I originally posted this on Facebook and have been meaning to add it here on my blog. Happy April!
It’s Autism Acceptance month and I want to tell you about autism at our house. I’ve had the hardest time writing this because I don’t want to sugarcoat it and ignore the struggles, but I also want you to understand how amazing it is at the same time.
Autism at our house is getting to witness pure joy, the kind of untainted undiluted joy the rest of us can never quite reach. But my son experiences it daily. Autism is dimples and squeals and chanted echolalic songs. Autism is music and vibration all over our house and everywhere we go. Tapping it, tasting it. It’s his language, the one that comes naturally to him unlike ours. Autism is movement. It’s running free, climbing high, it’s bare feet and unashamed nudity as the world rushes by and he cants his head to capture the dizzying beauty in his peripheral vision. Autism is being hand-led to whatever he needs all over the house. Autism is him taking my hand to run it over his skin, his way of asking me to lightly scratch his back and arms. Autism is the way he sometimes looks into my eyes, and it’s so rare that it feels like a jolt to my heart, like I can’t even breathe because it’s so intense. Autism is feeling over the moon with pride and joy every time he conquers something new, no matter how small or odd it may seem to an outsider.
But autism is also anxiety and sensory overload. It’s him not understanding or feeling in control of what’s happening to him. It’s melting down with no control over the spiral, lashing out with teeth and flailing limbs, it’s banging his head. It’s being awake for days. It’s an inability to trust unfamiliar foods or tolerate triggering textures. It’s working ten times as hard as other children but still falling years behind them in developmental and academic skills.
Autism isn’t easy. But it is worth it. My son is the brightest light in any room. His eyes are full of stars and I just wish I could see what he sees. He is a six year old who has never performed a deliberately malicious act in his entire life. Neurotypical kids do mean things deliberately just to be mean from the moment they figure it out as little toddlers. It’s heady, a rush. But Reza never has. It doesn’t even occur to him. He’s the purest most beautiful soul I’ve ever met. Even when he’s lashing out in a meltdown, kicking and biting, it’s never malicious. He’s never trying to hurt anyone. He’s panicking and terrified and trying to rescue himself.
He’s so strong and so much fun to be around, even when he’s driving us nuts he still makes me smile.
A world without autism would be such a loss. Like sucking the light and color out of our human diversity.
Autism is hard. I wish my son didn’t have to go through its hardships. But autism is who he is, he is Autistic. It’s what makes him shine so bright, no matter the difficulties along the way.
At our house, autism is celebrated, and autism is home.
I’m adding this addendum to my last post because this happened, and then this excellent, perfectly stated response happened. And I realized that in my last post when I said if your child doesn’t like going somewhere don’t go, it may have sounded like I was suggesting “just be house-bound” or “don’t try outings that may be difficult.” It may have come off as cavalier and that was not my intention.
My intention was to say: (1) go places your child likes, as opposed to places you think he/she should like, and (2) if its a place you think they would enjoy if only it could be accessible for them, work on making it accessible rather than forcing them into it in spite of it being set up in an inaccessible way for your particular child (eg sensory overload). And finally, remember, as Tonia points out, sometimes you have to be patient and wait until your child is ready to enjoy certain outings/activities, because our kids have their own timeline, and it diverges from the neurotypical timeline for a lot of things. And that’s okay.
Let me give some examples from my own experience.
