Sometimes I think about news stories on tv, or features that I have read about online or in the newspaper, years later. I wonder how someone's life has progressed after an accident, or liver transplant. I wonder, How are they today?. Through the editor of RainbowKids, I've recently learned that a few interested people wonder the same thing about our family. Having not used my real name in the original story written in 2004, Was Our Adoption a Mistake? it would be nearly impossible for anyone to track down our family (which is the intended purpose of anonymity). I trust that readers will indulge my choice to remain anonymous in this update.
It has been over 5 years since I ended the original piece on our family by answering that Yes, I do love this child: in a way . A statement that set off a firestorm of passionate responses. Some cheered for our family that we had come so far. Some were offended by the qualifier in my statement. The reactions, one way or another, did not sway the honesty of what I shared. At the time of that writing, 4-years post-adoption, we felt fortunate as a family to be in a place where the bond and trust were finally beginning to grow. Our daughter was then barely 13 years old.
Having weathered the long adjustment period, our family found itself on relatively calm waters. Anna remained mysteriously emotionally young for her age, while being advanced academically. After 4 years of homeschooling, extensive family travel, music lessons, outside sports and clubs, Anna's chorological age and emotional age were more widely at odds than ever. At age 13, she behaved in manner well below the age of our youngest child, age 10. Inexplicably, Anna still preferred to watch cartoons, princess movies, wear princess costumes, and play pokemon card games. In addition, she appeared truly incapable of grasping the simplest of social cues, such as reading the body language of others, or recognizing that someone's tone of voice (scorn, anger, mocking, teasing) changes the meaning of what is being said. Anna was the most trusting, honest, and gullible human that I had ever encountered. Traits wonderfully favored in a young child, were worrying in a young woman whose body marked her as a young adult, and whose mind remained in the land of Disney characters and bubble baths.
Conversely, Anna was capable of learning and executing advanced math concepts and read significantly above her grade level. Her development was confusing, but easily written off to spending her first 9 years in an orphanage. However perplexing the differences in her maturity and knowledge, it still seemed possible that Anna simply needed more time to catch up with her peers.
What follows is, I hope, both a warning and a guide to families who may recognize the unusual set of characteristics that I have touched upon above, and will further elaborate on in this writing. I do not share this personal tale for any other reason than the hope that others might draw their breath in quickly and say, "That is MY child!" and thus avoid the years of heartache and pain that we lived through. For had I only known the cause, and thus been guided to the "cure", we may have all been spared years of pain.
Before you read on, I want to ease any anxiety you may be experiencing. This story of our growth, and pain, and discovery, ends well. With joy . But the wasted years were so unnecessary. That is my one great regret. If only we had understood earlier.
As you may remember from part 1 of our older child adoption story, Anna was obsessively interested in TV, and vigilantly opposed to even the smallest changes in her routine. This manifested in various little ways that could be written off as defiant behaviors. Trying to teach Anna to make her bed before getting dressed, for instance. To her, it appeared to be an unwelcome addition to an established routine. Her routine was:
- wake up
- eat breakfast
- get dressed
- go to school
I wanted her to:
- wake up
- eat breakfast
- make her bed
- get dressed
- go to school
This one added task could not be accommodated. Her routine was set. No amount of consistency, punishment, or reward could alter the course. If I stood in her room, holding her clothes and saying in a calm voice, "Now Anna, please make your bed." Anna would begin to nervously turn in a circle, shaking her hands and crying. Or melt to the ground, repeating, "why, why, why?" The reaction would be the same day after day after day. Weeks, months. "Anna, you are making this ridiculous. Please, just make your bed," I would plead. Every day Anna would promise to try harder. She had a strong desire to please others and get along, and would often say exactly what you wanted to hear, without any real intent of changing her actions. To her, to say what you wanted to hear was the right course of action. She made you happy for that moment, and that moment was all that mattered!
