Here's my diary in honor of World Autism Awareness Day. It's my first diary, so please be kind!
I am a mother of a 9 year old girl with moderate to severe autism. It's been a rough nine years, for me, for my daughter, and for my husband and two other (typically-developing) kids.:
We started to see problems with my daughter very early in her life. She didn't talk, didn't make eye-contact, was echolalic (repeated things she had heard, for long periods of time) and had object attachment problems.
She was diagnosed at age 2 1/2, right before we moved to Belgium. We put together an ABA program for her there, at great expense to ourselves, by flying consultants from a Louvaas replication site in the UK, to train our own tutors. We left Belguim and came to California to continue her therapy. So all in all she had 3 years of intensive ABA, all to little or no effect.
I got caught up in the Defeat Autism Now/biomedical treatment, but don't freak out quite yet, you that freak out at the mention of biomedical treatments. I did my research, made sure we were using an M.D., and was careful that we could do good but no harm by this treatment. It involved vitamin/supplement treatment, a GF/CF diet, chelation, and one other kooky treatment that was harmless, but I'm too embarrassed to even mention what it was.
As we were pursuing this treatment there were many red flags that something was wrong. As an example, the people testing your child for condition x was also the company through which the supplements to treat condition x were sold. I questioned the doctor on this and was kind of poo-poo'd. I'm ashamed to say that I allowed myself to be poo-poo'd instead of listening to my better instincts.
One really labor intensive year later, we were seeing no changes or progress of any kind.
We felt we had given alternative medicine our best shot, and after a break turned to more conventional medicine, in the form of a well-respected pediatric neurologist. My daughter's behaviors seemed only to get worse, never better. We spent two years with this doc trying different meds, all to no little or no effect.
My personal feeling is that there is no need to "fix" my child and her condition. There is, however, a desparate need to allow her to be free enough from anxiety, fear, frustration and anger to be able to develop up to whatever level she is able. It is to this end that I pursued all these therapies and treatments.
In the end no one seemed to be have any answers for us, which is hard. I'm not complaining--I recognize that there are lots of people who are trying to find answers, and many who have offered support of one kind or another. But on the other hand, autism, especially when it causes socially unacceptable behavior, is EXTREMELY isolating, and it sometimes feels like you and your family are all alone in the world, trying to survive as best you can.
I feel strongly that the issues surrounding autism are becoming more and more contentious, and we need to find ways to all take a deep breath and find kinder and more effective ways of discussing issues like vaccine safety, environmental v. genetic causes of autism, educational funding for autism therapy, and the like.
What my experience has taught me is that there are no easy answers. Vaccines are not evil, but neither has the government done much to instill confidence in uneasy parents. Conventional medicine has offered us nothing more than biomedical treatment did, so I would neither scoff at nor recommend either, based on our experience.
So, on World Autism Awareness Day, when you're out at your local pizza joint and some kid is being loud and making crazy noises, maybe even throwing a nuclear tantrum, and you think "hmmmm...something seems a little different about that kid." and you look at the Mom and she looks like she's trying not to cry and the whole family ends up packing up and running off in embarassment, just maybe give that woman and her family a little wink and smile on their way out of the pizza joint, in solidarity and understanding. And if your kids are staring at them, tell them it's not polite to stare.