I’ve written about this before: parents of Autistic children sharing very private information about their kids, sharing moments that show the kids being upset, or having meltdowns.
These parents share everything publicly, using pictures and videos, the children’s real names, even if the children are adults.
Some say that they are trying to help other families, by showing the “real face of autism”. These are the “martyr parents”.
Others are very angry “at autism” and say they are doing what any parent who loves their children would do: “fight autism”. These parents call themselves “warriors”.
Still others don’t seem to care much about the humanity of their children. These are the attention seekers.
Many parents are a combination of martyr, warrior and attention seeker.
This, to me, is bad parenting.
This, to me, is putting their needs above the children’s needs.
This, to me, is disrespecting the children’s humanity.
I am talking about the public lamentation such parents engage themselves in with great dedication.
I do believe they (at least most of them) love their children.
I think they love themselves more.
I do know that some families need much more supports than what they get for the Autistic people in the home.
I do know that education is still largely inadequate, to say the least.
I do know that it can be hard when an Autistic person still cannot communicate in a way that is easier for the majority to understand.
I do know that respite care for families should be available to all, without all the obstacles.
None of this excuses sacrificing a child’s dignity for some “likes” of social media sympathy.
To the “martyr parents” who say their public testimonials are helping other families
You are talking about your child.
You, I am certain, did not ask for the child’s permission.
You are not thinking about your child’s feelings. Assume we all want privacy, even if you think your child “doesn’t care”.
Yes, you may try to help others. Do this in private groups, small trusted circles, or anonymously. For the sake, safety and dignity of your child.
Remember: your child is the priority, above your own feelings.
To the “warrior parents” who are “fighting autism”
You are fighting your child. Autism is, and will always be, part of them. It doesn’t matter if you can only see deficits and woes. Every time you show a video of your child having a bad moment, every time you blame autism for all the things you believe your child should be doing, but still can’t, you are hating your child.
There is no set timetable for us to learn. When you demonize autism, and ignore Autistic adults who tell you what I just did, you are setting the tone for how your child will be treated in the future.
People will “fight” them the way you fight us, or people will ignore them the way you ignore our voices.
Remember: your child is the priority, above your own feelings.
To the attention-seeker parents
Your child has the right to dignity, as all human beings do. It is not your right to decide when to respect this.
It is not your right to tell the world about your adult child’s ability to use the toilet.
It is not your right to tell the world about your child’s self-injurious episodes, since you probably don’t know much about why some of us need this outlet.
Your excuse is that you are “realistic”, and that you “know” your child will never understand, learn or respond like a “normal” person.
No, we are not normal, not the shallow definition of normal anyway, but your assertions are the same that were used against me not too long ago.
If you don’t believe in your children, this is your problem, not theirs.
Even if you are right about your child’s future, you are being disrespectful of another human being.
Try to get the attention you crave in small, private groups. It is probably hard for you, but best for your child.
Remember: your child is the priority, above your own feelings.
To the martyr, warrior, attention-seeker parents who proudly carry these descriptors
Your children have their own lives, they are their own beings. Respect them.
It matters little if you don’t believe that they can be happy, accomplished and proud, even if things get too hard sometimes.
Your children’s life is not about you.
Your feelings about your children’s diagnosis are not as important as their right to privacy, dignity and respect.
You have a job, and you can only succeed at it if you put your child above your own feelings.
Well said!
[…] Источник: ollibean […]
I’ve been writing about my experiences as a parent (and gaining my adult diagnosis after my son was diagnosed) since he was small, when we were fighting for assistance and diagnosis. I never — ever — posted anything using his name, or mine, pictures or video of anything embarrassing, etc. I wrote a lot (under an alias) about my frustration with getting support, about the ups and downs of parenting, full stop, but always with a mind to the idea that my child will someday become an adult.
Amusingly, that became useful to myself later on, when I realized I didn’t want to be fully “out” from fears about my own employment/custody/etc. My own conscientiousness about my son ended up protecting my desire to keep my own diagnosis less than fully broadcast.
We’ve reviewed the pictures of him that are on my Facebook (friends-locked, but that’s imperfect), and he gives consent for me to share any pictures, or I don’t do it. That’s not difficult! Sometimes he wants a picture shared — “Show your internet friends our puppy” — but really, don’t share unless you have consent. It’s not that hard!
If we want our children to live to their full potential — to live independently, if they are able; to be employed to their full potential; to be able to be romantically involved should they choose to do so; to be able to realize their goals — we need to respect them as discrete individuals. They are not parts of us. They are not an extension of us to do with as we please.
tl;dr – you’re definitely preaching to the choir, here. Amen, amen, amen.
[…] I began reading a piece about Privacy and Parental Behavior by Amy Sequenzia. I certainly recommend giving it a read. It is a brilliant example of the […]
Perfect!
I appreciate your perspective. Of course, it is not only parents of autistic children who exploit their children for emotional (and other kinds of) gain. Curious: how do you feel about people posting their child doing amazing or cute or funny things because of their autism? I wonder if there’s still a potential for “exploitation” in those moments as well.
Years before my son’s diagnosis (actually from birth), I’ve never posted videos or pictures that show his face or used his real name anywhre on the internet– even in fb private messages. For me, this is about preserving his right to privacy and to someday craft his own online image. This might matter to me because I’m 43. I was thankfully able to experience, childhood, my teen years, and the follies of my 20’s(!) privately. I know that I am ultimately like Don Quixote titling at windmills on that one, but I’m trying to hold back the tide as long as possible.
Which isn’t to say that I don’t comment or post, from time-to-time, as “a mother of a child with Asperger’s” or similar.I wonder if you think that goes too far as well? (asking in all sincerity).
Great article
wonderful words
Beautiful and eloquent Amy thank you.
I write as a Mom of three. I write privately without names. I Do my utmost to respect the Autistic people we embrace in our small world. My priority is always my children, but my next priority started when I first heard about CCD autism. (The bleach freaks as I call them!) when I initially read about the bleach freaks I started my anonymous page. My gut told me that if people could hear from people like me, atypical experiences with Autism, then they could look beyond the cure. You know what? It works. No, seriously. People listen. NT Adults, they listen, they examine their priorities, they seek help when they are feeling desperate (and sometimes they do) and they do not indulge in tbese insane and hurtful “cures” that are simply horror stories. If one wants to call out a page that IS DOING HARM, one should also recognize the pages that are letting parents know that it is okay, because, guess what? They exist and its a good thing because those small groups you refered to? They are the places where the crazies sit and wait to hear your desperation and then Pm you their insane solution. We parents, who genuinely support our children, some of whom are themselves on the spectrum, my partner included, we stop that crap From spreading at every opportunity. We may be real, but we are for the most part truly and completely putting our children first-at least the bloggers I know and love. We are asking our children’s permission, or not sharing the meltdowns, sharing what we have learned instead, sharing our joy, our angst, our worry for our children and their future AND often pointing those who are in need to their nearest Autistic friend/confidant so they can gain their valuable insight and ideas.
I have written about autism. I have advocated for respect. My intention is to always foster understanding of my son and daughter. They are not their ASD and neither am I. I still need my emotions validated from time to time and I can do this with respect. For me it is about acceptance and love. The parent who cannot accept is the parent who is searching to fix and to blame. Your child can only ever be themselves. If something is distressing you about your child the first question could be “is my child distressed?” If the answer is “yes” the response could be to fix the problem, not the child. I agree – a worldwide video display of distressed children does little diminish it. Autism or not.
Brilliantly expressed. These kinds of parents make me so angry it’s hard to put into words.