Why It Took 4 Years to Diagnose My Daughter's Autism

Recently, I was recounting the story of getting my daughter's autism diagnosis to a newly made friend, and how I had that moment of validation, of "See? I'm not crazy. I knew something wasn't right." What was most interesting to me, though, was that even after all this time, it still hurts to the core to tell the story of everything we went through. I thought I was past that and had dealt with it, but it still brings back emotions so raw that I feel as if I'm sent back to experience the moment again.

"Something Was Different About Her"

When E was an infant, I couldn't tell any major differences between her and other babies. She was my first child, and I didn't have a lot of experience. I thought it was normal to have difficulty with nursing, and normal that babies slept through the night by 10 weeks. I did notice that she screamed as though in pain when in her car seat, but I thought maybe something wasn't installed right, or maybe she got motion sickness. Still, I avoided going on trips with her very much because of the stress on both of us. Then, at her three-month checkup, the pediatrician asked if we were doing tummy time. I said no, and she said we should start.

That was when I first started to wonder if something was different about her. We began tummy time that very day, and she began to scream. This wasn't a cry — it was a scream, like someone-just-stabbed-me-and-it-hurts scream. I thought, "OK, the doctor said she might cry and that I should try for a few seconds and work up to a few minutes." I tried, but the longest I could leave her there was a heartrending 20 seconds. After three weeks of trying and no progress, I put an end to tummy time. We spent our time walking in the stroller on trails instead because she was really engrossed with nature and perusing books about animals.

When "Don't Worry" Makes It Worse

At about 6 months, we joined in a small playgroup, and I noticed small differences. I noticed that other babies smiled a lot, drooled a lot, and put things in their mouths. E did none of that. Sometimes she would smile, but she never put anything in her mouth or drooled. I brought it up at her next check and was told not to worry about it. This began a trend for the next two or three years.

At her nine-month check, the doctor was impressed with E's verbal skills. She was pronouncing very clearly and could say three- or four-word sentences. I mentioned that she seemed very obsessed with the same TV show (Barney) and that she would sit and "read" the same book for three or four hours sometimes. I was told not to worry about it, that I was in fact lucky to have a child with such focus. Yes, but she isn't interested in anything or anyone else. I was again told not to worry about it.

At her 12-month check, I mentioned that she wasn't crawling and not inclined to at all. She had begun to cruise a bit, so I was told that some babies skip crawling and not to worry about it. This was the only time I felt reassured, since, sure enough, two weeks later she started to walk.

At her 15-month check, I was really worried because she wasn't interested in food, both generally and in trying anything beyond super-pureed fruit, yogurt, or those soft Gerber star shaped "crackers." I was told to keep trying and not worry. This was the first time I felt like physically shaking someone and saying, "Don't tell me that! Something isn't right." It was also the first time I began to feel like maybe I was a neurotic and "crazy" mother. At her 18-month and two-year checks, I said nothing when asked if I had concerns. I told the doctor everything was fine, but it wasn't.

A Mom's Need to Find Answers

Then three things happened simultaneously that gave me a little push toward wanting to know what was making her different enough that she was behind in physical and social development, but not enough to be glaringly concerning to people besides me. First, I went back to work and had less time to spend trying to get her engaged in social activity, in trying to persuade her to eat food (she often took two hours to eat a meal). Because I was back at work, she started at preschool in a 2-year-old class, and her teacher noticed how great she was at reading and talking, but also noticed the small differences from other kids. The most pronounced thing was that E played parallel to but not with other kids. Third, I found out I was pregnant with my second daughter.

Suddenly, I needed to have something in place for E before the baby was born. Her teacher and I suspected it might be some form of autism. I took her teacher's observations to her three-year checkup, and the pediatrician finally referred us to Early Intervention. That was a frustration unto itself, because they wouldn't categorize her as autistic, but they said she has a speech development delay and had her see a speech therapist. After three months, the speech therapist said, "She doesn't have a speech problem," and we were released from the program. At that point, I took a hiatus because of having the baby and helping E through the transition of having a sibling (she withdrew into her own world for about a month).

A Moment of Truth

When H was about a year old, we moved to Texas, and that is when the you-know-what hit the fan. Big-time explosion. New preschool, new town, new routine, new job, etc. Everything in E's world was changed all at once, and she did another major withdrawal. Her diet became Cheerios and yogurt only. Looking back on it, it's eerily similar to that scene in Temple Grandin where she tells her aunt that she only eats yogurt and Jell-O. Then she started to run away from preschool, and I would have to leave work and pick her up. Things got progressively worse, and they were going to kick her out of preschool if it didn't stop. The director said she was just a terribly behaved child. I said I thought she had autism. After looking at me like she thought I was nuts, she said she'd hold off on expulsion until after I saw the local psychologist about E. I took her in, and he said he didn't think she had autism, but perhaps was high-strung. I looked at him, and I looked at my daughter, who was sitting quietly reading her animal board book and who would sort of answer his questions but did not directly have eye contact with him in the four sessions we had with him. I thanked him for his time, told him I thought he was wrong, and left.

I called my husband, who was still in Oregon trying to sell our old house, and told him to take it off the market. I said that we were moving back, and I was quitting my job until we could get our child the help she needed. She was far more important to us at that point than our dream of trying to move somewhere warmer, and I felt like we were seriously losing the battle. So we moved back, and I did my research this time on psychiatrists who had experience in testing for autism, and we chose one. It took another month, but about the time she was 4 1/2, we finally got a diagnosis of high-functioning autism. The psychiatrist told me that she could understand why everyone might look at her and think she was just a quirky or eccentric kid, but she clearly had the lack of eye contact and the "obsessive focus" on one or two subjects that were symptomatic of classic autism.

She also looked at me and said, "See? You're not crazy. You knew."