Privacy, and Parental Behavior

Announcement. Your feelings about your children’s diagnosis are not as important as their right to privacy, dignity and respect. Amy Sequenzia, Ollibean LogoI’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.

Image description black and white photograph of woman with short dark brown hair. She is smiling. Dark grey text reads:Amy Sequenzia Passionate Autistic activist, writer, and poet . Read more from Amy on Ollibean and visit nonspeakingautisticspeaking.blogspot.com .

About the Author:

Amy Sequenzia is a non-speaking Autistic, multiply disabled activist and writer. Amy writes about disability rights, civil rights and human rights. She also writes poetry.
Amy has presented in several conferences in the US and abroad, and her work is featured in books about being Autistic and Disabled. Amy is deeply involved with the Neurodiversity Movement and has been outspoken about the rights and worthy of disabled people.
Amy serves on the Board of Directors of the Autistic Self Advocacy Network (ASAN), and the Florida Alliance for Assistive Services and Technology (FAAST). http://nonspeakingautisticspeaking.blogspot.com and Autism Women’s Network. You can also follow Amy on Twitter at @AmySequenzia.

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  1. […] 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 […]

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