In spite of the benefits, I have a one huge beef with the holistic health world. People in this field are extremely reluctant to ever admit that their approach doesn’t work for everyone. I’ve got news for them: Nothing works for everyone. Like many autism parents, we have tried several holistic approaches to help our daughter. It adds up to a hell of a lot of time, money and energy, but we feel that we’ve got to try. With all the approaches we have taken, I don’t think any have had any long term effects. Some worked in the beginning and then stopped having any effect. Many just never worked from the start. With a couple of exceptions, I don’t think we were purposefully cheated or scammed. These treatments were effective for many people; they weren’t for us. No one has ever fully admitted that their treatment, for whatever reason, just didn’t work or stopped being effective. A holistic practitioner’s response tends to fall into 3 categories.
1) Naomi’s condition actually gets worse. The practitioner’s response is almost always “It has to get worse before it gets better.” I have found this to be the most overused phrase in the holistic health world. First of all, it doesn’t have to get worse before it gets better. It sometimes gets worse before it gets better, but I find this is relatively rare and very temporary. Never have we have seen Naomi’s condition get worse, and then find significant improvement. At best she gets worse and then goes back to where she was before we started the treatment. That is the regular ups and downs of having autism and we have witnessed them whether we are following a particular holistic health protocol or not. Getting worse is not always a good sign, and I’m tired of it being responded to that way.
2) Naomi’s condition shows no change. This one is most commonly met with denial. “Oh no, she wasn’t using spontaneous speech like that 2 weeks ago. “ “Um, yes she was. She wasn’t using spontaneous speech in this particular building 2 weeks ago, but now that she’s been here every day she uses spontaneous speech because that’s what happens when she is comfortable in the environment. “ I imagine that a neurotypical kid may be similar. Shy and quiet when he’s first in a new environment and more likely to speak up as he gets more comfortable. It is not an indicator of an effective treatment.
Another response I hear is “I can tell that he eye contact is better.” This phrase sets off my BULLSHIT detector more than any other. Naomi has always had good eye contact, (at least on her terms). I first brought Naomi to a speech pathologist when she was 13 months old. She told me “You don’t have to worry about autism because her eye contact is very good.” Needless to say, that wasn’t the case. Now, when a practitioner tells me that she knows I’m wrong about improvement because she’s seen her eye contact get better, I know that practitioner is desperately grasping at straws for a reason I didn’t waste my money. It just plain didn’t work.
3) The condition gets better. In this case they are more than happy to take the credit and wear it proudly. I suppose they should. After all, that’s what we came for. Sometimes they deserve it. Sometimes, I’m pretty sure it had nothing to do with their treatment, it was just a fluke. There have even been a couple of cases where I haven’t followed through with the advice, so I know the improvement had nothing to do with the recommended course of action, but they take the credit without asking about the follow through. When we see results, when their particular modality ceases to help us, or she improves and then regresses, we’re back to denial. It feels like the improvement is more about their ego than it is about the person’s healing. Maybe this is why they are so reluctant to admit it when things don’t work. They feel the need to defend themselves and the modality. The common response is to put it back on the parent. You haven’t done it long enough, you haven’t been patient enough. It needs more time, more money, more energy, more commitment. You’re focusing on the wrong things. You need to forgo other modalities, other therapies, other health experts and double down on your commitment for this to really work.
When I hear these things I am mentally transported back to the time before Naomi’s diagnosis. Many people - professionals and lay people - came up with flippant explanations for her lack of development. Some said that she wasn’t talking because of my high strung nature (rings of the refrigerator mother theory.) Others claimed that she didn’t talk because she just didn’t need to. I catered to her every need so why should she? Some felt that I should focus on her gains rather than her failings. After all, she had good eye contact right? In the end, my sense that something was wrong turned out to be correct. Ironically, when I tell people in the holistic health field about this they generally roll their eyes and say “Why don’t they listen to the mothers? You know your child best.” Somehow the belief that I know my child best doesn’t hold up for holistic health practitioners when I tell them Naomi is not responding to a particular treatment they believe in. Suddenly, this mom just doesn’t know up from down anymore.
So after this experience, why didn’t I learn to trust my instincts when it came to treatments? I guess I wanted to believe that the holistic practitioners really knew best, that their treatments would work, that I just had to put in a little more time, a little more effort a little more sacrifice and it would all be worth it. In the end, my sense that these treatments just weren’t working turned out to be true.
I’ve been through enough now that I know not to second guess myself. When I think we’ve given something a fair shot, when my bullshit detector goes off, when I get told she’s doing awesome, and I know she’s doing terribly, I cut and run. I can’t prove that something wouldn’t be beneficial in the long run, but there’s just not enough time, money and energy to go that far with everything. Sometimes a holistic treatment just plain doesn’t work. Each of us has to use our judgment and move forward.