In response to my recent blog post asking whether parents feel guilty because of their child's autism, one parent said:
Because there is no definitive cause of Autism (not one that has been discovered yet), there is no reason to feel guilt. How can one feel guilty when one doesn't know in the first place? I don't feel guilty about Autism. I don't know what caused my childrens' Autism. I have a feeling that it is genetic, but it's just a feeling. My guilts lie in the direction we take ie. therapies, schools, disciplines, etc. Is it the right decision? Was that the right thing to do? Was this medication a good idea? You know, stuff that I can actually control. My children have Autism and that's a fact. Why they do, or how they do is beyond my control. They just do. And for that, I don't feel guilty.
When our son was a toddler, a kindergartner, and even an elementary school student, I was constantly rocked by waves of guilt over whether I was doing ENOUGH, TOO MUCH, or the WRONG THING to help him.
Yes, he was in a good program at school, and getting OT, PT, speech, and Floortime. Many children with autism, in addition to the OT, PT and speech, are receiving at least some level of ABA as well.
But there are so many other avenues to explore!
Over the years, I dipped (with Tom) into auditory processing therapy, vision therapy, dietary therapies, dance therapy, RDI, Floortime, music therapy, social skills therapy... But being a bit of a skeptic, it occurred to me early on that there was NO WAY to know which of these would help the most, or even to be sure which were making a difference when his skills improved. After all, he wasn't going to quit OT, PT, speech or school in order to try out vision therapy exclusively!
What was worse, since all these therapies are essentially "alternative" in the sense that a typical pediatrician knows little about them, there's no one to help guide a parent through the maze. Yes, there are coaches out there, but none know more than the well-versed autism parent about whether X Y or Z therapy is going to be the best option for their individual child with autism.
The truth is, if you take a child - ANY child - to a sensory integration specialist, they will find ways in which sensory integration therapy can be helpful. The same goes for a social skills therapist, or a music therapist or a nutritional expert, or any other therapist. These folks aren't charlatans: they KNOW their approach can be helpful. They believe their method can be helpful to your child. They're probably right. And you certainly can't hurt your child by feeding him organic food, taking him to music therapy, adding in social skills therapy, trying out auditory processing therapy, checking out vision therapy, or looking into TEACCH, SCERTS, RDI, Floortime, etc.
But in a world with limited funds, time and opportunity, which is the right set of choices for any given child at any given moment?
Our approach, in the long run, has been to radically reduce the number and type of therapies we offer our son. We work closely with him in our home and in the community, and we work closely with his teachers and therapists, to be sure he is learning, growing, developing and enjoying life. We seek out opportunities for him to shine, and we work hard to help him be all he can. We will never, ever know, though, whether some as-yet-untried avenue could have been "the one" that would have made the greatest difference.