More on Autism

After my final poem in April, a few people asked me to share a bit more about what it’s like to either be Autistic or to be the parent of someone with Autism.  My kids and I were all diagnosed with Asperger’s Syndrome (back when there was such a diagnosis).  This is the only form of Autism that is hereditary, by the way.

I guess the easiest way for me to explain our brains is like this:  When you have a head cold, it can be mild, moderate, or severe.  You’ll have coughing, a runny nose, a stuffy nose, sneezing, and a fever.  Or you might have no coughing, but lots of sneezing and a high fever.  Or you might have a completely stuffy nose, a low fever, and a lot of coughing.  But aside from the runny and stuffy nose being complete opposites, all the symptoms may be present at the same time or just a few, and in varying degrees.

Autism is kind of like that but on a MUCH grander scale.  For example, there are probably over a hundred symptoms that I could think of, and not all of them are present in everyone.  And there are many more levels of each symptom than just mild, moderate, or severe.  If, in each single symptom, you numbered 1 to 100, and said that between 45 to 55 are considered the “normal range” for people with “regular brains,” those of us with Autism may range anywhere between 1 and 100, and on several of them, we’ll likely still be in the “normal range.”

One of the “biggies” in the long list of symptoms is lack of empathy.  A very rare occurrence in Asperger’s Syndrome, however, is having an excessive amount of empathy.  Now, in my household, this is one of the (many) ways my children and I differ greatly.  You see, my kids are both incapable of empathy, and I have so much it can be debilitating.  Actually, I am what’s considered an “empath,” which, if you are interested, you can read about at http://themindunleashed.org/2013/10/30-traits-of-empath.html. But as for my kids, they don’t mean to hurt other people’s feelings; they just honestly don’t realize that other people even have feelings.  The hard part of this to digest is they do get hurt feelings themselves and quite frequently, actually.  But even the way they express their hurt feelings is very different.  Stefani will cry, scream, lash out, turn on and attack the offender, get even, and hold a grudge.  Jeremy will become introverted, get quiet, go someplace where he can be alone, and refuse to discuss the matter further, then he’ll get over it.

It’s not easy having so much empathy myself knowing I gave birth to two cold robots who could care less if I live or die (which is how they can seem at times).  The truth is, I know they both love me in their own way, but they just don’t realize how they come off.  For example, one time Stefani ran away from home and was gone for several weeks when Jeremy was a young teenager.  I was so worried, frustrated, angry, hurt, upset, and hopeless, that I just had a meltdown and started sobbing.  Jeremy, upon seeing me cry, started giggling.  Why?  Because my face looked funny, it had turned red, water was leaking out of my eyes, my nose was getting stuffy, I was making a weird noise, etc.  The act of crying looked funny to him.  It wasn’t because he was cold and insensitive to my feelings about his sister… he just didn’t realize I had any feelings at all and couldn’t grasp why I was doing that “funny thing” to my face.  He wasn’t being mean; his brain just didn’t know how to process the external display of my emotions.

I think the easiest way to explain how my kids are with empathy is this:  Think back to when you were a teenager and you wanted to do something that your parent or guardian didn’t approve of.  What happened?  It was probably something like, “No, you’re not leaving the house dressed like that!  I’m not going to have the whole town think that I raised a floozy!”  And that was answered with, “It’s not about YOU, old woman!  All my friends dress this way!  You’re so old you don’t even remember what it’s like to be young!  You want everyone to make fun of me!”  (Well, hopefully you weren’t that mean to your caregiver, but even if you didn’t say it, I bet you at least felt that way at one time or another.)

So in that scenario, the parent made the kid’s wardrobe all about themselves and what people would think of them if they allowed such clothing to be worn.  And the kid thought only about themselves thinking of how geeky they’d look if they allowed their parent to dictate what they wore.  Both actually had valid points, yet neither realized that the other had any weight to their argument at all, and both likely thought the other was being mean and/or selfish.  Both felt the other was being contradictory for the sole purpose of embarrassing them.  They each made it completely about themselves.  I know this isn’t the greatest example, but it’s about as close as I can think of, and unless you actually know someone with a complete absence of empathy, you may not understand.

