(Issuing a Content Advisory/Trigger Warning; ableism and pessimistic viewpoint of autism by one non-autistic parent (emphasized to indicate that I realize this is one parent, who doesn’t necessarily represent all, nor is this post meant to speak to all). Includes quotations.)
Autism Awareness Month is winding down, and I’m getting ready to put my Extreme Warrior Face back on shelves for a while. That doesn’t mean that I’m going to be a hypocrite and turn off my brain’s Advocacy app just because April is almost over; it just means that I probably won’t be quite as militant about it. 😉
This post may come across as a little more emotional than usual.
There’s a reason for that.
My lovelies of the jury, it triggered me.
So naturally, I’m going to talk about it. 😉
As with all of my posts on this topic, this is meant only to whom it actually applies. It’s not meant to be directed at anyone else. Because so many parents are doing it right. Yes, this definitely includes non-autistic parents. Those of you who are open and loving and doing your best, are amazing. This actually goes double for non-autistic parents of autistic children, because you’re doing this with little people whose neurotype differs from yours. ❤
With that said, here we go…
The first point of contention is that the article was written not by the person themselves, but by their parent, on a site that purports to feature firsthand accounts of long-term conditions. Even their Bipolar Disorder section reveals an absence of stories written by other non-bipolar people. And for it to be any other way would be unacceptable.
So, then, why are about 2/3 of their stories about autism written by non-autistic people, about autistic people? If people experience a (conventionally-considered) mental illness like bipolar disorder are routinely allowed to speak for themselves, why not autistic people? Sometimes it almost seems like the world has been granted immunity, given a hall pass to shout right over us.
I’m certainly not saying that parents of autistic kids don’t have the right to speak.
I’m not saying that they can’t write about their lives. And I understand that a person’s children are a fundamental part of their lives. And I understand (perhaps as well as anyone else) that if their child is on the Asperger’s/autism spectrum, then autism is a fundamental part of their child.
But as most of us on the Asperger’s/autism spectrum are already too well aware, autism is primarily (and some of us might say exclusively) the autistic person’s story to tell. And too often, non-autistic people can be found in every cyber-book and cranny, talking over us, telling our story for us, way too frequently and with way too much one-sided negativity.
I came upon a story on the large, ever-popular website that professes to contain “real stories” by “real people” “with disabilities”.
And as I mentioned above, it triggered me.
It wasn’t a completely ugly sight, but it wasn’t a pretty one, either.
If people like this are going to write essays like that, I’m going to answer. Today, I’m talking back.
I’m going to pick it apart and write a fractionated rebuttal. I’ll quote the lines here for those who would rather not visit the site to see what my hubbub is all about.
Let’s take the first piece.
“Every time I sit down to write, I often already have a positive message to end on in mind. I don’t have that today. Today I am sad, I am angry and I am coming from a place that I don’t often go: a place with walls papered by self-pity and lighting dimmed by exhaustion.”
All I have to say about this section is, self-pity is right. Emphasis on “self”. Where’s the consideration for her child?
It’s OK to be sad. It’s OK to be frustrated. It’s OK to be angry. That is a frequent effect of attempting to establish and maintain a bond with someone of a different neurotype. It happens.
But my question is, what happens when her child sees this article?
And further, if this is how the parent is feeling, can they actually approach and interact with their child with openness and acceptance? I’m guessing that it would be pretty tough to do so.
“After all, bloggers who have written more negatively about their children with autism are often scrutinized and demonized.”
As well they should be, especially if their negative thoughts and defeatist attitudes constitute the majority of their writing.
And as well they should be, for abusing the upper hand they enjoy in their family dynamic and the world at large.
Non-autistic people enjoy a favored status in the general world. After all, they’re not autistic, and therefore, it is assumed that they’re not “abnormal” or “disordered”. The world assumes that they’re of sound mind; they have no stigma attached to their names. The world has no reason to take their words with grains of salt. In short, people take them seriously.
Now let’s factor in the power differential that comes with the chasm between an adult and a child. A minor child’s brain has not yet fully developed. They may think or feel something, but might lack the vocabulary or self-awareness necessary for adequate self-expression.
The parent is a mature adult with all of that intact and fully manifested. A child hasn’t reached that point yet. (This applies to any child, regardless of their neurotype.)
It is for this reason that the words uttered by an adult are generally taken more seriously than those of a minor. Society inherently believes that what an adult has to say is more worthy of attention.
