I was asked by Bia Bella Baker to talk about my knowledge of autism. This was back in March, so it’s taken me a while to get to it. I actually wrote it the same day, but kept it pushed back until now to work on it more. The reason is because I find it tough to call myself knowledgeable about autism. Let me explain:
I work with autistic students who are at various levels of the spectrum. I’m the parent of an autistic child who is high on the spectrum. I’ve taken classes on how to work with these kids and learned from own experiences as a parent. Yet, I can’t stand here and declare myself as someone who can talk about length about autism. Part of it is because I don’t have it, so I’m still viewing it from the outside. Also, it’s a spectrum for a reason and that’s because it’s not the same for everyone. My son responds to a reward system to help him deal with transitions and minimize negative behavior. Others don’t care about such things, so you need to find alternatives to helping them. So, I can only talk about what I know, which could be entirely different from another special needs parent. Guess this is a long disclaimer.
Truthfully, the biggest tool in a parent’s belt is patience. There will be great days and nightmarish days, but you need to be patient and calm. Not all the time though because you will sip at times. It can be stressful and nearly every parent has a moment where they yell or cry or make a mistake. This can be painful and disheartening, but it isn’t the end of the relationship. Mostly because it can be a shock to their system, which may trigger a meltdown. You walk away feeling like you’re a terrible parent. Thankfully, this is temporary because you remember that you love your child once you calm down and return with a clearer mind. At least, that’s what should happen. There are situations where a great mistake occurs.
One thing that I think people believe is that those who are autistic can’t feel emotions. I’ve met parents of autistic children who act like they’re working with a heartless rock when that’s not the case. Even someone who is nonverbal has emotions. They can get scared and angry and sad. They can be happy and recognize that they are loved even if they don’t understand the emotion. A parent who loses their patience can do damage if they don’t return to show that they still love the child. Soft voices, hugs, kisses, or anything that will show you aren’t angry. It really depends on the child. This is essential regardless of if a child understands the words because they will read faces and voice tone. Again, this is from my own experience.
Now, you might be wondering about the picture since I’m saying mistakes happen. Well, that is true, but there’s a difference between mistakes and being a shitty parent. I’m being kind of blunt, but I’ve seen it happen. First, you have parents of autistic children who deny that they have it. This results in them forcing the child into situations that they can’t handle without adjustments or are beyond the skills that they have. They won’t suddenly learn everything they need, so damage is done to their progress. Sometimes it creates negative behaviors that are impossible to reduce or eliminate by the time they are older teens or adults. Commonly, those with autism need routine or steadiness, so they won’t break away from their comfort zone even if it includes negative behavior. I feel that this is easier to handle when the child is younger because all kids are dependent on their parents early on. So, they won’t feel different from their peers when their behavior is being adjusted, rewarded, or punished.
Let’s get to the punishment part now. By punishment, I mean the removal of something that they enjoy. I’ve done this before and it’s a habit I try really hard to break. This is fairly self-explanatory because we’re used to it from long ago. We do something bad and get grounded or having something we love taken away. This makes us not want to make that mistake again. With autism, you’re coming up against a variety of factors that can include impulsivity, inability to connect actions with consequences, and anxiety in regards to transitions. So, they may impulsively do something wrong. The parent bans their favorite TV show for a month, but they can’t see that this is associated with their actions, especially if their mistake wasn’t TV show related. All they know is that they are being punished and their comfort zone has changed, so they are upset. This can be traumatizing and lead to more negative behaviors instead of reduction. Parents who continue doing this when it clearly increases anxiety become a problem, especially if they refuse to stop in the face of growing issues. For example, a child making a mistake and going right into a meltdown due to fearing punishment before an adult can respond.
It’s better and more effective to go with a reward system that is immediate. Stickers, candy, TV time, and anything else that is simple and they love will work. I’ve done sticker systems with my son to help him with eating. When he earns enough, he can earn a bigger prize such as a Funko Pop or Lego set. The reason this differs from punishment is because it’s all positive. For example, a child refuses to eat dinner and you respond by taking away their favorite bath toy until they do what they’re told. Even if you get them to eat, it isn’t a strong achievement and can fall apart due to it being a negative creation. Instead, you tell them that they get a sticker of their choice for every meal that they eat. Now, failing doesn’t result in them losing something that they already have. It means they didn’t earn a sticker and can try again the next day. The more times they succeed, the stronger the positive behavior is. Of course, it’s important to explain this to them and be consistent. I was told recently that you want to have the rewards be solely for that event too. This is why I have candy for my son eating his lunch and stickers for breakfast since the two meals have different issues.
I’ve just kind of ranted here, so I hope I made some good points. Parenting an autistic child is always a challenge that changes as time progresses. You find new methods or the child develops new habits, so you never know what the day will hold. That’s why patience is important as well as accepting that this is how your child is. Not to the point where you don’t try to help them learn and develop coping mechanisms. Acceptance means that you understand that things will difficult and you need to focus on the child that you have instead of the one you wished you had. That sounds cruel, but I’ve met a few parents of autistic children who talk about curing them and gaining the child that they always dreamed of. Hurts my heart there because while these parents are thinking of a child that doesn’t and will never exist, they are ignoring the unique child that they have.