Now imagine trying to add things to her routine as she grew older, such as using deodorant, showering daily instead of every other day. Every tiny change was an insurmountable, exhausting, no-win battle. The behavior techniques used with our other children, didn't work. Reading books on attachment, discipline, etc. and trying their advice, also led to failure. Perfect consistency on my part met with absolutely no change in behavior on hers. Once stuck on a course, Anna could not, or would not, make a change. And yet, in so many other ways, Anna was a pleasant, friendly, happy girl. She lived in the moment, glad to participate in anything fun. Planning, even a few hours in advance, was impossible for her. I developed charts that I would normally use for a much younger child, to aid her in "planning" to leave that house for a sporting event or music lesson. "Morning routine, school, homework" were all check boxes. On any day where an event fell, it was torture for everyone to remind, cajole, and literally walk Anna through the steps to get ready (pack soccer bag with shoes, shorts). It wasn't just disorganization, it was a battle to insert new steps into her routine. She whinned, dragged her feet, and resisted.
My internal struggle during this time revolved around the contrast between Anna's academic intelligence and her lack of social and emotional maturing. Living examples of normal emotional and social maturing were displayed in our other 3 children. As our other children gained independence, growing social networks, and widening interests, Anna's development in these areas remained stalled. She never asked to DO anything, only went along when something was planned. Her academic achievements grew and only emphasized the widening delays in other areas. Anna developed no new interest, save one: Little House on the Prairie . Her one hour of TV time was exclusively spent on watching re-runs of this program. Her free hours were spent drawing scenes from Little House, reading Little House books, and talking incessantly about each character. The tiniest details of each episode were memorized and acted out. All of this at first appeared so wholesome. But as time went on, and her interest never waivered (over 2 years), the fixation segued into the bizarre. Unfortunately I appeared to be the only one to notice.
The thing about having a sweet, generally happy, and academic oriented child is this: No one wants to hear your concerns about the child. I can honestly say that my initial attempts to reach out and discuss my concerns with a close friend, my mother, and husband were met with dismissals. In fact, because we have another child who is very energetic, loud, and boisterous, I was told by everyone that I really should focus my efforts on researching ADHD and drugs for that child. I was on a boat in an ocean of confusion. Even the internet, my often closest and most confidential friend, had nothing to share. What to use as search terms? "Socially retarded and intelligent"? Sounds harsh, I know, but in my secret and silent heart, I recognized that had she not been academically on target, my daughter would most likely be diagnosed as mentally retarded, or 'intellectually disadvantaged'. No, Google wouldn't give me the answers I needed either.
It took a crisis, and the near destruction of a good family, before anyone would listen. Remember how gullible and innocent Anna could be? She was also quite literal. Something said and believed, was true 100% of the time. Great in memorizing science and math rules, not so wonderful when applying the subtleties of life.
We had been attending the same church for many years. Our involvement was low-moderate, mostly helping with big suppers, attending the children's Christmas plays, 2 or 3 Sundays a month attendance. Our oldest child was in the youth group, and Anna was anxious to join. We delayed her joining for 2 years, as we judged her maturity to be low. However, Anna had recently enrolled in the 7th grade at a small private school near us, and was doing okay socially. We were ready to ease her into other small groups, and her sister would be there as support. Meanwhile, in Anna's health class, there had recently been a review about reporting good and bad touching of adults: mostly a safety update for young teens about making good choices, avoiding drugs, and understanding that our bodies are our own.
With all of this new knowledge swirling in her mind, she attended her 3rd meeting at the youth group (with her sister). During the musical time, while seated in a public area surrounded by other young people, a pastor placed his hand on her shoulder, and told her how glad they were that she had joined the group. Anna asked him loudly to "take your hand off of my body!". He flinched back, but then earnestly apologized, reaching forward and brushing her elbow with his hand. And that was when the nightmare began. Anna began to scream, and claim loudly that this young pastor had touched her body and she had asked him to stop and... every adult came running.
