When I first took on the job of being therapy coordinator for my son, who has been diagnosed with Aspergers’, I knew the job was going to have its highs and its lows.  We were blessed with some real assets in this process.  Because we’d already spent several months battling his feeding disorder, we’d pretty much already done whatever grieving one could possibly do at the proposition of not having a “normal” child.  We were savvy enough about his problems not to play ostrich and stick our heads in the sand, praying he would “grow out of it.”  We knew that he was at a higher risk for spectrum disorders than most kids, so we didn’t dork around when it came time to seek a diagnosis.

So as I assumed my new duties as Therapy CoordinatorTM, I was pretty sure what Little Man needed, and had something of a network to tap into to get it.  Within about two weeks, I had the basic elements of a plan in place as to which therapies Little Man needed, providers for the therapy, and some initial appointments set up.

On the whole, that put me ahead of the game.  It’s not uncommon for it to take a lot longer for kids on the spectrum to get to that place, and it’s not always because of parents in denial.  It is true that many parents waste precious months hoping their child will improve and listening to pediatricians who play it safe by repeatedly encouraging parents to “wait another month” before testing.  But even where the parents are clueful and ready to go after the issue, they can still get hung up.  Testing is very expensive when done privately. When done publicly there are often long waiting lists, lots of forms to fill out, and a temptation on the part of the administrators to do as few tests as possible.  It can take a good bit of dedication, commitment and cold, hard cash just to get the right diagnosis.

And even when you have the diagnosis in hand, getting therapy for it is a whole other struggle entirely.  In more rural and less affluent areas, finding qualified doctors and therapists can be a challenge.  There may simply not be any within a close drive.  Most are expensive, so unless you’re eligible to have the state pay for your services, you’re forking out hundreds of dollars for appointments that very often must occur weekly if they are to offer any efficacy whatsoever, at least in the beginning. 

Of course, even if you can find a therapist that is close to you and doesn’t break your budget, that doesn’t mean that they are particularly skilled as a therapist.  And even the most qualified therapist might not be a proper fit with your child, either from a personality standpoint or from a clinical skills standpoint.  Different therapists will have different techniques they favor, and not all of them work on every kid.  The working relationship between a child and therapist is often a kind of alchemy – if the child connects well to the therapist they can make great strides quickly, but if the relationship for some reason isn’t working it can cause problems.  Often you can’t tell the fit is bad until after you’ve spent a few months and thousands of dollars. And then you have to start over.

Here in my corner of the world, we have an embarrassment of riches in terms of therapy options, all within a close drive.  And because I was not embarrassed to tell people what we were dealing with, my network of friends soon produced names and numbers of dozens of possible therapists, doctors, and other service providers.  No doubt, I have been more than blessed.

One of the pieces of the puzzle that parents often do not think to set in place when dealing with spectrum disorders is finding a good nutritionist.  Kids on the spectrum very often have feeding disorders, and in many instances with higher-functioning kids (mine being one), the feeding issues will manifest first.  The lack of sensory integration that can be part of the symptom package often makes kids unwilling to try foods of certain colors and textures.  And the lack of attention span can often distract kids so terribly that they don’t recognize hunger signals properly, meaning they don’t want to eat, or eat only a few bites and then stop.  A good nutritionist, one who has experience with the feeding issues for kids on the spectrum, can make a huge difference.

Even with the wealth of providers in our area, this was a tough get for me. When John first stopped eating when he was nine months old, we’d gone to nutritionists and had little success.  One woman in my support group actually had one nutritionist essentially lecture her about being a bad mother (she is one of the most wonderful mothers I know).  We’d pretty much given up on a nutritionist once we entered the county’s feeding program.  And once we finished the program, we decided not to find a new one. 

So when the speech therapist we met suggested a nutritionist, one who worked almost exclusively with kids with neurological disorders, I decided maybe it was time to check back in on his dietary issues and see if there was something new we needed to know, now that Little Man was officially diagnosed with a spectrum disorder.

