Our Sharing is Not Shaming

I finally read the blog post that is calling out parents of children with disabilities for shaming their children by oversharing their experiences, their photos and the details of their days.

First of all, I will say I understand the point of view from which the author is coming.  I think there is a line that should not be crossed and I would hope each parent would take their child's dignity into consideration when they are trying to raise awareness and let the world know how certain disabilities impact individuals and families.  I would also encourage readers to read the post script, as I think it further explains the author's perspective and clarifies not all sharing by parents of children with disabilities is considered shaming or oversharing.

Ms. Findlay does mention one "shame" of which I have been guilty: "sharing stories of autism meltdowns."  This is something I do pretty regularly, as we experience them pretty regularly.  This is not something that I feel is wrong or demeaning to my child.  I share these stories so other caregivers of children and adults with autism do not feel alone.  I share these stories so that others on this journey who are further along than myself may offer advice to those of us who are still trying navigate how to best help our children when they are experiencing a meltdown.  I mostly share these stories so the world outside of our community will know how incredibly out of control and difficult autism can be for individuals on the spectrum and for those providing these individuals care.  Our friends, our families, our communities and our leaders need to know that many individuals with autism AND their families are struggling and not getting nearly the help they need to help those on the spectrum meet their potential.  Many families and individuals in our community are not getting the help they need to merely survive day to day.  Does this mean I am going to take a video of my child throwing a television across the room or attempting to beat the snot out of his siblings and post it all over Facebook.  No.  But I want you to know it's happening.  I want the medical community and legislative leaders to know that it's happening and, more importantly, that they need to give a shit.  Because there are days when we feel like we are drowning and gasping for air.  There are caregivers that are on the brink of their own mental breakdowns who are reaching out and not being heard.  And on those days sharing that pain and that exhaustion with others who have experienced the same may be all that keeps us going.

I try to focus on the positives.  I glow with pride at my son's reaching of milestones and growth and I share them to give hope and inspiration.  If and when he can read and comprehend my blog posts, he will know that we had hard days, but he will also know how far he's come.  And I won't hide that from him.  Ever.  I think autism acceptance that refuses to address the difficult aspects of our days and our fears for the future is not true acceptance at all.  I think that kind of acceptance indicates we are ashamed of those aspects of autism.  Wouldn't that be the opposite of acceptance?

As a parent of a child with a disability, as his caregiver...my experience is relevant too.  I hope my child grows into a refined, well-spoken self-advocate, like Ms. Findlay.  And maybe the disability blogosphere is too much of the parent's perspective without enough written by individuals with disabilities.  But the fact is that for many of us with children with cognitive delays and impairment, we, the parents, will always be our child's only voice.  Please don't attempt to silence that voice.

Comments

  1. Thanks for putting into words what many parents were thinking after reading the other post.

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  2. You shame your child with stories of their meltdowns. However you want to try and make it sound you share them for yourself. You don't do it for any other reason when it comes down to it than to try and make yourself feel better and garner some pity. That is the reality. Have some respect for your child.
    Imagine if you arrived as school to discover everyone there knew that just a few hours ago you smashed your tv or whatever. I don't think you would be too happy to discover your mother had shared this information.

    For the love of pete. Listen to the #ActuallyAutistic

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    1. These stories are not shared for pity. These stories are shared for awareness and HELP. As you are typing your response, I am assuming your #actuallyautistic traits do not interfere with your life as much as those that are on the severe end of the spectrum. Unfortunately, because higher functioning individuals have made it trendy to not be neurotypical and to only talk about the positives of autism, those with children and adults on the more severe end of the spectrum are getting even less help. If we act like these things are not happening, if we act like everyone on the spectrum is functioning high enough to enjoy their lives and not have constant issues related to their autism, there will be even less funding. There will be even less medical help. There will be even less access to therapies and help through the state and the schools. We all know the only way to make change happen is to be loud about what is not working. And after spending hours on the phone this week and last because I can't get my child in for an appointment for months to get access to medication he is already on to FUNCTION, this is a debate I'm more than willing to stand my ground on.

