I’ve been dancing around writing something about this for a long time. I’ve mentioned that my son is on the spectrum. Earlier this year, we had the official test . . . or was it late 2019? Either way, he got an official diagnosis of autism. It was a much longer phrase that I’ve forgot, but it’s what people used to call Asperger’s. That doesn’t even work right now, but knowing has made things both easier and harder. It explains why my son does what he does, but it makes it more of a challenge to help him through it. Let me try to explain in my own words.
Yes, these are my own words, thoughts, and opinions.
Autism is a spectrum disorder because it isn’t a ‘one size fits all’ situation. Every person who has autism has their own flavor of it. Some are non-verbal while others never pick up on when they have to be silent. Some have physical challenges while others are strong as an ox and fast as a cheetah. Some are terrible students while others get straight A’s. It always comes down to the individual, which people seem to forget. So, what helps one could be an utter disaster for another. That’s why getting advice and opinions can be so frustrating because it doesn’t usually take your specific kid into account. Over the years, I’ve had many things that irk me as a parent in both what people say or how things work, which is what this post is really about.
Are You Sure He’s Autistic?
I truly hate this question when somebody asks me about my son. Yes, he is talkative and able to run around with other kids. People seem to expect him to be non-verbal or socially distant. The thing is that an autistic person can be very social. They simply don’t get all of the cues, which is what my son is like. People will ask this question and then I’ll tell them to watch. After a few minutes, they’ll see that there is something different about him when compared to the neurotypical children. It’s a rough question to tackle because it comes off as insulting. Do you think I say it to get special attention or give him an excuse for some of his behaviors? No! That’s ridiculous because these things make life harder for him.
I Can’t Wait Until They Cure Autism
This goes along with ‘Autism is a disease’, which I’ve heard out of one or two parents. All I have to say here is ‘FUCK YOU!’ Seriously, this isn’t a disease. There won’t be a cure. It’s how these children and adults are naturally wired, which is different that what we have established as ‘the norm’. More on that nugget later. I truly find this line of thinking infuriating because it means you think my son is sick. That he’s defective and the only thing to do is cure him instead of helping him become the strongest him that he could be with this. Note how we say this for mental disabilities and not for physical ones too. I don’t see many people saying that those born deaf are diseased. Those that do are rightly yelled at.
Parents of Autistic Kids Are Falliable
Maybe it’s just at me, but I always get the feeling that I’m expected to be the perfect saint when it comes to raising my son. I’m writing a playbook for raising him as the game is progressing. Most of the time, I feel like I’m doing it by myself too. So, I’m going to get frustrated and exhausted and stressed. I think every parent of an autistic child, especially single ones, hit a point where they are about to break. If you don’t get to pull back then you explode a bit in terms of yelling or crying. This is reality. We don’t like to admit this and those on the outside tend to judge. It’s just such a whirlwind because:
- Part of you examines the past on how you could have done better.
- Part of you is locked into the present and trying to handle what is happening.
- Part of you is worried about the future of your child since:
Society Really Wasn’t Designed for Autism
Right to the point. One of the biggest reasons an autistic person has trouble is because the strict guidelines of our society don’t factor them in. The flexibility we see is entirely for the tightly packed differences in neurotypical populations. Accommodations that are made have to be fought for and they make the child stand out, which can bring about negative side-effects. I still remember a sub job in Florida where a class bully would set off the autistic child to stop the lessons. You also have children and their parents thinking it’s ‘unfair’ that an autistic child gets ‘special’ treatment. That’s only school too.
Autism comes with a difficulty in understanding social cues. That means, things can be said ‘incorrectly’ or misunderstood. People are very quick to assume the worst and autistic people don’t walk around with a sign on their chest. They don’t step into a room and loudly declare it either, which shouldn’t be how it goes anyway. So, mistakes happen during interactions and it can roll out of control. I watch my son make a slip and it becomes a disaster for him because he’s aware that things went wrong. Autistic kids can be very focused on themselves because we raise them to be highly aware of what they say and do. While this can help them be cautious in their interactions, it also means they are more likely to take their mistakes to heart. It turns into it always being their fault when that simply isn’t true.
What Are His Special Skills?
At some point, people began to believe that those with autism are savants in some field. It is like they think the difficulties in other areas means they’re a genius in others. That really isn’t the case. I’ve seen my son show skills in multiple areas, but the challenge is getting him to work hard and stay on the path. He gets impatient when things get tough and decides that he’s mastered enough, so he moves on. This is fairly common in autistic kids, especially if they are afraid of having a meltdown and decide that it’s easier to stay away from stressful situations. As a parent, I try to nurture my son’s interests and skills without pushing too hard. At least with my situation, I’ve found that he doesn’t gather interests and skills, but replaces old with new. Time to learn fractions? Now, he doesn’t seem to try with division. Reading ‘My Hero Academia’? Not sure he wants to go back to ‘Captain Underpants’. Personally, this worries me about things because society demands that people be multi-purpose instead of singularly focused. Be nice for all of us if the latter was allowed without shame and criticism.
*Insert Any Parental Advice*
Look, I know the advice comes from the heart and means well. Some of it even works, but it gets frustrating when the giver begins pushing. It doesn’t help when I’m talked to as if I’m either an idiot or don’t know my own son. You get two camps of shaky advice that can upset you too. One is another parent of an autistic child who speaks as if what worked for them will work for everyone. They don’t realize that every person comes with their own flavor, so they give their advice as gospel. Then, they get annoyed if you point out how it might not work for your child. The other group are parents who don’t have autistic children and give you the generic advice without listening to you. That last part is essential because there are parents who give advice, listen, and understand. With these others, you point out that your child is autistic and they don’t really ease up. It can really drive home the fact that your child will have a difficult journey when compared to others and that you, as a parent, can’t rely on established methods. Again, I know these usually mean well, but they can wear down on a person especially if one is simply needing to vent or get their own thoughts out.
We’re All a Little Autistic
I’ll admit that I thought this long ago at some point. It was when people talked about Aspergers being connected to creativity. This mentality didn’t last very long because I actually looked into it. While I had autistic markers according to the list, I didn’t react the way an autistic person does. That’s a big factor. My son and another child could be hit by the same stimuli. Both can become unfocused and stressed. The neurotypical child will get upset, but can be brought back fairly easily. My son could lose it and act like the entire world is collapsing around him with very little ability to pull back. He’s gotten a lot better, but things still happen. Parents of autistic kids always fear regression because it can be triggered by a single event that most would consider benign. So, we really aren’t all a little autistic. It’s just that both groups can share the react types, but the size and scope of such reactions differ greatly.
This is a longer than usual post because I felt like I really needed to get this off my chest. I deal with people and events that connect to these things both in real life and online. I’ve never reached a point where I’d hide that I have an autistic child, but I’ve seen others go that route. Parents of autistic children are already under a lot of stress because the love of their child is matched by their worry. Some of us even get upset that our love isn’t enough to handle the situation when things get really rough. Venting to others tends to come with judgement even among the autism circles since many prey upon these groups with the promise of cures and causes. I never imagined the minefield I would wander into when I became a father, but it does feel like a daily battle to keep myself on the right path. Every time I’m made to feel like a failure, idiot, or loser by strangers or those who are close to me knocks me down a few pegs. Can’t stay there for long because then I become useless to my son who needs me to at least try. This is a difficult journey that most don’t understand, so I hope this does clarify a few things.