Unaware on the Journey of Autism

I wait for the LORD, my soul waits, and in his word I put my hope.” (Psalm 130:5)

Part of Natalie’s autism is a bit bizarre for the typical social-brained person to understand.

I got one of my first indications about Natalie’s atypical behavior when she was about two years old and we brought her new baby brother home from the hospital.  She didn’t run to me like she missed me after I was gone for two days.  She didn’t even notice that new baby Philip was in the house, not going near him or looking at him.

At the time, I was too engrossed in caring for the new baby to notice, but later on, this characteristic of her autism was quite apparent. Our sons can go away on a two-day or even a week’s youth retreat and Natalie won’t even notice that they are gone.  She doesn’t seem to know when the family is coming or going.

We went out to Washington State on a family vacation two years ago while Natalie stayed home with her grandmother.  She never once asked where we went or why we were gone for ten days.

Last week, with Dan away on a business trip, Natalie felt more freedom to follow me all over the house.  She had a hard time separating from me, letting me do my work, or letting me go to bed.  She wanted to hang on me and monopolize my time. 

One evening before going to bed, as I went into the basement to feed the cats, Natalie followed me, which typically she doesn’t do.  All of a sudden she asked, “What is that?”  She was pointing out the bedroom that Philip had built in the basement one and a half years ago.  I told Natalie that this was Philip’s bedroom.  Natalie didn’t have a clue that this room existed and got real angry that I didn’t tell her.  How did I know that she wasn’t aware that this room was in our house?  I use the word bizarre, for that’s what it seemed like to me.  How can a person live in a house and not go into the basement for over a year?  How can she not know what’s going on in the house?  Her usual trail is from the front door, to her chair in the living room, to the bathroom, and to her bedroom.  She rarely goes into any other room or spends any time outdoors.  She doesn’t go into the kitchen to get any food, whether she is hungry or not. She is so unaware of her surroundings and of what is going on.

At this point, we cannot see her living on her own and being able to thrive.  I am slowly trying to integrate life skills into her days, but she resists them.  If I mention that she needs to learn them because one day she will be living in her own home, she just gets angry that I would dare suggest that she will leave me one day.  A similar emotion is that she gets upset when she thinks that I would die and leave her.

Regardless of her feelings, it is my responsibility to prepare her for adult life without mom around.If you are reading this and you have a teen or adult with autism or Asperger’s, you probably can relate to this anti-social behavior.  If you are reading this and have a typical teen or adult, you probably cannot fathom having a adult child that lives in their own made-up fantasy world and is unaware of what is going on around them.  You probably can’t imagine having to deal with an adult child who can’t function without a caretaker.

It’s a reality in my life and at most times a burden, but every once in a while, I am able to grasp the important role that God has given me.  I am able to look beyond the hardship of my care taking responsibilities and look at what a privilege it is to be her mom and catch part of God’s vision for her life.  This gives me the will and the hope to carry on, even though at times, I want to give up.

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0 thoughts on “Unaware on the Journey of Autism

  • May 17, 2009 at 2:15 pm
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    i noticed a similar thing with my son brenden, when we brought his little brother cole home. Everyone kept asking, so hows he with the baby? and i would just say…. well he doesnt seem like he even knows hes there. He stayed with my in laws while i was in the hospital, and they said he didnt ask for us even once. when they brought him to the hospital he didnt even seem to care that he hadnt seen his mama, thats one thing that really bothers me about him being autistic, most children will cry after their parents or wnat to be loved on, not brenden. 🙁 it hurts….

    now that cole is older brenden is starting to notcie him some. not to play with him mind you but if he sees cole going after a toy he will grab it. brendens still not playing with other kids, and is extremly violent. 🙁

  • May 17, 2009 at 12:30 pm
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    I wasn’t ‘in deep’ like Natalie, but I can sure relate.  I’m higher functioning, and it has taken me decades to learn to accept change and spontenaiety in the people around me.  I love my rut, my peace, my solitude, and my nerves are severely jangled when anything ‘surprises’ me.  I’m nearly 50 and just now beginning to understand how hard this has been on my mother, my husband, and my children.  I’m a very quirky person, and they seem to love me for it, and I’m so grateful for that.  Please don’t misunderstand Natalie’s ‘anger’ at change, don’t take it personally.  I’ve lost friend after friend over the silliest things, because my social ettiquette is lacking, my ability to smile through stuff is something I’ve had to learn to pretend, and my confusion over my own feelings can take days to work through in my head.  I don’t have the awareness that most people have to understand that I make things difficult for others, or walk all over their emotions and feelings and hopes and dreams, but when I am able to realize, it breaks my heart, and I go cry alone.  That doesn’t make me able to change myself or know better next time.  I try really hard.  There up upsides to being in my head.  I’m never bored.  My psychologist believes autism has cushioned me from the clinical depression that runs through my mother’s side of the family.  I work through stuff methodically and usually don’t notice when others don’t like me, so I have never really experienced low self esteem.  In many ways, I would never trade places with anyone else because my head is a neat place to be.  But I wouldn’t let anyone hug me for many years (my children taught me to hug), and I didn’t realize I’m ‘mean’ in my ignorance of others’ feelings.  I appreciate everyone so much who doesn’t take me personally.  I hope this helps with Natalie.  As she grows older, she may be able to sort some of that stuff out and connect a few dots, like me.

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