This week in a local parent forum, a member spoke up about MMS, a “treatment” that TPGA has examined (with horror) in the past. (See TPGA science editor Emily Willingham’s Dangerous Interventions: MMS and Autism.) A TPGA Editor was present during the MMS forum discussion and suggested we are reprint the conversation, with permission from that forum's Moderator.
Maybe there should be a 12 step program for autism parents who have fallen for misguided and misdirected "hope."
I am the father of a 5.5 year old ASD kid. He was diagnosed with autism three years ago. For the last three years, we tried many "treatments" including Andy Cutler protocol [chelation], multi-vitamins, Methyl-B12 shots, GFCFSF diets and various therapies. At one point in time, we were giving around 35 supplements and medicines per day. We saw some improvements for each of the above therapies. But they were MINOR.
My wife wanted to try MMS 8 months ago. But being a pessimist about autism therapies, I did not allow her to do MMS. I told her that it was too "dangerous." But four months ago, we decided to give it a try. The results are truly remarkable. My son is behaving like a normal kid. There are many improvements. We stopped all those supplements. Just MMS. He is doing great.
Being an Engineer, I tried to understand how MMS works on ASD kids. But after seeing the results, I don’t think of that any more. I have confidence now that we can completely recover my son soon. Before MMS, I had little hope.
-Now Hopeful Dad
Dear Now Hopeful Dad,
As an observer of the Cure Community over the last decade or so, I have seen a fair amount of things come and go. Some so-called treatments disappear, others just fall lower down in the noise level. But the most damaging of all the interventions I see touted is the one that starts, "Never Give Up Hope" and continues with "Try Everything."
If what you hope for is a cure, then my advice is to give that shit up. It is one of the most addicting and dangerous drugs I've ever seen. It leaves other dependencies in the dust. Parents who get their first high off it chase that feeling for years to come. They crash back to earth time and time again, but it doesn't matter. The euphoria it produced the first few times and the lure it dangles is so powerful that it trumps everything else.
Of course there are dealers out there who are glad to help. Like every other drug, it is trailed by both business and other junkies at every step. Fellow chasers encourage new parents to go farther, try harder, dig deeper. They trade stories of their best jags and convince new parents to try ever more bizarre things. The sad part is they think they are helping.
I don't know what has happened with your five year old son in the last few months. I do know that developmental bursts happen all the time. Natural growth and forward momentum and love and therapy all play a role. I also know that the time correlation between when you started using bleach on your child and the start of a period of improvement is so powerful that anything I say will be lost. The rush that comes from thinking your child may not have to have it so hard after all, that autism (and all that comes with it) is in your rear view mirror is an unmatchable high. What can I say to compete with that?
I will say it anyway, though. Our children need us to love them the way they are. We can find paths to the best possible lives for them. We do endless and indeed painful trial and error to find the right tools to help them access the world in a way that works. This may not feel as rapturous as the promise of a cure, but long term it is the real deal.
When a child is pronounced cured or “completely recovered” I have to wonder, why are their parents still in this group? Over the years I have heard from a variety of parents who tell me they have found "It." But they are still here because "It" wasn't "It" after all.
For me, "It" is education. How can I tailor my son's education to teach him what he needs to know, in a way he can access the knowledge? How can I teach others to be helpful to him in that effort? How can I help my community and the world to accept him, autism and all? And how can I educate myself to be his ally and his champion, but to step back when the path to excess beckons?
I'm not a Cure Chaser. You'll find plenty of those on the Internet, but I'm a Coper. And a mom in love. My son is brave, fun, surprising, and amazing as is. I bet yours is too.
Friday, October 18, 2013
Wednesday, September 12, 2012
I had a lovely conversation with another mom of an autistic child, face to face, sipping coffee, while we talked about hot-button issues in the autism community. Without losing respect or good will for each other. Maybe it was the coffee. It was good coffee.
We debated "cure:" why some parents want it and why autistic persons are offended by it. She said the desire for a cure would never disappear for some autism parents because their children are more severely challenged. She told me the story of a single mom with an adult autistic son, who was non-verbal, had restricted motor abilities, was self-injurious, and would never live independently. She related how difficult it is for the single mom to handle her grown child, how distraught she is about how she would care for her child as she aged, who would care for her child after she was gone. She asked, "Wouldn't you want a cure in that situation?"
Her argument for a cure was framed like this: Some autistic children are more severe. Those parents need relief from that situation. Therefore, let's find a cure.
But the logic that leapt out at me was this. A cure won't help that single mom. It won't help her adult son. But they both could use relief from the stress of challenges.
Stress is like wildfire. If controlled, it can bring rich soil and new growth. If it runs wild, it can ravage, destroying life and disrupting generations.
How do we go from wildfire to new growth? How do we bring happiness out of stress? For families with an autistic child, for an autistic adult, stress can feel insurmountable, a wildfire out of control. But we can apply some principles to go from distress to peace, to realize the full potential of happiness in our lives.
1. The amount of stress we feel is unrelated to the severity of our child's challenges.
A psychologist told me that, in all her years of seeing families, she found that some parents were more stressed than others. However, she noted, the level of stress in the parent did not correlate to the severity of the child's disabilities. Instead, the stress level was solely based on the parent.
