First, please allow me to say that I personally know many wonderful blog-writers who are also parents, grandparents, or other relatives of Asperger’s/autistic children. The overwhelming majority (yay!) of them treat their children with dignity, preserving their anonymity (or, alternatively, using common first names only, etc), treat them with respect, and refrain from writing long litanies about the (admittedly-unique, at times) challenges of raising these “unusual” children (enclosed in quotes because while autistic people may be unusual relative to the neuro-majority, it’s not meant to hold any negative connotation).
There is a subset (there’s that word again) of bloggers out there (not any of whom I’ve actually ever interacted with, and probably none of whom would be likely to read this), however, who utilize their blog space as a public forum in which to air any and all dirty laundry.
For this ultra-public subset, no topic is sacred, no information is Too Much Information. There seem to be no limits or boundaries…or even respect for their children, who are human beings, of course. Children who can’t control what’s being said about them. Children who don’t have a say in the matter. Children who feel, on some level, the extreme negativity from the very people they depend upon.
According to this research abstract, children possess a “unique class of rights called ‘rights in trust’–rights that they cannot yet exercise, but will be able to exercise once they reach the age of majority”.
This means that parents (or any other type of caregiver or authority figure to whom the child has been entrusted) should not act in any way in which the child’s identity, character, options, or opportunities may somehow be compromised. This is known as the preservation of the “right to an open future”.
It’s crucial to remember that the child may “only” be in school right now, with a small circle of contacts and opportunities, and thus, it might be difficult to imagine that the information written about them now might be detrimental to them in the decades to come.
Furthermore, some of these parents might hold the assumption that their children may “never” lead “normal” lives or be able to take advantage of certain opportunities, and thus, they may not realize any potential further harm done in chronicling their daily lives online.
These presumptions could not be further from the truth.
After all, those opportunities haven’t come knocking yet. Contrary to what the parents might have learned online or been told by the various “experts” in their lives, there are entire chapters of these children’s stories that have not yet been written. Those pages are blank; the slate is still clean.
The problem is this: the so-called “experts”, and even these parents themselves, are not psychic. They cannot foretell the future. They don’t know which doors might actually open for their children with the passage of time.
Thus, to archive their every move and difficulty online might someday slam doors shut that might have otherwise been revealed to be open after all, despite the bleak forecasts and hopeless predictions made today.
Do any of these people operate a psychic hotline?
Because they can’t tell the future with enough accuracy to make a living doing so. Even medical and psychological practice is called just that: “practice”.
(Seriously, if there is such a thing as being psychic, and I had such a gift, I would certainly be using it in some significant (benevolent) way!)
Employers (and I imagine that, to a lesser extent, certain universities, and/or other entities) will google the names of potential candidates. Government agencies conduct background investigations for a variety of reasons. Data mining entities excavate the cyber-landscape with fine-tooth combs to gather and aggregate multiple categories of information, typically for the purposes of selling, renting, or otherwise distributing it to other entities, without regard for the sensitivity of the information or the potentially damaging effects of collecting it and making it available to the highest bidder. That’s a lot of investigation into people’s personal information, and a powerful set of motives driving this activity.
And of course, much like Las Vegas, what happens online stays online.
Taken in sum, it becomes obvious that the stakes of airing sensitive information could be extremely high.
With so much stigma stubbornly clinging to the Asperger’s/autism spectrum, and with general society being as slow to change and adapt to new findings and information, it is (unfortunately) likely that the myths and misconceptions surrounding Aspergian/autistic people will probably stick around for a while.
Using a personal blog, social media platform, or internet forum as a venue for an indiscriminate “tell-all” exposé might indeed inadvertently diminish a child’s (read: future adult’s) available opportunities, limit and restrict them in ways currently unseen, and slash their odds at a healthy, happy quality of life in the future.
The employer’s internet search 20 years from now might turn up–and collide with–these parents’ blog posts written today, and an opportunity that a child/future adult might have had might evaporate. A government that has formed a task force to tackle the “pressing” hot topic of “mental illness”, autism, or anything along those lines could stumble across such blogs and create databases of people who fit their criteria, which may or may not be kept around for less-than-transparent agendas, either in the present time or sometime in the future. I’m not a conspiracy theorist; it has happened. The Holocaust, the internment of Japanese citizens during World War II in the US, the McCarthy Era, and the present-day “watch lists” are several realistic examples. The powers that be at any given time, it seems, are not without the tendency toward tyranny.
