Autism Treatment: It’s NOT One-Size-Fits-All

Autism treatment. It is NOT one-size-fits-all.

Lately, the way some people are speaking about their protocols, you might think so, though. The truth is sometimes it isn’t. I have been involved in autism treatment for four years now. I have seen a lot in this community — the good, the bad, the tragic, the infuriating. It’s all there. The autism treatment community is not for the faint of heart or the weak of stomach.

There is a strange thing that happens in the autism treatment community. Once you help a child get better, your name and your reputation spread like wildfire. Thousands of desperate families then begin to flock to you because they need help for their child and you may have the answer. And here is where the problem begins. Those who choose to embark on a life in autism treatment as a practitioner, physician, consultant, clinic owner, product salesperson, whatever it may be, you may not realize it but you have an unspoken duty to protect the children that you are serving. It’s unspoken because it honestly should go without saying. I would say that the majority of people working in the autism treatment arena today are genuine, caring, and honestly want your child to get better. They don’t do the work for the accolades or the recognition. Many, including your Thinking Moms’ Revolution family, do it under an alias to avoid the recognition entirely and they find fulfillment in helping a family find their child again.

The problem lies with the small fraction of people who have a lesser focus on service, the ones who are here for purely self-serving motivations. It’s not about money, everyone deserves to be paid appropriately (not exorbitantly, in my opinion) for their time. It’s that heady rush of ego in seeing your name in the limelight, seeing yourself on the schedule of speakers, hearing someone refer to “your” protocol — the one you came up with. This can be hard to spot because these people seem to present a benevolent agenda, and express a genuine desire to help.

Above all, we want you to pay attention to your Mommy and Daddy Gut. That niggling feeling inside that something isn’t quite right. Here are some warning signs that may help you discern which practitioners and advisers might be after something other than your child’s best interest:

1. They tell you that their products or services can — and will — recover your child. No one can know if it will be true for any product, any practitioner, or any modality. There are far too many variables in autism causation for any one thing to be the answer for every child’s issues. If one thing helped every child, we wouldn’t have so many who are still working towards recovery and so many families going broke doing treatment.
2. They openly mock, begrudge, or shut down conversations about treatment options that are not their own. There is a difference between allowing respectful dialogue in an appropriate setting and an unwillingness to consider protocols other than their own as being effective. For example, if you are in a large biomed-themed Facebook group, it’s appropriate to discuss everything that fits under the biomed umbrella. If you are in a Facebook group dedicated to a focused treatment, it may not be appropriate to ask questions about other protocols, but you should be able to ask how other protocols will affect the one you’re discussing. That is important information to know to avoid cross reactions or treatment cancellation.
3. They will try to make you believe that if their treatment didn’t work for your child, it was your fault for not administering it properly. It can be hard to accept that a treatment may not be working for your child, but if you have done that treatment as advised and your child isn’t responding, the treatment may not work for him or her. No treatment works for every child. Period.
4. They will tell you to stay the course in their treatment, even when it is clear that the child may be having adverse reactions and question your commitment to your child’s recovery when you question them. Herxheimer reactions can happen in any treatment, but an important goal of the autism treatment game is to minimize discomfort during healing. We don’t want our children to feel miserable, firstly, because it would be cruel and, secondly, because it can set healing back a great deal. Excessive Herxheimer reactions are not indicative that the treatment is working and should not be sought out as validation of such. That said, refer back to my initial point about listening to your gut. No one knows your child better than you and it’s time to take back your power. You are in charge. You get to pick what your child does and does not receive in the way of medical treatment. and if you don’t feel like your child is doing well, it’s time to move on.
5. They lack the proper education or do not work under a qualified and licensed physician (MD, ND, DO, DC) as required to be giving any medical or treatment advice. Anyone who does not have the oversight of a licensed professional should not be giving medical advice, end of story. Fellow parents can say “this is what worked for me” or “if it were me, I would do XYZ,” but the moment that the tone shifts to “do XYZ,” they are giving medical advice without a license, and you should run the other direction. For occupations other than those listed as licensed above, research their education and at the very least ensure that the training they have received is from an institution well regarded (and accredited). Anyone can buy a degree online — you want to know that your practitioner is properly educated.

Autism treatment is a tricky game. It confers a lot of power on those who are able to make a difference in children’s lives. But you, as the parent of a child with autism, should have all the power, and you need to be in charge of your treatment plan every step of the way. You are the expert on your child. And if you see someone or something that is hurting children, speak out. If you see someone being silenced for asking questions about a treatment, your red flag should be flying.

We fight long and hard for the right to choose not to accept a medical intervention that is clearly not safe for every child. So why would we then give up that empowerment and hand it over to the next person who swears that his or her protocol, and only that protocol, will lead us out of Holland and back to Rome? You are the one who will heal your child, with the toolbox of things you accumulate. No one else gets that power.

With Love,

~ Rainmaker