“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”
― Randy Pausch, The Last Lecture
We wanted to for a long time. For years. We dreamed of that bigger house with the front porch, the yard, the trees…. But we couldn’t. We just couldn’t move in the middle of the storm. It was one crisis spilling into the next. One medical drama following another, each turning into weeks of testing, all the while trying to manage the unfolding drama that is life with autistic children. (It is probably a very similar drama to life with typical children, but not having any of those, how would I know? )
And now it is there, in front of us. So close we could touch it, grasp it. The finish line is near, and suddenly I find my feet are glued to the ground once again. More storms are brewing, some are clearly visible, others sneak up from behind, and there is still that familiar one that once in a while tantalizes me with just its scent on the wind . Why now? Why again? I find myself in a dizzying panic, trying to free my stuck feet from the hardening glue, racing for that front porch before we get blown off course one more time.
The seemingly annual drama of shuffling therapists has begun early this year. Within a few short days, my children suddenly lost both of the behavioral consultants we had been working with. They simply left the company – better offers on the horizon, I suppose. From a professional standpoint,
I understand, I do. But personally, I am crushed. It seemed that while we were just getting to know one of them, the other had moved into our hearts and become part of our family. I am excited for both of these women, but it is a funny thing with these kinds of relationships. They become so much more than just “therapist.” They share in your life in such an intimate way, that when they do part with you, it seems they take just a piece of your heart with them. I’ve tried my best to explain it to my children. Troy seems used to it. Joyce is genuinely upset. And Mary… Well, I’m not too sure what she thinks. But I told her, so I know in her own way she understands.
We should have replacements by the end of the week, certainly following the same treatment plans, but they will not be the same people. They will be new to our family. I will have to retell our story to three new people. My children will have to adjust, yet again, to a new group of therapists. They will have to transition. Again. And then, we will move in a month, and we will have to start all over. Again. It is too much to think of.
As I am getting phone calls back and forth about this new transition, I am still finalizing things with that house we are buying. Back and forth with contractors, the real estate agent and mortgage broker. We are moving the closing date up by a week. One less week to get everything done…
And then, as I am on the phone being told that we are losing one of the best therapist friends we have had, my husband waves for my attention. He has just been told he has a four week trip coming up. At the same time that we are closing and moving. I will get power of attorney and sign papers for him. I will move everything we own, our dog, turtle, three cats, nine fish, and three children. Alone. That should be fun. (Note sarcasm..) Once we empty our current house, I will put that up for sale.
All of this should be enough. But then there is still the day to day. The never ending parade of therapists. The nonstop phone calls, emails, and texts, rearranging and rescheduling therapies around other therapies and doctor’s appointments and tests, and “regular” kid stuff like basketball banquets, Girl Scout meetings, birthday parties and play dates. But all of this transition has added another element. Autism doesn’t take kindly to change, so there is a lot more patience and forced calm required at a time when I have less reserves from which to give it.
This week has suddenly become filled with extra medical appointments. Joyce needs more dental work done. it would seem that years of crunching on ice cubes and too much fruit and sweets eventually takes a toll on a little girl who can’t stand to have her teeth brushed. She will be sedated. Again. And then the next day, Mary will be doing a “modified barium swallow” test to study, under x-ray how she swallows, and why she has been having more choking and aspirating incidents lately. This is a test I have been avoiding. Multiple doctors and therapists have recommended it, but I feared the radiation. She’s had so much radiation in her short life. But it has come to the point where I fear the choking more….
And today, that sickeningly familiar scent on the breeze returned again. She was so tired. All day she seemed off. I went upstairs to get something and came back to the playroom, to find her lying on her side, motionless with just a hand… what was it doing? moving… wiggling… no….Twitching. What was I seeing? Is it happening again? Waiting for something bigger. That’s what her doctor said we were doing… We haven’t caught it on EEG, so we’re waiting for something bigger… She was so tired today that she wouldn’t eat. Not even her favorites. I offered eggs after she asked for them on her iPad. Bacon. Pretzels. Cheese. Mashed potatoes. Hot dogs. Bananas. Pizza. She ate two bananas and handful of pretzels. All day. Why did her hand do that? Why is she so tired? Why is she choking again? What is going on??
