Why My Child's Dignity Is More Important Than 'Sharing Honestly' About Their Struggles

While I can understand honesty, dignity is far more important to preserve than being honest to attract a crowd.

I sent myself this sentence two weeks ago after reading a blog entry written by a mother of an autistic child. Then I found myself retyping these exact words after watching a video shared by another parent needing to vent about his frustrations with their child’s behaviors. It was time to sit down and so here I am, ready to dive into my thoughts on honesty versus dignity.

Here we go….

The road that we, the parents and caregivers of autistic children and other disabilities are on, is never straight and smooth; often bumpy, winding, and quite often one of the hardest drives we have ever had to navigate with a lack of directional signs and poor lighting. And at the beginning of my trip down this road, I was honest in a public way of sharing some of the hardest moments we encountered with my son — something I now deeply regret. It took the words from one that had be traveling on this road a little longer for me to realize that in my attempts to be honest, I was sacrificing my son’s dignity. Sure, he was only 3, maybe 4 years old at the time, but one day he may see all that I wrote and be deeply hurt that I choose to expose some of the truths of his most vulnerable moments in my personal attempt to be honest about what I was experiencing. I didn’t stop to think about him, and that was my crucial mistake. This is his story, not mine.

So over these past weeks as I read a particular blog, and then watched another video, my whole being wanted to scream out and tell these parents to stop immediately. They both have widely popular blogs with thousands of followers, and with that amount of followers comes an influence that cannot be denied. I believe a blogger that has such a large following has a responsibility to use that influence for the good of the autistic population, not to discourage respect and dignity. Each time a post goes up sharing the “horrors” that your child has done, you dehumanize an entire population. You tell an entire population of autistic individuals that it is OK to share their most difficult moments in an effort to be honest. You tell them dignity does not matter. You tell them that they do not matter, only you do. And that is simply not acceptable. Not now, not ever.

So please to all the bloggers out there, the parents and caregivers, while I understand wanting to share experiences, do yourselves a favor — ask the very important question of “if this were me experiencing what my child is experiencing in this moment, would I want someone else to share this publicly?” If the answer is no, turn off your device, walk away, and know there is a better way to connect with others. One that does not shame, that does not disrespect, and that does not take their hardest moments to gain more followers.

Please, for all our children and so many others — stop. Instead, work towards building a community of followers that respect and support all autistic individuals and others with disabilities. That is, after all, what really matters.  And if we the parents and caregivers cannot do this, then who can?

It is up to us.