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  3. What I have found most interesting about that blog is that many parents who read it did exactly what you have done: You've reacted by defending your 'oversharing in the name of awareness. I'm not going to go into why your child's right to privacy trumps your ability to overshare because that's been said elsewhere by many people.

    I think what you may have missed is this: by constantly broadcasting your child's meltdowns in the name of awareness, you're actually contributing to the stigma experienced by autistic people.

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    1. I have not defended my oversharing. I am rejecting that telling stories of meltdowns falls into that category. People are never going to know what we do not tell them and describe to them. Stigma or not, without awareness and education about what a meltdown actually entails and how disruptive and destructive they are to the child and family on a sometimes hourly basis we will never get individuals the help they need to get better access to therapies and medical care. It's not always pretty, but that doesn't mean it doesn't happen.

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    2. I have thought very carefully about how to respond to that because my initial reaction was one of anger, and I really would like to have a constructive dialogue.

      Sharing details of meltdowns do fall into that category. Everyone knows that autistic children have meltdowns. Autistic adults also have meltdowns. Sometimes we simply just can't help it. Sometimes we can feel them starting and we have strategies to try and avert them. Sometimes those strategies are successful and sometimes they aren't. It's frustrating, it's embarrassing but it happens. Your stories about your child's meltdowns are on the internet - for him to read later (don't assume that he will never; always presume competence), for future schoolmates, for future employers. If that was about you, would you want the world to be able to read about it?

      On my point about stigma: sharing stories about meltdowns does contribute towards the stigma that we - and our autistic children - experience. It marks us as "other", as people who do things that are not considered "normal". We are seen as people who are abnormal and that is the stigma that we carry.

      Furthermore, I would like to address your comments to Richard. Typing ability does not equate to verbal ability. You have literally no way of knowing Richard's "functioning level". There are many, many non-speaking autistic people who are eloquent in their communication through other methods. Amy Sequenzia is one such person and you may want to see what she has to say. The word 'spectrum' does not imply different levels of functioning; it is simply a word that means that we are all different. Most of us vary in our level of functioning depending on situational demands, and other changes in our lifespan. About a month ago, I was essentially non-functional: I could not communicate verbally, I could not attach meaning to the words that were being spoken to me. I was unable to figure out the very basic day-to-day things that I needed to do. Now, I suppose you could say that I am "high functioning". I can almost pass as neurotypical - although that does require a lot of effort from me, and sometimes I simply don't have the energy required to make that effort.

      Autistic adults are not trying to make ourselves trendy. We're just trying to get people to hear us so that they can understand what it is like, and what they could do to be better parents to their children. I am certain that you love your children, so I hope you don't feel that this is a personal attack on you as a parent. It's just - sometimes - it would be really nice if parents could listen to autistic adults when we say "hey - that's actually not cool to do".

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    3. Cas,

      There is a lot you are saying with which I agree. And even though Richard's comments are dripping with arrogance and disdain, I actually think he makes a good point as well. My son is four, his peers are not on Facebook or reading my blog. He actually does not really have peers at this point. And while I hope that one day he will read, there is nothing on my page or in my blog that makes me cringe when I think about him reading it as an adult. I generally do focus on the positives and his progress. On our harder days, I will sometimes go into detail. Not detail that I think will be hurtful to him or embarrassing to him. As a teen or adult if he makes vast cognitive improvements (he is on the severe end of the spectrum, but that does not deter me from thinking one day things could be different), I do not think a story about him throwing a television across a room as an out of control preschooler will hurt his feelings. Published stories of children without disabilities (positive and negative) are not getting nearly the privacy backlash, which I find interesting. I would, however, adjust the page and what is shared (if anything) as he gets older and especially as he enters school as far as what is shared. Perhaps a more general page or blog would be appropriate...I get that. Now, I thought Ms. Findlay made some excellent points (which I tried to convey), but I personally did not think stories of how hard it can be (on the individual and the family) in a house with a severely autistic child are demeaning. Maybe some pages are, but I try to find a balance so that is not the case. If anything I very much so undershare negatives (as I am sure you know the details and episodes are not all shareworthy nor acceptable to share).

