This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.
The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.
Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.
We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.
Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.
You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.
But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.
We got to the point where we were burned out and tired – a point we’d come back to over and over again – and we just wanted to get it done and over with. We wanted something more definitive. We wanted shortcuts. We wanted to know we were on the right path to get to the finish line.
Looking back, I realize how fragile and precarious being in that mode is. “What else can we try?” becomes a frequent thought. Things that before sounded dubious start sounding appealing. Many therapies that indeed are at best questionable and at worst downright dangerous are aimed at us when we’re at this point emotionally. If we had all our wits about us, our ability to evaluate these things would be more sound. Instead we’re worn out, burned out, and freaked out.
You ask yourself “are we doing enough to help our child?” and there are plenty of practitioners ready to suggest (in more subtle and seductive language than this), “No, you’re not. You need to try this, too,” for a hefty fee, of course. And the temptation grows quickly, some days almost exponentially. To quote General Beringer from the movie War Games, “I’d piss on a spark plug if I thought it’d do any good!”
As time passed, our J-Man’s needs accumulated much faster than the growing number of therapies he was in could address. He wasn’t catching up with his peers, not remotely. The developmental charts indicated he was falling further ‘behind’. Eventually, we threw out the developmental charts and refused to read them. You feel like the hole is getting deeper so much faster than you can dig.
Two years after the therapies began, we received the autism diagnosis. Up to within days of his evaluation, we still didn’t believe he was really autistic. What we often referred to as the ‘A-word’ back then seemed so final and hopeless. It felt like someone dropped a black curtain over the horizon and everything we saw down the road was just blank. There was no roadmap or path, just an uncharted frontier.
It didn’t really sink in until we observed the evaluation. Then it was obvious. The doctor didn’t even bother scoring the results before he gave us the diagnosis.
It felt like we’d fallen into a black hole.
Until then, it took us an entire paragraph of diagnoses strung together to describe him. He had “significant speech delays, communication problems, sensory processing disorder, proprioceptive and vestibular issues, tactile and oral defensiveness, gastroesophageal reflux, intense focus with some toys, a lack of social reciprocity, and gross and fine motor planning challenges.” Then in one day, all that was simplified into three words.
He has autism.
You get the diagnosis, and you’re immediately rushed into an entirely new world. It has a name. If something has a name, you can go kick its ass. Everything feels urgent. You can see an hourglass of your child’s future and the sand falling. All the rhetoric around autism just adds to it. As you see your child’s peers developing further and faster, you constantly panic because your child isn’t able to keep up. You wonder how bad it could get. You wonder how behind they will get. You fear there’s no way they’ll ever catch up.
In short, you are scared to death.
You get dumped into the endless process of getting your child services, initially through Early Intervention, then through your local schools and anywhere else you can get them from. You mix in private therapy and constant fighting with health insurers and your dwindling finances. It seems like the word ‘autism’ is used every other sentence about your child. You are so tired that everything gets dreamy and detached and you wonder if you’re living in a TV drama where you’re acting out some other life, and you’ll get to resume your old one at the end of the hour.
But you don’t, and you won’t. You’re exhausted, scared, and lost. And it’s at this point when you feel like you’ll do absolutely anything to make things better. It’s wired into our parental DNA. We would rather have our arms chopped off than watch our children struggle so much.
With a few years under our belts now, it’s somewhat easier to build up some perspective about all this. I still see that time in our lives as our most vulnerable. Fear, terror, and exhaustion are completely natural. We’ve all felt it.
Why did I tell you all the above stories about us? I want you to think through the entire history of your story. It’s helped me tremendously. I want you to be able to see the emotional landscape of your journey and learn all you can from it. For many of you, I want you to more fully appreciate your fear so you can understand that when it comes to therapies, fear can be turned against you.
Clever practitioners of all kinds of shaky therapies or complete scams know you’re afraid – remember, we all are! – and that you will at some point get desperate to do anything to help your child. This isn’t a huge mental leap on their part because, hey, we’ve all been there, too!
I know many of these practitioners fully believe that their therapies are valid and that they work, and have convinced themselves to the point where they’d probably pass a lie detector test. They ditched the rigors of testing and validating their methods long ago, and in the absence of facts, any rationalization works for them. That doesn’t make what they’re doing any less wrong.