But those worries are nearly constant now. We live our lives as many special needs families do – in a constant state of heightened alert. Dancing around sensory issues, charting out our day so routines remain as intact as possible, countless phones calls with doctors and therapists. This is our life. And it will never slow down, even just enough so we can buy a new house. But that’s okay. Because we’ll buy it anyway. Happiness will not be handed to us – we will forge our way to it, the way we always have. Because while this isn’t the life we planned, it is the life we have. It is constant, changing, adjusting, adapting, living. And I wouldn’t trade it. Not for anything. But I sure wouldn’t mind a cruise to the Caribbean with just my husband one day… You know, when things calm down.
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
― Ernest Hemingway
“We believe that we invent symbols. The truth is that they invent us; we are their creatures, shaped by their hard, defining edges.”
― Gene Wolfe, Shadow and Claw
It’s that time of year again. A time of year that should unite our community, and in many ways does. But it also drives a sharp wedge between so many of us. Blue lights and puzzle pieces. To the outside, neurotypical world they seem so innocuous, but here, in this community, such simple symbols can set tempers flaring.
April is Autism Awareness Month. A few years back, the United Nations designated April 2 as World Autism Awareness Day. It was the first time that the UN had recognized a developmental disorder in such a way. Autism Speak almost immediately latched onto the idea, and launched the Light it Up Blue campaign. To many parents, the community of support provided by an organization like Autism Speaks is invaluable. Unfortunately, they often seem to forget that those same parents are raising the next generation of autistic adults, a group of people that are largely ignored by Autism Speaks.
They are the single largest autism charity and lobbying power in the world. They are constantly in fundraising mode, and as such have a large war chest of influence to wield over the general community. They have so much potential to be the voice for so many. It is difficult for me to consider turning away from such a huge source of potential good for my children. But as much as their slogan, “Autism Speaks, It’s time to listen,” is touted on their bumper stickers, so often it would appear that when autistics speak, Autism Speaks turns a deaf ear.
When they produce mini-documentaries, such as the one they recently made, and they have parents saying things like, “well, he’s really sweet, uh, for an autistic child..” It hurts our community. It sends the exact wrong message.
When they treat autistics as a diseased population that must be cured and prevented, it does all of us – autistic and neurotypicals – a great disservice. They could be opening the door to conversation, to encourage acceptance of our differences, to encourage neurodiversity, and instead, they not only slam the door shut on the celebration of those differences, but they send a far worse message. They tell our children and our adult autistic friends that they are wrong. That they should be at war with a part of themselves. They tell our children that the very thing that shapes every aspect of how they perceive their world is wrong and needs to be removed.
But still, I am a forgiving and hopeful person. I want to believe that with the recent change in leadership at Autism Speaks that we will see some improvement, some change in messaging. I want to believe that we can all work together to change the conversation. This is an organization that has the cash flow and the influence to truly help – to encourage more accommodations and acceptance on a broader level. But without us continuing the conversation, this will never happen. I can’t say I support them, as they exist right now, but I do feel that our community needs them as a lobbying group. We need them to help get the message to folks in Washington and in local government. But we need to help them reshape that message.
As a mother, I try to take the lead from my children as much as I can. We have been celebrating Light it up Blue Night for a few years now. All of my children look forward to April 2 as though it is another birthday celebration. We have never really looked at it as an Autism Speaks thing, so much as a celebration of their autism – a celebration of that very special part of them that gives them this amazing community. We see it as an opportunity to talk to our friends and our classmates and our community about our differences in a positive way. And I have long looked to this community as a source of support, encouragement and advice. There simply is no guidebook, no roadmap for this journey. I am learning as I go. I have been blessed over this past year to get to know some autistic adults and some self-advocates who have given me valuable advice and insight on parenting and advocating for my amazing children. Words simply cannot describe my gratitude for that.
But once again, I am seeking advice from this community. I simply do not know what color light to put out on my porch tonight. My guess is at least one will be blue, and I will tell you why:
Troy often asks me if the autism color is blue because his favorite color is blue. He loves the blue lights. They make him happy and they make him proud. He is unaware of the politics of Autism Speaks, just that they started this fun way of celebrating who he is (and I sincerely hope that by the time he is old enough to understand all of this, that is exactly what they will be doing – celebrating autism instead of curing it).