"When did he touch you?" "Did he touch you here? Did he touch you there?" Anna had never had so much focused, interested attention in her life. Her need to please and be liked encouraged her to give everyone the answers they seemed to want. The story went one way, then the other. We were called. We questioned her older sister, who earnestly and calmly explained what had happened. But it was a ball that once rolling, could not be stopped. And Anna loved the limelight. Still, it was overwhelming and she became confused. As I questioned Anna's sister, I watched Anna intensely. My mind was whirling. "My God," I thought, "How did this happen? Did this man abuse my child? WHEN?" Because I knew, in my heart, Anna had only attended this program 3 times and her sister had been with her every second. But still, she was so firm. He had touched her. Inappropriately. He had put his hands on her and refused to stop (this was before all of the innocent details had come out). After a short time, I insisted we go home. Too much was happening at once.
At home, the need to calm down and talk to my husband eclipsed everything. I gave Anna a Little House DVD and told her to go into the living room and watch it. It broke the rules. She had used her daily hour up already. And yet here I was, giving her the entire DVD to watch! I had made the terrible mistake. Anna went from being confused to being ecstatic. A WHOLE DVD of Little House! She made the connection between the extra time with her obsession, and the story she had told about the youth minister.
Over the next few hours, we steadied ourselves. Asking questions of ourselves and our daughters. Have you ever been alone with this man? No. Have you seen him take an interest in Anna? No, never. Our younger children were frightened, our older child angry. Although my husband and I went through a range of emotions: shock, disbelief, horror, questioning, my oldest daughter remained absolutely firm: She had witnessed what had happened, and absolutely knew that Anna had gotten swept up in something. Finally, our oldest said to us, "And now you have given her unlimited time to watch her show! She's laughing in there, Mom. She doesn't care!"
We refocused, gently, on Anna. Still unsure, we shut off her show and asked her to tell us about the touching. When? Where? The answers she gave ended in question marks . "Ummm, on my back?" "Umm, maybe my butt?" and "Can I watch more of my show?" After carefully explaining that we had to understand what had happened, Anna began to pout. "What do you want me to say? Just tell me." We were over our heads. Meanwhile, a firestorm of accusation had begun to burn through the congregation. A 14-year-old girl had accused a youth pastor of molestation. It was out of our hands.
The months that followed were the worst of our lives, our children's lives, and our marriage. Anna was for the most part unaffected. The youth pastor, married and with a baby, quit his job, but remained available at all times. His wife left after several months, with their child, to live in another state (only later reunited). We kept our family as private as possible, and in that privacy tore ourselves apart. Our children were shamed by the attention of their peers, social workers came to our home and investigated our family. Our neighbors no longer allowed their children to play with ours, the family that had police and social services at their home. Anna couldn't have cared less about any of it, and never had a solid story to tell. Her older sister became embittered toward her and her indifference.
After 8 months, we moved. In fact, I moved with the children and my husband stayed behind. He could not accept that within a day of the accusation, I did not believe Anna. Though he also came to accept quickly that she had been caught up in something, we were divided. He had not been highly involved with her, and had not listened to my concerns about her quirky behaviors and immaturity. We became strangers: He becoming an advocate for Anna, I desperately trying to find a way to shield our other children from the disaster of our lives. For her part, Anna now delighted in her father's light. He let her watch her show for hours, took her everywhere, threw out bedtime, allowed her to skip showers and finally, cautiously, he began to see my concerns. Why did Anna talk about the same thing over and over? Why did she laugh at the wrong places, adopt the speech and accents of TV characters, walk in a stiff way? I DON'T KNOW, came my reply. To tired, to sick, to bitter to care anymore. We had been so close to making it; we had been happy.
Anna and her siblings began school in our new area. Within a short time, Anna became sullen, angry, depressed. All qualities lacking in the previous hell she had created for our family. And yet, I ached for her. Our new home was a new opportunity, for all of us. My husband was coming over on the weekends, we were taking the steps to become truly partners in our parenting. The other kids were making new friends. The schools were fantastic.
