Posted in musings

accepting autism when I want to be normal

I remember the first time I revealed my depression to another person, and the first time I admitted that I had wanted to commit suicide. It’s not an easy thing to be open about; it’s shameful, and dark, and has the potential to hurt the person you’re talking to quite a bit (especially if they knew you when you were going through it and didn’t open up to them until years later). I’ve found a way to accept it as a part of my story and talk about it now, though, and I hope when I talk about it that I can encourage others who experience it. I have a mental illness, I can say, without being ashamed or guilty. I have been in these dark valleys, and heard these poisoned voices, and felt the dank stagnant breath of despair on my face. If you are there, I can say, where hope seems entirely absent and all light is lost, where you are lost in a pathless wilderness and the very thought of finding a way out seems pointless, I have been there too, and I am a witness that it is possible to return to the land of the living.

Autism has been a more difficult name to claim for myself. While I don’t have a medical diagnosis, it’s not doubt about the validity of the label that stops me; I can see every symptom in my autistic son mirrored in myself, I score well above the cutoff for every ASD questionnaire I’ve ever taken, and it’s evident to others to the point that my husband laughed at me when I told him I wasn’t sure if I could be autistic myself.

Instead, I think what makes it difficult for me is the admission, in accepting this diagnosis, that I may struggle with certain things for the rest of my life without a “fix.” That some of the aspects of myself I’ve always hated, some of the traits I’ve never accepted, are part of my neurology that will never go away. I can take a pill to shut out the blackness of my depression; there is no pill that will help me fit in with a group, or know how to move my face the right way when I listening to someone talk, or recognize when a friend is being sarcastic and when they’re being serious. I can go to a therapist to talk through unhelpful thought patterns and try to replace them with healthy and positive ones so that a depressive trigger won’t need to set off a ruminative episode of self-hatred; I can’t go to a therapist to talk away the irritability caused by spending all day with three kids whose normal play and conversation feels like an assault of noise, or the emotional breakdown induced by a last-minute schedule change, or the heights of anxiety scaled every time a new event or social appointment is upcoming. I mean, a therapist could potentially help me find ways to cope with those physical and emotional reactions – but they are still always going to be there.

As we’ve gone through the process of Rondel’s diagnosis and my accompanying self-discovery, I’ve read and read blogs and articles from the #actuallyautistic community – I’ve sought to have my understanding shaped by the words of autistic adults and self-advocates. So I know that autism is just a different wiring, a different way of perceiving the world and being in the world. I know that very often it is social norms and expectations that make autism difficult, not autism itself – that is, the difficulties do not exist because autism is bad, but because it is different in a world not designed to accommodate differences. I love that autism has given me a mind like a database and an unfailing eye for patterns. I think I can give autism some credit for saving me from the girl drama of middle school and high school, for giving me dedicated and focused attention on things of interest and importance to me, for helping me to be an honest and trustworthy person, for developing my (often repetitive) love of books and reading.

But sometimes it is just hard. I don’t want to be a different person, but sometimes I’d love to be part of a conversation without constantly having to evaluate and compare my responses with the responses of the other people involved, without having to laugh at a joke even if I don’t get it at all, without having to guess whether a statement was meant to be funny or sarcastic or not. Sometimes I’d like to be invited when church friends or coworkers have a BBQ or a game night – and sometimes I’d like to receive an invitation with casual nonchalance instead of panicked uncertainty. Sometimes? – I wish I could actually be normal instead of just pretending to try to fit in.

violet_incredibles
“Normal? What does anyone in this family know about normal? […] We act normal, Mom, I want to be normal!” – Violet Parr, Incredibles
But maybe it is harder to try to be someone I’m not, and waste my life wishing I were that other, neurotypical, person, than learning to accept and embrace who I am, struggles and all. Maybe it is harder, in the long run, to wear a disguise every day of my life and pretend that I never need help or support. I just know that right now I’m still too scared to take off that mask.

“Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.”