There will be puzzle pieces. I know this is another controversy within the community. Many autistics are concerned that the puzzle pieces represent autistics as incomplete parts of a mystery. I don’t see it that way. I look at the puzzle pieces much like the early Christians looked at the symbol of the fish as a sign of Christianity – I’m pretty sure no one thought Jesus was a fish, but he was friends with some fishermen. And Joyce, well, she loves puzzles. Puzzles and princesses.
So maybe this year, instead of just the blue lights, we’ll have three different colored lights. And maybe instead of just the puzzle pieces, we’ll have some cars and some penguins (have I told you of Mary’s love of penguins? Story for another day, but yes, she loves penguins!)
Just this morning I was telling Troy a little about the blue light controversy, and my quandary about what to do. I told him that the blue color is actually for a company that works on the autism field, but not necessarily an autism color. Then I showed him the multi-colored symbol that is being used for Autism Acceptance Month.
He pondered for a minute and then said he likes this one better than the blue puzzle pieces. But he still wants his blue lights. Maybe even more of them this year.
And so, as it is with many big decisions in our house, the eight year old has spoken, and the blue lights will go up, but not without the extra symbols for autism acceptance. Because at the end of the day, this isn’t about politics. This isn’t about debate. This is about doing everything I can possibly do to make sure my kids know that theirs are the voices I will always listen to above anyone else’s – especially when it comes to autism. And if that means blue lights and rainbows, then I apologize in advance to my neighbors, because it’s about to look like bit like a disco over here.
For those of you who are new friends, here is the post I wrote last year about April. This is not an easy parenting journey, and in fact at times it has been downright hard and even terrifying. I have leaned heavily on this community for advice and support over the last few years, and only recently have I come to realize what the blue lights might mean in regards to specific organizations as opposed to our autism community – parents and autistics – as a whole. But in my heart this sentiment of community remains the same.
In the early days of Christianity, believers wore a small symbol of a fish, as a sign to recognize each other. During the days of the Underground Railroad, houses that were sympathetic to the cause and willing to offer shelter to those on the journey would light a candle in their window.
That’s what the blue lights mean. That’s what the puzzle pieces are. It’s a sign that says to those of us on the journey,
“I get it.”
“You are welcome here.”
~ from my own post, Community
A beautiful Autism Acceptance geometric pattern design by Because Patterns
You can purchase some of her work at http://www.cafepress.com/becausepatterns
“Silence is the language of God,
all else is poor translation.”
I have a confession. I tell everyone who works with Mary to presume competence. “She can understand you, she just won’t talk back to you. Be careful what you say around her – she can hear and understand – especially be careful with talk of Santa Claus, the Easter Bunny, the Tooth Fairy, etc.”. And even though I tell this to everyone else who works with her, I still have caught myself in the trap of underestimating her. She called me on it yesterday.
Mary doesn’t speak. She has three clumsy little signs (more, food, and finished). The signs are sporadic and rare at best. She uses her ipad to talk to us, but even that is very limited. Still, she manages to get what she wants. If we don’t figure it out fast enough, she’ll just help herself. She’s extremely smart. She’s a problem solver. She figures it out. (and she knows where we keep the bananas- her very favorite food . )
But yesterday I underestimated her understanding of a situation. We were at the home inspection for the new house we are buying. It is the longest amount of time we have spent there. We’ve been talking about the move with her brother and sister, preparing them for the transition. All the while, Mary has been listening. Quietly taking it all in. I wasn’t too sure how much a three year old could understand of this. It seemed such an abstract concept.
She seemed quite comfortable in her new living room, rolling around on the floor, exploring the kitchen, racing through the dining room. I carried her up the stairs and we watched while her brother and sister picked out their new rooms. I was still unsure if she understood what they were doing, or why we were even here.
Joyce quickly chose her room – the one with the walk-in closet, perfect for storing princess gowns. Troy was leaning towards the one with the extra crawl spaces with miniature doors that looked to him like some serious fort potential.
