My two-year-old was changing. In the standard way that a regression appears, things drifted: less speech, then almost none; less eye contact, and then none; not looking when her name was called; her sleep problems became worse; she became scared in situations she was once comfortable. I knew what it was already. I was afraid of this drift making communication iimpossible. I HAD to be able to talk to her. For both of us.
I knew only the most basic details of what Autism was, ironically. Looking back at the ignorance of the Way of Being that permeates my family makes me sad that I didn't have the opportunity to understand myself and my family before then. Her diagnosis was a key to understanding myself, my husband, my parents, and my grandparents.
On the day of my only child's diagnosis, I received a handwritten piece of paper with her diagnosis (which was followed by a printed version later). I was told to seek out 25-40 hours per week of ABA therapy plus speech and occupational therapy and to get her into preschool on an IEP. There was a sticky note on the paperwork with the name of a book to help me acclimate to the expected future. The book was 10 Things Every Child With Autism Wishes You Knew by Ellen Notbohm.
As my daughter is turning 11, and I've learned so much about neurodiversities, I picked up this book that is still on my bookshelf having moved with us over the past nine years. When I first read the book, I was thirsty for knowledge and ways to stay connected with my daughter and prevent her from losing more skills. I didn't know what I was doing or how to keep her safe. The book made me feel vaguely sorrowful. The book made me question if I could have the close connection we had forged in her infancy and toddlerhood. There was a separateness--an us and them-ness--in the book that was never explicit, but it terrified me. Looking back at the book with new eyes--understanding now that I am Autistic and my husband is Autistic and that we naturally made an Autistic child--I want to give to new parents of Autistic kids just being diagnosed a new message.
My message is of connection, understanding, and hope.
Above is the contents page listing the ten chapters and ten things Notbohm believes that Autistic children want others to know. Below are my ten, which I shared as posts on Instagram and Twitter in September 2022.
1. "I am a whole child" is an attempt to detail that a person is more than one thing and also notes that people shouldn't be defined by being only "fat," "myopic," or klutzy," which, in context, perhaps suggests that people shouldn't be labeled by their flaws. The author suggests that by being labeled as Autistic first, we may set the bar too low for children.
If we are using a model of Autism where we see it as a flaw and an impediment...if we are using a model of Autism where is a shame, this makes sense. Why would you want your child seen as broken? The suggestion as that we should be polite and not really mention The Autism. Unless we must.
Autistic people aren't broken versions of neurotypical kids. Autistic kids are wired differently from their very DNA to be different and see differently. This is an evolutionary tool. Some of the brightest minds in history are likely Autistic minds. The world is already going to try to get Autistics to conform. That's not your job as a parent. Your job is to nurture the child you have into being the best version of the self they are. They will need support. You will need to interpret the world--just as a parent for any child. You will need to remove barriers. You do not and should not at any point try to separate your child from their Autism. Autism colors everything. The way the interface with the world is through the nervous system of an Autistic body and brain. The suggestion in reminding parents that you need to remember you have a whole child is that it's hard to see that. I don't think it is. Your child is whole, unbroken, and Autistic.
2. "My senses are out of sync." This chapter details the heightened senses of Autistic children. There's not much I find wrong here, but there are things missing that I think are very important.
Sensory processing issues are a common experience for Autistic children and adults. This can change over time or with occupational therapy. It's not likely to completely disappear. It also important to note that not all Autistic children and adults have overreactive sensory systems. Some are under reactive. Commonly seen in Autistic children is under reactive vestibular and/or proprioceptive systems--those than inform us of our bodies in space, balance, and what our body is doing in motion. This can cause some children to be unable to feel their bodies without motion leading them to always be moving.
The other, possibly more important, point that is missed is how wonderful some of the experiences are in having a sensory system that works better than typical people's functions. Looking at an aquarium, watching the ocean waves, the smell of an orange tree, hearing classical music in surround sound, getting into a bed with freshly laundered warm sheets, the elation of swinging on a playground swing all are so much sweeter for Autistic children and adults.
3. "Distinguish between won't and can't." Too many times, Autistic children are accused of defiance and manipulation when the fact is that they are trying to stay safe and comfortable and get their needs met like anyone else. Always assume good intentions from your child even when it appears to be the opposite. There's a reason for the behavior, and it's usually a request for kindness, love, or assistance.
4. "I am a concrete thinker. I interpret language literally." Children are concrete thinkers. They learn the meaning of idioms and metaphors as they grow. Autistic children can and do also. Some take longer to learn these than others. It may help Autistic children to learn when we show them connections to the whole.
In the book, the author suggests that Autistic children can't understand what's being said to them unless it's concrete and specific. I would argue that Autistic people are often Gestalt learners and need to understand the bigger picture in order to process the why and then the details of how to get the job done within the context. So while sometimes Autistic children don't understand, they can. They can learn on their own or be aided by targeted teaching. Interestingly, Notbohm talks about Gestalt learning in the next section of the book, but I think it's important to acknowledge here and everywhere.
