My Autistic Son Needs 24/7 Support. And That's OK.
We have a good life, because we stopped buying into mainstream notions about what happy families look like.
We keep our focus on attainable pleasures
I’m the parent of a high-support autistic teenager, which means some people would say he “has severe autism.” By our own parameters, my family is a happy and well-adjusted crew. But before you make assumptions about me being a positivity unicorn, or that my son must be only “mildly” autistic, please know that my beloved dude is a mostly non-speaking ball of autistic energy who requires 24/7 support.
No matter how intensive your child’s disability is, if you focus on accepting them for who they are and understanding how they experience the world, you will all be happier. If you don’t believe me, well, research says so, too.
Why aren’t more parents-to-be aware of what we should realistically expect when we’re expecting? I blame our aspirational culture, and the way it rarely bothers to address disability except as feel-good meme fodder, or as unfairly having a “perfect” life snatched away. I resent the way our disabled kids and our families get viewed with voyeuristic pity. I have lost patience with the expectation of Instagram-ready family lives, since those are an exception, no matter what traits our kids have, and despite the way we see friends’ lives framed on social media.
When we don’t have access to disability-informed resources and instead internalize all these unhelpful mainstream notions, then we end up like I did after my son’s autism diagnosis: in a rage that not only made me susceptible to anti-vax disinformation but had me viewing my little guy as some sort of changeling, even though his most prominent trait is having my husband’s sweet personality rather than my prickly one. I’m not proud about failing my son (and am also now a vaccine advocate), but I will say that reliable information about autism and disability was even harder to find fifteen years ago. That’s why I’m pleading with you to not let this kind of derailment happen to you, or to your child.
Instead, I want parents to learn what disability advocates taught me, and what I wish I had known before my son’s diagnosis: that autistic and other disabled people have always been and likely will always be part of our societies, and are valuable human beings who deserve unqualified love, acceptance, and access to supports. That instead of trying to make our kids blend in or minimize their differences, we should prioritize treating our kids with affection and compassion, and focus on what it means for them to be happy.
I want other parents of autistic kids specifically to recognize that their lives can be so much easier through recognizing the importance of neurodiversity, or acknowledging that people with brains that work differently have rights and a role in society, even when the people attached to those brains need tremendous amounts of support. I want them to understand that autism is mostly genetic, and that focusing on causation rather than ours kids’ needs is a waste of time and so much money. I want them to understand that even the most distressing self-injury or aggression usually has a traceable source, such as being frustrated, overwhelmed, or in pain but unable to convey that distress effectively because of age or disability.
I want them to learn what I now know about autistic commonalities, that autistic people share recognizable traits, similar to genetically-related family members. They will tend to have complicated motor and sensory and processing things going on, regardless of intellectual or communication ability. That they should have a functional communication system as early as possible, whatever that looks like.
I want parents let their autistic kids like what they like as long as they’re not hurting anyone, and appreciate the joy of autistic passions, even if we parents don’t share or understand specific pursuits. I want them to respect their kid’s need to have a fidget on hand to self-sooth, and try to abide when their child is unable to get through a transition without a specific routine.
Ideally, all this disability-informed knowledge will lead to parents insisting on real inclusion at our schools. I don’t mean throwing all the kids together in an unregulated Thunderdome-style scenario, but rather including all kids in the school community, and not segregating disabled students in a random satellite classroom. I also want an end to the faux inclusivity of non-disabled students getting gold stars for treating disabled peers the way they are supposed to treat all of their peers. If kids have always interacted with fellow students as people, then getting rewarded for objectifying them should feel gross and inappropriate. And no, I don’t think true inclusion will solve all of our children’s social difficulties since our youngest humans are unpredictable and slightly feral, but it will definitely help.
Reshaping parental attitudes via disability advocate-informed resources isn’t going to fix everything for our families, because—separately—the system really is stacked against us. Therapeutic, medical, respite and other supports services are patchy, hard to access, and underfunded in most areas, and non-existent in others. But disability and autistic advocates at organizations like The Autistic Self Advocacy Network (autisticadvocacy.org) are working on changing these services and policies for the better, and I recommend supporting those efforts [autisticadvocacy.org].
But where else can parents access disability-informed resources? Unfortunately, it isn’t easy to track down, because supporting the autistic people who are already here is not a priority for most mainstream organizations, due to those sticky cultural biases I mentioned before. So another thing we parents can do to change the world for us and our kids is to insist these organizations hire autistic and disabled people for real positions of influence, and not merely as representation tokens or for PR feels.
As for that biased culture, I’m seeing small shifts. Comedian Amy Schumer, and the CW series Jane The Virgin both recently took on the topic of parenting disabled kids—and both affirmed acceptance! And while I don’t agree with everything politician and autism parent Andrew Yang says, I appreciate his proclamation that disability is commonplace and “Atypical is the new normal.” There is hope.
If nothing else, I want us to focus on what we can do right now, as individuals, to make our kids’ lives and ours easier on a day-to-day basis: treating our kids with acceptance and love, which is what all kids deserve.