chavisory:

jenroses:

candidlyautistic:

butterflyinthewell:

chavisory:

Wow, okay.

I know that there are autistic people who cannot, presently, communicate in a way that we know how to understand well.

I have never and will never say that autism isn’t a disability or that no one can be profoundly disabled by autism.  Never.  I do not know who you think I am, but I am not one of those people.  A perusal of my blog on the topics of autism or disability would’ve told you that.  I consider myself disabled by autism, and most of the autistic people I know do.

I know that there are completely non-speaking people.  Many of them are able to use other methods of communication, like AAC devices, letter boards, ASL, or sounds and gestures.  Some are not.

I know that there are autistic people who we have not found an effective way to communicate with yet.

The key word there is “yet.”  When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.

“Some people just can’t communicate” doesn’t cut it.  We have not even come close to a situation in which all non-speaking people have access to AAC if they need it (about half of non-speaking adults do not), and in which most researchers and clinicians take seriously the capacity of many non-speaking/non-verbal people to think and communicate if their specific challenges and needs can be understood and met, or autistic-reported issues that may impact communication ability like movement disorders, exposure anxiety, and auditory processing disorder.  Though oral motor apraxia is one thing that is starting to be taken seriously as a common barrier to speech in autistic people.

It’s not that you personally just aren’t trying hard enough!  But when people close to a non-speaking person have already decided, or been told and believed, “this person does not communicate,” when this is a pervasive prejudice about non-speaking and non-verbal people, that puts you at risk of not seeing genuine attempts at communication as communication.

“Totally non-vocal” does not mean non-communicative.

I don’t know if you know, but every year for the past couple of years now, a tweet chat called #AutINSAR (#AutIMFAR in 2017) has been held during INSAR, which is the biggest annual conference on current autism research, to put autistic people directly in touch with researchers to talk about research priorities and goals.  And something that always tops the list of priorities that autistic people wish research would pursue is better and more available AAC, and how best to enable people with the most intense communication challenges.

Instead of continuing to throw millions and millions of dollars at trying to make mice autistic.

That is what I mean when I say “We can do better for non-verbal autistic people.”

Not that it is going to be easy or magical or somehow we will be able to turn every non-speaking person into someone who can communicate conventionally and articulately.

But we can do better than writing off non-verbal people as “just can’t communicate,” and we need to.

Wow, anon is narrow minded and ableist as hell. They need to listen to more autistic people.

“When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.”

“Some people just can’t communicate” doesn’t cut it"

The thing is that autism is a HUGE and nonspecific thing. Within that large umbrella, we have people ranging from some of the most “successful” in history in their area of interest, to people who struggle so hard with the basics of life that they don’t have the spoons left over for much else. 

For many of us, autism isn’t so much the disability but the explanation for why specific issues are happening. Autism is a complex thing. It gives me a lively, quick brain that makes leaps other people don’t seem to make very well… and makes it a lot harder for me to deal with things that other people deal with automatically. Autism isn’t the “problem”… sensory integration is, executive function is, sleep disorder, difficulty with social interaction when I’m tired, anxiety… We treat the problems, but I would not trade the way I think for ANYTHING to be “normal”. I don’t want normal, I just want to get enough sleep and not feel like I’m going to jump out of my skin. 

And I have a kid who struggles moment to moment to communicate due to a specific chromosome issue that also has a ton of factors in common with autism, and the autistic part isn’t the problem, it’s the fact that her mitochondria are iffy at best and not working efficiently and that impacts her language severely, but we’re able to actually treat it, so she has about 500x the vocabulary we expected based on research available 13 years ago when she was diagnosed. (I do not exaggerate here, she was expected to have 5-15 words, and has thousands, lack of language is characteristic of her syndrome, until we figured out that her syndrome was causing a CoQ10 deficiency and treated that.) 

We’re not trying to make her not-autistic, we’re trying to ease the parts that make her frustrated, like not being able to say what she wants to say. We’ve used sign, AAC on an IPAD, speech, picture exchange, object exchange, echolalia. I said when she was a baby that I would learn semaphore if that’s what it took to help her communicate. When it comes down to it we can always devolve to choice  hands (Do you want X *hold out right hand* or something else *hold out left hand*). 

