Growing Up with Undiagnosed Asperger’s Syndrome

The Spectrum Bloggers Network is a network of bloggers with learning disabilities, autism spectrum disorders, etc. The founder uses the abbreviation SpLD, which stands for specific learning difficulty, though I would use neurodevelopmental disisability. I’ve been a member of this blog network for about a month, and this is my first time participating in topic Tuesday, which was posted a bit late on Wednesday. The topic is “children”. What this means is a bit vague, andd it can be interpreted in several ways.


  • What does it mean to be a child with a neurodevelopmental disability?

  • What advice would you give to parents of children with a neurodevelopmental disability?

  • Having or wanting children as a person with a neurodevelopmental disability.


I could write on all of these topics, but am going to focus on the first.

I grew up in the 1990s. This means that, while autism, including Asperger’s, was known to the psychiatric community, the general public wasn’t nearly as aware of it as it is now. My parents knew some about autism, as they later told my diagnostician that they’d suspected it in me from an early age on. Then again, the idea that autism affected those with an intellectual disability only, was still pretty prevalent especially when I was a young child in the late 1980s and early 1990s. Asperger’s wasn’t added to the DSM as a specific condition till 1994, after all.

My parents recognized my intelligence very early on too, and they wanted to challenge me as much as possible. I cherish early memories of learning difficult math concepts like squareroots and calendar calculation. Unlike what is thought about intellectually disabled calendar calculation savants, I understood the underlying concetps. Nonetheless, calendar calculation was definitely a perseveration of mine.

I was largely unaware of my social and behavioral difficulties. I did realize I spent many hours in my room as a punishment, but didn’t know why. I also knew that I had few friends. That is, when I still went to the school for the partially sighted for first, second and third grade, I had some friends, mostly older girls. They mostly admired my advanced academic abilities and other than that liked to baby me. In regular Kindergarten, I had one friend. Other children didn’t really bully me yet, but they obviously didn’t accept me.

My parents claim that the real problems didn’t start until I was around nine. When I moved to a new school for the blind in 1995 and moved to a new city the next year, I started noticing that I had few to no friends. Looking back, I realize that I approached potential friends in a hugely childish way. One of my classmates used to ask her frieend for candy, saying: “Got something to chew on?” in a certain tone of voice. I don’t think I realized these girls were friends for other reasons than candy, and I often imitated the one girl asking the other for candy myself. In fourth grade, I had only one friend, a third-grader who remained my friend till I left elementary school, but I wasn’t really excluded or bullied. In fifth and sixth grade, I was. In the neighborhood, my only “friends” were my sister’s friends’ big sisters.

I don’t know at what age my temper outbursts became abnormal. Like, I know that, at five, I had a temper outburst over my father saying only kids under six could access a treehouse, worrying what would happen to me accessing the treehouse next year. This worry seems a bit silly to me for a five-year-old, but having a temper outburst is normal at that age, right? When I was still having these temper outbursts at ten, this became a significant problem. The fact that I still have them now that I’m nearly 28, well, you get the idea.

I was nine when my paretns were pressured by the school into sending me to play therapy. I don’t remember that play therapy was all that useful. I threw out purple miniature dolls because people aren’t purple, tried to get the water tray to overflow just to see if I could, and fought using toy swords with the therapist. After four sessions, summer vacation arrived and my parents took me out. I hated having to miss out on biology class anyway.

I didn’t have an extreme need for predictability. I was somewhat resistant to change, particcularly if plans that I’d been made aware of, were changed. This however looks like a bit of a “my way or the highway” attitude, and maybe it was. I do admit that I was particularly self-centered. I still am somewhat, having to really consciously think about taking another person’s perspective into account. This, rather than rigid routines, seems to be more why I am and was resistant to change. Please note that self-centeredness is in fact common in autistics, and it is not the same as selfishness.

I was eight when Asperger’s was added to the DSM. Then again, none of my school psychologists suggested I had it. My parents did take me to many different psychologists for second and third opinions, but this was mostly to validate that I was indeed intelligent, which the school for the blind often questioned or outright denied. The focus as far as social/emotional issues were concerned, lay on my temper outbursts. It is in this sense kind of interesting that these same outbursts weren’t looked upon as anything other than low tolerance for distress in the 1990s, but were seen as the reason for an autism assessment by 2007.

11 thoughts on “Growing Up with Undiagnosed Asperger’s Syndrome

  1. My dad was born in 1958 and wasn’t diagnosed with Aspergers until 5 years ago- even though there have been signs every step of the way. But like you said, it wasn’t even added to the DSM until recently. Now that he’s diagnosed he goes to a counselor and he’s trying to relearn how to socially and even relearn how to act with my mom and me. It’s interesting to me but I can see it’s hard for him.

    Like

    1. I’m glad your Dad got a diagnosis and is getting counseling. I do not go to autism-specific therapy or counseling, but wish I did. It’s especially hard to learn about yourself after a diagnosis. It’s tough enough having lived with this for 20 years before the diagnosis, let alone 50 like your father.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.