Lastly, the parent(s) of the household make the rules. If they want to use the computer, and there’s only one, the parent’s desires tend to rank higher than those of their children.
Normally these are good things. Children need boundaries, and as much as they may protest when what they want to do butts up against the parameters set by the parent(s), they secretly want those rules in place. Ultimately, they appreciate the fact that those rules exist. Those rules, and the consistent enforcement thereof, help the child feel safer.
(For a counter example of what happens when this isn’t the case, just take a look at kids from households in which there are little to no rules; they’re often angry children. This is ultimately rooted in a chronic, low-level anxiety, due to not having parental guidance.)
My issue with all of this is not with household rules, mature development, or parental dominance. Those actually exist to protect the child. Rather, my beef lies in the misuse and abuse of the power differential. The power differential is natural and healthy, so long as it’s not used in ways that could harm the child. When that power differential ceases to protect the child, and could instead harm the child, that’s where I take issue.
When a parent laments in public cyberspace about the challenges of raising an autistic child, chances are really good that the child is not writing a blog post about their own side of the story. They’re not lamenting, in turn, about the challenges of being misunderstood by their non-autistic parent.
If they were, then the autistic child’s writing might serve as an equalizer that balances the scales a little.
But I don’t think that’s happening.
“Another reason I usually stay away from the negative: I don’t want my child (or others with autism) demonized or people to think any less of him.”
Except when your story ends up on The Mighty, for the whole world to see. Honestly, lady, what do you think will come of this? How are you letting anyone form any other impression of your son? Are your more positive blog posts ending up on The Mighty, too, or just this one “rare” negative one? Are you encouraging your child to tell their story and submit it to that site, too?
I think not.
” ‘Of course we have our challenges’ or ‘And even though he struggles…’. Anyone affected by autism knows those phrases are emotionally charged.”
Well, first of all, the “affected by” jab says it all. Tell us how you really feel (end semi-snark).
No one is “affected by” autism. The proper wording is “those who interact with autistic people/children”.
I’m not exactly the Queen of Anti-Ableism. But phrases like “affected by” are a touch strong. It might seem like simple semantics, but let’s explore that point.
Good old Google has a helpful dictionary feature, which also includes synonyms.
Let’s look at a few synonyms for the verb “to affect”:
“synonyms: move, touch, make an impression on, hit (hard), tug at someone’s heartstrings; More
“upset, trouble, distress, disturb, agitate, shake (up); ‘he was visibly affected by the experience’ “
That indeed sounds pretty negative. It gives the impression of trauma.
Indeed, the word rose up from Latin to Late Middle English, when its meaning was established as “to attack, as a disease”.
Is autism really that traumatizing? Does it really “disturb” people? Does it actually induce agitation? And does autism have a monopoly on that effect, or could it be said that there is often misunderstanding between people of different neurotypes?
My answer is a resounding NO to all of the autism-related questions, especially when a mutual understanding is reached between the two neurotypes.
Believe me, the challenges of interaction are bidirectional; neurotypical people aren’t “affected by” autism any greater than autistic people are “affected by” neurotypicality.
Interesting to think about, isn’t it? (That’s a serious and rhetorical question, with no sarcasm or snark intended.)
In short, my neurological orientation is not a “disease”, nor does it “attack” me, or anyone else.
“If our children and their autism are so great and so gifted, why are autism parents so vocal about needing help and advocating for their children? Why would a savant be labeled “disabled” or need to receive special services from a school district?”
Because maybe, just maybe, the problem isn’t autism. Maybe the problem lies with a bureaucratic, one-size-fits-all education model, which falls far short of serving unique individual children and their unique individual learning styles.
And maybe some of the problem lies with the small-but-vocal segment of one-size-fits-all parents, who assumed they had the right to assume who their child would turn out to be, and who cannot bend their minds to accept anything other.
And maybe it comes from a simplistic world that isn’t wise or enlightened enough to recognize or appreciate the gifts we have to offer.
Way to spin our advantages and positive traits into your own self-pity.
“Autism is a spectrum disorder. No two people on the spectrum are the same. Many of our children are not savants. Many of our children are not even on target with their development for their age. Many of our children will live with us for the rest of their lives.”
Yeah, and a larger percentage of us won’t live with our parents forever, too. And since you haven’t crossed that bridge yet, how do you know either way?
And can we please dispense with the obsession with milestones? I know they’re set by respected specialists and other authority figures, but they’re all human, and humans aren’t infallible.
Let children develop at their own pace, at least to a point. Give them time to come into their own. Often, they will.