If your methods are completely unprovable, you can dismiss anything that contradicts it. When facts pile up against your therapy, just attack the people who provide the facts. The worst of them appeal to your emotions and ease into the role of your child’s savior. They hold the secret of your liberation, and they’ll share it with you, for the right fee of course.
If you question them, they ratchet up the guilt because they know you’re afraid. They try to overwhelm you with jargon and make you feel stupid. They know that if you feel like you haven’t done everything you can for your child, you’ll believe you failed them. And not failing our children is something wired into a few zillion years of parental evolution and instinct. We can’t compete with that part of ourselves.
Most therapists we’ve met in the standard array of therapies (speech, occupational, educational, some behavioral) have been not only reputable but amazingly skilled, kind, and just plain awesome. Once you step outside the tried-and-true therapies, things can quickly get a lot grayer. That’s not at all to say everything else is bunk because it’s not. You have to come up with a process for separating the good, the ineffective, and the snake oil.
For what they are worth, here are my suggestions about what to consider when you’re looking at your various therapy options.
- Rule #1: Don’t make decisions in the peak of your fear. If someone’s trying to sell you on a therapy and you feel your fear swelling, listen to that. Tell them you need to think about it, then go home, do your research, ask others, seek out a variety of opinions and weigh them, talk to people who’ve actually done it, but don’t sign up for anything out of pressure and fear. Nothing bad will happen if you take some time to decide.
- Sign up for or ‘buy’ therapy like you would a car. Research, consider, don’t get sucked in by marketing language, don’t make rash decisions, always sleep on it, and always be prepared to walk out. If they put a lot of pressure on you to sign up right there, walk away. Good therapists give you time to think things through. Snake oil salesman don’t.
- If they make claims of ‘curing’ their patients, it’s bull. If there were a treatment that showed rapid, profound improvement in even a small percentage of autistic children let alone the crazy claims many make, whoever devised it would probably have won a Nobel Prize by now. There is no such ‘cure’ for autism. Improvements – sure. Enough improvements to ‘lose’ an autism diagnosis – in rare cases, often ones that were misdiagnosed to begin with. But there is no cure for autism.
- If anyone promises quick results, it’s almost assuredly bull. It’s a seductive promise, and it’s almost never true unless your child was completely misdiagnosed.
- If they bombard you with lots of impressive-sounding stuff, be skeptical and verify it with multiple sources. There are a couple of principles worth noting here. 1) If someone knows more than you about a subject, it’s almost impossible to tell whether they know 1% or 1,000,000% more than you. They may not know much at all. 2) Arthur C. Clarke says that, “Any sufficiently advanced technology is indistinguishable from magic.” To that I’d add, “Any therapy you don’t understand yet can be indistinguishable from magic.” It’s natural to want to buy magic as it’s exactly what we sometimes think we need, and it’s natural to trust people with some credentials who sound like they know what they’re talking about. Judge the therapy based on results, science, and merit.
- If it costs a lot of money up front, be very wary. I’m not sure I can even name a reputable therapy where a patient pays a lot up front.
- If the practitioner refuses to take any insurance, I’d be wary, though given the state of insurance these days, I’m less wary of it than I used to be. But sometimes it means insurers think what that practitioner is doing is full of it. Now admittedly, many insurers are also full of it. And a growing number of practitioners don’t take insurance because it’s such a pain to deal with claims, but combined with other factors, this could be a red flag.
- Listen to the rhetoric of the practitioner. Autism can indeed be a very difficult thing to deal with. But the more a practitioner uses negative language about autism, for example, in terms of it being some terrifying force that sounds like it belongs in some dark, horrifying novel, the more I think they’re up to something. The best therapists I’ve encountered focus all their energy on enjoying our children and helping them grow. Autism just is what it is. There are many challenges and many opportunities. All the dramatic language just clouds the issues.
- Listen for the marketing language, too. The harder the sell and the more fancy the marketing materials, the more you should be careful. A nice looking brochure is one thing. A big packet of stuff that starts sounding like an infomercial – be wary.