Up until a few weeks ago, we had not gone out to eat as a family in about four years. R. simply could not tolerate that environment, and the few times we tried it involved one parent going outside with him while the other ate with my older two kids, then a switch so parent #2 could eat while #1 went outside with R. We found this arrangement rushed and unenjoyable, so we stopped trying to do it. This was not an autism tragedy. We simply adapted. We enjoyed plenty of take-out instead, and from time to time my husband or I would take the older kids out to eat while the other parent stayed home with R. This gave us a chance to have one-on-one (or one-on-two) time with them. My husband and I would also occasionally go out for lunch just the two of us while the kids were all at school. It worked, and it was no big deal. But a few weeks ago, at age 5, we were able to go out to eat, all of us together as a family, for the first time in years. It was exciting and we had fun. And yes, it only worked because we set up strategic accommodations for R, and because we were patient enough to wait until he was ready and able to handle it. In terms of accommodations, we went during non-peak hours because R cannot tolerate large groups of people. We grabbed a large L-shaped booth in the back where we stationed ourselves on either end of the L-shape so that R could not bolt away, but had plenty of room to pace and jump back and forth along the L-shape. We chose a restaurant with very loud music so that R could vocally stim loudly without disturbing others. We brought his iPad so he could watch his videos, and we brought his own food (the restaurant was gracious enough to allow it) because his diet is very limited and we knew he would not eat anything we ordered. I also want to reiterate that even with all these strategies in place, for the last few years it still wouldn’t have worked because he wasn’t ready yet. And I think I should point out that R is hyposensitive to most sensory input, which is why this worked for us. A child who is hypersensitive would need a quieter restaurant, and perhaps headphones to cancel out the background noise.
In the beginning of this post I linked the Washington Post article about a mom who traumatically forced her five-year-old Autistic child into indoor spaces that caused panic attacks for him in an effort to make him overcome his anxiety. Anyone who has followed my blog knows that for a very long time R had that same anxiety and panic in unfamiliar indoor spaces. I have written about it in several posts like this one and this one. Our approach for places he *had* to go to (not like Ellenby, who forced her son into a Sesame Street concert) was to work on it for months in the tiniest possible increments. And when it came to non-essential places, like recreational spaces, we waited, and in the meantime, spent lots of time outdoors since he was fine in outdoor spaces. This was limiting at times. We could not visit family, they had to visit us. If we wanted to take our older two somewhere, one parent (usually me) had to stay back with R. But it wasn’t the end of the world and it wasn’t all about our sacrifices as parents. We tended to think of it terms of poor R, who had to struggle with this huge anxiety despite being such a tiny little boy. I have anxiety myself and have experienced panic attacks. They are so terrifying. And knowing that my toddler was having panic attacks broke my heart into a million pieces. So no, staying away from places that caused a panic attack was not some huge sacrifice for us, it was really the least we could fucking do for our sweet little boy. So we waited, and as he grew and acclimated to more indoor spaces (school, doctor’s office, etc) we slowly introduced new spaces with careful accommodations in place. For example the Boston Children’s Museum does accessible mornings and evenings where they will open the museum during off-hours. It is open only to children with disabilities and their families, they limit it to a small count of people (R cannot handle crowds so this is crucial for him), and they make sensory accommodations like low lighting and sound. The first time we tried it he could only handle it for about 15 minutes, then he needed to leave so we left. The next time he was able to stay for a whole hour. We followed his lead and took it slow. Now, at 5, he is in a place where he can go most places as long as it is not crowded and for discrete amounts of time (he makes it very clear when he is done and needs to go). He also generally needs to be able to stim freely to help himself cope, so that also factors in when we choose where we are going.
The bottom line is be flexible and be patient. And if, as time goes by, you see that the severe anxiety is not abating despite all efforts and despite the child’s growth and development, eventually the option of medication should be considered. I know several parents of Autistic children for whom pharmacological treatment of severe anxiety was life-changing. I’m sure you can imagine what it’s like to finally see your happy, smiling child again. We need to end the stigma surrounding medications for mental health. It shouldn’t be the very first thing we jump to, but when other approaches fail, an individual should not be left suffering when there are pharmacological options that could greatly improve their quality of life.
Alrighty, I’m off my soap box. Thanks for listening. 🙂
Okay. I’m going to vent here a little. And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse. A Facebook discussion really got this topic back on my mind. It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.
So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family. This phenomenon is not restricted to parents of Autistic kids. I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster. I think the meme below, created by and for parents of NTs, illustrates it beautifully.
