On Questions
For our first post, we thought we would start by answering the questions we get most often.
For the first year - almost two of Ellis’ diagnosis, I (Mom) have waffled about how, when, and if I should talk about it. Depending on a complex web of factors, I might find myself very forward about it. At other times, I feel as strongly that Ellis’ autism is not his whole story and so I will leave it out completely. It is only now that we are talking about it more that I realize one of those many variables that has determined whether and how I discuss Ellis’ autism has been the questions. Oh the questions. As if autism can be explained through some basic FAQs. As if I even have answers that would begin to illustrate our particular experience. As if my answers somehow speak for a whole community of people that I am only just beginning to get to know. As if I don’t sometimes get a deep down uncomfortable feeling when I even hear a question, because the ways I could answer or should answer are so weighted.
I (Dad) used an audience based approach in disclosing Ellis’ autism. After informing a certain group of friends and family, I generally didn’t speak of it unless the topic was specifically broached by someone. I am keen on this NOT being his sole identifier while acknowledging it as being his fundamental nature and central to him as a person. This can be a tightrope at points as respects advocacy and awareness.
So, for parents like us reading, we hope this post resonates. For supporters seeking to learn, know that we know your questions are well-intended. Know that we don’t want you to stop asking. But also, maybe think about the implications of some of these FAQs before leading with them.
When did you know it was autism?
I mean… When did you know what you would be when you “grew up”? Was it a single experience that opened your eyes? Did it come to you in layers and waves? Did you even notice it was happening at all? And are you doing that thing now? Still? Or is it still developing and have you moved into other areas? For different people, the answer could be one or all of these. The short answer is we didn’t know until we were told, which was in May of 2021. Another answer is each of us, his mother and father, “knew” at different points, and knowing meant different things for each of us.
I (Dad) didn’t “know” it was autism. I suspected something was awry when his burgeoning language skills seemed to disappear. He always was sensory seeking that I was aware of, but there were repetitive behaviors that began to paint a picture.
He stared intently at wheels or objects circular in shape. He rolled cars across his belly instead of on the floor. He liked to hear the same songs or sounds repeatedly. And he at times seemed unaware of the boundaries of physical space. He might run full speed and stop short of the wall, or run into it at times. He didn’t seem to grasp the consequence of doing this.
I didn’t actually know until the actual diagnosis at 20 months.
After we were told, we knew in a different way. It wasn’t what we knew and did not know. It was now what we could see. We could now see not just that he played differently than other children at the playground, but how (which honestly we would not have seen for a while anyway thanks to COVID). We understood why no matter how the “pour and scoop” activities mom became obsessed with mid-pandemic (perhaps because I was beginning to suspect something) were presented, he would only sprinkle (there are still lentils in the carpet). We could see that it wasn’t just the Netflix Ba-boom, but that he was looking for the credits scrolling, and intro theme songs that repeat over and over. That he was looking and listening for patterns in his sprinkling, just like he was watching for them in the way credits rolled across the screen. That his peering into the eyes of the dinosaurs in his bedtime book had much more to do with their shape than the fact that they were eyes. We can now see we have to approach new foods and teeth brushing from a similar place of challenge because they are related.
We know it is autism. We suspected as such as we began the assessment process because of the questions they asked us and what those questions allowed us to see. Everything else we “know” we have learned much in the same way. We might look back at something now and say “Oh, that is when we knew.” But did we? And what did we know? And how does it make any difference in how we support him today? For me, this question is just one reminder of how important it is to stay in the present and not go too far down the roads of conjecture.
Where is he on the spectrum?
Speaking of avoiding conjecture and staying in the present… This question makes my skin crawl as a mother. When people ask this question, they are trying to figure out just how different is he? How “bad” or “severe” is it? Will he ever be normal? When people ask this question they are operating on a flawed premise that autism is static, and that there is a high, medium, and low setting that determines an individual’s ability to exist in society. They are looking for a fixed descriptor of how my son moves through their world. It is a question I would have asked too before I knew why it was such a problem, and I honestly hate being reminded of that.
This bothers me (Dad) on a molecular level. I cannot (and more importantly, would not) attempt to quantify his abilities based on inane curiosity. Just like the actual spectrum of light there are frequencies we can detect with our senses and ones we cannot, We know they exist through scientific experimentation, but finding where true blue ends and deep indigo starts is an exercise in futility. They both exist. Period. With neither holding any more value than the other. I’d also add they are useless without the other. We NEED all the light in all its various manifestations.
Autism Spectrum Disorder is dynamic. That is to say a person can exhibit different levels of behaviors and responses depending on context, triggers, available supports, sleep, nutrition, etc. etc. etc. Kind of like how you would be a very different person at home in your sweats on zoom and taking stretch breaks and walking to the fridge when you want to, than you would be in a noisy office with one 30 minute lunch, three team members out sick, and a boss calling you every hour about a report you simply do not have the training to complete on their timeline, right? The big difference in those scenarios are the demands, supports, and environment. Even without the training, if you have a supportive boss or colleagues you can reach out to, you can probably get it done even if it isn’t exactly how someone else might have. Also, in one scenario the demands are unfair and disrespectful of your basic needs as a human. Who set that standard?