As Troy and I were standing in the last, as of yet, unclaimed room, he was still trying to decide. Holding Mary in my arms, I explained to him that it was his decision. I’d let Mary decide, but I didn’t really think she could choose something like that for herself. As the words escaped my lips, Mary wriggled out of my arms and walked purposefully over to the bed in the unclaimed room. She put her forehead to the bed in a typical Mary-style head hug, complete with wiggle dance. Troy smiled and looked up at me. “Mumum, I think she just did.”
She doesn’t speak. She barely signs. But her language is intact. We are the ones who are lacking in understanding. But she is patient with me, and she silently reminds me each day that I still have so much to learn.
The home inspection went great. And all three of my children chose their own rooms. It’s going to be an amazing summer.
You shall love your neighbor as yourself.
~ Judaism and Christianity. Bible, Leviticus 19.18
Whatever you wish that men would do to you, do so to them.
~Christianity. Bible, Matthew 7.12
Not one of you is a believer until he loves for his brother what he loves for himself.
~Islam. Forty Hadith of an-Nawawi 13
A man should wander about treating all creatures as he himself would be treated.
~Jainism. Sutrakritanga 1.11.33
Try your best to treat others as you would wish to be treated yourself, and you will find that this is the shortest way to benevolence.
~ Confucianism. Mencius VII.A.4
One should not behave towards others in a way which is disagreeable to oneself. This is the essence of morality. All other activities are due to selfish desire.
~Hinduism. Mahabharata, Anusasana Parva 113.8
Tsekung asked, “Is there one word that can serve as a principle of conduct for life?” Confucius replied, “It is the word shu–reciprocity: Do not do to others what you do not want them to do to you.”
~Confucianism. Analects 15.23
A certain heathen came to Shammai and said to him, “Make me a proselyte, on condition that you teach me the whole Torah while I stand on one foot.” Thereupon he repulsed him with the rod which was in his hand. When he went to Hillel, he said to him, “What is hateful to you, do not do to your neighbor: that is the whole Torah; all the rest of it is commentary; go and learn.”
~Judaism. Talmud, Shabbat 31a
“Teacher, which is the great commandment in the law?” Jesus said to him, “You shall love the Lord your God with all your heart, and with all your soul, and with all your mind. This is the great and first commandment. And a second is like it, You shall love your neighbor as yourself. On these two commandments depend all the law and the prophets.”
~ Christianity. Bible, Matthew 22.36-40
Selections from http://www.unification.net/ws/theme015.htm
I wrote here earlier about the newest batch of numbers showing that one in fifty school children has autism, and how perhaps this might mean it is time to start showing a little more respect to that growing population. This is the goal of the disability rights movement and of many autistic self-advocates – that society would start to make the small changes that mean the world to someone who would otherwise struggle to participate in typical societal settings. I often see the gay rights movement as intertwined with the autistic community, and as an example of the successes that the disability rights movement can achieve. By joining their voices with the voices of friends and family, they are finally being heard, they are changing the conversation and the perception, and I hope for nothing less than that in the disability rights movement as well. Both groups are human beings that are somehow separated from the rest of “typical” society by nothing more than a neurological difference – a different sort of wiring in the brain. “Different, but not less.” (Temple Grandin) Both groups are seeking relatively small changes from the larger population that would help them immensely. Small things like wheelchair accessibility, putting some felt tips on the bottoms of those noisy food court chairs, more equal opportunities in education and the workforce, and marriage equality.
When I met my husband for the first time, it was simply magical. And when he proposed to me, it was perfect. And when we got married, it was in a Church. My Daddy walked me down the aisle, gave me away, and my husband I were then married to each other – legally bound together as husband and wife. There was no discussion of the morality or the legality of it. And we both have equal rights when it comes to raising our children, making medical decisions for them and each other, or visiting each other in the hospital, should that ever happen. We can file joint tax returns. We can share a health insurance policy. Seemingly simple little things that we benefit so much from both emotionally and financially simply because we are allowed to be legally married.
I want that for my children. I want that for my friends. I want for any two people who absolutely love each other to have every opportunity that I have had. No American should be legally discriminated against based on their gender. Not allowing two men or two women to be legally married, legally punishes them. I know I wouldn’t want someone to come to me and say that my marriage is not valid just because my husband has blue eyes and I have brown eyes. Why would I do that to someone else? It just doesn’t make sense. It just doesn’t.
