Surviving as a Parent With an Autistic Child
I know, it seems like we’ve heard this all before, right? Dealing with autism is hard. VERY hard. It tries the best of us to within an inch of our sanity at times. We get hurt. We make mistakes. We misunderstand. We just cannot connect to our ASD loved ones in the same way we connect to other neurotypicals. Many of us are baffled as to why. Fortunately, ASD parents are often compelled to research the actual science that is daily attempting to explain ASD and if you are one of those who tossed aside the “vaccines cause autism” idea and follow the path of righteous science instead, then good for you and hooray for us!! We will have a more enlightened and possibly easier journey ahead of us.
So what exactly is happening in the brain of someone on the autism spectrum? We can see they don’t like to socialize, we can see they are hyper-focused, we can see they display “weird” mannerisms and repetitive movements, but why? Well, in my generation, I’m sorry to say that a child with ASD was deemed strange and overly sensitive. A brat. And an adult with ASD is just a plain asshole (pardon my language). Thankfully, today we have a much better understanding thanks to a growing body of research and the technology that helps us carry that research out. So without further ado, let’s talk a bit about how the autistic brain works.
As of 2020, the prevalence of autism in the United States can be boiled down to 1 in every 54 births. How many people do you know? I bet more than 54 if you think about it. Chances are you know someone on the spectrum. ASD is often found with comorbidities such as ADHD, anxiety, bipolar disorder, clinical depression, sleep problems, and gastrointestinal symptoms. This makes dealing and living with autism that much funner! Have you ever tried to quell a panic attack in an autistic child who can’t stop running up the walls because his ADHD is so severe? I have. It is damn near impossible. Remember that we love these people, and life is excruciatingly hard for them because of how their brains work, not because of the choices they make. It was like that the day they were born and it will be like that until the day they die. This is why patience is key, and precious but spare to a parent who is on the spectrum themselves; indeed to all parents with autistic kiddos.
Katherine Stavropoulos, Ph. D of psychologytoday.com discusses four popular theories surrounding the brain basis of autism here and here. And this information is interesting, to say the least. I’ll break it down here, but it won’t do justice to the whole work so you should read it for yourself.
The first is the Social Motivation Hypothesis. This way of thinking posits that the lack of social interaction (a core symptom of ASD) is due to a lack of stimulation in the reward center of the brain. In other words, autistic people don’t find social interactions rewarding like neurotypical people do. They don’t have fun playing or hanging out with others, their brain doesn’t react to these types of situations to the extent that it makes them want more. On the other hand, the hypothesis points out, this may explain why their limited interests such as video games, cars, or washing machines are so intensely captivating for them. Interactions with these things is extremely rewarding, and this leads to the child having difficulty releasing or walking away from a preferred activity. It works almost like a substance addiction does as far as brain activity goes.
The second school of thought Dr. Stavropoulos discusses is the Overly Intense World Hypothesis. This hypothesis talks about social and sensory factors. Basically what it means is that the autistic brain experiences way too much brain activity going on. So at any given time, the brain can be absolutely flooded with input that it cannot make sense of and that may be why the ASD child has difficulty paying attention, obeying, staying on task, or coping with life in general. It is the prefrontal cortex and the amygdala that experience this overabundance of activity. This is interesting because they are two sections of the brain that are far divided in ancestral biology and purpose. The prefrontal cortex is where all the higher brain functioning happens-executive functioning if you will. The amygdala is a small, almond shaped part of our “lizard brain” that identifies and tags things as scary or threatening. Two vastly different brain structures with two vastly different purposes involved in the same darn thing. Interesting, huh?
Now just to butt in and add my DEFINITELY NOT SCIENCE but my own little “what if” here, I wonder if the involvement and hyperactivity of the amygdala in the brains of our ASD kiddos contributes to the level of aggression we often see with (especially male) littles on the spectrum? Just a thought.
The third thing talked about in the articles mentioned above is the Theory of Mind. Ah! an actual theory-we have graduated from hypotheses! Behavioral evidence suggests that children on the autism spectrum have difficulty understanding that other people think differently than they do-that “you” don’t know everything “I” know. They cannot conceptualize the thoughts, feelings, or intentions of other people. This obviously leads to deficits in social skills. When asked to think about another person’s mental state, an autistic brain will activate in different areas than and make different connections than that of a neurotypical child. So the brains here are not at all acting the same way even though they were asked the same exact question.