If you can’t wrap your head about that, just think about cats.  They allow you the privilege to feed them and occasionally even to pet them.  But on their timetable. Otherwise, they’ll scratch your eyes out without giving you a second thought.  But they love you — on their own schedule, of course.

At any rate, I’ll try to come in once a month or so with more on the wide world of Autism if you like, and hopefully you may find some of it useful.  Enjoy the rest of your weekend!

~Rachel

autism ducks

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30 thoughts on “More on Autism

  1. Rachel, I am married to an Aspie. He’s had only an formal diagnosis, and doesn’t see the point at his age (61) of getting a formal DX. I certainly had no idea what I was getting into when we got married. We’ve sailed over some very rocky shoals in the course of almost 35 years of our marriage. I kept thinking I was doing something wrong. But no one was wrong. Not my husband and not me.

    We kind of grew up together, and I always knew he was different, but different never scared me. We have three beautiful grown up children, and two and a half grandchildren. It was touch and go for quite a few years, though. I did not understand why he did or did not do certain things and I went into depression and eventually an anxiety disorder. I was trying my best and it seemed like my best was inadequate. (Very difficult when you are a first-born! 🙂 )

    The year that we both were born – most people had never heard of autism let alone degrees of it along a continuum.His mother did not know what was going on with him, but she knew he was smart (he’s a cotton pickin’ genius with math and accounting) and she knew he needed help. She had to go over all of his school work every day up through third or fourth grade. She did such an outstanding job teaching him how to recognize social cues and teaching him manners by rote. She’s a saint, I think. 😀 Looking back to the stories that his family would tell about him it just all fits in.

    When the Asperger’s word came up, I did what I always do when I don’t understand or know something: I started to read and study everything I could. We started to talk, and it was a relief to both of us knowing that there was hope and that we could learn to communicate even if it required extra effort. Everything I have read indicates that the initiative will probably be in my court most of the time, but I feel like I have hope again. I know he loves me in whatever way he understands that word, and it is enough.

    Thank you for your courage in sharing your story. God bless you.

    • Learning the social cues is a huge accomplishment! It’s very difficult to force yourself to do something that’s against your nature, so if he’s mastered that, then he really does have it under control. Have you ever read the book “The Curious Incident of the Dog in the Nighttime” by Mark Haddon? It’s one of the best books that I know of that accurately convey what it’s like to be inside the Aspie brain, (and it’s entertaining and not like a textbook, so not boring). Thank you for reading and commenting. 😀 Best wishes! xoxo

      • It’s not on our library – I may try and find it in Gainesville Library. Or I may wait until I get the money to download it. I read some of the text on Amazon, and it was a very familiar cadence. Wow. Thank you again.

  2. again A DELIGHTFUL, EDUCATIONAL AND INSPIRATIONAL ARTICLE!! Rachel, YOU GIVE SO MUCH OF YOURSELF IN YOUR COMMUNICATION. Oops hit caps lock…sorry., Thank you for how you just put it out there and bring it right down to a level for all to understand. Personally I remember telling a doctor at work that I thought everyone has parts of a lot of what could been found under characteristics for clinical diagnosis of one or another psychological disorder. After all, it’s really a matter of the balance of presence of these things. As you so well used the example of a teenager and a parent in a communication scenario. I have long held that teenagers and toddlers both have a degree of bipolar and a degree of autism. Not said with a frown or over my glasses- just the facts as I have seen them. And as you so astutely pointed out the parent shares in the disorder of being in that self absorbed point of view. And there is enough anxiety to suck up a hundred story building of anxiety.lol
    You are a brilliant writer. Thank you for sharing these intimate precious sides of your world.

  3. Great post! We have a daughter who is “high-functioning” autistic, so we’re well-acquainted with the characteristics. Yet, everyone is different.

    • Exactly! I have met many teachers over the years who were never educated about autism and would actually say such things as, “He LOOKS normal,” or “He doesn’t have Aspergers…I have a niece who does and she does ABC differently.” So sad. Thank you and good luck to your daughter! God bless! 😀

      • Yes, we had a school diagnostician tell us that Stephanie didn’t have autism after a professional gave us the official diagnosis! But the school person observed her during her favorite activity, while they were rehearsing for the school Christmas music program! Stephanie loves music, so she behaved almost perfectly during that event! It took us several years after that to finally get the school district to agree and put her in different classes. By the grace of God, we finally managed to graduate. High school was horrible; one of the most stressful times of our lives.

