My Autism Story: Cheryl's Daughter Amy Has High-Functioning Autism

Amy, with her mom and dad
Cheryl lives in Southern California, where she says, "Just about every celebrity reality show takes place!" She lives with her husband and her 6-year-old kindergartner Amy "without my own reality show!"

Amy has high-functioning autism, and Cheryl says that while she was "very depressed" when she first heard the news, she's dealing with it a lot better now.

Here, she shares her story.



How old was your daughter when you first suspected she might have autism?

When my daughter was 3 1/2, I suspected something was up with her, but I never suspected autism. She was extremely verbal; however, she wasn't interacting with the other kids at her preschool very much. She had some friends she'd play with, but even then she was often parallel playing. She also had huge problems with transitions or with anything else that didn't go her way. She'd have huge tantrums, often over little things. I'd ask her preschool teachers, the preschool director, and her My Gym coaches if anything was "off" with her, and they all thought she was fine -- just really smart!

It wasn't until a year later that I actually pursued a diagnosis on my own. Things hadn't gotten any better, and I thought something was seriously wrong. What that something was, though, I didn't have a clue. I took her to the psychologist at the school district to get her assessed. Her initial reaction was that I needed parenting classes because I had the best kid in the world. I insisted she observe my daughter at her preschool with her peers. That's when my world changed.

When you first found out Amy's diagnosis, how did you react?

My very first reaction was, "I'm not crazy! Yay! Now we can get help!" After that, my reaction went downhill. We took Amy to get assessed by an independent psychologist who had a pretty grim report. Amy had high-functioning autism (Asperger's) and would need a lot of behavior therapy. I started to appreciate the seriousness of Amy's diagnosis. The world looked bleak. I literally felt nauseated all the time. And depressed. Very depressed.

My reaction now is that getting her diagnosed was the best thing. The depression is gone (mostly)!

What's her diagnosis?

High-functioning autism, which means that Amy's brain isn't wired like other kids' brains. She has a hard time managing her emotions. She initially was socially inept and didn't even want to play with other kids. She had a hard time with imaginary play. Her play was initially very scripted. She saw something on TV or read it in a book, and she'd just act out the story. During the time we got her diagnosed, she'd constantly pretend to be a character in a story or TV show. If we didn't call her by that name, she'd have a tantrum. She'd also become obsessive over certain subjects like dinosaurs, rocks, bugs, foreign languages, and computers.

On the other hand, kids with Asperger's can be extremely smart -- Amy taught herself to read at age 4. When an independent psychologist assessed and diagnosed her, she found Amy to be academically advanced. She read at the level of an 8-year-old (she'd only been reading for about four months at this point), and she did math at the level of a 6-year-old. The psychologist had to cover up the answers while testing Amy because she was able to read the answers even though they were upside down. Now that Amy is in kindergarten, I've found that she can also write and draw things from an upside-down perspective.

What are some things you wish someone told you about autism that you had to learn on your own?

  • Autism covers a spectrum. Kids can be autistic even if they have a huge vocabulary. So just because your kid is speaking doesn't mean they're not autistic!
  • Listen to your inner voice. If you feel something is off with your child, then something is probably off with your child. Even if everyone else tells you that your child is fine, get them assessed pronto.

What has been your greatest resource for information and support?

Other parents of autistic children -- especially local ones. We were very blessed to be well-connected to some people who are wonderful sources of information. Because of this, we were able to consult with a specialist at UC Santa Barbara, who was able to get Amy into a rigidity study. Wow -- what a difference that made!

The online community, such as the boards at CafeMom, has also been really valuable. The main type of support that was lacking for me was an in-person support group, which met during the school day that was specifically geared to high-functioning kids. I was only able to find one support group and most of its members had very low-functioning kids. I'd often leave the group more depressed than I was before I went. I stopped attending that group and had no support group to attend.

What's been the most challenging part of dealing with a child with autism?

In my case, the unpredictable nature of what will bring on a tantrum. Things can be going great, and then WHAM! a tantrum comes out over something I had no control over or couldn't see coming. This can be enormously stressful. Luckily, I've gotten good training on how to deal with these episodes, but it's still very stressful.

What makes your daughter unique?

Amy has been getting therapy for just over a year now, and her progress has been amazing! Everyone who has worked with her has said they've never seen this amount of progress in such a short amount of time. I know that there's no "cure" for autism, but I've read that somewhere between 10 and 20% of kids do seem to leave the spectrum with just behavior therapy. I think my daughter will be in this percentage. The independent psychologist and our doctor agree with me. The doctor commented that she's never seen anything like this before. I'm really proud of my daughter because she wants to have friends and she wants her tantrums to end. I believe that it's because she's had this urge to change that she did.

What do you think causes autism?  

I don't think one thing causes autism. I think "autism" actually consists of a wide range of different things that appear to cause the same symptoms but can be very different. For example, some kids' autism might actually be a food allergy. So when these kids go on a special diet, they show huge improvement -- though this diet does absolutely nothing for other kids. I do believe there's a genetic component for many kids. In my daughter's case, the psychologist believes now that my daughter's brain was highly developed in some areas, but slow developing in other areas. The behavior therapy appears to have kick-started the slow areas, so now everything is almost caught up.

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