Accommodations. We talk about them with regards to our children. We advocate, speak out, and try to educate the public when they judge our children. And they do judge. At one time or another, our children have all been the target of a stare, off-handed comment, or avoidance because of their behavior in a certain situation. We try to educate people that our children have autism, it causes them to act in ways that people might not expect, and that compassion and understanding – rather than stares and snide comments – are what is needed. In reality, adults need to leave the job of parenting to, well, the parents of those kids, because they are the only ones who are privy to all details of the story.
But…there is a flip side to this. You see, not every behavior can be attributed to autism. Even though Jack is far too young and – developmentally – light years away from understanding this, I’ve always felt as though autism cannot be used as an excuse throughout his life. Sure, he has meltdowns that are beyond his control. His neurology contributes to that. He struggles to communicate with others. His neurology also contributes to that.
What he cannot do is use autism as an excuse for being a jerk. That I will not allow.
I say this, because I find that – from time to time – people confuse “neurology” and “personality”. Say an autistic person is very direct and says exactly what they mean all the time. It’s not uncommon. That’s just a neurological difference. That individual processes and responds to the world in a different way. We can respect that, take that into consideration, and be understanding.
Take another autistic person who comes off as combative, angry, and spiteful. Now, neurology can contribute to this, of course, but there’s another possibility; some autistic people, like the rest of us, are just assholes.
Now, before I get eviscerated by everyone for saying that, let me explain. All of us NT people out their have our own personalities. Some people are unfailingly kind. Others are very reserved. Others come across as very outgoing. Others still are just plain assholes. Our neurology is essentially the same – we’re all NT.
Autistic people also each have their own unique personalities. “Autistic” isn’t a personality, people. There are autistics who are unfailingly kind. There are some who are very reserved. There are some who are very outgoing. There are others who are just plain assholes.
This applies across the board with everyone – NT or disabled alike. One good example and one that I’m a bit familiar with is that of the “super-nice-and-caring” Down Syndrome individual. Jack goes to therapy with a lot of kids who have Down Syndrome, as many kids Jack’s age with Down Syndrome have a similar therapy schedule/load. In fact, I know more parents in real life who have children Jack’s age who have Down Syndrome than I know parents with kids Jack’s age who are on the spectrum, though I suspect it’s because most of those kids haven’t been diagnosed yet. One thing that I hear a lot of Down Syndrome parents complain about is that parents of autistic children tell them how lucky they are because kids with Down Syndrome are “so sweet, good-natured, and kind”.
Now I’ve never been one to make that remark, but when I’ve been a part of these discussions the overwhelming response from the parents with children with Down Syndrome is that their children – like all others – can be real pains in the ass from time to time. Why? Because they’re kids, and kids personalities run the gamut. So, you can have kids with Down Syndrome who are the sweetest, kindest children you’ll meet, but you can also have kids who are a bit difficult to deal with and who are always trying to rock the boat.
Can people with Down Syndrome be sweet? Sure. Can people with autism be jerks? Absolutely. Is it because of their neurological and developmental differences? I’d say it depends. Of course our neurology makes us – in part – who we are. Jack wouldn’t be the person he is if not for him being autistic. It has helped mold part of his personality. Is “autistic” all that Jack is? Is it the end all and be all? Is it his personality, his identity, and his neurology all rolled into one? Not at all.
I think this is where saying that particular personality traits accompany a diagnosis can be damaging. After all, assuming that autistic people are not empathetic misses all of the wonderful autistic people who show so much empathy that they not only care for others deeply, but they also internalize that pain. I’ve spoken with some adult autistics who are so sensitive to the emotions of others, so in-tune to how others are feeling – even if they can’t put their finger on the exact name of the emotion, that they acutely feel right along with the person they are observing. They internalize that emotion and it flows forward in a way that most NTs can’t understand, either. Sounds like empathy to me.
On the other hand, I’ve also heard of some adult autistics using autism as an excuse for bad behavior. When someone says something hurtful and then says “It’s not my fault – it’s my autism”, that also takes something away from autistic individuals. That says that being hurtful is something that goes hand-in-hand with autism, and that’s simply not true. Now, it could absolutely be the case that an autistic person says something hurtful without knowing they have done so because of their difficulty in reading a particular situation or filtering their thoughts. However, it is also possible – particularly in the case of people who are always “stirring the pot” and who seem to have more vitriol – that they are just jerks.
