Not All Autism Is Equal

I had the chance over the last few days to click around the internet and check  more autism sites than I usually do. I have read all kinds of information about autism awareness, education issues, biomedical treatment, legal issues, political battles, and, of course, I have read lots of parents' blogs. I have spent quite a bit of time on neurodiversity sites trying to understand their point of view. The same thought keeps surfacing in my mind. Not all autism is equal. This is not news to most of us. Just like each person is unique, so is each person with autism. We call it a spectrum disorder. The severity of the disability can range from mild to profound. There are autistic individuals with tremendous intellectual and verbal skills. There are autistic individuals who are nonverbal and are classified as mentally retarded, like my son. We use descriptions like high functioning and low functioning. Some autistic children crave sensory input, and some children avoid it at all cost. When you compare biomedical profiles, they are not all identical. There seem to be different biomedical subsets that individuals fall into based on digestive function, viral response, and immune system function. Or should I say dysfunction? All of this measurable dysfunction can be mild or severe as well. Not all autism is equal.

I know lots of families with autistic kids, and I often visit the blogs of other parents of kids on the spectrum. The truth is I don't even relate to some things I hear and read. My ten-year old son is low functioning. Essentially he is nonverbal. He does not attend school; we provide a one-to-one home floortime program. His sensory needs are huge and interrupt therapy constantly. He has only just begun to be interested in other kids his age as playmates. He is not working anywhere near his grade level. We are working on pre-school/kindergarten skills. I have to admit that I am jealous of the stories I read on other blogs: attending school, eating in restaurants, participating in sports, working on friendships, having conversations. I want my son to do all all these things. I don't want to minimize other family's challenges. I know all families with autism struggle with the disability, and it is painful. There is nothing easy about it. But I still wish my son could do the things that other children with the same "label" are able to do. So in my mind, not all autism is equal.

Then I wonder. Is that part of what the disagreement is about? Is the neurodiversity group speaking from the high-functioning end of the spectrum? Is the pro-cure group coming from the low-functioning end of the spectrum? Do we really understand each other? We are all talking about autism, but not all autism is equal. Do we really understand the challenges of each other's children? It's like we speak the same language and use the same words, but is reality being communicated? Whos on first. Whats on second. My child has autism. So does  mine. Sounds the same, but it isn't. Not all autism is equal.

Thanks for stopping by. Linda

 

Comments

[Joseph]

The answer is no. Many in the neurodiversity movement do not see themselves as high functioning. Do you keep up with Ballastexistenz? We do not believe it's right to divide the spectrum into classes. We can't demand tolerance for our differences and at the same time say, well, these other persons really are too different to be tolerated.

[Wade Rankin]

Joseph,

It is neither the people nor the differences we do not tolerate; it's the dysfunction and/or the disability. The difficulties Linda describes are a fairly common story, and the point is we aren't motivated only by our own frustrations but by our children's frustrations as well. I DO read ballastextistenz' blog on a regular basis, and I include a link to it on my site for good reason. I marvel at her spirit and her brilliant writing, an admiration that would be the same if she were neurotypical. But my admiration for her abilities does not make me any less inclined to do whatever I can to alleviate my son's disability.

[Ballastexistenz]

I would add the same thing. Ten years ago I was officially classified as low-functioning. In fact that's the only functioning level I've ever been given on paper. I don't believe in the things for reasons that are too long and involved to get into right here.

But the "neurodiversity vs. cure" lines are not drawn according to real (as much as a false concept can be real) or assigned functioning level. That much I know from watching both autistic people's viewpoints and parents over a long time. Some autistic people labeled high-functioning, and some parents of autistic people labeled high-functioning, are for cure, some are against it. The same goes for autistic people, and parents of autistic people, labeled low-functioning. I have not seen a difference there.

Many people come upon the "realization" that the reason some want a cure and some don't is "functioning level", but with observation I don't think it's true in the end.

With regard to "mentally retarded" (which is what most people think when they look at me, by the way) IQ tests are a bit ridiculous with anybody, but they are very biased against autistic people. New studies have found that autistic people labeled "mentally retarded" score higher on less biased tests. Not that "mentally retarded" is a bad thing that needs curation, but that the conception of it in autistic people is off even if you stick to accepted definitions.

[Linda Betzold]

Whether you believe in dividing the spectrum into classes or not, those levels of ability/disability exist. I'm having trouble with the word tolerate. Do I tolerate my son's differences? Yes, I do. What I'm trying to get across is that, I don't just tolerate my son, I cherish him. It's because I cherish him that I seek to cure his autism. He places my hands on his mouth several times a day, asking me to help him talk. If I know what he is trying to say, sometimes I can help him get certain sounds out, and maybe form a word or part of one. As long as he is trying so hard and asking for my help, I will do everything I can for him. That may include speech therapy, auditory training, or chelation. How does that devalue him? How does that make me intolerant?

Yes, I have checked out Ballastexistenz. I have tremendous respect for autistic people who do not seek medical treatment for their autism. I completely support that choice. But, in all honesty, I have a hard time with high-functioning individuals telling me to let my son just be. Somehow they know more than I do about him. Somehow they know that he is content and does not want anything to be different in his life. When the truth is they don't know him, have never even seen him, and never interacted with him.

[Joseph]

I already addressed this same concern in Estee's blog, and I'm sure others have as well. Saying that I'm anti-cure is not the same as saying that I believe you should not help your child in any way. The reason certain treatment options are opposed is not because they are cures. They aren't cures. Many such treatments are opposed (and I can't generalize which ones are opposed by all anti-cure people) because they are not necessarily harmless and they are not likely useful in any way. The other point of contention is that of attitudes, expectations and the effects on the self-worth of the autistic person.