My first meeting with Kelly was fantastic.  I knew right away that she “got it,” and that I would not have to explain to her what I’d been dealing with for the past two years. We’d tried many of the protocols already, and she realized that I wasn’t interested in rehashing them.  Instead, she suggested something new – a casein-free diet.

Caseins are proteins that are found in milk and soy products.  Like all proteins, the body first breaks the protein compounds into peptides.  These peptides are further broken down into amino acids, which the body uses for a variety of things, including building muscles. Studies that have been done in Europe have found elevated levels of these intermediate peptides in the urine of adults with autism-like symptoms.  The structure of these intermediate peptides bear a striking similarity to certain opiate-like compounds.  The working theory is that kids on the spectrum may have an inability to properly process these compounds, and the presence of the excess peptides in the body may cause or exacerbate symptoms of autism.  The theory is that a diet free of casein protein may, in some instances, provide some relief from some of the ancillary symptoms of autism.  Because a similar dynamic is also in play regarding processing of glutens (found in wheat products), kids on the spectrum are often recommended to try a gluten and casein free diet, referred to in some circles as the GFCF diet.

The GFCF diet is considered controversial among many in the medical community.  Because no one knows what causes autism and there is nothing that really “cures” it (no matter what actress-turned-activist Jenny McCarthy says), there is always lots of discussion whenever a new approach to spectrum disorders hits the scene.  Parents, medical professionals, therapists, educators and others in the community become well-versed in nearly everything that comes out.  They square off and choose sides, where they stand often being governed by predisposition and personal biases.  Sometimes those biases are rational, sometimes they aren’t.  Those who deal with autism on a day-to-day basis are naturally emotionally vested in these debates, so the discussions can get heated rather quickly.

So when the suggestion begins floating around that there’s a fancy new diet that might abate many of the symptoms of autism, the community is quick to form up their ranks and draw their battle lines, and GFCF has been no exception to this rule.  Many in the medical community are skeptical, as there as yet are no significant medical studies out there that demonstrate the diet is effective.  Moreover, the diet is very restrictive, involving the elimination not only of all dairy and soy products, but also wheat and other grain products. Mainstream doctors and many others worry that parents adopting a GFCF diet don’t include sufficient nutrients to replace the sources of vitamins, minerals, fats and proteins that are lost when you take out dairy, soy and glutens all at once.  It can also get expensive.  Casein free and gluten free products are often not readily available in a supermarket, and if they are, they are usually in the more expensive “organic” or “specialty” food sections at exorbitant prices.

But many who have tried the diet have reported extraordinary results. While most kids' cognitive abilities have shown little change, kids who try GFCF can experience a marked decrease in some of the spaced out behavior that accompanies autism.  Kids can become more engaged, with better speech processing skills and even better eating habits.  In some cases, symptoms of the spectrum disorder have appeared to abate completely.  The number of anecdotal stories has reached noticeable levels, to the point where the diet is receiving more and more attention every day.

Kelly is among the increasing number of practitioners who are adopting a moderated approach to the GFCF diet.  She believes that kids may actually only be affected by one or the other type of compound, and that you can usually tell by how they poop.  If they are consistently constipated, most likely the child needs to be dairy-free.  If the child is susceptible to diarrhea, then glutens are the likely culprit.  While there are tests that can determine whether a kid is sensitive to casein, the fastest and most effective way to answer the question is really to just take the child off the dairy and soy products for six weeks and see what happens. 

Little Man was a milk drink addict who probably got 90 percent of his calories from milk-based drinks like boost and pediasure.  He was also ridiculously constipated (This has made potty training a near impossibility, by the way).  He was an ideal candidate to try a casein-free diet since most of the casein in his diet could be eliminated by switching him off of his milk based drinks to something nutritionally equivalent that did not contain dairy or soy.  Kelly even had a recipe for a drink that was made with rice milk, coconut milk, and a powder with tons of nutrients and protein.  On paper, it sounded great.

One should always be wary of anything that sounds great on paper.