We can work with the other issues that can come up with personal care. We can work with making sure her clothes don’t hurt (It’s helpful having a mom with sensory issues, I don’t get her anything that feels “bad” to me) and find her alternative strategies to head banging, just as I look for alternative strategies for me to sticking ear plugs in and never leaving the house. 

I know a number of people who just don’t use speech much. But MOST can learn to communicate on some level, with the right tools. I know a child who was COMPLETELY nonverbal, and they tried a method that proved that not only was she capable of communication, but that she already knew how to read, that she thought books were treasures, and a host of other things that they simply hadn’t managed to access yet until they hit on a method that allowed her to successfully navigate. 

I am such an evangelist for IPads for autistic kids. There’s a huge variety of communication software out there, and using it actually helped bridge the gap to speech for my own kid, but it can be a complete communication solution with the right professional support. It can also be a bridge for kids to have more control over their lives, the shows they watch, the music they listen to. They’re literally designed to be easy enough for a baby to use, and to watch a kid who has struggled with literally everything in her life quickly navigate through to specific shows, specific points in a show, back to communication software, into a game program, etc… It’s an immediately rewarding, very specific thing that is THEIRS in a world which is usually not set up for them. 

So I’m actually going to push back on the proposition that autism is a “huge and non-specific” thing.  I really don’t think that it is.  Autism has diagnostic criteria (imperfect as I think they are), and it has widely recognized commonalities in people across the spectrum.  Research is starting to bear out what autistic people have been reporting for a long time in regards to core processing differences involved in autism.

And also on the implied dichotomy between people who are successful in pursuing their interests and people who really struggle with the basics of life.

Many of us are BOTH of those things.  We may be both very successful at our areas of interest, and significantly disabled.

I’ve made this point before, but…Einstein was reputed to occasionally forget to wear pants to class.  Scientist Henry Cavendish was so beset by what I’d guess was probably severe exposure anxiety that he had a private staircase built in his house so he’d never have to encounter another person coming up or down the stairs.  If he hadn’t just happened to come from an incredibly wealthy family, he would have led a much more constrained life.  (This story is in Steve Silberman’s book NeuroTribes.)

Mozart literally died in a gutter, in his 30′s.

Anthony Hopkins is widely recognized as one of the most brilliant actors of our time, and he has struggled hugely with alcoholism (more common than widely acknowledged in the autistic community).  Daryl Hannah had to semi-retire from acting and withdraw from Hollywood suffering from autistic burnout several years ago.

Are there autistic people who likely will never be conventionally successful in the ways our society defines successful because of their disabilities?  Yes.

But research has also found that, on average, people diagnosed with less “severe” forms of autism do not struggle less in adulthood than people diagnosed with more severe forms.  And that a great deal of any given autistic person’s well-being has more to do with social support than with “severity” of their given autistic traits.

It’s only relatively recently that niche interests are even beginning to be recognized as strengths rather than pathology by the clinical world.  (Like, check out the date on that article.)

Places like Creative Growth Art Center are not widespread and obviously not a panacea for complex communication needs, but can provide critical support for the talents of people who would be called severely disabled in many contexts.

Autism for me is both the disability, and the explanation for a lot of things in my life.  I cannot say “autism isn’t the problem, sensory processing is” because sensory processing differences are intrinsic to autism for me.  (And also I don’t believe in playing moral whack-a-mole like that.  People with major sensory processing differences deserve to not have those treated as the enemy, either.)  Autism isn’t just the way I think; it is all of the ways I interface with the world, and many of those ways disable me, but many of them are also very contextually dependent.  If someone tried to say “we don’t want to make you non-autistic, we just want to treat your sensory processing difficulties,” that…doesn’t work.  Like I’d find that really disingenuous, because those are not separable things for me.

I’m a professional theater artist; I’m kind of actually successful in my career!  I’m also sick because I interacted with people too much on Saturday.  Both of those things are autism.  We aren’t people who have interests that can make us successful or people with substantive disabilities without there being any real connection between those things; we are very often both, with the very same traits having the potential to be enabling or disabling depending on context and the demands of our environment.