[Pete]

I think Ms. Betzold has done a wonderful job of articulating a phenomenon that is common to all spectrum disorders. The variability in the presentation of symptoms leads to a difficulty in making a concise definition of the disorder. This is the case with many neurological disorders. At one time, Muscular Dystrophy was thought to be one disorder. Now, this is seen as a family of disorders. And further distinctions, based on further research, seems likely.

The postings of those who have responded to Ms. Betzold's commentary actually provide supporting evidence for much of what she said. There are more questions than answers. Count the question marks in her last paragraph. Definitive statements made by those who reply to someone who is trying to make an irenic appeal reveal that not everyone has checked their own biases at the door.

I thought about whether or not I should make the following remarks for some time. The more I thought about it, the more I could not let comments by Ballastexistenz slide.

True mental retardation is a bad thing. It robes individuals of the chance to be independent agents in the world we live in. There are those whose disorder is so extreme that there is no hope of them ever even taking a test, let alone becoming a functioning member of society. You are to be commended for overcoming the labels assigned to you. But, not everyone is as fortunate as you are. Statements like, "Not that "mentally retarded" is a bad thing that needs curation..." are incredibly insensitive and calloused. There are many hurting parents and caring members of the medical profession who read blogs like this. If you are going to respond, you better be aware of who your audience may be. I would never have the nerve to think something like that, let alone put it in print for all to see. Perhaps your ability to rise yourself above your circumstances has led to the prideful conclusion that, "If I can do it, they can too." Well, they would if they could. They would if they could.

[zilari]

Nowhere in what ballastexistenz wrote did she assert that "if I can do it (whatever "it" may be), they can too." This is another thing autistic people often have to deal with: people reading into things, people making assumptions, people assigning attitudes and even words that simply do not exist.

I don't see what is prideful about truthfully relating one's life circumstances.

It is also a fact -- not wishful thinking, not conjecture, not any form of weird "pride", but a fact -- that people who look, test, or "present" as even severely retarded, or low-functioning, are capable of understanding lots of things (and doing lots of things) that the casual observer, or even the parent, might not expect.

To state this fact does not negate anyone's pain, or insult anyone, or invalidate the fact that some parents struggle greatly.

One cannot assume that in order to respect someone or acknowledge their feelings, anyone who hears about these feelings should just agree that they are the only possible response to a given situation.

[Bonnie Ventura]

Here is a link to an article describing the research that Ballastexistenz mentioned:

http://www.abc.net.au/science/news/health/HealthRepublish_1573742.htm

The point is that "mental retardation" is a very imprecise and subjective category; nonverbal autistics, in particular, can get widely varying scores on intelligence tests, depending on which test is being used.

Because intelligence tests are so unreliable, their results should never be used as a basis for judging a child to be hopeless and incapable of ever becoming a functioning member of society.

Neurodiversity activists are not telling parents that their children should "just be" and never be taught anything. Quite the reverse; we're saying that autistic children need to be given more opportunities and that they should not be presumed incapable.

This is similar to the argument often raised by racial minorities in pointing out that intelligence tests are biased toward the majority population. If minority children, on average, have lower scores on standardized tests, this does not mean that their brains are naturally inferior, but rather that better education for minority students, more accurate and unbiased tests, etc., are needed.

[Joseph]

Mottron-Dawson (2005) is remarkable research. It confirms what autistics have been saying for years: (1) Intelligence tests are flawed when it comes to autistics; (2) Don't test autistics too early.

The case study of a 15 year old is very surprising. The kid scores in the 0.1 percentile in the Weschler, and in the 95 precentile in the Raven. Basically, he'd be classified as profoundly retarded based on one test, but nearly gifted based on the other test. This is more impressive if you consider the educational opportunities this child might have been denied based on flawed testing.

That said, autism can be a disability to some, while others don't perceive it as such. Ballastexistenz, for example, might see her autism as a disability - I don't know. Either way, there is no justification nor an objective method to divide the spectrum when it comes to tolerance and acceptance.

[Phil Schwarz]

What gets lost in all this back-and-forth is the falsehood of the claim being made that those of us who are not on the "cure autism" bandwagon advocate doing *nothing* to help autistic kids. It is a pernicious, utterly baseless strawman.

*Of course* we want autistic kids to be able to communicate, to be able to make sense of the sensory input they get, to be able to mediate impulsivity, to be able to manage self-care needs, to be free from sensory distress, to be able to successfully navigate a social landscape populated by a majority with social instincts quite different from their own.

Interventions and therapies and teaching methodologies that achieve those ends -- *without* trying to make the child over as "normal" or non-autistic -- are *good things*.

Through them, autistic kids will become very capable, very "high functioning", young adults and adults... but deep down inside, *still autistic*. Their internal patterns of cognition, sensation, emotion, aesthetic sensibility, and so on, will be *autistic*.

Not the same as yours. But no less capable, no less worthy, no less *valid*.

And *that* is a good thing.

And *that* is what we want accepted.

If we as a society in the space of fifty years have been able to come to embrace African and Asian and Native American physical features, among others, as manifestations of human physical beauty equally as valid as European physical features, surely we can learn to embrace the diversity in the cognitive, sensory, emotive, and aesthetic patterns that are present in autistic people independent of the extent to which they may be handicapped, and that *remain* present in them independent of the extent to which they may have mitigated handicaps.

*That* is what we mean by "accepting autism".

Not what those who oppose us falsely claim we mean.

-- Phil Schwarz, Aspie father of an autistic son.