The difference is, it happens a lot more often and more dramatically to parents of Autistic kids. And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment. …and setting your child up for more misery (!!!).
I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event. In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad. Poor mom and dad, who can’t even experience a proper birthday with their child. These parents will go on to repeat the whole fiasco next year. And they will grieve it. Again. And their child will suffer. Again. Folks, this is completely preventable. It’s not your day, it’s your child’s day! Stop singing Happy Birthday if your child hates it. Stop inviting all these people over. Figure out what works for your child to make it a special day and do that.
I see it with other stuff too. Trips to places the child is “supposed to” enjoy but doesn’t. Child doesn’t want to sit on Santa’s lap. He or she is screaming, self-injuring, melting down. Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa. But your child didn’t. Guess what mom? Stop taking your child places he/she cannot tolerate and this won’t happen. It’s that simple. There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses. Every day after work his Dad took him to ride his favorite bus lines for a few hours. That is what he loved, and so that is what they did together to connect and bond. In the end, shouldn’t it be about our kids? Stop making it all about you. Yes, it’s hard sometimes. You know what, parenting is hard. Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.
When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations. When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective. I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos. And it really makes all the difference. Don’t set yourself up for more grief, more disappointment. Don’t make your child suffer for your own rigidity (hah- do you see the irony?). Find a way to be flexible, to grow your parenting into something that fits with your kiddo. Welcome to Holland. It’s not Italy, but it can absolutely be great, if you would only give it a chance.
I wanted to learn about other children like my son. I wanted to see a glimpse of the future in one of their stories. I tried half a dozen books and was unable to finish any of them. Either they described children years older than my then-18-month-old son, or were filled with content that made me furious at the parents (who were the authors) and sick with grief for their children. I tried There’s a Boy in Here, in which the mother recounts spanking her toddler son over and over, harder and harder, because she couldn’t get a reaction from him. I tried Carly’s Voice, in which the parents openly treat their daughter as less-than, refusing to believe in her no matter what. I tried to get through that one, but when Carly’s parents remove her from their home and place her in an institution where she is subsequently sexually abused I just couldn’t anymore.
I didn’t understand these books, these parents. I didn’t understand all the 5-star amazon reviews full of people sympathizing with these apparently long suffering parents. There was a rhetoric of broken, lost, or missing children surrounding the Autism literature I encountered. I didn’t feel that way about my son. I would look into his beautiful face, his unfocused, far-away gaze that seemed at once unfathomably wise and tenderly innocent, and to me he was nothing less than absolutely perfect.
It was entirely by chance that I stumbled upon an Autism documentary called Loving Lampposts. This film changed everything. At last I found voices that echoed my thoughts- individuals who did not believe their children were lost or broken. As I watched the film I googled the names of individuals interviewed whose comments resonated with me. In this way I discovered what I had been looking for- books, articles, and stories from a place of love and acceptance. I read Loud Hands, a book written by Autistic adults from all across the spectrum. I read Not Even Wrong and Unstrange Minds, written by two of the individuals interviewed in Loving Lampposts. I read Stanley Greenspan’s Engaging Autism, and I discovered the Autism Discussion Page. I read Ido in Autismland, I found blogs like Diary of a Mom and Emma’s Hope Book. And of course, I read several of Temple Grandin’s books, which led me to Tito Rajarshi Mukhopadhyay’s poetry and then his book, How Can I Talk If My Lips Don’t Move?. I can’t express how valuable it was to find these books. I was given incredible insight into how my son’s mind works and what might be good ways to support him. I didn’t agree with every single thing I read, but I appreciated each perspective, and they all helped me find my own place in the confusing and often hostile intersection of Autism and parenting. And when I say hostile, I am referring to the “Autism wars” you may find yourself inadvertently sucked into when you have an internet connection and an opinion on anything Autism.
So if you’re out there, a confused, worried, hopeful mom or dad with a newly diagnosed Autistic kiddo, here’s MY reading list- web links and all- happy reading!