Here in Alabama, the legislative floor in Montgomery is a battlefield. Are they arguing over which road projects need funding? Are they discussing a politically and emotionally charged topic like abortion?
No, they are trying to decide if children with autism deserve insurance coverage for their immense therapy needs. They are trying to decide if insurance companies should be allowed to forgo paying for critical interventions like speech therapy, occupational therapy, and the main point of contention – ABA therapy.
Applied Behavioral Analysis has long been regarded as the gold standard of autism therapies, with mountains of research supporting both its use and its long-term effectiveness. It’s a well-documented fact that the cost of ABA in the short term is a solid investment from a purely fiscal perspective, as adults who have received adequate therapy as children are far more likely to be contributing members of the economy, holding jobs and spending their own money. The most disheartening part of this entire conversation is that we are even having to justify the expenditure in fiscal terms. It smacks of Mulvaney’s comment claiming that we don’t see enough rise in test scores to justify feeding hungry children. The fiscally focused argument in the state capitol against paying for children to have therapy that can mean the difference between being able to have meaningful interactive relationships and being a prisoner of their disorder is every bit as morally reprehensible. As is all too often the case, I am deeply ashamed of my backward state.I remain hopeful, however, that the few in Montgomery with a backbone will lead the charge and that the sheep will follow something other than powerful campaign financiers for once when the vote comes around.
So, you can imagine my volatile state of emotion at the moment. We Alabamian autism parents hear loudly and clearly that our children’s needs don’t matter, that they aren’t going to really contribute in any meaningful (read: financial) way to the world, and thus it’s a wash to cover the therapies that will allow them to reach their potential. It’s Spartan elitism at best and outright ableism at worst. The horrifying imagery from the movie 300 of the ‘weak’ children being cast into the pit comes to mind. Too many powerful names in Alabama are comfortable with casting our autistic children aside, sacrificing them on the altar of money.
Tonight, this was my state of mind as I finally clicked the myriad links that my sweet friends had shared on my Facebook wall, in private messages, and in texts. I saw the face of the precious new puppet soon to join the beloved cast on Sesame Street.
I met Julia. But I already know her. Around here, we call her Miss B.
From the moment Julia graced the screen, I recognized Brinley in her. The way she admired and focused on her rabbit – I know that look, both serene and a chaotic storm of thought all at once. The way she wanted to jump and yell “Boing! Boing!” was all too familiar. Her intense interest in her drawing that drowned out Big Bird’s voice and kept her from responding is a common scene here in our home. The subtleties of mannerism are not lost on autism parents. We can spot them a mile away. So to say that I immediately recognized them in Julia is a high compliment to the creators of this darling character. It moved me so deeply that I took to Facebook Live as a weepy, emotional mess to share how much it meant to me. Now that I have the opportunity to gather my thoughts and lay them out, I have so much more to say.
Julia’s character is more than a nice addition to an already wonderful children’s show. She is the chance for girls like Brinley to know they are not alone. I have two other daughters, both of whom are neurotypical. They have always found themselves in characters onscreen. I see my oldest in Princess Anna’s chattery optimism and determination. I see my youngest in the fiery spirit of Merida. But for the first time, I looked at the screen and saw my middle girl. I saw an accurate picture of what she looks like at her best, which is never what we see when autism is portrayed.
Don’t get me wrong, it’s incredibly important that we acknowledge the challenges of autism. All too often, autism is glossed over as something children will “outgrow” or worse, that they are simply “quirky”. It is because of this misunderstanding that we must discuss it. It is vital that we let the parents who cry themselves to sleep at night wondering if their children will ever speak, have friends, or be able to enjoy simple family outings that their fears and their struggles are seen and heard. It’s necessary that we don’t turn a blind eye to the children who want desperately to be accepted but cannot understand how to interact in a way that allows them to fully integrate into a peer group. I’m not saying we shouldn’t see these realities brought to life on the screen. I’m saying that shouldn’t be all we see.
Autism is more than a spectrum, it is a prism. Just when you think you understand how the light will bend, it moves ever so slightly and the whole picture shifts. It’s perplexing and yet beautiful. We always see the perplexing, we often miss the beauty. I applaud the Sesame Street production team for choosing to focus on the latter. Julia has friends who are willing to meet her where she is and engage in a way that works for her. She is regarded as someone the other characters want to be around, rather than giving her awkward sideways glances. Her feelings, her interests, and her personhood are all acknowledged and celebrated on equal footing with Elmo, Abby, and the rest of the Sesame Street gang. In short, Julia is treated like a person, rather than just autism.
One incredibly important point about the creation of Julia’s character is the deliberate decision to make her female. Girls with autism are scarcely a blip on the radar of the general population’s understanding, and it’s no small wonder. We have all heard over and over that 1 in 68 boys children have it, yet what we don’t hear is that the incidence in girls is only one 1 in 189, versus 1 in 42 boys. While the media is making strides in portraying both genders with autism, the lag of societal understanding can be maddening. I cannot tell you how many times I have told someone I have a child with autism, only to have them ask “Oh, how old is he?” Not one person in four years has asked the gender of my child when I bring this up. Not. One. However, I have heard countless people say the following:
- “But I thought, only boys could have autism!”
- “She’s so pretty! She can’t be autistic!”
- “Are you sure it is autism? She looks so happy/makes eye contact/etc.”
- “Oh, that’s a shame. She’s beautiful.”
At the risk of derailing into my feminist thoughts on the fact that as a girl her beauty seems to the only quality everyone focuses on, I’ll simply point out that you cannot see autism. Well…not unless you have a highly trained eye. Most parents of children on the spectrum have a radar for it. We can tell you in less than five seconds if the child in aisle three losing their mind is having an autism meltdown, or simply needs a nap. The general public, however, cannot.
Which brings me back to Julia. While most people cannot “see” autism, perhaps with continuous exposure, they just may stop to look for it when they see a child behaving in a way that doesn’t make sense to them. My oldest daughter will see a child struggling in public and the first thought she has is to consider whether or not this child has autism. (That has led to some embarrassing conversations, which I will regale you with another day). Of course, she lives it day to day, but she’s not the only child I see doing this. I see it from other children who get consistent exposure to people on the spectrum, as well.
Miss B attends a fantastic school where there are dedicated units for children with autism, with the flexibility to move in and out of the general education classes as they are able. The kids at this school are comfortable and familiar with encountering autism because it’s simply part of their world. It’s part of their “normal”. They are growing up with a level of empathy the vast majority of adults lack, simply due to lack of exposure which in turn yields a lack of understanding. A generation who grows up seeing Julia alongside Elmo, Abby, and Big Bird will be a generation that embraces those who think and behave a little differently than they do. They will be a generation who reaches out to these peers of theirs that are wired with a different operating system and makes efforts to include them. They will be a generation who learns that people with autism are capable of real friendships, deep affection, and incredible insight. We just have to learn to hear it the way that they say it. With any luck, she might just teach some grown-ups the same lessons.
With the prevalence of autism continually climbing, we cannot overstate the importance of continual education, advocacy, and acceptance for these amazing people. They deserve to be heard. They deserve to be respected. They deserve to be loved. They deserve to be included. They deserve to have their needs covered. They deserve to be equal. They may be wired differently, but they are certainly not less.
That’s why Julia matters. Because autism matters. Now, if we can just get Julia and Elmo to come teach that lesson in Montgomery.