So, what can we do? How do we make sense of it all? Well, we don’t. There’s no way you can tell absolutely what is autism vs. personality. Here is what we can do:
Consider developmental age and adjust expectations accordingly. A 7-year old who is – developmentally – a 2-year old cannot be expected to think and act as a NT same-aged peer would. That child hitting or screaming “Mine!” when someone else plays with a desired toy may not be the behavior of a brat, but behavior that we’d expect from a 2-year old. Keeping the developmental age of a person in mind gives us a better perspective on their behavior.
Discuss before jumping to conclusions. Has someone said something that offends/hurts you? Well, assuming that even the most seasoned autism parents don’t always detect every person on the spectrum, you can always tell a person that what they said was offensive/hurtful to you and explain why. If that person seems like they don’t give a crap, you may just be dealing with a jerk. Most adult autistics that I know are absolutely not jerks one bit and if they were to say something that rubbed me the wrong way – or vice-versa – they would be open to a discussion and, in all likelihood, acknowledge where they might have misunderstood, as would I. Someone who doesn’t do that, claiming that their autism is the reason why they acted that way but not attempting to apologize or explain, might just be an asshole. A NT person who does the same thing might just be an asshole, too.
Remember that we are, ultimately, all subject to the same societal norms and “rules”. A person with a disability who commits a crime doesn’t just go unpunished. Rather, attempts are made to determine whether or not a particular behavior is a manifestation of a disability and that is considered when determining consequences. While making a social faux-pas isn’t a “crime”, it is important to remember that all behavior has consequences, whether we intend to engage in that behavior or not. If your child has a meltdown every night in their room and breaks his/her TV, and then you replace it and the same thing happens again, you might not put a TV back in your child’s room. The meltdown isn’t something your child can control, but the resulting behavior caused something undesirable to happen. Breaking the TV – while not intentional – has consequences. The things we say and do have a consequence and all people – NT or autistic – need to understand and acknowledge that.
Help teach your child social rules and good behavior. Unfortunately, our kids function in a NT world. As much as we might want the world to change for them, it won’t. Nor can we isolate ourselves from the world. What we can do is help our children navigate their social worlds through teaching them social skills. A good example of this is the age-old Southern ritual that I was forced into in the 7th grade – Cotillion. We were taught to do all sorts of things that seem silly to most kids, like bowing/curtsying, using the correct fork at a meal, and ballroom dancing. Do any of these things serve a real purpose in the world? Hell no, but knowing how to do them helps you fit in within certain contexts. It helps you pass as “fancy”. The same with our kids. Social norms might not make any sense to them, but knowing how to navigate the social world will help them maintain a job and relationships with loved ones and peers. Teach your child that they can’t control the behavior of others, but they can control their own, with practice.
Don’t let your child’s disability be an excuse. This goes not only for social situations, but for any other skill, really. There are obviously going to be times when your child’s unexpected behavior needs to be understood compassionately by others, but there will be times when your child is just being a pain in the butt and it will have nothing to do with their diagnosis. Most parents are pretty good at picking out when it’s just “being-a-pain-in-the-butt” and when it has to do with autism. Don’t let autism be an excuse for the “pain-in-the-butt” behaviors.
Remember that no one’s personality is absolutely dictated by their diagnosis. There are NT jerks. There are autistic jerks. There are kind NTs. There are kind autistics. Personality – while influenced by a diagnosis – isn’t controlled by autism. There are good and bad people within every community.
Meet half-way. It doesn’t need to be all “conform” on the part of autistics, nor does it need to be all “accommodate” on the part of NTs. An ounce of understanding on both sides goes a long way.
We all share this world. We all have to manage a sort of give-and-take to make it work. We should be understanding and help each other learn and grow as individuals. Autistics sharing their point of view have a lot to teach us NT parents about raising children with autism. On the other hand, we can also share with autistics how we see the world. Neither way is right or wrong. Being NT doesn’t automatically mean I’m wrong or right. Being autistic doesn’t automatically make someone else wrong or right. What it means is that we have to share ideas respectfully and work together to make the world a better place for us all and for all autistic individuals, including our children. That takes understanding. It takes compassion. It also takes acknowledging that we are all unique.
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