– Elizabeth Moon, The Speed of Dark

liking anchovies

Posted in family life

dance to the music no one else can hear

So now, having just explained in great detail why I think special ed preschool could be a great help for Rondel despite my misgivings about the public school system in general, I am going to argue the other side against myself. Hopefully writing this out will help me make a decision! And if not, hopefully it is helpful or interesting to someone else in a similar spot.

First, you should know this about Rondel.

When my son is in a highly stimulating, fun, chaotic environment, his energy ratchets up so high that he can’t always control it. Simultaneously, especially if he is hungry or tired (or if another kid is pushing his buttons), his anxiety often escalates as well. Either of these things could be a struggle independently, but when combined they can make situations very difficult for him. His body feels out of control, his emotions feel out of control, and his external environment feels out his control. In response to that, he will often take actions that on the surface appear irrational or bizarre: he may get overly aggressive in his play, wrestling after his friends have asked him to stop; he may try to run away to escape the chaos; or he may break down into incoherent tears.

Birthday parties, amusement parks, playgrounds, noisy restaurants, music class, movie theaters, and other noisy places can all cause sensory overload and meltdowns. Vigorous physical play may be avoided because of concerns about falling, sensory overload, and the potential for explosive outbursts and aggressive behaviors due to fight-or-flight reactions. Perhaps most unfortunately, the kinds of things done by the teachers who work hardest to make their classrooms fun for most kids – busy, colorful places with lots of “activity stations,” fun music, dancing, games – may be precisely the things that aggravate kids with SPD. As a result, these teachers may find that the harder they work to make class enjoyable and to involve these kids, the more they shut down or overload. It’s hard to imagine a more potent recipe for frustration and misunderstanding on both sides.

Brock Eide, The Mislabeled Child


Second, you should know this about me.

One of the greatest struggles in my life – a struggle that I have heard countless times in the lives of my friends and family as well – is feeling that I don’t belong: that there is no group of people among whom I can be completely myself and at the same time completely loved. It is out of this struggle that my parenting philosophy was born. My goal as a mother is to give my children a relationship (and ideally a whole family community) in which they will be listened to, understood, and unconditionally loved. Whatever societal forces are pressuring them to fit into a certain mold or to act a certain way, I want our home to be the safe place in which those forces have no power.

Now, I also have hopes and expectations for my children. I want them to be thinkers and readers; I want them to be wise and compassionate; I want them to love deeply and speak kindly. But even the wisest person has moments of foolishness; even the kindest person has words they regret. In those moments, I want my children to know that my love will not cease or waver, that I will always love them for who they are even as I help them grow and mature. And I want them to know that the rate of their growth is never a cause for shame, regardless of how slowly they may be progressing. The direction and the effort are the things that matter.


With both of those things in mind, putting Rondel in a special preschool designed solely to help him acquire certain skills by a certain deadline seems antithetical to my whole concept of parenthood. He is not a flowering bush that I can freely manipulate by well-timed applications of different fertilizers or hormones; he is his own person, uniquely designed and gifted, with his own path and timeline to follow. It is helpful for me to know the ways in which he is different than “normal,” so that I can anticipate his struggles instead of setting him up for failure, learn how to help him through difficult situations instead of flailing about in the dark, and access the accommodations he needs to thrive – but it isn’t helpful to focus on those differences as things that are “wrong” with him and try to fix them or train them out of him.

And my fear is that he will think just that: that we believe his way of being is inadequate or wrong, that we don’t accept him as who he is, and that we are willing to put him in an environment that stresses his sensory and emotional systems to the point of overload in an attempt to change him into someone else. It’s hard to think of a better way to demolish a child’s confidence in himself or to damage his trust in his parents’s love and understanding. When the music plays that only Rondel can hear, I want him to dance to that beat with freedom and fullness, holding nothing back in his pursuit of the calling for which God has designed him, no matter how strange or awkward that dance may appear to those who are deaf to the song. Speech therapy we can get at a private clinic, without needing to compromise our ideals in the process; the other skills he needs for life will grow in time, as he learns their value, in the context of love and peace and belonging.