- Listen to your instincts. Does the therapy sound dangerous? How invasive is it? In our family, we have focused on the more traditional, non-invasive therapies (speech, occupational, educational, and some behavioral therapies, and a bit of dietary tinkering) and have had what I’d call significant success with them. People have suggested all sorts of things to give or inject into him, and we’ve refused. A lot of our kids may need some sort of pharmacological intervention at some point in their lives. This is a decision most of us will have to wrestle with someday, perhaps sooner than later. But as you’re presented with options for more and more invasive therapies, ask yourself, why should we do this? What are the risks? What are the benefits? One of the hardest things we have to admit to ourselves as we make these decisions is that we’re entertaining some of our more dubious options simply because we’re tired of being afraid. We all do it. It’s just best that we acknowledge it and evaluate our options as best we can.
- Remember that you’re likely doing several therapies at once already in addition to all your child’s ongoing developmental changes, which can be unpredictable with autism. This creates a situation with dozens of variables. If your child starts improving, how do you know what one approach or what combination of things brought it about? Often, you don’t, and there’s no easy way to do it. Therapists who understand this complexity and help you figure it out have much greater trustworthiness in my mind. The dubious ones are often characterized by claiming credit when things go well but blaming other factors or suddenly agreeing that “it’s all very complicated” when their treatments don’t seem to be working.
- If you do start a course of therapy, it doesn’t work in the way the practitioner initially described, and their explanations for this involve a combination of vague excuses, calling your child an unusual case, ordering more tests, implying it’s somehow your fault, suggestions for other things that’ll cost you a lot more money, and so on, that’s a huge red flag. Sometimes therapies do take a long time to work, but if they made exorbitant promises up front and it doesn’t pan out (which almost always happens), then you should really wonder. If you feel the slope getting slipperier and the goalposts moving around, be careful.
- You have to remember that kids naturally continue developing even if they have autism or other special needs. Kids almost never stay at their current age level forever. The important thing is whether the child is improving at a rate significantly better with the therapy than without it, which isn’t easy to figure out. Call it a red flag when a practitioner claims small gains as “It’s starting to work. We just need to give it a while longer,” which requires you to give them a lot of your money a while longer, and then you find yourself hearing this same excuse at regular intervals. If you think the results are far short of the promises, that tells you a lot.
- If at any time the practitioner takes the lack of progress or dismisses your concerns or facts that repudiate their work and blames them on any sort of conspiracy theory, get up and walk out. If people aren’t willing to operate within the realm of scientific bases of reality, they have no business working with our children. If there are always excuses, that’s a good excuse for you to go find someone else.
- I’d go as far as to say that after a certain amount, the size of the fee is inversely proportional to the likelihood that the therapy is useful or even valid. Therapies in general are not cheap. They can range from $50-200/hour (on the higher end when billed to insurance) easily. I know a lot of people who have paid $350-500 or more per hour or visit for therapies that shall remain nameless – and paid cash out of pocket because those places don’t take insurance – and have largely seen little or no improvement, or the improvement was at least far below what was promised.
- If you are thinking about leaving a therapist who you believe isn’t helping your child but are hesitant to leave for whatever reason, I’m giving you permission to walk away if you need that. Breaking up is hard to do. It’s OK to admit it’s not working out. Don’t throw more money at the problem in hopes it’ll go away. It’s OK to cut bait and go somewhere else. You’re not admitting defeat; you’re just admitting that particular approach isn’t working.
Perhaps you can boil all that down into a simple rule you’ve heard a million times before. “If it sounds too good to be true, it usually is.”
Progress requires time, effort, work, resources, and patience. You show up every day and you keep after it. That’s the best formula for everything we do.
There are no shortcuts.
I’m sorry if that’s not the answer some of you wanted to hear, but it’s the truth as well as I know it.
One of the hardest things we all have to make our peace with is that we’re likely going to be at this for a long time. Victories will be hard-won, and perhaps to some those will appear small, but they will fill you with joy. And our children will string one victory after another together and make miracles come true. That’s how we get there.
We got past that black curtain we saw of the diagnosis in what seems like an eon ago now, and now we see hope and goodness all over the place. But it’s still challenging and sometimes frustrating, and we have no shortage of anxiety and fear. Much of the time it’s tiring and it’s easy to get disheartened. There’s often nothing glamourous to it. It’s step-by-step, hour-by-hour work. But there are wonders out there to be discovered, often when you least expect them. There are joys out there you haven’t even imagined possible yet.
But there are no shortcuts. And anyone who says otherwise is usually trying to sell you something.
[Thanks to Danette Schott for including this on her August “Best of the Best” posts about therapy and special needs kids. Lots of great wisdom from some fantastic bloggers there, so go check it out!]