Wednesday, December 11, 2013

The Relief of a Diagnosis

Earlier this week an article came out about Susan Boyle. You know, that woman who totally floored Simon Cowell in "Britain's Got Talent," because nobody suspected that a middle-aged, average looking, frumpily dressed woman could actually sing. Yeah, that one.

Well, it turns out that she was recently diagnosed with Asperger's Syndrome. And, to her, that diagnosis was a relief.

The exact same thing happened to my 23-year-old daughter two months ago. Same diagnosis. Same sense of relief. So many questions answered. So many opportunities now for growth and development.

People tend to shy away from labels. They don't like being put in boxes. They think that it will handicap them in some way, and sometimes it does. We put off for years getting a couple of our kids evaluated for ADHD, but even with them, the diagnosis came as a relief.

Labels aren't always bad. They can be very good. A friend says that a label is like a handle, it gives you something to hold onto. It is true. The diagnosis can explain and define and give you a framework within which to figure out life.

My oldest child has always been an introvert and a bit on the "bookish" side of things. She is also tremendously private—a trait she most definitely did not receive from me. For years I have said that you enter her world at her invitation only.

Throughout high school she had some struggles, but since she had the same small group of friends and her academic world was pretty much spelled out for her, she did OK. The older she got, though, the harder it seemed to navigate the world of social interactions. They baffled her and several times she actually verbalized the wish that there was a class for social skills. Of course, I had no idea how to teach something like that because, for me, they are just what you DO.

By her senior year in high school, patterns began to emerge. Chunks of time spent with friends wore her out. If she spent the night out, she would come home and sleep for hours on end, shutting out the world. Usually she would also get sick. Then she would get behind, and the more she got behind the more overwhelmed she got, and the more she would shut the world out and escape into an online world of fantasy literature.

I was baffled by this. I love people and learning all about them. I love being out and about. I can't stand staying in one room all day long. I wondered how she would fare in college.

Her first semester in college went fine but soon the novelty wore off. College was a place of interacting with lots of people and lots of abstract thinking and lots of reading the professors' minds about what was expected. None of those tools were in her tool box. She began to shut the world out.

By her sophomore year in college things spun out of control. By the time she called me in early December of that year she had missed weeks of classes and had spent the time on her bed crying. I brought her home.

Treating the depression was Step One and I hoped that getting that taken care of would remedy her struggles. And it did, sort of.

But over the next four years the pattern remained. She seemed happy enough to hole up in a world of her own and let life pass her by. Every so often she would venture out, find a job, and sometimes even a boyfriend, but eventually she would find the interactions and the expectations totally overwhelming and have to shut down again.

Matt and I were absolutely baffled. Our daughter is very, very smart. She was the salutatorian of her class at her academically rigorous high school yet she could not pass an English class at the local community college because it required so much abstract thinking.

She is quite beautiful (a friend compares her to Kate Winslet) yet she would usually only dress in jeans and superhero t-shirts. No makeup. Not a care in the world about her hair or clothes or appearance in general. Comfort and only comfort ruled.

She is exceedingly kind, yet there were times she appeared so self-absorbed and obsessed with a fantasy world that she didn't seem to care about the people around her.

And the more I tried to "fix" things (which I felt the need to do because, obviously, if I had done my job as a mother she would be cruising through life like everybody else her age . . . or so it seemed), the worse things got. In an attempt to find out if there was some trauma in her childhood that was behind her challenges, I asked her what the worst memory of her growing up years was. Her reply? When her youngest sister and brother would make so much noise. Yes, I was baffled.

I had wondered for years about Asperger's, but when I would read about it, things just didn't completely match up. Then this past fall I noticed the cycle starting again. Migraines and feeling bad and missing work and holing up alone for days on end. Concerned that she would endanger her very good job (that she actually liked) and lose all the ground she had recently gained, I sent her to a psychiatrist.

In the meantime, my sister, who has worked in her local school system for 30-plus years, sent me information on Asperger's in females (which presents itself differently than in males). When I saw this chart, I knew. Oh, how I KNEW! Within a week my daughter and I were going over the chart together and she determined that she had all but three of the 45 characteristics listed. At her next visit with the psychiatrist, he confirmed our suspicions.

To say this is a relief is such an understatement. It is a relief for her because instead of feeling weird and alone, she knows that there are other people out there who struggle with exactly the same issues. It is relief for her because with this diagnosis comes hope. There are books, websites, therapists, community groups all dedicated to helping Aspies navigate the very confusing world they are in.

The diagnosis is a relief to more than just my daughter. It is relief to me. Forever the "guilt magnet" (as my husband affectionately calls me), I was convinced that her struggles were all my fault and she was suffering in life because of my failure. Come to find out, her challenges actually run in my husband's extended family. Best of all, I understand my daughter a little more. Not completely, but better.

It seems that there are always articles out there complaining about such labels and claiming that they are just a way for people to avoid responsibility for their own actions. On the contrary! The diagnosis—the label, if you will—provides a framework for taking responsibility. As a wise person once said to me, "Maturity is learning to manage your biology."

For my daughter, for me, for my family, this diagnosis has been a godsend. After all, God is the one who wired her. And now we know how to love her better.


  1. I love the last paragraph especially, I love all your writing. I can identify with lots of what you have described as I have an infj personality type.

  2. This is such wonderful news, and I'm happy for all of you. This just shows exactly what ways she is unique, and perhaps it will help her chart a path for her future that avoids obvious pitfalls, and maximizes her wonderful strengths. And simply by not giving up, and finding this diagnosis for her, you have shown yourself (again) to be a very wonderful mother. Everyone who needs diagnosing in any area, needs someone who will never give up, like you.