My Autism Story: Liz and Her Son Are Both on the Spectrum


Zachary, age 8

Liz is a 29-year-old single mom living in Missouri with her SO and two kids: Zachary, 8, and Liberty, 5.

Zachary is on the autism spectrum -- and so is Liz. "I think one of the biggest misconceptions about autism, is that it only affects children," she says. "It's so often taken from that perspective."

Here, Liz shares what it's like to be the mom of a child on the autism spectrum -- and to be on it herself.

How old was Zachary when you first suspected he might have autism? What were the initial signs?  

Well, when Zachary was very young, maybe 8 months old, he would bang his head a lot. Since he was born prematurely, and was super small and had loads of health issues when born, we thought maybe his neck was just weak, because it wasn't a constant banging. He would hold his head up and look around, then drop his head and hit it 2 or 3 times, then look around again. It wasn't until Zack started kindergarten and was getting into trouble daily that I looked at it seriously ... as a behavioral problem of some sort.  

It wasn't until after MY diagnosis, that I looked at him and thought Holy cow-he's just like me!  I pursued a diagnosis for him as well, and it turned out to be correct.  

He did a lot of quirky things, and had some inappropriate social behaviors: He would spit on people who he considered to be friends. He also hugged and kissed people at random and told them he loved them. So we had to figure it out quick once he got into school.


When you found out his diagnosis, how did you react? Did that reaction change over time?   

I thought it was awesome ... but that's because I was diagnosed too. I had an answer for sure, and a more solid common bond with him. I could think about what I would do in a situation, and it was easier to correct what he was doing. I also understood why he was doing what he was doing. It was just a huge relief.

When I got my diagnosis, I felt the same way. I NEED facts about things, and had been having a major problem with having the wrong diagnosis. It was obvious that I didn't have Borderline Personality Disorder, which is what they said at the time. When I was diagnosed, I was thrilled, because it just "fit" so much better, and I had something I could actually work with. I knew what was wrong and became a lot more self-aware.


What is Zack's exact diagnosis? What's yours?

My son's diagnosis is Asperger's. I was diagnosed with Asperger's, as well, but debated it, because I had a speech delay so they switched it to high-functioning autism. My son had a speech delay too, but they didn't change his diagnosis.

Neither of us really spoke until we were about 4 or 5. We didn't babble or any of that, we started off in small sentences. Neither of us walked until we were about 4 years old.


How does it affect your daily life? 

We have a lot of problems socially. The world is a very confusing place, filled with confusing people! While others would understand that the proper response to "How has your day been?" from a stranger, is "Fine," we actually go into a full-fledged description of our day.  Then, when cut off, or afterward, we sit around and analyze why someone who doesn't know us would even ask that to begin with, or care about our day.

We spend a lot of time questioning things -- curiosity never ceases. We love to learn. We like to be alone, not because we don't like other people, but because we don't really know how to interact with others. We love routine and have difficulties with change. We often see things in a completely different perspective from other people, and that can cause a lot of communication problems at times, and help at others.

We are still people -- we go through the same things other people go through, we feel emotion just like others, we have empathy just like others. We just deal with it differently.


What are 3 things you wish someone had told you about autism that you had to learn on your own?

The ONLY thing I wish was different, is that it wasn't always portrayed as some terrible thing that must be cured and gotten rid of. I wish it wasn't always focused on the low-functioning people. I wish it wasn't always portrayed as a childhood disorder.

It's frustrating, because a lot of people go undiagnosed for these reasons. I've heard "It can't effect adults." I've heard "Girls cannot have it." I've been laughed at for even suggesting I have it. I've had problems with people looking for other reasons for my son's behavior, because "he's too high functioning."

High functioning seems to be a joke to a lot of people, and that's frustrating. People like to think that we're this way by choice, that we're using it as an excuse for whatever reason. People like to call it a "trendy" diagnosis -- why in the world would anyone seek out a diagnosis of something that leaves you in the dark a lot of the time when it comes to every day social mannerisms? It's certainly not fun; it's definitely not a "cool" thing. It just gives people even more reason to avoid you or exclude you from things.

What has been your greatest resource for information and support?

Myself and my son. I have learned a lot about myself, just reading about the diagnosis. I've picked myself apart a million times, just for fun, to figure out why I do things the way that I do. I have support from others, but the simple fact is that just as we are a puzzle to you guys, you are just as much of one to us... and that will likely never change.  

Awareness can be raised -- everyone can understand what it is and be supportive in that aspect, but nobody can truly understand it unless they have it.


What's been the most challenging part of dealing with autism?

For us, nothing.  A lot of behaviors he has had, were normal kid stuff. His responses to things may have been different from other kids, but I see plenty of normal kids doing stuff I'd never let him get away with!

We develop the same as other kids. We get into our moods and act up just like other kids. We go through the times of wanting independence, going through puberty, just like everyone else -- it's not much different.

It would be a lot more challenging if I was neurologically typical (without autism).  I know that, because I wouldn't be able to relate to my son as well as I do.

What makes Zack special?

My son knows everything about Star Wars, and can build just about anything at all with Legos. He is also perfectly fine with his diagnosis, and if someone calls him "weird" or anything like that, he'll fill them in. He says "I'm not 'weird' the way you think I am, my brain just works differently."


What do you think causes autism?  

I definitely think there is a genetic predisposition, which is triggered by environmental factors.  It just seems like there HAS TO BE, or else everyone that got vaccinations would have autism or everyone exposed to mercury would have autism. There has to be something already in place that is triggered when very very young.

In my family, my mother has it (suspected), my grandmother was exceptionally quirky, my uncle was very quirky, and I have a cousin whose daughter was also diagnosed with autism.

 

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