And today there is an opportunity. Today a case is being heard in the highest court in the land to decide whether or not everyone in this country gets a fair shot at happiness, at love, at family, regardless of gender. And we all wait, breathless with anticipation. Because their victory is our victory, and our children’s victory. Because if they can be heard in the highest court, then so can our children. If they can achieve this basic civil right – the right to choose for themselves who to love, then maybe, just maybe our children can also change the conversation from disability to ability. Maybe this world could be a more accepting place for all of our children, black, white, gay, straight, deaf, hearing, blind, seeing, autistic, and neurotypical.
I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident: that all men are created equal.”
~Martin Luther King, Jr.
We are almost there….
And for those that want to quote the Bible, “Adam and Eve, not Adam and Steve,” kinds of folks, I would kindly direct you back to the top of this post. Those who would use God’s Word as a tool for hate, must not understand God’s love. Judgement is His alone. Go get a life, and let everyone else live theirs.
“What is hateful to you, do not do to your neighbor: that is the whole Torah; all the rest of it is commentary; go and learn.”
~Judaism. Talmud, Shabbat 31a
“Anxiety is the dizziness of freedom.”
― Søren Kierkegaard
It was the meltdowns that gave him away. The daily hour-long tantrums. My own fear of these episodes eventually kept us locked inside the house for days at a time before I knew. Before someone first dared to utter the “A” word to me. He was shy. He was impulsive. He had a heck of a temper. He loved cars. He would become easily overwhelmed and shut down in large groups. People – friends and relatives- told me I was spoiling him. It was my fault. “Let him cry it out,” they would tell me. “You’re too soft on him.” He was my first child and obviously I had o idea what I was doing. I poured over parenting books, I studied Supernanny episodes, hoping I could glean some sort of insight, some sort of instructions on what to do.
Every time we would go to the mall, he would lose control. I can’t tell you how many times I carried him, kicking, screaming and scratching me out of the mall while I pushed his sister in the stroller. People would stare. Some would make comments. A spoiled little boy, and a mother incapable of controlling her child. Each time I would haul him back to the car, quietly strap him down into his car seat while he screamed, collapse into the driver’s seat, and drive home on a road blurred by the pool of tears welling up, threatening to burst over the damn. It was constant, unrelenting, and draining – for both of us.
After a while, I learned to recognize the signs of impending doom, and would try to pull the ripcord and escape the situation before disaster would strike. There were many days when we wouldn’t leave the house, because I could tell we were already having an “off” day. As Cesar Millan would say on his show, “The Dog Whisperer,” I could learn to recognize a level one or level two situation before it got to a level ten, and correct it. Often that meant baling on restaurants or birthday parties more than a little early, but we just didn’t know what else to do. The obvious problem with that plan was that Troy would build up steam, cooped up in the house with nowhere to go. The meltdowns became more intense and more frequent. Like an asthma attack, each meltdown would leave him exhausted and even more sensitive to the next trigger. One meltdown would lead into the next… I knew something was going on, but I just didn’t know what. All the voices around me told me I wasn’t disciplining him, but nothing worked, and it was breaking my heart to watch him struggle. He came home from preschool each day looking absolutely defeated. We were lost.
Eventually we received a diagnosis, and a team of therapists moved in to try to teach me how to understand my own child. It was a humbling experience, but finally I had a word, a name, an answer of sorts. He was not spoiled. He was autistic. But I was still clueless and felt I had a lot of ground to make up. The therapy gave us insight, and some level of understanding of why he was falling apart in certain situations, and eventually the tools we needed to accommodate him. The tantrums at the mall had been less about not getting the toy he wanted and more about the extreme sensory overload brought on by the lighting, the sounds and the crowds. The incidents at preschool had been less about being defiant and more about the schedule change they imposed by moving snack time ten minutes earlier. Things started to fall into place. We adjusted ourselves and our routines, and Troy started to calm. He started to trust us more, and he started to understand more about himself. His self-confidence grew. It helped him to know about his Aspergers. We called it the “special way my brain works,” and it became something of a badge of honor for him. He started to understand more about himself and was able to advocate for himself more, both at home and in school. It was an amazing transformation of self-awareness.