Instead of telling an Autistic child a partial answer, give them the whole answer. So, if a child hears someone say "every cloud has a silver lining" and asks for an explanation, you can say that it means that sad situations can also have hope. And, you can explain, when it's stormy and feels like it's never going to be sunny again, storms pass and a silver edge of the cloud reveals the sun is coming. The storm is a symbol for sadness and the sunshine peaking out is a symbol of hope. Most people stop at translating the idiom. Explaining it gives a deeper understand as well as an understanding of how language works. This is useful to understanding communication, poetry and prose, and other phrase, titles of books and song lyrics.
5. "Listen to all the ways I'm trying to communicate." Notbohm focuses on echolalia in this section, which is the repeating of words and phrases from other sources like movies, shows, books, songs, or just from other people talking. She notes that while many sources call echolalia meaningless speech, it's meaningful to Autistics. Points for this as it's true. Echolalia is the application of useful phrases to situations. Repeating words, phrases, quotes or lyrics can also be verbal stimming. It's not always easy to know in the moment which it is.
However, communication for Autistics is complex just as it is for neurotypical children and adults. Actions, body postures, use of scripts, going quiet, being loud, eloping, aggression, and meltdowns also communicate things. It's very important to work with a child to learn about what happened and what these things mean because unlike neurotypical behaviors, Autistic behaviors are not always simple to decipher. The Autistic person provides the key better than anyone else. In the case of a child who doesn't yet have a communication method, you must build a close and trusting relationship in which you observe with curiosity, and you should also seek input from Autistic adults when needed. There are forums available on most social platforms that allow for this.
It can be difficult for non-Autistic people to determine the intention of an action by its outcomes. Autistic people, especially children, may not be able to predict the outcome because they can not predict what non-Autistic people will do in response to them. This means that the actions of Autistic children are communications, but what they mean may not be what they "seem" to.
6. "I'm visually oriented." The advice for helping Autistic and ADHD children is to offer visuals over anything else. Visuals are great learning tools for everyone, but Autistic children can and do learn other ways. I don't use a visual schedule with my daughter. I simply tell her what the plan is for a given day. There's no issues with that. She doesn't forget this--ever. I need reminders for things. I have a day planner where I write down what I'm supposed to do because I will forget some things. I never know what will stick and what won't so I write down everything.
For Autistic children, visuals can feel overwhelming sometimes. Many Autistics glance at things and look away. Many don't make eye contact while listening because it's a distraction (and a discomfort). Visuals are great, and I recommend teaching with visual tools but also using other learning tools as well because Autistics aren't just visual learners.
7. "Focus and build on what I can do rather than what I can't do."
In the social work and mental health communities, we use the term "strengths-based" a lot. A strengths based approach tries to separate from a deficit model. The idea is what is said in this section of Notbohm's book--focus on what I can do. I appreciate that there isn't a focus on hurry up and get a bunch of treatment so your child will become less Autistic.
Humans have a bias for looking at the negatives. It's just called the negativity bias. It's a tendency to focus on the negatives and accept the positives as the norm or the expected results. This and the anxiety for parents not familiar with Autism can be a reason why some parents have a hard time accepting their child's diagnosis, presentation, differences, etc. I feel that Notbohm is writing this section to parents who are overly focused on fixing their children to their detriment. I appreciate that sentiment. I would like to invite parents to always use a strengths based position integrating strengths into learning of new things. I would also like to invite parents to enjoy the people their children are. More on that in number 10.
8. "Help me with social interactions." Autistic people can be social, shy, or both at different times. Autistic children and adults have social differences, but research shows that Autistic people tend to communicate well with each other. We tend not to absorb all of the unwritten, unexpressed social rules that other people just know automatically. Explain things. Explain all the things.
Don't try to change those quirks in an Autistic child. Being different, being weird, is pretty great. Most Autistic people like being different. Co-occuring conditions aren't usually fun, but being Autistic means seeing the world in a way that most people don't, and that's pretty awesome. Indulge kids special interests, stims, and assorted weirdness. Help them find others like them. If you aren't being yourself, you can't find true friends. Allow your child to seek out others like them and watch them thrive.
9. "Identify what triggers my meltdowns." Yes, absolutely pay attention to your child's triggers. Anticipate them. Accomodate them. Don't expect that because the event you're taking them to is really cool that they can overcome their own nervous system to get through it. Life as an Autistic person means you don't always do all the same things as everyone else. You MUST be ok with that.
Just as important is identifying those "glimmers" that bring contentment, peace, and joy. Sensory experiences can be overwhelming and cause a meltdown. Good sensory experiences can bring euphoria and be implanted as a core positive memory. Be a shield for your child against triggers and a catalyst for glimmers. This will bring you joy as well.
10. "Love me unconditionally." While the advice to love unconditionally may seem like nothing to have a problem with, I do--a little. Sorry.
It's a requirement when you become a parent that you love your child unconditionally. Without regard to who they are or what they do. We love them. That's the deal.
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