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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jda907 jda907

Wow, Liz, were we separated at birth? I would really think so if I weren't a few years older than you. I am also a mom recently diagnosed with asperger's, and my son has PDD-NOS and also a lot of behavioral problems associated with it. I also truly believe that there is a genetic link to it as I also have a nephew with asperger's. I love all of the points you made about people with an ASD-all so true! I believe it is up to those of us with an ASD to make others more aware of the condition so we are treated better by society. It is so true that you don't really understand it unless you have it yourself, and so hard to explain! Thanks for your help.

anxie... anxiety25

lol, jda, I always find it pretty interesting when I run into other situations like ours, and wonder how many others are out there dealing with the same.

KatieP. KatieP.

I swear to god everytime I read something about aspergers I swear I have it. I hate/love social situations. I want friends but have no idea how to go about it. I say exactly what I think and I always have. I have really hard time making friends. I looked it up on webmd once and everything fit, even the fact that they often go into engineering (chemical engineer, hello), As a teenager I never really cared too much about fitting in even tho I wanted to and most of my friends were older (something else webmd said) granted I have not been diagnosed but I told my husband what I thought and his response was basically, uh duh of course you have it, why are you even asking me, LOL, even before I had heard about asperbergers I would joke about how I would have to teach myself social skills like I teach myself chemistry, like when I see people again I have to remember to ask them about things that I don't care about (like if the last time they told me their mother was in the hosipital I would have to ask them how she was doing the next time I saw them even tho I don't know their mother or (as cold as it sounds) care how she is doing (I mean I care but....))

KatieP. KatieP.

Once this awareness thing started every single article that has asbergers in it I say o wow- ME, like one person said they would tell their son to brush teeth, put on PJs then go to bed, and he would do the first thing then forget about the rest. That is exactly me, I carry a notebook with me at work and write down every single thing that is asked of me, when it is asked, because my boss would ask for a report on x and y and I would send him the report on x and completely forgot about y. My mom, (who I love and is not being mean but rather humerous) always jokes about about me being an idiot savant (she does not know my suspisions either) and whenever we touch on me being in social situations her response is that I am so smart that I do not know how to act socially (paraphrashing a converstaion I had with her yesterday) I actually like the idea of this simply because it makes sense and I have always wondered/been upset with myself for these issues now I know its not me per se

KatieP. KatieP.

And actually before I heard about asbergers I would sometimes wonder if I had autism (I had heard about that) but always thought no because (NO DISRESPECT) I was too high functioning/intelligent (please don't take it the wrong way!)

KatieP. KatieP.

O and the curiosity/routine EVERYTHING fits.

KHW KHW

Part 1
I'm very happy for you that you have the answers (diagnosis) you seek about yourself and your son.

One slight point - for most cases of ASD mainstream science is heading toward Genetic predisposition to environmental insults. The comment re: everyone would have autism if they were exposed to whatever is the point. The science of this field of research is called Epigenetics:
http://en.wikipedia.org/wiki/Epigenetics

There are many different scientific types of "autism" - not meaning what your doctor diagnosises - that is just behavioral diagnosis - meaning the underlying disease state that is causing the expression of "autism".

KHW KHW

Part 2
For further explanation, please see UC Davis MIND Institute Autism Phenome Project (APP):
http://www.ucdmc.ucdavis.edu/mindinstitute/research/app/index.html

Or Autism Speaks - Advancing Clinical Practice Through Recognition of Autism Subtypes:
http://www.autismspeaks.org/science/science_news/comorbid_genetics_article_review.php

See the Drexel study (studying environment/impact/epigenetics):
http://www.autismspeaks.org/press/earli_study_announcement.php

See the Swedish study (epigenetics/etc.):
http://www.scientificamerican.com/article.cfm?id=link-between-autism-and-vinyl

KHW KHW

Part 3
See very cool epigenetics video (not ASD) re: how identical twins are different over time based on environment, The Epigenetics of Identical Twins:
http://www.youtube.com/watch?v=AV8FM_d1Leo

This is one of the winners from the National Science Foundation 2009 International Science and Engineering Visualization Challenge:
http://www.nsf.gov/news/special_reports/scivis/winners_2009.jsp

Check out the Sibling rates for Autism in families, Heritability of Autism - not so strait forward even in identical twins:
http://en.wikipedia.org/wiki/Heritability_of_autism

KHW KHW

Part 4
This is one of my favorite articles re: twins - Genes implicated in twins' autism, Researchers suspect multiple genetic roles, environmental triggers, tons on rates and one family's story where one twin is very high functioning the other is very low functioning:
http://articles.baltimoresun.com/2010-01-04/health/bal-md.hs.autism04jan04_1_autism-cases-fraternal-twins-researchers

Do I feel that genes and environment had a real impact on my son. Yes. My environment too (my childhood, my environmental exposures), my mother's, my grandmother's. Something happened very serious in my first trimester - this is huge. I've seen very mainstream doctors jaws drop and "oh my god, you're right... but you'll never prove it."

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