We had to special order the powder from the manufacturer.  It was pricey, and you had to use a lot of it.  It was gritty and tasted bad, even when mixed with the rice and coconut milk.  Little Man actually threw the straw cup back at us the first time we tried to give it to him.  And every subsequent time too.  He would take one or two sips, scowl, and hurl it back at us with a scream of dismay. “I want my MIIIIILLLLLK!” he would howl.  No amount of cajoling, bribing, pleading, or begging would coax Little Man to take more than a sip of the stuff.  And this was a child who, up until that point, would drink just about anything you put into a straw cup.  We were trying to phase in the drink slowly, offering it only once or twice a day as a substitute for his milk drinks until we had it fully integrated into his diet.  But he never took it.

Two weeks of this and I was approaching my wit’s end.  We could probably get him to drink rice milk without the powder mix, but it wasn’t nearly healthy enough, no matter how much calcium and B-6 vitamins they claimed to enrich it with.  And then, perched on the grocery shelf at the Wegman’s, next to the rice milk, I saw it:  hemp milk. 

Hemp milk?  Yes, Virginia, they now make a drink from industrial hemp seeds, just like they do from rice hulls and from almonds and from soy nuts.  The crazy thing is, this stuff has crazy amounts of calcium, omega 3 and omega 6 fatty acids, a reasonable amount of protein and amino acids, decent b-series vitamins and minerals, and a high enough calorie content to compete reasonably with pediasure.  On paper, it was a better milk substitute than rice milk from a nutrition standpoint, and was both casein and gluten free.  And it came in vanilla and chocolate flavors.  What did I have to lose?  The kid was already throwing things at me.  I picked up a carton of chocolate and a carton of vanilla.

He loved it.  We called Kelly and got her approval to discontinue the powdered milk nightmare and try the hemp milk for a few weeks so that we could establish Little Man as fully casein free and see what happened.

After three days, he started to increase his food intake, nearly doubling his volume.  This alone was cause for celebration, but two days later we got another surprise – he actually ate a ravioli!  And not just one, but three at one sitting!  Now, for those of you who may not understand why three ravioli is cause for a parade, know that we had been trying to get Little Man to show any interest in this ravioli for about six months with no luck whatsoever.  The three ravioli the first day turned into another ravioli the following day.

Over the next four weeks, Little Man’s energy level went up.  His constantly runny nose dried up. He started to become more interactive in conversation, and began demonstrating more original speech patterns, as opposed to merely using repeated of phrases he heard elsewhere as a substitute for conversation.  At this point, nothing had really changed in his life but the substitution of hemp milk for dairy products.

I learned from my life in competitive sailing that when you are working your sail trim, you should never be too eager to change things, and when you do you should do so one thing at a time.  Because honestly, you need to allow time to watch the boat’s reaction to the change to see if what you’ve done has actually helped.   If you tweak a line, wait a minute, and see what happens to the boatspeed.  Up or down?  If it goes up, tweak something else.  If not, then undo what you just did. Obtaining maximum boatspeed is not a matter of setting a trim and forgetting it.  It is a constant process of tweaking, waiting, and then tweaking again.  A little tweak here, a little tweak there.

Dealing with a neurologically complex disorder like autism is no different.  In order to really tell if a therapy or a treatment or a dietary change is working, you have to phase it in at the right time.  If you make a bunch of changes all at once, you can’t really tell where any subsequent improvements are coming from.  Because of how we phased in his casein-free diet, we’re pretty sure that the improvements we’re seeing are related to it.

We’re not crazy people here.  I don’t believe the GFCF diet is some kind of magic bullet. We know it’s not a cure.  And the infuriating thing about spectrum disorders is that what works for one kid isn’t going to work for another.  There is no miracle happening here, and it would be irresponsible of me to claim that there was. But he did improve. And we’ll keep tweaking a little here, a little more there, until Little Man has reached his full potential.  You can add my son to the stack of anecdotes about kids who have done the casein free diet and seen significant results.  Whatever else it may mean for the efficacy of GFCF diets, who can say?  My kid is doing better.

Sometimes, living on the spectrum, you take what you can get.