I went back and forth on whether to write this post. I don’t have many issues with writing about Autism and our family’s journey with it. I’m okay with putting my life out there knowing I’m risking judgment and condemnation. But this one, I felt like it just hit differently. I feel that there’s so many different ways one can take this one and I can’t predict what the dominate consensus of this one will be. It might take me away from the group that made me feel the most at home in the beginning of my journey, parents of children with “severe” Autism.
Just to clarify, the quotes are for emphasis on the subset population, not an indicator that I don’t believe in the classification. However, this post is necessary.
I don’t think many understand fully what Autism is.
This isn’t just reserved for those in the “severe” community, but everywhere. And at one point, I felt that it was okay you didn’t really understand, that would come in time, right now you are loving and taking care of your child to the best of your ability and it shows. I applauded you all, cheered you on, and held your hands as you cried (both literally and figuratively).
But it’s not okay. It’s not okay that you don’t understand. It wasn’t okay that I didn’t understand. Our total and complete understanding predicates how we treat, act, behave, etc. towards our children and others within this community. It is this lack of understanding that drives us further and further from one another, causing this divide and anger that has saddened so many like myself and cause us to question our place within the community.
What Autism is.
It’s one thing to regurgitate textbook definitions or what you’ve read in the DSM-V and it’s another to actually comprehend all of what you’ve read. Many simply do not. Autism, at its core is a social-relational disorder. It is a neurodevelopmental disorder that causes an individual to disengage from the world and draw into himself, marked by communication and social interaction deficits.
Certain behavioral patterns are noted as well, but the disorder itself is not one of behavior. It’s not behavioral. As the parent of a child with many behaviors and as part of a community with children who exhibit many challenging behaviors, I can see how you would find that difficult to believe. I did at one point. But like all humans, I’m a lifelong learner, and I continued to grow into my knowledge of Autism, just as you will.
Behavior is communication. I know many have heard this behavior, but it is so damn true. BEHAVIOR IS COMMUNICATION. Our children have communication deficits, meaning they have no way to inform us of their wants, needs, desires, etc. Tell me something, if you wanted a drink and you had no means of communicating this request, and everyone around you didn’t know what you wanted or flat out ignored you, how do you think you would respond? My son used to throw his cup at us. Then he would come and pinch us. Shortly thereafter, he would begin to throw other things or bang his head.
As babies, we would cry if we wanted food, had a dirty diaper, or simply wanted to be held. Behavior means something, especially for our children. We just have to work a bit harder to figure out what they are trying to tell us.
People need people.
Humans are wired in such a way that we rely on others for our health and well-being. Our survival depends upon our interacting with others, our learning as well. Babies and toddlers do not just wake up one day a talk, there are these underlying learning processes taking place. From the moment they are born they are in the process of learning to communicate and interact with others. They instinctively pick up on language patterns of their parents, learn words from those around them, and form bonds with their loved ones.
For the child with Autism, they do not develop typically to other babies and children, and therefore they are not picking these language cues and communication patterns. They do not have the typical desire to interact with another. As children much of our learning comes from other children, and if your child is drawn into himself, he is not learning from others.
Communication and interaction deficits are the foundation of Autism. I would argue that everything else stems from there. Challenging behaviors are symptoms of these deficits not indicative of Autism per se. Autism also co-occurs with many other conditions. These comorbid conditions can further complicate Autism. For example, roughly between 30%-80% of those with Autism have a comorbid Anxiety Disorder as well (depending on which study you follow). Gastrointestinal issues are also common in our children, as well as Intellectual Disability and seizures.
These comorbid conditions, including medical issues, coupled with the deficits in communication can result in some pretty difficult to manage behaviors. My son would bang his head so hard his hair would fall out or scream whenever he would eat, it was later found that he had stomach ulcers.
I always implore parents to keep a behavior log, one where you document what happens before, during, and after a behavior occurs. Also keep track of what methods you used to assist in managing the behavior and whether they worked or not. They do not have an effective way to communicate, “my stomach hurts,” so they react in other ways to get your attention.
