What are High and Low Functioning Autism? (Parenting Kiddos with Asperger’s and PDD-NOS)

Okay, sorry. That title may be a bit misleading. I don’t know what it’s like for other people who are parenting kids on the spectrum, only what autism looks like here with my two.

Let me start over, I have five kids.

My first, Maggie, has some anxiety and overthinks in a major way but so do I and so does my mom. I have sometimes wondered if my daughter would qualify for a diagnosis of some sort but I don’t think it would help her; in fact, I think it would add to her difficulty.

My second, Joshua, seemed from an early age, either autistic or gifted (or both, for all I knew) but my husband wasn’t interested in pursuing a diagnosis and honestly, neither was I. He wasn’t having any behavioral issues nor was he in school because we were a homeschooling family, and I was able to tailor his education to him at home. He grew up fine. As a teenager, however, certain things began showing up due to new responsibilities and experiences. We went to a psychologist for him when he was sixteen, just before the pandemic started. His Autism Spectrum Disorder diagnosis was emailed to us in the middle of quarantine. lol More about said diagnosis in a minute.

My third kid, Samuel, is just about as basic and normal as they come (he seems odd in comparison to the rest of us, lol). He is severely dyslexic, however, which makes for an interesting homeschooling experience. 😉

My fourth child, Elizabeth, seemed calm and typical until she hit seventeen months of age. Over the next several months, it became painfully obvious that there was something very different, very challenging going on with her. Her ASD diagnosis was given when she was just two and a half. Her psychologist said that if she’d been given a diagnosis a decade earlier, it would have been PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified. That used to be assigned to children like her who aren’t showing quite as many classic autism signs or behaviors as those with “true autism” (debatable terminology, I know). But oh my, her behavior was so challenging. She is now four and has advanced in more ways than I ever thought possible! Still very much the same person, but she has adapted and grown into living with us.

The baby of the family, Isabella, is a lot like her brother in spot number three, so we’re not really seeing anything concerning which is a blessing. I actually became pregnant with her several months before Elizabeth began changing, and if I had known what was coming with her, I wouldn’t have had any more children. But OHHH, I am so glad I didn’t know!! She is wonderfully feisty and so fun and smart. AND I just know that she is going to be the main person to eventually help her big sister.

Ok, so! That was the intro to help you know who’s who but now let’s get to the high and low functioning part.

Joshua, as I said, wasn’t diagnosed until he was a teenager. This is because he was able to go along through childhood with relative ease. Just because I noticed differences with him doesn’t mean HE knew anything was amiss. After the diagnosis, his psychologist recommended I read books that focus on Asperger’s because even though that word is no longer technically used, it’s what he has. He was and is very upbeat, positive, go with the flow, and makes friends everywhere he goes. That being said, the autism part comes in to play once you look closely at relationships, closely at how he processes information, closely at how he speaks, closely at his interests. He is an amazing guy and I wouldn’t change him if I could, so having a diagnosis is odd, but I pursued it when I did because he is about to be an adult and he will soon have responsibilities that he may need help handling. He was fully on board with doing the evaluation and getting the diagnosis. He knew what and why we were pursuing it.

him with his psychologist, in March 2020

He began having anxiety out of nowhere at the age of fifteen, once driving was being learned. He wasn’t having anxiety WHILE driving or even ABOUT driving, but anxiety would come on after playing Minecraft by himself, or at strange times for no reason. I think it was in reference to the new responsibility but I can’t be sure. Maybe hormones had something to do with it. And then, when he got his first job, he had major anxiety about a few things that ultimately led to him quitting after only five weeks of working. He is at a new job now and has handled everything well; his aunt (my sister) is the general manager and I think it has helped him to know he isn’t “alone” with the responsibility of everything. I’m pretty sure vulnerability played a role in his difficulty at the first job.