In short, I hate this question because it is flawed. It reminds me that this caring and curious person who is asking is judging my son’s competence, future potential, and ways of existing against a standard that was not built for him or people like him. It reminds me that the world is expecting him at some point to “overcome” whatever his challenges are so he can be like “the rest of us”, or be an exceptional savant, or perhaps need attendant care and assisted living for the rest of his life. Check the box and treat him accordingly, as if he might not move and flow through those different states just like you do in your normal life. Also I hate this question because I don’t know the answer because I cannot see the future. So I answer by helping the asker understand that this is a flawed question, and I try to do it without showing how much I hate this question because they didn’t know. I say, “Actually, if you speak to people in the autism community, this is an idea we are moving away from. High or Low functioning implies that there is only one standard of normal, and we know that is not true or fair. Ellis is very high functioning in some areas, and has challenges in others, like most of us. His are just more pronounced because of the way they interfere with him operating as expected in our society, and how they impact him getting his basic needs met.” I try to say this with a smile.
Please stop asking this question. If you are curious about someone’s challenges, you could ask what kinds of supports they need, or what are some areas where they are thriving. Because if you are asking because you want to give support or understand their experience, that is some of what you want to know. So just ask that.
Have they told you if he will talk?
Who? The fortune tellers?
Ok, sorry. Had to get that out. Ellis is already talking. It does not sound like what one expects a 3 year old to sound like. In fact, it isn’t always verbal. Let me start by getting the emotional response out of the way here. I am Ellis’ mother and since before he was conceived I have imagined a little voice crying out “Mama” when they need me. I have heard Ellis say “mama”, I have no idea if he was actually talking about me, or just babbling. I don’t know if I will ever hear that. This question reminds me of what is taken for granted. For most parents, this is not a question. It is assumed. What I wouldn’t give to complain about my kid calling me all day for no good reason, or to lament the moment he goes from calling me “mommy” to “mom”. I’d kill for that. But also I wouldn’t, because why would I choose jail over all the amazing communication I do get from him? Every day, Ellis is learning how to get what he needs and how to make himself understood. That it looks different and sounds different should not matter so much. But this question makes it feel like it is all that matters. Like if he doesn’t “talk” the way he is expected to one day, the talking he does is not good enough.
Unemotionally, of course “they” have said Ellis will talk. “They” are his two speech professionals and his other therapists who see him developing language. Speech and Language are two very separate things. I did not think this way until I learned about language as expression and speech being the motor process by which we make sound. He can and does communicate. We work as a family to bridge those gaps. As long as he feels loved and supported he will speak when he’s ready, and we will wait until then. We take our cues from him.
What does it mean when he does that?
Ellis is a fountain of sounds, emotions, smiles, hugs and speed. I can only interpret that for which I know intrinsically looking into my child’s eyes. It might be pure joy, or anger or fear. I can only be grateful that he comes to me or my wife in those moments. If he includes someone else in these actions I think they should be grateful too. If he trusts you wonderful things happen.
I am not Ellis’ translator. Trust me, as his mom, I wish some days that he had one. I wish every day that it could be me if and when he needed one. But I do not speak for my child. He speaks for himself. Sometimes, he is able to make his ideas and needs very clear. Sometimes, it is not clear what he is trying to say. Other times still, what he is saying isn’t meant to be understood by anyone else and it’s just his. If you want to know what he is trying to say, you can engage with him the same way I do. Because isn’t that what communication is about? Putting out signals (verbal or other kinds) to connect with another person? Why should I have to be the conduit for your connection with him as a person? Also, I am not fluent in Ellis, as much as I wish I were. I might be able to tell you what it means as a way of supporting him and preventing frustration, and when I can and when it is needed I will. But what I wish for Ellis more than anything is that when he meets people, they value him as a person and they try to understand him just like they would a person who speaks their language. If you want to be supportive of me as a parent, recognize that I spend all day telling people what I think Ellis wants, needs, thinks, likes, doesn’t like. And I carry the fact that I could be wrong all day. And I watch people limit their interaction with my child by going through me. When other parents try to facilitate interaction between Ellis and their child, I am often there to narrate, “Ellis is still working on introductions, but I see he likes the glitter on your shoes. Wow, those are neat.” You know what makes my heart explode? When the child looks at Ellis and smiles as if HE was the one who said “I like your shoes”. When the parent looks at ELLIS and says “Thank you, they are our favorites too,” instead of looking at me. Because he did. He ran straight for them like they were the only thing that mattered in the whole world, and he touched them and admired the way they sparkled, and how the different sizes of the glitter felt under his fingers. We’re still working on “Can I touch your shoes please?” But what three year old isn’t?
There are so so so many questions when it comes to raising a child with autism. And the pressure to know the answers can sometimes get in the way of just being present with your child. Most questions are harmless and come from a place of wanting to understand. And, as a parent of an autistic child, I am more than happy to give my personal answers (see this blog), because I want more people to understand. But when you are asking, consider what do I want to know and why do I want to know? Is my question rooted in normative expectations? Could I ask Ellis, and if he understood how would it make him feel about himself? There is nothing wrong with asking questions, it’s just not as simple as you might think. Kind of like autism.