That means that, in large part, our stress response is up to us. We could be a fashion stylist with a fabulous penthouse, a doting spouse, oodles of shoes, assistants, and cars, and a child with mild challenges and still feel our life was crisis, chaos, and miserable. Or we could be a foster parent of several children with severe disabilities, little income, and be happy. No matter how severe his problems, the foster parent can choose happiness or stress. So can the fashion stylist. She just hasn't learned yet how to respond to the wildfires of stress.
2. Our acceptance level of our child's challenges affects our stress level.
Lower levels of acceptance result in higher stress levels. Stress, any stress, is always caused by struggling against challenges instead of meeting them with equanimity. If we can respond with a calm balance instead of a desperate struggle to the wildfires, we can reduce our stress. When we are presented with an autism challenge and we meet it with peaceful equanimity, we can reduce our stress.
3. Acceptance of our children is not dependent on the severity of our child's challenges.
A child who is non-verbal, not potty trained, or self-injurious may present more challenges to a parent, but that parent can still choose to meet challenges with acceptance. It is not up to the severity of the circumstances. It's not dependent on the child. The ability of some parents to joyfully accept their children is not because their child is less severe, less challenging than another child. It is up to the parent's ability. Joyful acceptance is about ourselves, not dependent on our child's behavior or development.
Joyful acceptance of our children does not mean not helping our children. Acceptance does not limit our ability to search for and find services, accommodations, and access for them. Wildfire stress shuts down our thoughts, our paths to respond. But we can use the rich soil of acceptance to plant seeds of creativity and problem-solving.
4. Acceptance is not a one-time deal and it's done.
It is an ongoing practice, an active effort to stay mindful to challenges and to our responses. When we feel higher stress, it's a signal that our minds are struggling against challenges again. It's natural, just like wildfires are natural, for us to respond with confusion and fear. It takes practice to respond to stress with acceptance.
5. Our child's difficulties will escalate in a stressful environment.
Children are remarkably adept at picking up on stress, just like wildfires spread very easily, jumping from parent to child. Even when children don't understand the source of stress, they feel it. Even, or I would say especially, when that child is autistic. Autistic children may respond differently to stress, but they do respond. Our children have many causes of stress in their lives, but whenever we can practice responding mindfully and reducing our own stress levels, we'll automatically reduce our children's.
6. Pinning your hopes on unknown, theoretical solutions, like a cure, does not reduce stress.
Cure does mean not a change in our children's behaviors, temperaments, or stress level. Cure does not mean a reduction in stress for parents. Respite for parents and housing, services, access to public transportation, and employment for our children means a reduction in challenges. Cure does not mean a reduction in stress for anyone, except possibly future parents who don't want autistic children because they think it's too stressful for themselves or for their future possibly autistic children.
7. Ruminating about future possible unknowns results in higher stress levels.
Whether we're talking about future potential parents worrying about having autistic children or current actual parents of autistic children, worrying about unknowns is a spark in a dry forest. It causes stress wildfires. To reduce stress, we must remain focused on the present, on meeting the challenge of the next twenty minutes, or if you have the equanimity, the challenges of today or this month. We must remind ourselves not to worry about the challenges of tomorrow, but keep our mind on how we will greet this challenge in front of us right now: with a stress wildfire or the rich soil of acceptance.
8. Having an autistic child or being autistic does not result in an unhappy life.
Even when parents and autistic persons experience high stress levels, they can still lead complete, fulfilling, happy lives. The number of challenges does not eliminate the potential for happiness.
9. Every life has the potential for great stress or for great happiness.
Even lives that society does not value, such as those with greater interdependence needs, like language, self-care, or income assistance, have the potential for great happiness. It's almost an automatic response of society to express pity for lives that aren't valued. But there are autistic adults who are non-verbal or who require assistance who will tell you that their lives are valuable, worthwhile, adventurous, exciting, and, indeed, happy.
10. Practice compassion to reduce stress.
When you feel stressed, treat yourself with compassion. Breathe long breaths. In your mind, talk gently to yourself, as if you yourself were still a child. Say your name to yourself. Imagine hugging the child that was you, the person that is you. See yourself being embraced, valued for who you are, when you are most afraid.
Practice compassion to reduce your child's stress. When your child experiences challenging issues and behaviors, use that same imagery in your mind while you are calming your child. Breathe long breaths, talk gently, say their name, imagine that small child inside who is scared, imagine telling them - at that moment when they are having the most challenges - that they are the best thing that's happened to you. It's not just meaningless affirmations. It calms the fear and confusion your mind is feeling in response to a wildfire. Greeting your most difficult challenges calmly, embracing them even, stops the stress from burning out of control.
Stress can be a wildfire that consumes us. It's a self-fulfilling prophecy that has no relation to the size of our problems. Stress grows if we feed it worry and diminishes if we feed it acceptance and compassion. While challenges are a part of raising an autistic child or being an autistic adult, wildfire stress does not have to accompany it. If we practice greeting challenges mindfully, if we can welcome challenges with an accepting, compassionate mind, we can realize the full potential of happiness in our lives and in autistic lives.
A version of this essay was previously published at