In Their Own Words: Ignorance is Not Bliss
As the parent of two children who have autism, I have been their shield and their sword since birth. I protect them from outside influences, which affect their routines and trigger their sensory issues; I fight for services at school; I pay for necessary and expensive medications and therapy and I have totally changed my own lifestyle to accommodate their needs.
The problem is that I don’t know how far to go with all of this.
At some point, my teenage daughter is going to have to face the world without my sword and shield. She’s 14. That’s a far cry from being an adult, but I keep asking myself what I can do now to help her transition into an independent person by the time she goes to college.
How far do I push her and when do I let her fail so that she can learn how to pick up her own pieces?
My daughter has difficulty reading social clues and she takes everything at face value. There is only black and white in her world, no shades of gray.
In other words, she’s “clueless,” which has its advantages for now.
Jessie doesn’t pick up on spoken innuendos and teen body language. If someone said “He’s hot,” she might think the guy had a fever. (Really, I’m serious …)
If I mention boys to Jessie, she adamantly insists that she’s never dating, never getting married and never having kids. She simply cannot envision a future in which she will change her mind on these issues.
As a teen who has autism, Jessie’s physical development is on par with her age, but light years ahead of her social development. Believe me when I say that guys around her see it, even if she doesn’t.
In the back of my mind I keep thinking about the movie Harper Valley PTA, in which the somewhat mousy/shy teenager gets her braces off, gets a new hairstyle and suddenly everyone sees her as “grown up.” Jessie’s almost there. Her early teen acne is clearing up, she just got her braces off and she’s tall and very athletic for her age. Yet, she’s totally clueless and totally dependent on us to make the right choices for her.
I literally have to force Jessie to participate in activities outside our home. She loves soccer, but hates activities with her teammates outside of regular practice and games. The same applies to school and church. Daily and weekly routines such as Sunday school and Wednesday night youth activities are fine, but field trips and special youth activities are outside Jessie’s routine.
This weekend I practically had to force Jessie to pack her bags for the youth lock-in. I will say that I was very proud of her when she explained why she did not want to go: “I feel alone there,” she said.
I could have cried, because I know exactly how she feels, and her comments made me question whether I was making the right choice for her. I did not back down, however, despite the fact that my husband kept telling me not to force Jessie to do something she does not want to do.
This was too important and it was a great opportunity for Jessie to try to socialize in a very protective atmosphere. We have a wonderful church and great youth group and I know Jessie is in good hands when she’s there.
And yes, in the end, Jessie had a really good time. She made a couple of friends and for the third year in a row, she stayed all night, after swearing that she would not.
Still, church activities are not enough. At some point, Jessie is going to have to learn to deal with society outside of the protections of home and church. She should be dealing with these issues at school, but we moved her to a small private school this fall, which was the best available option for her learning disabilities.
Our goal with school is to make sure that Jessie catches up with her peers so that she can go to college someday, even if she needs more time to get there. The drawback is that Jessie’s school is a small protected atmosphere where learning is key; everyone wears the same uniform and there is absolutely no exposure to the bad aspects of today’s society.
Ignorance is not bliss; it’s dangerous, and I am so afraid that Jessie will be unprepared for life in college and beyond.
So where do I go from here? How far do I push my autistic teen? How much do I continue to limit her exposure to outside influences? In other words, how do I prepare Jessie for life in a non-autistic world?
I wish I had answers to these questions, but I don’t, because when it comes to parenting a teen who has autism, I have only just begun. I enjoy posting about my past experiences with autism to help other parents while they are going through the same issues that I have already faced. This is one of the few times that I have written about the issues I am currently facing, to which I don’t yet have any answers.
And I feel like I’m back to walking on egg shells.
My life as a parent of children who have autism often results in taking one baby step forward and two big steps back. I’m afraid that, if I make the wrong decision with regard to my teenager, she will regress so far socially that I cannot bring her back.
But, I can’t be Jessie’s shield and sword forever. I have to find a way to push Jessie out into the “real” world a little at a time so that she can learn to stand and fall on her own.
This “In Their Own Words” essay is written by Nianya Cambridge.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
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