Finally we have the Mirror Neuron Hypothesis. All brains have mirror neurons. These allow us to mimic the actions and behaviors of others when we see them. These cells also activate when we perform an action ourselves. These cool little cells allow us to predict another person’s behavior and act out the same physical movement they do (physical disabilities and restrictions aside). Mirror neurons may help us to translate the actions of others to our own perspective. Imitation is one of the very important ways that a child learns. Unfortunately, the mirror neurons in the autistic brain are altered from the neurotypical brain. When they see pictures of somebody doing something, they can say what that person is doing, but they make errors when asked to perform that same action themselves. So basically, because of the difference in the way the mirror neurons work in the ASD brain, kiddos with this disorder have a great deal of difficulty understanding and predicting other people’s behavior.
One last point to hit, because I know we are all waiting for it ) those of us who live with or love someone with autism): the Autistic Meltdown. Aaaaah, that favorite of all autistic parents and often the most interesting time(s) of the day when your child stops receiving input and starts imploding-followed by a massive and sometimes downright scary explosion of frustration, anger, fear, sadness, and often violence. What the hell is happening here? Well, the answer is simple and most ASD parents know it, but for the rest of us, I will elaborate. When the autistic brain is experiencing activity that goes above and beyond the normal hyperactivity of the various brain structures, it becomes overwhelmed. When this happens, it shuts down. It simply stops processing input as the overload leads to an involuntary cascade of neurological events while the brain is trying to find equilibrium again. It’s like trying to keep your footing and stay calm as you are lashed back and forth on the deck of a ship caught in the storm of the century. Which way is up? Where are my feet? Will the waves ever stop crashing over me?
If that analogy doesn’t do the trick then think of an overly crowded nightclub with one emergence exit after a fire has broken out. Panic. Sheer and utter chaos. There are no orderly lines, people get trampled, some die, and the structure is completely destroyed before rescue is even in sight. Gruesome thoughts, yes? But we have no control over the storm. We have no control over the fire. All we can do is try to get to safety again. This is what a meltdown is like for an autistic child. You can scream at them and wave your arms in their face all you want, they cannot hear you, cannot see you, cannot process anything you are trying to convey to them. And how do we handle The Perfect Storm? Do we punish it? No. We wait it out. It is nobody’s fault-it’s not the boat’s fault, not the ocean’s fault, not the star’s fault, it is just a combination of the right kind of factors that brings the storm to pass. And all we can do is shut up, hold on, and wait.
As parents of autistic kiddos, we understand that yes, we may sometimes be physically or emotionally hurt by what transpires during a meltdown, especially if our children are as big or bigger than we are. We may occasionally find ourselves curled up in the fetal position in the middle of a lake of orange juice and cheerios that came from NOT THE PINK BOWL missing chunks of hair and sobbing as we miss that specialist appointment we have waited eight months to get. I have been on the receiving end of this myself, many times, and as my son grows older and stronger, I do fear for my future self. But what can I do? Not a damn thing. I can get him all of the recommended services (and there are plenty), put him on all the right meds, and it may still eventually happen. Because within my womb I created another human brain that is simply built differently than most people’s and accordingly marches to a different drum. The best I can do is be strong and patient. To repeat the mantra “It’s not his fault-I love my son” over and over when times get tough, and to seek support and further knowledge by finding others like me and doing the research it takes to keep up with modern psychology and medicine. That is all any of us can do.
I know that during the current pandemic and indeed since all the lockdowns started, we are seeing more and more undesirable behaviors in our ASD children. I am suffering right along with you. And we must remember, so are they. They suffer at a more escalated level than we do, too because of how intense every single little thing is. To survive it takes patience, wit, creativity, and patience. Did I say patience twice? Yes, I did. On Purpose. Take care of yourself as often as you can. Make self-care a priority, otherwise, we will lose our minds and be of no use to anybody. Til next time,