There are many parents in this community that completely dismiss the idea of comorbid conditions and simply want to hang on to the assumption that “this is just Autism.” Professionals often posit the same thing, and I find this to be incredibly problematic, especially coming from “experts.”
Behavioral issues are not “just Autism.”
Behavioral issues are symptoms, not causes. There is no neurobiological basis for behavior problems with Autism, as there is no neurobiological basis for Autism per se. This is why simply throwing medication at your child in the hopes of curbing behaviors is so hit or miss, there’s no biological foundation upon which the assertion “behavior is Autism” stands.
Note: I am not saying your child does not need medication (mine are on prescription sleep meds and CBD oil). I am saying the medicine is difficult to pin down because you’re trying to treat a symptom and not a cause.
Your “severe” child does not have severe problem behaviors because they have “severe Autism,” they have more challenging behaviors because their communication and interaction deficits are severe.
What if there are no co-occurring conditions and my child still has difficult to manage behaviors? This is a question I have received often. First off, that is amazing. Truly. I would still state that his behaviors are not Autism. Your child’s inability to communicate is severely impaired (non-speaking, only speak a few words, echolalia, etc.), they are living in a constant state of frustration at not being able to inform you of what they truly want, need, and desire. They are going to respond to situations in the only way that they can, through their behavior.
Your child may not have any comorbid conditions, but one day they may have a headache, as we all do, but he cannot tell us that. He may engage in head hitting, or scratching his sibling, running into walls, etc.
A common thing I see in our community is poop smearing, you may be wondering how the hell is poop smearing indicative of a communication or social interaction deficit? It is. Your child doesn’t engage with the rest of us often, remember? They live in their own worlds, and often do not see the need to engage with another person.
As I previously stated, they do not interact with others, therefore they do not learn from others. They are not aware of societal rules and what is or isn’t acceptable behavior. They have no problems dropping their pants in the middle of Walmart or digging into their pants for poop. They are not motivated by other’s reactions to disengage from these behaviors. Also, smearing the poop may fulfill some sensory need, but we would be unaware of this because they lack the communicative skills necessary to let us know.
Dear Autism Parents,
I don’t say all of this to dig at my fellow Autism parents. I say all of this because I love this group of highly dedicated and loving parents. I say this because I see so many of you giving up and I don’t want that for you or your children.
I say this to say that it gets hard as hell sometimes, but there are still ways in which you can help your child. Starting with addressing any medical issues. Ruling out any and all underlying medical conditions (because your child won’t engage in communication efforts if he has constipation issues, etc.).
Then dive into communication. They do not ever have to speak a word in their lives, but they do need a way to communicate, whether it’s PECS, picture boards, typing, AAC device, or sign language. I say all of this to say that I was this parent that was going to give up (multiple times), but I kept telling myself, “one more time, I’ll work so hard…one more time.” And I would keep going several more times.
My kiddo went from a child who self-harmed daily and aggressively attacked us and his teacher to about one large meltdown per week. We focused on his medical issues, we focused on his communication, we focused on bonding with him more. He still has challenging times, but he is far better today than he was a few months ago and we can actually see the light at the end of the tunnel.
I write this because I want to belong to this place that I once called home, but it’s so hard with so much anger towards others with Autism and their parents and vice versa. It stems from frustration, I get it, I was there (and still am many days). But we aren’t helping our children with this anger, we aren’t bridging gaps and creating bonds. We need to be a community that sticks together for all those with Autism, no matter how impacted they are.
All children are not the same, but all children are lifelong learners. They have an ability to be reached. I do not want any one parent to give up. I do not want any one parent to feel alone and helpless.
I write this because there’s so many posts aimed at this precious subset that speak of our invisibility to the rest of the Autism community, how hard it can be, or making the tough decision to place their child into hospital settings…and those are very valid and very real concerns. However, I wanted to go a different direction and find new ways to inspire parents and let them know that there’s some people out there to help you through.
I want to be that person that helps others through.
I write this with love,