How do I know that?
Because I’ve talked with those who have been eerily similar to your child, and they’ve grown into autistic adults, and they’re fine. I’m not saying that they have it easy (few, if any, of us do). I’m also not saying that every autistic child will automatically be OK. But I am saying that just because your child is the way they are now, doesn’t mean they’re destined to be a certain way forever.
“So, please, don’t tell me autism is a gift.”
It may not be your gift. In fact, it isn’t. It may (or may not) be your child’s gift. We won’t know until he tells his own story.
It is, however, more likely to be a gift if that’s the message you send, and less likely to be a gift if that’s the message you send. What you do and say now writes the early chapters of his book for life.
“When my child has been screaming every 30 minutes all day long and we have to go to the store and he screams at the checkout, the cashier telling me he’ll be OK and will be great with numbers when he grows up is not what I want to hear.”
But maybe it’s what you need to hear, my dear. You have to give him that chance. You have to give him that right. You have to give him that room. And you have to give him that support.
And by spending precious time writing articles like this, you’re giving up that time. You’re paying more attention to the negative energy, which only reinforces it. And it does so at the expense of the positive energy and constructive solutions.
And why is your kid screaming for 30 minutes anyway? Kids don’t do that for no reason. I’m an autistic adult, which means that I was once an autistic child, and I can assure you that I never screamed for no reason. Every time I did, it’s because something was wrong. Maybe the very situation of being in a grocery store is overwhelming. Maybe the fluorescent lights above are flickering, over stimulating his nervous system, and he can’t tell you (hello alexithymia!). Maybe he doesn’t feel well. Maybe the solution is to stop dragging him into the store. Have a neighbor watch him.
“When I look into my son’s eyes when he doesn’t understand his surroundings and his anxiety and fear are palpable, there’s nothing in this world I wouldn’t do to take that fear away.”
What is it about that environment that has him in such overload? What about your home or your car or your everyday errands is so scary for him?
And trust me, I was a sensitive but resilient kid. I had more problems with those environments when I was hungry, overtired, or stressed out by the accumulated events of the day. There’s a reason for this phenomenon. Find it. Don’t stop until you do.
“Please don’t tell me his autism is a gift when I take his little sister to the hospital for a concussion resulting from an impulsive outburst he could not control.”
Again, you have serious, unresolved issues in your environment. This is the home he has no choice but to exist in.
Don’t blame your son–or worse, autism itself–for your lack of detective skills or ability to provide a safe and stable space. Not all autistic kids are like this, because not all parents are like this.
Autism isn’t the culprit here. Neither is your son. And I’m not saying that you are, either. It’s something else.
Kids don’t just give their siblings concussions. Not “even” autistic kids. We’re not violent by nature. In fact, the very term “autism” is derived from a meaning involving “OK with/preference for being alone”, and we’re not violent at all when left to our devices, without poking and prodding and carrying on about how we won’t make eye contact or live “up to” the rest of the (prematurely assumed) expectations.
If violence or sudden outbursts enter into the picture anywhere, it’s either a natural manifestation of the fight-or-flight response, during which your son sees no other option and is merely trying to protect himself from something he perceives to be a threat, or the issue is something else besides autism and you have a misdiagnosis on your hands.
“For me, autism is exhausting, and I feel like every minute of every day is spent trying to break my child free from the anxiety that consumes him.”
You can start, as I mentioned above, by getting off the computer and playing detective to try to analyze the situation. From this article, I can tell two things:
that you have three small children and
that you’re fairly emotional
Either one of these factors alone can be overwhelming, and your household has both. Even as a autistic adult, who can reason through what’s going on, I would not be able to spend much time at your house, let alone live in it 24/7 like your young son is forced to do.
It’s people like these who waste precious detective or child-bonding time by perpetuating stereotypes and fueling misconceptions about autism.
I’m not an authority figure on parenting. But I’m a reasonably wise and cognizant human being who was once an autistic child. And my imagination doesn’t suck. And it’s not like just because I don’t have kids of my own that I’m clueless about raising them. At one point in time, I assumed I would have them. I made room in my mind for them, playing the “what if” game and visualizing the scenario through to completion, using the countless nights and weekends spent caring for children of all ages, from newborn to 14. So it’s not like I’m totally ignorant. It’s not like I’m not allowed to call out a piece of incongruent logic and misdirected emotions, or speak out in protest against the traumatization of a child and point out that “you’re doing it wrong”.
I don’t like doing that, but if it’s necessary, then it’s necessary.