Yet Anna seemed to be hurting in a new way that I could not understand. The little voice inside my heart whispered, You have to figure this out. What is it that makes Anna so different? My reading led me to the idea of Trauma in older adoptees. Yes, definitely there was trauma. Her orphanage was one of the bad ones, we knew this to be absolutely true. Over the years Anna had shared with us a story of her life that was consistent. She was ignored, definitely not enough food, but not physically abused. She had friends that made the days bright. She had an art teacher that was kind. She danced with her friends and they sang songs. Life had been boring, with a lot of TV. But all of this could not explain what became more and more apparent with time: Anna wasn't maturing. And her awkwardness was leading to peer rejection and scorn. The other kids were awful to her. They "borrowed" money, set her up for jokes, laughed at her. Her sisters and I tried to help by suggesting clothes, practicing conversations. Anna could not navigate social situations and had no concept (or acceptance of the idea) of fashion. Adults love to exalt the unconventional teen that goes their own way. In high school reality, there is no room for the nerdy, goofy kid who stares too much and wears high-water pants and pig tails like Laura Ingalls. Over her first year in high school, Anna came to resent all of us for trying to "fix" her, and she despised the other students at school. Her behavior dramatically spiraled down and I feared we would soon have more police involvement in our lives. Our other children, now teens, became anxious, nervous and resentful. I tried to install compassion, but all that they could see was someone who refused to fit in, who said embarrassing, loud things in public (Oh! That woman has a naked back!) and was the subject of her parents frequent disagreements.
Exhaustedly I realized that for years Anna had taken up most of my energy for parenting. She was now 15. By the grace of God our other children were kind, loving, and doing well for the most part. Home life wasn't perfect, but it was improved. We had been in our new home for a year, my husband was back with us, and we were communicating better than ever. Despite the drama, we were doing pretty well. That's the thing about life that we had learned. There could be bad times, and terrible situations, but we had learned to find the joy and celebrate one another.
We made what may seem to others as a drastic decision. I had reached the end of my endurance for Anna's needs. Her current school situation was intolerable, but I did not have the energy to homeschool her again. Yet we both recognized that Anna was at a crossroads. At 15 her emotions were a rollercoaster. She was anxious, sullen and silent, yet also a wounded, helpless child. Manipulative and unyielding, she could also be pitiful. Her mind was age 9, her body and hormones a healthy 15. We were headed for Big Trouble.
My husband agreed to step up and take charge of Anna's schooling. Even more, we were determined to just let Anna be Anna. She was moving on from Little House and now interested in learning Latin, and also in the Renaissance Age. Where this came from, we do not know, but we were determined to be supportive. We had to reorganize our work schedules, but were rewarded very quickly with a young teen who rediscovered her joy. No pressure to fit in, dress a certain way, or constantly listen to other teens talk about sex, parties, or other activities that were forbidden. My husband was true to his word, and although it took a year for all the pieces to fall into place, our lives found a rhythm and peace that had been absent for a long time. And finally, thankfully, the final piece dropped into our puzzle.
After all of my angst and many internet searches, after countless books and articles on orphanages, trauma, attachment issues, and years of trying every approach, the answer for our daughter's differences and quirky behavior was found in a randomly read Wired Magazine.
Asperger's Syndrome. Something I hadn't read about or even considered in my search for answers. Why? Because my impression of children on the Autism spectrum only included those who rocked for hours, waiving their hands in front of their face. I had no idea that there are many very high-functioning people with a mild form of autism called Asperger's Syndrome.
My EUREKA! moment came with the article's bulleted list of signs and behaviors, and continued on with the sentence, "Many girls with Asperger's are not diagnosed until adolescence".
- Difficulty reading other's body language
- Lack of Empathy
- Obsessive interest in a single topic over a long period (positive side: Very high ability to focus)
- Inability to read non-verbal social cues (faces, posture) and other people's feelings
- Awkward, repetitive gestures, body postures or facial expressions
- Stong aversion to change or spontaneity
- Above average memory skills
- Social awkwardness in general
- Non-interest in social conventions (hygiene!) and/or social dress code
Finding this article ignited a flame of hope. Selfishly, I felt an inner sense of "I'm NOT Crazy. There are other humans in the world like Anna." The only validation that mattered to me was my husband's, and by this time he fully accepted that something was different about Anna. That alone had been enough for awhile, but I had never stopped hoping that we would find some guidance on how best to help our quirky, intelligent, extremely nerdy and off-beat child, find her way in the world. With high school, Anna had come face-to-face with the reality that she was truly different than most of her peers. The teens around her seemed to communicate in a unique language, with their eyes, facial expressions and innuendo that all escaped her grasp. She was helpless to fit in, and no longer sure that she wanted to. Homeschooling her had been a good answer, but how to prepare her for the future?