It has been nearly four years since our pediatrician suggested that Troy might have a form of autism. Four incredible, life-changing years. And now? Now he is about to be discharged from his therapies. He has gained coping skills, he has learned how to navigate the social world, and we have all learned so much more about his remarkable abilities and about how to adjust our own plans to make his world just a little easier to thrive in. I look at him now, self-confident, self-aware, and dare I say, popular with his friends, and it is difficult to remember just how hard his preschool year had been.
Some would say that Troy has nearly “outgrown” his autism. I would argue very strongly that this is not the case. In fact, it seems more that he has grown into it. He is very aware of himself and his emotions. He is great at deploying his coping mechanisms when he needs to. He is well supplied with many of the tools that he needs to navigate a “typical” world. At the same time, his autism has become an even bigger part of him. Possibly because we were able to share his diagnosis with him almost right away, he has had the self-esteem to embrace that part of himself in an incredibly beautiful way. He has unapologetically grown even more passionate about cars. He watches only car shows on television, he plays only car racing games on his Xbox. He enjoys working on the family car with Daddy, and will discuss just about anything regarding cars with us. He knows he is perseverating, but he knows that in this case, it makes him happy and is a potentially useful bank of knowledge he is acquiring. I think this is great. He is focused on something he genuinely enjoys.
At the same time, Troy is also more social than before, but that is partly because he has had the same groups of friends for the last four years between his school friends and his social skills group. He still has to work at least twice as hard as anyone else in the room, but he has become adept at it. He enjoys his time with his friends. He is finding his way. He is happy.
But something else has evolved, and not for the better. His anxiety. When he was much younger, Troy was terrified of tractors being turned on. In fact it spread to a fear of any ride-on toy being turned on. He would sit happily on a tractor until he got the idea that someone was going to switch it on. Then he would run screaming in the opposite direction, absolutely panic-stricken. Over time, he got over that fear, and now loves driving tractors whenever he can. But new fears have stepped in.
I have mentioned before that Joyce has a tendency to elope. It is incredibly frightening. Without any warning she simply slips away, whether out at the mall, in a parking lot, or even out my front door. She is seemingly stealthy and silent about it. When she does, it is not really intentionally leaving, but more of an absent-minded musing that leads her to wander, in search of rocks, flowers, butterflies, anything pretty.
This is stressful for me.
It is completely terrifying for Troy.
He takes his role as big brother very, very seriously. In his mind, her safety is, at least in part, his responsibility. When we are out in public, I can see his little body tense. The arms stiffen and fists clench at the mere mention of taking an elevator. He is forever worried that we will be separated by the automatically closing doors. He stands in between the doors, hurrying us all in, especially Joyce, all the while, actually partially blocking the doors, and making it harder for all of us to get through. When we are in parking lots now, he grabs hold of his sister’s hand with such intensity that she protests, actually pulling away from him and sometimes darting into traffic. Three or four times now, Troy has nearly been hit by cars in parking lots in an effort to rescue his sister. As his amazing ability to perseverate evolves, his anxieties increase. He has mapped out in his mind many of the possible scenarios for his sister to get separated from us, or worse. He takes it seriously. He is protective of her, but at what cost to himself?
I can take the hour long conversations about cars. I could watch my girls flap their hands until they fly away. I can program the iPad to give Mary a voice. I can follow the scripts round and round with Joyce. But this. This anxiety. I just don’t know how to fix this. It is spilling over into other parts of his life, affecting everything. And I worry for him because often the anxiety spins into anger and frustration. He can’t enjoy a simple outing at the mall, not because of the sensory issues or changes in routine that plagued him when he was younger, but because of this ever increasing anxiety over his sister. And now he is obsessing about our impending move to a new house. Same friends, same school, just a new house. But the unknowns are causing him to unwind. We are circling back to the daily meltdowns. He is nervous. He is anxious. He needs to know every detail of every plan for every day. I can understand it. I have written schedules all over the house for him. I have scheduled more behavioral therapy for Joyce to counteract the eloping behaviors. But I feel like suddenly, we are being sucked backwards into the terrifying abyss. The constant walking on eggshells, afraid that something, anything will set off his fear…. It is not the autism. Heck, I love the autism at this point. But this anxiety thing? I know it is just another step on our journey. At the same time, I hate to see him go through it. I hate to see my boy hurting and have no way to fix it. This just sucks. This is where I need some help. And I have yet to find a Supernanny episode on this one….
