The Mother Who Invented Autism

My mother used to say, of young mothers who had “newfangled ideas” about child-rearing, that they thought they’d invented motherhood. I always found my mother’s attitude surprising because, technically, she didn’t raise any of her children; we were raised by grandmothers, aunts…my mother chose Pedagogy over Motherhood, and her area of expertise was teaching teachers how to be teachers…

A few years into my mothering experience, my mother told me that I thought I’d “invented Autism.” That, I hate to admit, was the closest thing to a last straw in our relationship. We didn’t really recover from that before dementia took her into a realm where she is, thankfully, happy and no longer judgmental.

Fourteen years have elapsed since that ill-fated conversation. I didn’t have a cogent response to her argument then, and it’s taken me years to understand what she (sort of) meant and (sort of) empathize with her views.

I’d like to clarify that I’m not launching into a tirade about my mother’s opinion of my parenting style. I think my style and hers are so far removed from each other that comparing them is unfair. While my mother’s generation burned bras and fought for equality so that they (and their daughters) could have it all, I -much to my mother’s chagrin- chose motherhood over career. Mind you: I wouldn’t have had much of a career in the first place so, in that sense, it was a no-brainer. I’m not saying I chose motherhood over career because I didn’t have a choice, but because I actually (for some insane reason) feel committed to THIS.

I didn’t invent Autism. It landed on me, dropped from the ether by some mysterious force that I cannot identify or name. It wasn’t there one day, and the next it was. I didn’t invent Autism, but Autism sort of invented me…or transmogrified me.

The reason first-time mothers think they invented motherhood is because of the transformation that takes place. We KNOW, when that first baby pops out, that we have been transformed, and we feel baffled and empowered in equal parts. I remember often putting down Dr. Spock to ask myself “how come I don’t KNOW this already?” When TGG was born, I was pretty sure that I knew what to do, but I was not going to baldly admit that I was terrified of screwing up royally. My aunts, blessed women who were old enough to be grandmothers and had dealt with cloth diapers, no running water, no protocol for introducing cereals to determine allergies, no formula, were the only people I trusted to tell me how to go “about it” in a way that wasn’t dictated by my pig-headed, first-time-mother arrogance.

When Autism landed, I didn’t have the benefit of “been there, done that” wisdom to guide me. I was alone. What I knew of Autism came from reading papers students wrote for my mother’s classes at the university. When I tried to suggest to people who might help me that J was autistic, I was basically told that I was imagining things, comparing him to TGG, and making an attention-seeking mountain out of a molehill…

J was assessed by neurologists, Autism specialists, school district personnel. In the midst of my shell-shock (because Autism came with a devastating hurricane, a divorce, and a relocation to an unfriendly environment) I couldn’t really GRASP all that was being said to me. All the clinical mumbo-jumbo was designed to give me the grim news, the grimmer prospects, and the grimmest sense that I was (pardon my French) fucked.

Nearly nineteen years have elapsed since that morning when J stopped being the kid I’d known all along. Did I really know him? I am not so sure now. There was always something different about him when compared to TGG. That is what the pre-diagnosis world latched on to; I was (unjustly) comparing one kid with the other, and finding him wanting. In truth, my friends, I found J baffling, confusing, difficult, mysterious, undecipherable.

Sixteen years have elapsed since the proverbial bell was put on the cat. The transmogrification was immediate; I went from sort-of-have-it-together-mother-of-two to I-don’t-have-a-clue-mother-of-two. The self-flagellation has stopped over the course of time.

Self-flagellation? Don’t tell me you don’t do it too. You, from time to time, think you’re screwing up so massively that you don’t know if laughing or crying is the correct response. You, like me, at times wonder if you will EVER figure out the one little thing that seems to trip your kid (ok, grown-up child) up. It is no secret that I am in an almost perpetual state of confusion.

Sometimes I wonder what it was like for the first mother of an individual in the Spectrum. Who was she? When and where did she live? How did she cope? Autism didn’t have a name then. It was probably considered madness, or some sort of enchantment. The tantrums might have seemed like violent trances. The self-injury the work of the Devil. Children were abandoned on hillsides to be eaten by wolves for lesser, albeit more visible to the naked eye, extraordinariness.