Learning about Asperger's, and accepting that Anna doesn't choose to be disorganized, stubborn, or unyielding, and that her mind truly does work in a patterned, logical way, has made a tremendous difference in how WE work with Anna. We are no longer waiting for Anna to clue-in and grasp how social situations work, or how to engage others in a two-way conversation. We understand that all of these social interactions must be taught to her by us, and memorized by her. Practiced over and over. Like a toddler learning to say hello and goodbye, Anna must learn to ask, "how are you?", then wait for the reply, and ask a question about the person's family, interest, or day. Anna has become a brilliant student of social interactions.
Do teens accept and embrace Anna? Absolutely not . But as she has moved through her teen years, adults have often found themselves engaged in pleasant conversation with her, and find themselves delighting in someone showing an interest in their passions. Anna has practiced the art of meeting someone's eyes, smiling and slightly turning her head, raising her eyebrows and nodding to encourage someone to continue with more details. Conversation has become an art form for her. She may not fully understand why these little body movements and verbal cues work, but she knows that when she uses them, people like her. And when people like her, life is easier.
Anna was 16 when we began to educate ourselves about Asperger's Syndrome. She was 17 and had accumulated several skills before we shared the book Aspergers and Girls with her. We chose not to overwhelm her with a "label" before that time, and it was a good decision. Strangely, I believe that Anna would have tested on the spectrum as moderate at a younger age. But as she has acquired many skills, coping methods, and been allowed to freely follow her interests, she would most likely now test out as mild at age 18 years.
If you were to spend an hour with Anna, you might not sense any real difference between Anna and any other 18 year old. A few pauses before she answers, and perhaps a literalness in her answers that is unintentional. It would take a bit longer to really pick up on her quirkiness. However, put her in a fencing class (a passion that has led to a good social group) with others who share her interest, and she is just one of the gang. She is motivated to find enjoyable pursuits, and has even recently developed a true ability to joke and tease appropriately. With age, maturity, and practice, Anna is positively taking charge of her life. She does her studies daily, follows a schedule on her own to keep her outfits organized and chores complete, picked out a new haircut recently, and volunteers with two organizations (who love her and her good attitude) locally.
Long term, Aspies have about the same chance as the rest of us to live fulfilling lives. They are often drawn to technological or math-related careers (think about that geeky engineer that you met once), but are represented in many venues. Anna does not currently have a passion that could easily translate into a future means of financial stability. She's a late bloomer, but a hard worker. She's willing to try anything once. She's enthusiastic, friendly, and great at teaching skills to others (who would have thought??) We've asked that she delay dating until she is sure that she is the one doing the choosing, but she is involved in many pursuits that allow her to interact with males.
The bottom line is this: Knowledge changed our course . Had we known Anna has Asperger's earlier, we would have approached many issues very differently. Anna would have been actively part of Social Skills Training very early, and we would have most likely avoided an amazingly difficult, terrible time in our lives. And saved a young family from a terrible accusation. We were stumbling in the dark. Had we been walking in the light, with full knowledge of our challenges and the tools to handle them, so much suffering could have been circumvented.
My hope is that for someone, this article will make the difference. It's so easy to diagnose older adoptees with obvious labels: Attachment issues, OCD, Trauma, PTSD. But what if the child has something going on that has nothing to do with their time spent in an orphanage? That's what I missed. I heard hoof beats, and thought of horses. My daughter, the zebra, was standing in front of me the whole time, and I didn't see her. I saw everything else, and missed being able to step in earlier and give her the help she needed. Now I see her, and love the amazing young woman that she has grown into. And as to that question that I answered differently a few years ago: Do I love this child? YES, I do. I love her for exactly who she is.