Hiding It

Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?

Advertisements

12 thoughts on “Hiding It

  1. You do whatever you think is best for you and for your family, and you’re the ONLY one who knows what that is. You don’t have to make apologies for your choices!

  2. Thats a very honest account of what you are doing. You are not alone – I think there are many other families who take a similar position. I know of one family whose child no longer meets the criteria for autism thanks to a social communication intervention but they have covered his ever having autism. This means of course that he cant be quoted as an example of the efficacy of the intervention – which is a shame on one level, but on another level, its those parents choice. We all do what feels right for us….and maybe it depends on the autism profile of our kids. I can look at some kids and see their potential for losing their diagnosis (with the right intervention/s), whereas I look at other kids and I think no matter how much work is done with them, they’re always going to have some vestigial difficulties. As to whether you are tearing at the fabric of civil rights – I think an argument can be made both ways on that one. Good luck – I hope it works out for you.

    • Thanks for this comment, and sorry for my delay in posting/replying. You hit on a question I often ask myself, which is this: If we do recover Martin, then have we done a disservice to others by covering so much? If I say to the casual acquaintance from the coffee shop, “Martin had autism, and we recovered him,” will that casual acquaintance respond, “He didn’t have autism; I ran into you both several times and never perceived any autistic characteristics”? And if he does, will I have failed in one stated purpose of this blog, which is to bear witness that recovery is possible? Recovery or not, I don’t know yet whether we ever will make Martin’s story “public,” i.e., free from anonymity. For the time being, I’m bearing faceless and nameless witness. If we reach an end to this process, I may have to reconsider.

  3. Thats a very honest account of what you are doing. You are not alone – I think there are many other families who take a similar position. I know of one family whose child no longer meets the criteria for autism thanks to a social communication intervention but they have covered his ever having autism. This means of course that he cant be quoted as an example of the efficacy of the intervention – which is a shame on one level, but on another level, its those parents choice. We all do what feels right for us….and maybe it depends on the autism profile of our kids. I can look at some kids and see their potential for losing their diagnosis (with the right intervention/s), whereas I look at other kids and I think no matter how much work is done with them, they’re always going to have some vestigial difficulties. As to whether you are tearing at the fabric of civil rights – I think an argument can be made both ways on that one. Good luck – I hope it works out for you.

  4. I’ve read the book Covering and have to say i think perhaps you are going too far. Perhaps this approach does reinforce stigma – not just for you and your son, but for all asd kids. My son is 8 with Asperger’s and he does not know yet that he has this diagnosis. So I think a lot about the stigma around it, how not to reinforce the stigma or buy into it, and also how to protect his privacy. there are no easy answers. That said, and I am NYC lawyer mom like you, I wish you well with recovery, but I do think this approach is a little at odds with acceptance. By that I mean, some of the coolest stuff about my son is related to his being an aspie. And I want him to be proud of who he is and how he is. It is a hard balancing act, because I also want to improve his social skills and give him the most options, so to some extent I am working always to decrease how his asd presents. And he works on that too, although he doesn’t know it is asd he is working at. That said, I still think it is a lot of who he is. And I think he can do or be anything, even with that label attached. If recovery is possible, then I hope you get that. But if it is not in your case, I hope you can see that maybe some work around the edges is enough, and the core person you have is really perfect as he is. I never think of my son as lost, maybe a little our of focus at times is all. But at 8 years old, I see someone, in all seriousness, who could be President. I doubt it, but it is not off the table! And part of why he has come so far, I think, is that we have worked from his strengths and accepted his orientation in the world. So that is one opinion.

    • Diana, thanks so much for these very thoughtful comments. I believe that, in a lot of ways, we are on the same path. I am undertaking biomedical recovery, and I do believe that it is possible to return my son to neurotypicality, and that is my goal. On the other hand, I know that for some kids (mine could be one) biomedical intervention does not get them “all the way.” I will keep on doing it, however, because it is moving my son toward neurotypicality, even if we never officially cross the finish line. (And who knows where that finish line is, anyway?) To me, it seems like moving toward neurotypicality through biomedical intervention (and HANDLE, and RDI, and so forth) is a form of what you call “working … to decrease how his asd presents.” It need not mean refusing to accept who my son is, or what is way of being is. To the contrary, to see my son beginning in one place and moving toward another—well, that has taught me to cherish every moment of his, as you put it so well, orientation in the world. I want to ensure that his orientation to the world, whatever it eventually is destined to be, is no impediment to his maximizing his potential as a human being, which means maximizing his potential as a social being. When we started, my son engaged in repetitive behaviors and had virtually no functional language. We’re at a much different place now. And where we’re headed is, I hope, to still another place, one where the world sees first my son’s talents and abilities, and not his ASD. I think that’s the aim we all share, however we approach it. I salute you for all you do for your son too!

  5. HI there, Thanks for your response and for taking the positive in what I was saying. I think you might be right that the paths are not so different. I certainly do believe that the interventions you are making don’t mean that you can’t also be accepting of who Martin is and who he turns into. I do remain skeptical of recovery as a concept, but how to approach treatment is up to each parent and there are no clear answers. But the larger question, I guess, is that I don’t want to return my son to full neurotypicality because i don’t see him as having been in a certain place and then having regressed or changed. I don’t perceive an assault on who he is by asd. For us, it was more like some of his quirkier and more challenging traits became more of an issue as he aged. What I thought was no big deal turned out to be a significant challenge in Kindergarten and First grade. That experience sounds pretty different from what you and some other parents have experienced – something that looks more like a regression and a change. I suspect a lot of how one comes at this issue may derive from the experience of learning that something is not quite typical. In any event, thanks for tolerating my challenge, and I really am very happy to hear how far your son has come!

  6. Pingback: Because They Know | Finding My Kid

  7. Pingback: Del Sur I: This Completely Sucks—Wait! Did He Just…? | Finding My Kid

  8. Pingback: Del Sur IV: That Doesn’t Sound So Bad | Finding My Kid

  9. Pingback: I Am That Person. I Am That Mom | Finding My Kid

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s