      I do disagree that people outside of our community know what a meltdown is or what it entails. While I try to do it in a respectful way, I think we are now fighting a different overgeneralization. As a society we tend to always go too far one way or the other. And while videos of children with autism mid meltdown and looking at autism as an awful "disease" were one horrific extreme, I feel like now the public is getting an incomplete picture going the other way. Our children are not all savants or geniuses. Those of us with more severe kiddos on the spectrum feel like such blanket statements about only the positives of autism do our children a disservice, especially when we are in the midst of needing true psychiatric and therapeutic help and cannot access it. I have found people outside of our community that are not familiar with autism (and there are a lot of people that fall into this category) are also surprised by how seemingly simple triggers for meltdowns can be. My family and friends were shocked when we finally figured out that meltdowns in the car were being brought on by the sound of the air conditioner. Once again, I do not think such a story would be inappropriate to share and it was possibly helpful to others with young children on the spectrum who are still trying to figure out how to help their children avoid meltdown situations all together.


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    4. As far as Richard's (and others') capabilities...I did not mean to imply I know his struggles or deficits. Only to point out that as he is putting words together and communicating his thoughts fluidly, I would imagine he is currently in a very different place than my child.

      On days when I feel like I am beating my head against a wall to get him the help he needs and to keep it all from falling apart, it's frustrating when the neurodiversity crowd is trying to silence one of our only ways of being heard. I understand that you all want to be heard by parents too. Although comments that are attacks will probably inhibit that from happening (not referring to your comment, but in general). I would encourage you to look at my page and if you see examples of oversharing...I would be open to a discussion about it via PM. You have a very different perspective than I have, and I do not deny that. But I hope that self-advocates will not attempt to silence parents' perspectives and experiences...as I think as a caregiver I may be able to offer perspective different from that of autistic adults.

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    5. Thank you for being receptive.

      I think a great litmus test to figure out whether it's oversharing or privacy invading is to ask yourself whether you would be comfortable with the world reading it if it was about you.

      You said that that is what you are doing, which is good. One other thing that you might not be aware of is that even if you do edit your blog in the future, there is also a copy available through archive, so it is worthwhile ensuring that what you're sharing now is ok forever.

      Best of luck with the journey ahead of you.

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  4. It is very hard to live in a world where admitting to having parenting struggles is seen as contributing to a stigma. Admitting difficulty, asking for advice and help, expressing grief or confusion...all these things are seen as weakness and incompetence and, shall I say it, even neglect or abuse by others.

    It is really messed up.

    I wonder if you remove the word autism from your blog if anyone would be attacking you.

    There are too many people in this world with an axe to grind with parental figures, and who want to defend the positive traits of autism while calling anything parents find challenging "stigma".

    I, for one, know that if my teen falls on the ground, biting her arm, that she is doing it for a reason! Something is very wrong! As I am scrambling to figure out what the trigger is ( as she is currently mostly nonverbal ) I do know one thing for sure...I want my child to stop inflicting pain upon herself! Why?
    Because I love her, that's why.

    Stop judging us parents so harshly.
    We love our kids.

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  5. It is very hard to live in a world where admitting to having parenting struggles is seen as contributing to a stigma. Admitting difficulty, asking for advice and help, expressing grief or confusion...all these things are seen as weakness and incompetence and, shall I say it, even neglect or abuse by others.

    It is really messed up.

    I wonder if you remove the word autism from your blog if anyone would be attacking you.

    There are too many people in this world with an axe to grind with parental figures, and who want to defend the positive traits of autism while calling anything parents find challenging "stigma".

    I, for one, know that if my teen falls on the ground, biting her arm, that she is doing it for a reason! Something is very wrong! As I am scrambling to figure out what the trigger is ( as she is currently mostly nonverbal ) I do know one thing for sure...I want my child to stop inflicting pain upon herself! Why?
    Because I love her, that's why.

    Stop judging us parents so harshly.
    We love our kids.

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