        In response to the “Parenthood” comment, we believe that they do a pretty good job of portraying Autism/Asperger’s. We have been in tears many times, and we frequently just look at each other and nod when “Max” displays his Autistic symptoms. You can stream all but the current season on Netflix, by the way.

      • Awesome about the Parenthood thing… I had that high on my list to tackle this evening. Thank you for the info. 🙂

        I wholeheartedly agree about the school being the most stressful times in the whole family’s lives! Your poor daughter…her teachers sound as awful as my son’s teachers were. For some reason, my daughter actually did superbly at school, so no one ever had a reason to suspect anything was wrong there. But my son, bless his heart, from the very first day he started kindergarten, it seemed as if teachers were out to get him. I can’t tell you how many times I had to go as far as getting the Governor’s office involved because the teachers, principals, and even school board were basically worthless. I ended up pulling him out in 8th grade and home-schooling him which he hated because he missed his so-called “friends.”

  4. Thank you for providing us with a better understanding of something many of us know next to nothing about. Your explanation is so insightful. We often hear the words without truly comprehending them, or the challenges you experience when it comes to everyday days many of us take for granted. I look forward to your next post and to learning more about what makes you tick. Thank you, Rachel! 🙂

  5. You are a champion for spreading this type of awareness, Rachel. I watch the show “Parenthood” on NBC, and am interested in the way they portray the teen character Max with Asberger’s and the adult character played by Ray Romano who thinks he has Asberger’s after meeting Max. Do you watch the show? Is it realistic?

    And, by our happy blogging friendship, I can tell that you are very empathetic!

    • I have actually never heard of that show, but thank to you, I am now on a mission to look for it. I will get back to you with an answer as soon as I find it. 🙂

      I am empathetic to about anything but sports wagers, Mark…Then I can only say “Good Luck” or “Yay!” (but only when you tell me it’s appropriate. Otherwise I have NO IDEA what’s going on. LOL!) 😀

  6. Hi Rachel. I wrote a comment in respone to this post on the day you posted it, but it seems to have gone missing! Could it be a contender for your stranger than fiction series…the Curious Case of the Covert Comment lol!

    Anyway, just wanted you to know how much I loved this post. You are so open and honest, which cant be easy to do, and you say it so well, from the heart without a shred of self pity…I admire that immensely. Judging from all the other comments, I dont think I am alone in saying that I have learned much from you. Perhaps its down to people like you (and me too, for Carys), who have a voice and courage to tell the truth, so that others can learn and understand. But its a big responsibility.

    As for your son’s reaction to your crying, if Carys could speak, I am convinced she would say much the same thing lol! She doesnt mean to make fun of other peoples sorrows, but it just sounds so damn funny when people cry, she cant help but laugh!

    Finally, I am astounded to learn that empaths really exist…I thought they were purely the stuff of science-fiction! So there you have it, Rachel…you yourself are stranger than fiction!!!

    I hope you go on to write many more posts like this. And if this comment doesnt post, Im going to have a hissy-fit and swap my android for one of those nasty Iphone thingies!!!

    • LOL! Well, your post was successful, so you can at least rest easy and keep your phone. 🙂 As to empaths, I can guarantee they do exist. (As to me being stranger than fiction, well, that’s true, too! LOL!) I have a good 28 out of the 30 characteristics listed in the empath article and the 28 that I have are very strong. And I agree that you and I were honored when we were chosen to be placed with the responsibility of being the voice for others who can’t voice their feelings themselves. YAY Team Us! 😀 Carys just sounds like such a sweetheart, I wish I could meet her and give her a great big hug…So since I’m not there, you do it for me, okay? 🙂

      • I will…though with you being an empath Im sure shes feeling the love already! Wow…it must be exhausting….just coping with ones own emotions is hard enough!

        I love what Im learning from you!

        Btw she wasnt a sweetheart today…she had a fitting for new AFO’s and screamed hysterically the whole time that she totally exhausted herself and fell asleep in the car before we even left the hospital! My ears are still ringing now 10 hrs later!

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