The Ebb & Flow and Why I Do Not Hate Autism Speaks | Autism Awareness | Fayetteville, NC Storytelling Photographer

Christian - PreK End of Year Celebration

I love my little guy. Let me repeat that, just so I am perfectly clear. I LOVE my little superhero.  I love his sweet, loving nature.  I love his smile.  I adore his laugh.  I love his current need to wear a fedora when he heads out for the day.  I treasure how he hugs his sister until she squeals to escape.

However, I do not love some of the obsessive actions his autism causes. For instance, his never-ending need to empty EVERYTHING, and I do mean EVERYTHING. If it is in a container, and he gets his hands on it, it MUST come out. Potato flakes, powdered sugar, juice, soda, shampoo, toothpaste, laundry detergent, air freshener, furniture polish, eggs, window cleaner, dish soap, beads, straight pins, paper…the list goes on for miles, but you get the picture. Couple this with an equally never-ending need to play with all sources of water in the house, and you can get the beginnings of a picture of the chaos this brings about.

This is our ebb, one of several actually, BUT, I love that little monkey.  I just really wish I could do laundry and brush my teeth about now, but alas…he’s made off with toothbrush #120432 and just destroyed 120 Tide PODS…that I bought yesterday. However, that is all absolutely miniscule in the face of his autism-based elopement compulsion. That has truly aged me, stressed me nearly to the point of breaking and has reduced me to tears so many more times than I can even begin to count or want to admit.

Let me make another point crystal clear, none of that is his fault or within his control. Our battle with this exhausts him as well. I would never want him to feel shame or guilt over this.  So, the intent of this post is not to “out” the little guy, but to paint autism in a realistic light. We are full of hope. I hope that, through his therapy and our hard work, my little guy will be able to develop impulse control. This same lack of impulse control causes his life-risking elopement behaviors. So, trust me when I say that I hope and pray daily for his continued growth and development.

Most of us in the autism community are truly full of hope. Still, we also deal with our moments, and sometimes days, of despair. A not so popular, or maybe the better word is infamous, Autism Speaks post shared a very real, raw look in to the depths this despair can reach.  One article talked about a mother who admitted to thinking about driving her van off a bridge with herself and her ASD child inside. She took a mental time out and did not act on the thought, but that was the level of desperation at which she had arrived….and she bravely, openly admitted it. This isn’t the action of a coward or someone who should be shunned. She spoke about her breaking point because she understood that there are hundreds of thousands of families dealing with the same isolation and ASD-based struggles. She understood the importance of letting them know that they were not alone, that someone out there “got them”, faced what they are facing, and got help to make it through to a better place. Autism Speaks has also come under heat for talking about the 75% divorce rate among families impacted by having a special needs child, the prevalence rates of depression as well as other impacts of the diagnosis on families.

None of this was done with the intent of making those with autism feel guilty because of the stress endured by their families. …and not everyone deals with the same autism. Some have symptoms that are not life threatening, that never self-harm, never wander. I can totally understand some parents and adults with ASD embracing their diagnosis and running with it. I applaud them and support them 110% in their journey. I also completely understand and fully support the crucial need for autism awareness and acceptance for the PEOPLE who are impacted by ASD. …but I cannot and will not accept autism, or rather our particular flavor of it. It (the disorder) is a dangerous and un-welcomed intruder in my child’s head.

I love sunshine, kittens and rainbows, they all make great photographs. ….but the ASD world has stormy, dark days that people should not be ashamed or afraid of admitting. We all have different experiences and different challenges that we face. I cannot accurately measure someone else’s ASD struggles based on my own or vice versa. Some face teen children who’s toddler meltdowns were heartbreaking to watch and have now turned harmfully violent. They face the unimaginable choice of having to institutionalize their child for their child’s safety , as well as their own. As a parent, just the thought of someone having to make that choice has me in tears. Yet I see it time after time, on autism parent support boards. Are they wrong for not wanting to accept autism with open arms?

Let me say it yet again, so there is NO mistaking. I LOVE MY CHILD! At this point though, I do not love his ASD. How can I? It is trying its best to kill him. Yet according to those who push autism acceptance, I am dead wrong. I am wrong not to embrace his “differences” as if they were just benign challenges. This is where the mama bear in me starts growling internally. I love that his ASD has taught us to celebrate little victories, to appreciate even the smallest milestones. That is the delightful flow of our ASD story. Still, I will NEVER love and accept the part of his ASD that is actively causing him to risk his life. Here’s the thing though, you don’t get to heal half and keep half, and as of now, there is no cure.

A legitimate, safe, proven cure… I would give it to him in a heartbeat. Not because I wouldn’t miss our dino-naming contests, or him telling me on repeat that he loves my hugs. Not because I am too weak to deal with the challenges we face, but because I do not want my son to become an elopement death statistic. To the outside world, they are just that, statistics. Some might remember the names of our fallen angels for a bit, but the memory fades and the child eventually becomes part of an ever-growing number.

So where does my support of Autism Speaks come into this? They are devoted primarily to funding the science of understanding the root cause(s) of ASD and as well as research development for possible cures. They have been criticized for not funding enough family support efforts. However, that is not their primary mission. They have great resource listings for agencies who DO offer those services, but their mission is a scientific one.  I do not begrudge that one bit. There is a saying, “jack of all trades, master of none”.  I’d much rather they focus their funding in this direction, on a single front, rather than spreading it around and diluting their ability to be effective in the scientific realm. They have chosen this battlefront to help all of us who do hope for a cure,  and for answers as to why the rate of ASD is increasing. That is quite an enormous task in itself.

Back to those names-turned-numbers, the ones we’ve lost. I know the panic their parents felt, because I also held my breath when I read the NAA (National Autism Association) announcement of their elopement. I can clearly imagine the devastation, and I too wept when I read the crushing news they’d been found…too late. I’ve lived it over and over, because it is also my nightmare. The one time we don’t find him quickly enough. The one time he makes it into a neighbor’s pool. The one time a car is racing down our street and doesn’t see him in time. The one time the wrong person finds him wandering, and he is never to be seen again.  Just. One. Time.  That is all it takes. For children with this compulsion, it isn’t a matter of IF they will elope, but WHEN. They are hyper-vigilant and look for the smallest of opportunities to bolt. Maintaining 100% containment is impossible.

So I ask… Would you accept it if your child had a brain tumor that was killing them? Or would you do everything in your power to help find a cure to save them? I think the answer to that is pretty clear. It should be equally clear that I have every right to hope for the same, a cure. Autism is being sold as a quirky, beloved savant mix, a new personality norm that should just be embraced. For some, that may be perfectly fine, and absolutely true, but it is not the case for everyone. We are different, not less, but we are also different from each other as well. It is not a one-size-fits-all condition. Embrace us, accept us, understand us, but know we all have separate and different paths.  …and that is why I still support Autism Speaks.

  • Cara - As a mom of twin boys, both with ASD, I agree 100% with everything you are saying!ReplyCancel

    • Amy Vanwyk Photography - Thanks, Cara! I hope that you and yours are doing well. :o)ReplyCancel

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