The obstreperous behavior of children in the Spectrum before there WAS a Spectrum might have been easier to deal with because there were less people to judge your parenting skills. The isolation the parents and child feel from the rest of society might have seemed less marked because people were not as socially connected as they are now. These days your kid can’t have a meltdown without someone potentially putting it on You Tube, or writing about it on Twitter, or sharing it on Facebook.

Back then there were no PECS, ABA, IEPs… The mother who invented Autism probably didn’t even realize that she was in an extraordinary parenting circumstance. She might have been surrounded by a lot more children than she could reasonably handle, and didn’t have time to dwell on the situation.

I also wonder about Charlotte “Lala” Bill, nanny to Prince John of the United Kingdom. Prince John, son of George V and Mary of Teck, was epileptic and exhibited signs of an intellectual disability and possibly Autism. The solution, in this early-20th century, royal scenario, was to isolate Prince John; while it’s been argued that the family was unfeeling, it seems that -aside from the upsetting nature of his conditions- it was safer for him to live in Sandringham with Lala Bill caring for him. Did Lala Bill stop to think how overwhelming all this was? Until all the tools and resources came together recently (in the great scheme of things the 20th century is equivalent to last week, isn’t it?) none of the women who preceded us knew what they were up against.

No one asked them if they thought they’d “invented Autism” because the darned thing didn’t have a name until “last week.” If they were criticized it was because they didn’t keep house well, their children weren’t turned out properly, and so on and so forth. Perhaps people wondered if their child was possessed and why had this befallen this particular mother. I’m sure these mothers wondered the same thing; I’m sure in the midst of life and all else, they stopped to almost dwell on it, and then they realized it was pointless. Their wisdom, if they had any to impart considering how busy they were with life and all, is lost to us…unless “spare the rod and spoil the child counts,” which I hope we’ll totally skip.

We all think, despite abundant evidence to the contrary, that our situation is special, exclusive, extraordinary. It is. Autism is a Spectrum Disorder, and the way it affects each individual, each family is special, exclusive, extraordinary. When we compare notes, we sometimes say “my son/daughter does that also.” We say it with surprise and shock seeping into our tone, as if we can’t believe someone else might be able to understand where we come from, and what we go through. We start feeling not-quite-so-isolated…until someone offers advice or empathy based on experience.

Mind you, this doesn’t happen every single time, but there are neophytes (meaning recently-diagnosed families) who think they can see ahead farther than the spot from which we (the older, more experienced veterans) are standing. I try to clarify that I am not giving advice, insights, information, suggestions, anecdotes because MY/OUR way is better than whatever it is people are currently doing. I try to clarify that there is a lot I/WE don’t know, and a lot more still that, when it works for J, baffles us because it is SO unexpected.

I try to make sure that people know all the feelings of confusion, anger, frustration, sadness, loss, hubris are normal. I, too, have felt like the caveman (or woman) who discovered fire one moment, and like the skipper of the Titanic the next. People seldom listen to that part, and the truth is that they will in time discover (because Time teaches us all) that they didn’t just NOT invent Autism but that they were re-invented by it. In that sense, us old-timers are like the grandparents who sit and watch their kids make every mistake, fall prey to every folly that we, in turn, were warned about by our elders…

Somewhere in the convoluted weave of the fabric of Time and Space, the Mother Who Invented Autism is chuckling at all of us, and rightfully so.

Go forth, my children…and, please, come back in one piece…

I am going to try humor here, but I don’t know if I have it in me today.  If you’ve read the news you might have heard about Stuart Chaifetz putting a wire on his autistic child and discovering how the boy was being treated at school.  If you haven’t read the story, here is the link:

Of all the things we do day after day, the -quite possibly- most difficult one is sending J out into the Big Bad World.  This is an exercise in trust; we trust that J will meet with kind, or at least not horrible, people out there.  The same can be said of parents of neuro-typical children, and there is always the concern that a “normal” (I hate that word) child will be bullied or mistreated and won’t speak about it out of fear.  When your child cannot communicate effectively the sinking feeling can be similar to Indiana Jones’ when he discovers the Well of Souls is full of, of all things, snakes!

