the medical model, which says that people are disabled by their differences, which need to be fixed. Because I was resistant to the idea of being seen as someone who is “less” or “defective” I was resistant to thinking of myself as disabled. The social model of disability has given me a much more positive way of thinking about disability. It looks at a person’s disability and asks what kind of supports that person needs, not what’s wrong with them.
The social model feels like a good fit for Autistic people. I don’t want to be fixed but there are some things that would make my life easier.
Learning to be Autistic
Since I’ve begun blogging, I’ve noticed that I have a constantly evolving sense of self. The more I write and read and talk with other people, the more my understanding of who I am shifts and solidifies.
Little by little, I’m learning what it means to be autistic.
You may notice that I generally use “small a” autistic rather than “capital A” Autistic in my writing. That’s intentional, not an oversight.
Autistic refers to Autistic people as a cultural group. For example, I consider my blog Autistic space–a safe space where Autistic people can gather to share information about how we experience the world. I make an effort to participate in Autistic advocacy events online, like the recent flashblogs. But I don’t feel ready yet to be an advocate in the sense that many other Autistic people are.
The funny thing is, I never thought about being advocate at all until recently. I started blogging as a way to process this huge new self-discovery. Writing has always been my primary way of processing. Big thing to process equals a need to write hundreds of thousands of words in response.
As I got involved in the online blogging community, I slowly began to realize that like it or not, I am an advocate. That’s something that I’ve come take very seriously. Words have consequences. We can lob them like rocks or wield them like a scalpel; we can use them to soothe or incite. Mostly I want to use them to understand and to promote acceptance–self-acceptance and acceptance of Autistic people in general.
I feel like I’m still learning to be autistic. This is personal for me right now. Perhaps this is my way of being an advocate–the constant dissecting and researching and writing and explaining and oversharing.
At some point I’d like to also feel comfortably Autistic, but for now, discovering my “small a” autistic self is an all-consuming process.
When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on. I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.
I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.
Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.
And so I was confronted with the question I’d been avoiding: am I disabled?
Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:
From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.
Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.
As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.
So, yes, I’m autistic and proudly so.
But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:
A physical or mental condition that limits a person’s movements, senses, or activities.
Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.
Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.
There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.
Well, on most days I wouldn’t.
But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.
Do other people see me as disabled?
Undoubtedly some do.
Maybe the real question is, does this bother me?
I guess it does, on some level. Would I be writing about it if I didn’t?
I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.
So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.
some related posts by other bloggers about labels, how we identify and the significance of language:
I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.