(Some) Parents vs Self-Advocates

Maybe I'm even more of a curmudgeon after three hours of sleep, but during an exchange with the parent of an autistic child early this morning I found myself thinking, "How stupid can you be?" That is what I thought, too. Not "how ignorant" or "how mistaken" but bluntly and definitively "how stupid" this parent seemed at that moment.

I know the following is a rambling post. I'm tired and fuming a bit. If the rant is incoherent, I apologize; this is definitely a rant.

Being exhausted, I'm probably not thinking as clearly as I should, but I find myself at odds with a vocal group of parents somewhat regularly. The particular topic of debate doesn't matter at the moment; what matters is that the feuding camps of the "autism community" are precisely that: feuding camps.

I do not pretend to represent individuals with Kanner's classic autism disorder. I do not pretend to be a parent. I am precisely what I claim to be: one person with experiences of physical and neurological disability (which I'd argue are physical, too) fortunate enough to complete a university education.

When I speak to groups, I remind them that 90 percent (or more) of what I address deals with a small segment of the autistic population. I work with potential and current college students. Let's get real: the overwhelming majority of autistic individuals will not earn university degrees. Only 38 percent of adults in the United States have college degrees (including two-year diplomas), so simple logic dictates that only a fraction of autistic students will reach that goal.

Working with that fraction of a fraction of autistic students, sometimes called "twice exceptional" students, I encounter many unrealistic parents. Not merely unrealistic, but pushy and rude could describe these people. You can read into that some of what this parent was arguing.

Universities are not for everyone. In the U.S., you have the "right" to apply to a college or university, especially public institutions, but you do not have the guarantee of either admission or graduation. You must meet the academic standards. You must attend class. You must have the abilities required within a degree program. There are plenty of "able-bodied" students with no known challenges who do not succeed in academic programs. Guarantee of access is not guarantee of success.

I do not "hate" the severely cognitively disabled. I dislike the labels, but there are some cognitive challenges that limit access to higher education and some careers. I am not against anyone receiving reasonable services and accommodations, matched to the capabilities of that individual. That I have chosen to work with one small group does not indicate anything, nothing at all, about my views on autism and disability in general. (And my work doesn't include whatever I do for others on my personal time. Much of that isn't shared because I don't want to share it with the public.)

Autistic self-advocates are, generally speaking, part of the fraction of a fraction with whom I work. Some of these self-advocates, contrary to the nonsense on some websites, are physically disabled and dealing with many challenges in addition to an autism spectrum disorder. To dismiss self-advocates as "not autistic" or "selfish" (the worst insult I can imagine) only puts the self-advocates on the defensive. The result is more debate, more feuding.

I'll admit that many self-advocates have adopted a confrontational style of which I do not approve. I am not going to author a screed on being "autistic" vs. "living with autism." I am not going to be leading any marches or protests. That is not my style. I don't demand product boycotts and only one or two groups so offend me that I wouldn't engage them in dialogue.

What I do demand is respect for the students and adults with whom I work. Yes, they are fortunate to be able to pursue a post-secondary education. But do not imagine for a moment that their lives are wonderful or just like the sitcom "The Big Bang Theory." I know my life as a student was nothing like television or movies.

Some parents, and it is a minority, believe it is essential to criticize and tear-down self-advocates. They want to remind everyone (including me) that self-advocates don't have "real" autism. One line from this morning captures that perfectly: "Aspergers is not autism."

I'll admit that I believe there are several "autisms" and that Asperger's Syndrome does not have the same etiology as classic autism, but does not give me or anyone else the standing to publicly dismiss someone as not really autistic. What is an authentically autistic person? Don't pretend to be able to diagnose (or "un-diagnose") anyone with an ASD.

University students with ASDs have enough to deal with without advocates telling these young men and women that they are not really autistic and don't know anything about autism. When I state that I work with students with autism, that is technically and legally correct as far as I'm concerned. I'm sorry "autism" means one thing to some people, and only one thing.

Such a narrow definition of autism, excluding many eloquent self-advocates, is "stupid" in my mind. I managed not to state so this morning (barely), but I thought it. And I'm still thinking about it. I know that's not nice or understanding of me, but it isn't nice to dismiss the experiences of a group of individuals, either.


  1. In your experience do you feel that a administrative level outreach in regards to ASD is more beneficial then allowing Parents or student to come to the resources available for them in campus settings? The authors of this study in the Journal of Child Psychology and Psychiatry
    Make a point of correlating intervention and diagnosis in educational settings. Your thoughts?

  2. Schools already screen for many things, from auditory to visual impairments. Even in the late 1970s, I was screened for scoliosis at the elementary school. Recent U.K. studies have found that, when screened, the adult population has an ASD diagnostic rate close to what we see among children -- but these adults were never identified.

    Many people don't realize school "psychologists" are not always Ph.D. level specialists. Most states only require minimal training (36-48 graduate units) for a school psychologist. We desperately need advanced psychologists, I'd like psychiatrists as well, working in our public schools to help identify students sooner so supports can be provided when they are most effective.

    I'm not sure how in this time of restricted budgets we can provide more screening and supports, but I know that I am not qualified to make a diagnosis (I'm a language specialist, only), and most other teachers are not qualified to diagnose a child. The best we can do is suggest a child should be evaluated by an educational or neuro-psychologist specializing in ASDs.

    I've thought about adding a psychology master's to my doctorate, but that still would not qualify me to make the diagnoses students need.

    I would offer screening at the kindergarten or pre-school age. I would screen that early for auditory processing challenges and visual challenges, as well.

  3. Some of us are both, autistic self advocates and parents. We're the forgotten ones disliked by all sides. Be cautious when you say "parents" vs. self advocates. Some of us are both. Some of us, , AS self advocate/parents, happen to believe in the curve of autism because we see it. My autism is nothing like my son's.

    You'd be amazed at how discriminatory the "self advocacy" movement is against dual advocates like myself.

  4. @I'm Anonymous..Well said. We'll never get past the feuding if we forget that many adults on the spectrum are also parents. We rarely hear from them. The sound is drowned out by the loud voices of every other faction in this aggressive debate.


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