Blogging without boundaries is character defamation at best, and a life sentence, in terms of employment or even civil liberties, at worst.
I advocate strongly for the right to an open future.
This means that every child has a clean slate–the cleanest slate possible.
This means refraining from posting their pictures, bathroom FunFacts, their names, and other TMI or personal info.
This means refraining from spewing negative thoughts surrounding their neurotype, going on and on about the parenting challenges and hardships related to their type, and lamenting about how the parent wishes that their child were “normal” or that things were different.
This means not burdening them with their 23andMe results–or yours–that show all those scary-sounding mutations.
This is not a frivolous subject. The potential effects aren’t frivolous, either. This is not about a personal agenda on my part. This isn’t about a simple bone to pick or a desire to rant about something.
This is about dignity.
This is about respect.
This is about basic human rights.
This is about protecting them from (and not further contributing to) undeserved humiliation (which they’re probably getting plenty of already from everyone else as it is).
This is about preserving as many opportunities and keeping as many doors open as possible, letting the child him/herself chart their own territory and walk their own path at the appropriate time and place. Please, let the individual disclose their own spectrum status and other personal information as they see fit, and when and to whom they feel comfortable.
This is about ensuring the greatest number of options and liberties possible, for as many people as possible.
This is about stepping aside and giving people their own voice, and letting them tell their own stories, as they see fit. And if/because they’re unable to do that now, it’s about avoiding the temptation to press “play” on their public life until they can. It’s about not stealing a microphone that is rightfully theirs.
It’s about not using innocent children as a pawn to gain attention or sympathy. It’s about not holding them out on a platter for the world to see, especially while they’re still developing and haven’t yet become who and what they can potentially be. It’s about letting them become that person in the same privacy the parents themselves enjoyed (and were granted) while growing up.
It’s about not jumping the gun and skipping ahead in their story, inadvertently dictating how it’s going to unfold. It’s about not writing those chapters of their lives before they’re due to be written, by those people themselves.
A parent’s (or caregiver’s) job is twofold:
- To provide guidance, to use their life experience to help their children become full-fledged adults, and
- To provide protection from (a protective barrier against) the rest of the world while the children are still young, naïve, and vulnerable.
When parents (and other people to whom their child’s care may be entrusted) write about their children using real names and photos, and give a real-time play-by-play as though they were starring in a real-life Truman Show, the adult isn’t fulfilling either of those duties.
They’re not working in or for the child’s best interest; they’re actually working against it.
Their children’s lives (and indeed the lives of these particular parents and caregivers themselves would be exponentially improved if the adults did two things:
Spend time with their children; love and embrace who they are as individuals, where they’re at, without judgement and without pessimism, and
If information is needed in order to improve the situation or circumstances, to seek out the viewpoints and perspectives of other autistic adults.
Simply running into the arms of other parents for support is indeed a natural inclination, and its not without its logical reasons. After all, when one finds themselves in a challenging situation, the natural response is to seek out others who share a similar predicament.
But as natural as that may be, it’s not especially helpful here, since many parents have taken the advice of others, even so-called “experts” and professionals, who don’t actually know much about that which they claim to be knowledgeable. It’s a case of (please pardon the common-but-semi-offensive phrase) “the blind leading the blind”. Nobody has a road map; nobody knows where they’re going. Few even know what they’re doing.
There are a few prerequisite steps to take today, however. The first step is to stop writing any new material. Don’t add more to what’s already there.
The second step is to review the blog in its entirety and scrub it of names, photos, and any other specifics that could be personally identifiable. It’s not absolutely necessary that one removes the blog or its posts altogether, just the potentially harmful information, anything that could be used to uncover the child’s identity. It’s important to use the “search” feature (such as for the child’s name) on the blog itself to ensure that all the posts have been sufficiently altered. Don’t forget about the image gallery, too; delete all of the pictures with the child in them.
The third step is to step back and allow the child to find and use their own voice.
The fourth step is to encourage the child in whatever they are interested in, whatever they accomplish, and whatever they want to do.
Last but not least, love and accept them for them, whoever, whatever, and wherever they are and evolve to be. 🙂
How To Find Your Autistic Child’s Voice ~ February 2, 2017
Autistic, Staring, and Silent ~ January 19. 2017
An Evening With a Mother of a Child Suspected To Be Autistic ~ December 28, 2016
Vaccines Do Not Cause Autism ~ Here’s Why ~ January 15, 2016