We did the ABA therapies, occupational therapies, and speech therapies. These interventions did wonderful things. But Abby was still struggling. Adding insult to injury, the lack of public knowledge about autism on the part of the people around me, coupled with my young age, made me feel looked down on as a bad parent. To onlookers, I was either too strict or not strict enough. Abby’s public meltdowns had vehemently angry strangers reducing me to tears. I was desperate to show everyone that I wasn't a bad parent, and that she wasn't a bad kid. That I could fix this.
The science-based books that I read felt limited. They offered no real answers, because so little was understood. The books that offered answers, cures, and reassurances that I could fix her were the books that tended towards naturopathy, and, as I realize now, pseudoscience.
The worst (and best) thing was that starting Abby on a gluten-free, dairy-free diet did make her better. She went from being sick all the time to less ill. I didn't know until years later that she had celiac disease, which is an actual medical condition. I assumed that her struggles came from what the books were telling me - a diet problem, a environmental problem. Thus began the series of my "eliminate all the toxins" crusade - something that almost bankrupted me, and did little for my daughter.
Of course, Jenny McCarthy's crusade started around this time in my life. It was the first major coverage of autism I had ever seen. Doctors weren't offering any answers, so I could understand the appeal of this celebrity spokesperson for the cause. We still vaccinated Abby, of course, because I would take the autism over the diseases she could get. We barely went anywhere for a year, though, because I was so scared she'd get sick.
Now, the big question: How did I get out of it all? I noticed that more and more scientific research on autism was becoming available. I began to see correlations between Abby’s autism and my ADHD. I became too poor to always follow my organic diet regime, or buy fancy cleaning products. I worked too many hours, and had full time school on top of it, to make all our food from scratch. As we slowly added conventional things back in our lives, I realized that Abby was still doing OK. Adding gluten back in confirmed the celiac, and so we removed the gluten (for the right reasons!). Abby continued with ABA therapy. I started using techniques I'd taught myself to help me with my ADHD. We still use essential oils, more as a placebo and because "they smell good." We get our vaccines - Abby just had the HPV vaccine a year ago.
Abby is doing great now. She went from being labeled as "not likely to go to normal school, have friends, or any adequate social skills" to Honor Roll, Honor Choir, cross country, and Girl Scouts. She has won awards as a programmer for her robotization team and Science Olympiad team. She has friends - real friends. To top that off, Abby has tested into both pre-AP biology and pre-AP ENGLISH for her start of high school next year.
In the past two years, we've been living a science based life. Abby hasn't gotten worse. She's thrived. I didn't "fix" her. There was no magical solution beyond following what medical science is now supporting. I have remarried and my new husband is supportive of Abby and me, and of Abby's needs. I can provide her with a stable environment. Abby has structure, relevant consequences to both undesirable and desirable behavior. Does she still have autism? Oh hell yes. Does she still struggle? Double hell yes. But by trying to work with it instead of curing it, we have made our lives much easier.