“If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.”
― Maya Angelou
1 in 50. Once again, a new “study” released, finding a supposed increase in autism rates. But really? 1 in 50? It was a phone survey of parents. So that’s first assuming that a proportionate number of parents actually wanted to participate in the survey…
I hesitate to write about this, because I feel very unimpressed by it, but I know folks are going to be asking me about it, so if I write here, I won’t have to repeat the conversation over and over. Well, that’s the theory anyway.
First, I have read of people being shocked and saddened by these numbers. I’m not. I’ve heard of people saying it’s over-diagnosed, that it’s somehow fashionable to have an autistic child. I don’t buy that either. Even if some doctors are handing out diagnoses like lollipops, it hardly makes up for the huge numbers of families that don’t even seek a diagnosis because of the financial costs involved. They are numbers on a page. They are what they are. Just numbers, right? Really it doesn’t change a whole lot about the individuals behind the numbers, but nobody’s focusing on them right now anyway. I said it. It’s true. Nobody in the media, or the CDC is trying to help these 1 out of every 50 human beings who have autism. Instead, they are just running around in circles, screaming “1 in 50!” like their hair is on fire.
We require wheelchair accessibility in every parking lot and and every public building. But supports at Church for autistics and their families to be able to fully participate just like the deaf guy up front with the American Sign Language Interpreter? How about assistance at the mall or the grocery store, so that the autistic person can manage to be at least as independent as the old lady using the electric scooter grocery cart? Parking for expectant mothers, yes. But a parking area for autism families shielded from having to cross a lane (or five) of traffic, so that a parent can get their child safely into a building. No, we don’t bother with that, because we don’t see those people. They are largely invisible to us, hiding in the back row, or just giving up and staying home. We hear about those numbers, though and we pray about the “epidemic.” But we don’t take the time to sit back and listen, really listen and understand the people behind those numbers. That many of these parents and autistic adults are isolating themselves after years of being trained by society that their behaviors are not acceptable and require explanation.
Does the world have to be so damned inaccessible for my kids? Do they have to have those noisy chairs scraping the floors in the food court at the mall at the same time as they are playing music videos on about fifteen TVs, next to the multitude of neon and florescent lights advertising the variety of different foods, all their smells mingling in the air, while the preteen beauty queen insults the awkward teenager who is stimming at a table trying to hold it together during this all-out assault on his sensory system? Does anybody really enjoy that? I have to believe that some improvements can be made in our general society that would genuinely help autistics to be more enabled than disabled, and would at the same time, be quite agreeable – even pleasant- for the rest of us. This should be a no-brainer. This should be simple. Turn off the TVs. Put those little felt pads on the bottoms of those chairs. Teach the beauty queen some manners. It can’t be that hard. It shouldn’t be so hard for kids like mine to get a snack at the mall.
So, if it is 1 in 50, maybe that’s our in. Maybe that’s how we start the conversation. Maybe that’s what it takes to get noticed. Maybe 2% of Americans and their families and friends, speaking together – instead of with all of the division that has been affecting our community – Maybe that’s how we finally get heard. It’s not about a cure. It’s not about more research. And for goodness sake, it’s not about vaccines. It’s about right now. Because right now, I can’t take my kids to the food court at the local mall to meet their friends. Right now, Sunday mass can change quickly from a prayerful experience to a meltdown in triplicate with little old ladies and their disapproving looks. Right now, I can’t take my son shoe-shopping. Right now, my kids are in danger every time we park our car and try to cross the lane into the grocery store, mall, doctor’s office, or restaurant. Right now, I can’t send my children to a “regular” school. Right now my children have to learn how to navigate your world, while you refuse to even acknowledge that theirs exists. This is not about fixing autism. It’s about fixing society. My children are not broken, or defective. But perhaps, if we cannot accommodate this growing population, then we, as a society, are.