He is in eleventh grade. He has a hard time figuring out how to prioritize his school work and setting aside enough time to get everything done. A few weeks ago, he was accepting full time hours at work but it was nearly doing him in; between being gone so much, having academics, and wanting to play games online with his friends, he was worn out. I had to step in and have him reduce the hours at work to 25 a week (he couldn’t do it himself because it would have felt like he was admitting that it was too much for him but he appreciated me doing it). He likes his schedule much more now, although he does still have difficulty making school work a priority. I leave him to it, though. I encourage different possible techniques like separating work into folders to be done each day, or focusing on certain subjects at a time, but ultimately he is trying to find what works for him. As far as the work goes, it is pretty modified. He is not able to do most subjects the way they’d be done in the classroom, or even how I assigned them to his sister when she was a junior in high school, but he is learning and to me that is all that matters.

His little sister, Elizabeth was given, as I said, a diagnosis of Autism Spectrum Disorder as well. Hers included “with accompanying speech delay” and Global Developmental Delay. At the time, she was labeled a level 2 for social communication, and a level 3 for restrictive, repetitive behavior. A level three means that they need the most assistance there is to need. She needed HELP, let’s put it that way. She was not doing well and neither were we.

But she slowly began changing for the better when I found things that made her feel less out of control. I found clothes that made her comfortable (essentially, the same pants and shirt every day) and she began using a tablet. These two things helped a lot. We stopped having meltdowns about clothes. She got to play games and watch videos of her choosing. She was happier overall. But she was still very, very restrictive. She couldn’t accept going a different route on a drive we would take, or an aisle at the grocery store. I could take her very few places because of the screaming.

I worked with her on speech, buying a speech therapist’s curriculum and learning as much as I could about floortime therapy. Between the tablet and my efforts, she began talking. Communication changed things so much for us! I taught her how to identify her emotions, how to problem-solve, and how to play. She was improving. She stopped spending so much time inside her own head. She was getting happier.

My husband found that holding her worked to calm down a tantrum or meltdown, whereas time-out or waiting it out did NOT. Sitting on the couch, with her in one of our laps, embracing her tightly (like a bear hug, not uncomfortably) and letting her regulate her emotions by getting some of the strong ones out made her a new woman, lol. This initially looked like her screaming and crying and fighting to get up before she’d finally settle down. He would ask her if she wanted to get down and he’d remind her that she had to be ok if he let her. She would agree and then she’d go wild on the floor once he let her up. He would hold her again and she would settle back down. Afterward, she always seemed happy and centered; it was bizarre and awesome. It reminded me of the squeezing device that Temple Grandin made for herself. Eventually, I started holding Elizabeth when it was needed as well. At first, it was several times a day, and then just every few days, and now it’s once in a blue moon. We still do have to say things to her at times like, “Do I need to hold you?” or, “If you continue screaming, I’m going to hold you.” And she almost always chills out.

on her fourth birthday, in June 2020

In the last six months, things have dramatically changed. She has gotten less restrictive and we’ve been able to do some things that we never could before. She can get in and out of our van at home and stay in the yard without running (there’s no fence), she can go to cemeteries and walk around with us, she listens when we tell her she can or can’t do something, and much more.

he wants to get puzzle pieces tattooed on his arm to represent him and his little sister

It’s great to see such improvements and it’s giving me hope for our future. It seems that she is growing out of many of the autistic behaviors she had as a young child. She is still on the spectrum and she always will be, but if she can be happy and enjoy life, we will all thrive. Same with Joshua, if we find what works for him, he will have an amazingly full life. Isn’t that true for all of us? 🙂

Do you have any questions about Asperger’s, PDD-NOS, ASD or the diagnosis process? Let me know and I’ll be happy to answer them the best that I can.

4 thoughts on “What are High and Low Functioning Autism? (Parenting Kiddos with Asperger’s and PDD-NOS)

  1. I have Aspergers myself and still struggle with some things. When describing it to people who don’t know, I try to find common ground, so I’ll reference the show “The Bug Bang Theory.” My explanation is that I’m not as OCD as Sheldon and prettier than Amy. You can see recognition dawn on their faces as they put some of my words and actions into that frame of perspective. It has been a wonderful tool that has led to great conversations and opportunities to educate on the subject of ASD.

    Liked by 1 person

    1. I haven’t seen the show (I’ve heard of it, of course) but I’m glad that people are able to understand what you’re saying because of it! That’s great 😊

      Like

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