The general idea is to send our children (neuro-typical and not) into the world and let them learn to fend for themselves.  This, preferably, happens in phases and not all in one day.  You don’t want to send your kid out to kindergarten and have him return with a pack of cigarettes, a condom in his wallet, a mental map of the “bad” neighborhoods and how to avoid them, cussing like a sailor (or a Catholic school girl,) and saying things like “we’re all gonna die, man!  We live to die…it’s all bleak!”  You want them to learn, little by little, that the courtesies, rules, regulations, negotiations and lines-in-the-sand they’ve been introduced to at home apply elsewhere.

That our children cannot always be within the protective embrace of our love and acceptance is obvious.  At one point or another the children have to be unleashed on an unsuspecting world, which may or may not be prepared to deal with them, and -possibly much to our chagrin- we have to learn to let go.  With TGG I had the option of asking how his day went and hoping he’d talk about it.  With J I’ve been flying blind for a long time…

A few years back, when J started behaving erratically, we had our concerns about what went on at school.  His one-on-one aide wasn’t formally trained to work with developmentally-disabled individuals, but the school thought it was a good fit and we trusted that they were right.  In hindsight, we were pretty stupid.  The person in question ultimately did more damage than good and manipulated J and us in ways that now make us feel ashamed for the time we lost in the process.  We don’t think she was evil, but we think she knew she was getting away with a lot, and she was looking out for herself first and foremost.

Since we are not in the habit of placing blame to make ourselves feel better or to remove any responsibility from our own shoulder, I will admit -hand over heart- that we unintentionally engaged in lazy parenting and allowed the co-dependence between J and this person to escalate until we realized that it was more noxious than we suspected originally.  By then, when we tried to pull back and redirect, a point had been reached where drastic measures were absolutely necessary, a crisis had to ensue and we had to, ultimately, resolve it…and we have.  WE had to learn the lesson, and WE had to mature beyond the point we had reached…for J’s good, WE had to take the bull (in this case, flower-loving, gentle until riled up Ferdinand the Bull.)

Stories like the Chaifetz’s make us realize how lucky and how foolish we have been; trust is a necessity that is forced upon us because, as parents, it is part of our role, but at one point we were so trusting that we didn’t realize our son was conflicted because someone was taking advantage of his affection.  We were involved parents, but we were too trusting in all the wrong ways, and we were -ultimately- responsible for our child’s situation at school.

Fast-forward to now: we still are the same parents who want to help and participate, but we hold ourselves even more accountable for what goes on in J’s life outside of this house.  Every time we start to work with a new team, I put in writing what I know J can do, what I expect him to achieve and what I’m willing to do to achieve this; the whole team at school gets a copy and when we go into IEP all my concerns have been addressed.  I don’t leave everything to the school, and the school staff know it and feel they can come to me with any concerns they have.  Our comm book goes back and forth every day, and I am on everyone’s speed-dial.

But I still have to trust that J is holding up ok when he’s away from home, and I have to learn to be ready for whatever develops.  Have you ever tried to be ready for whatever develops when the questions marks are more abundant than any other punctuation?  Yeah…I feel like that.  My father teaches all the kids in the family to play chess when they’re about five years old; he puts emphasis on thinking of all the possible scenarios.  The clue, he tells us all, is to take the time to think, to anticipate but wisely…I feel like I’m playing chess every single day.  Of course, there are times when it feels more like I’m playing the chess version that C3PO and Chewbacca are playing in Star Wars.  Yes, I hear a voice that says “let the Wookie win” in my head.

As the family van pulls out of the garage and I wave J goodbye, I always say a quiet prayer.  It is not particularly reverent, but it’s heartfelt: please, please, please God…don’t let this be a fucked-up day.   Mind you, it’s ok if it’s a bad day, a difficult day, a moody-J day, an exhausting day, a complicated day, a busy day.  I just don’t want it to be fucked-up because that would mean that something has gone beyond what we (meaning J and us) can properly handle in the short-term.  I say the same when anyone leaves the house and I won’t see them for hours…

The people I send out are not perfect, of course, but the one-piece I want back is both physical and emotional…it’s not about having a perfect life; it’s about having the life that is perfect for each of us within what is possible, and that means *sigh* “letting the Wookie win” from time to time, but not ALL the time.

Mr. Chaifetz, I think, knows exactly what I mean.