Friday, February 17, 2012

Autism Recovery : A Two Step Process

At the risk of stating the obvious, helping a child recover from autism can be quite the journey.  It sometimes seems that for every one step you take forward you have to first take two steps back, one to the left, one to the right, jump on one foot while spinning in a circle, and then take that the one step forward.  The whole process can be quite maddening.

I think the reason the process is so frustrating is that we don't understand what autism is and what biological form it takes in the body.  We don't really know why a given therapy works when it works nor do we know why it doesn't work when it doesn't.  There all sorts of theories about why something might or might not work, but when it comes down to it, there is little, if any, hard data about any autism treatment that can be used to pick the appropriate therapies for a specific child.

Or in other words, treating autism is a lot like playing pin the tail on the donkey, except you can't be sure that you are actually holding the tail and the donkey might be located on a different continent.

I have been constantly reminded of this simple, yet maddening facet of autism over the past couple of weeks.  You see, twin A has been having something of a developmental spurt over the past several weeks.  She has started spontaneously doing things that neither her nor her twin have ever done before.  We have seen protodeclarative pointing, spontaneous sharing of interests, and spontaneous comments about the surroundings (i.e. a TACT).

But perhaps best of all, she spontaneously used those three little words that every parent is dying to hear from their child.  She walked up to my wife, gave her a hug, and said "I love you".

So while I don't want to appear unmoved or ungrateful for the progress, the question remains.  Why is twin A making this progress now when she hasn't been able to do any of these things in the past?  And why hasn't her identical twin started doing the same things yet?

I think I know the answer but let's first dispense with the typical explanation. The typical rationale that is trotted out to explain spontaneous improvements like these is that they are just part of the normal maturation process.  As children with autism get older, they will eventually acquire the skills that did not develop properly when they were younger.

But, while this might happen in some children with autism and has happened with my children in some of their skill areas, it has never happened before involving their ability to use language.  Their lack of ability to use language makes up what could be considered the core of their autism and they have never made spontaneous progress in the use of language.  Ever.

It literally took them years of hard work before they could understand any spoken language.  And it took even more years of hard work before they could talk at all.  And then even more years more before they could use more than one word at a time.  Even today, they still have an extremely hard time when they try to talk and an even harder time when they try to use more than one word at once.  They have had some success with alternative communication methods but they are extremely limited even with these alternative methods.

Or, to put it bluntly, the idea that the core disability of their autism suddenly and rapidly started disappearing because of some magical maturation process just doesn't hold water.

So, are you ready to hear my theory about why twin A has made this progress?

The answer is simple, we started her on a new supplement that is supposed to be an antioxidant, anti-inflammatory, anti-fungal, and pro- very yellow pee.  This magical powder can also cure cancer, turn the moon into yellow cheese, and make everything you touch turn into gold.  Or maybe that last bit was supposed to be: make a lot of money for the company that sells the supplement.

But seriously, I am actually crediting twin A's recent progress to an over the counter supplement.  Now you might ask how I can do this with a straight face and without any double blind (or really any) studies to prove that my claims are true.  After all, parents are supposedly very easy to confuse and are willing to accept any possible correlation as causal simply because the two things happen at the same time.

Well, I have my reasons and here they are:

First, while we have tried many things in the past with little or no effect, we have also tried a few things that have made a large difference as well.  The most notable examples here for the twins are the GFCF diet and zinc supplements.

Second, identical twins - or at least our identical twins - tend to stay very close when it comes to abilities or lack of abilities.  They do get a little ahead of each other at times but the other one almost always starts to catch up within a month or so.

It was well over a month and twin B did not start showing any of the same progress.  That is until we started her on the same supplement.  She has not yet caught up to her sister and the distance is still growing but she has also started showing similar progress after we started the supplement.

Third, for the past three years, twin A has lagged her sister during the winter months.  She has historically struggled with some sort of seasonal depression.  Now maybe our steps to mitigate the seasonal depression caused some of the progress but that is a topic for another time.  The short answer is that nothing that we did for that should cause an increase in language.

Fourth, in case you can't tell from other things I have written, I am something of a skeptic when it comes to the science and treatment of autism.  I don't accept anything without some sort of proof or evidence supporting it.

But, in this case, this new supplement was the only thing that has changed in the past six months and we aren't the only ones noticing the changes in twin A.  Several different therapists as well as her teachers in school have independently commented on her recent progress.  So we aren't imagining the progress.

So, after reading the above, you might be wondering if I have finally lost it and whether I am really suggesting that a simple powder that you buy over the counter can magically make minimally verbal children start talking.

Well, the short answer to that question is both a no and a yes.

There is no magical powder that can teach a non-verbal child to talk.  You can't package up the knowledge of the English language into some powder and spoon it into a child.

But, and this is really the entire point of this post, recovering from autism is never going to be a single step process because recovering from autism involves more than just treating behaviors.  Recovering from autism is about mitigating behaviors but it is also about attempting to treat the underlying biological problems that lead to the behaviors.

You cannot effectively treat the behaviors of autism without also attempting to address the underlying causes.  Or maybe I should say that differently because you can make some progress without going after the underlying cause.  How about this: treatments for autism are going to be the most effective when you can target both the underlying cause in addition to the visible behavior.

So while I don't really believe that some new magical supplement gave twin A the ability to communicate better, I do believe that the supplement managed to partially correct one or more of her biological imbalances that are caused by or related to her autism.

Beyond that, she is simply expressing abilities that she has learned over the years of therapy or maybe showing off new abilities that she has been able to learn recently because she is no longer blocked from learning them.

But whatever the source of her improvement, we will take it.


  1. Whatever the cause, it's fantastic to hear about the improvement. I hope it continues.

    We tried many different diet changes and supplements with our son, none making a noticeable difference. (We now keep him on a child's multivitamin tablet just to try to address any underlying deficiencies in his diet.) But I know autism can have many different causes, and no doubt in many cases, multiple causes or contributors in a single person. Sounds like you might have hit upon one of those contributors for your twins.

  2. We were told "some autistic children are like that" from the Dev Ped and the Dr when we complained about the elder's viscious bum rashes and daily diahhrea.

    Had he been "normal" they would have started pulling foods. We're had just finished reading Karyn Seroussi's book and took away the dairy. 7 days later and a tiny bit of butter and a hideous 24 period... needless to say between the ages of 2.5 and 10 neither boy had any dairy products. Took us a year to wean them back on and they still drink soy milk.

    Turns out the 12 yr old (mild) was the one with the intolerance. It did nothing for the severe one who's now 10.

    You have to try everything as long as it doesn't do harm IMO. I'm not convinced the Ped we started to see 6mths later believed me or not but his comment was "something was wrong". When he had a student in who tried to tell me removing casien didn't cure autism, his comment to the student was "we don't know everything about autism and we need to listen to the parents". Would he have prescribed the treatment... I'll never know he's since retired... but he monitored it.

    We made a move to Risperal (6 to 8.5yrs - it rebounded) which dealt with the aggressiveness - didn't go away we had to teach it, mood swings and lack of focus. Only we and the school knew he was on meds. People were shocked when they found out since he wasn't "drugged" it just took the edge off so he could learn.

    Now I have a "passing for normal", really annoying (ADHD kind of issues that are out of control - Ped appt Feb 28 can't come soon enough - return to meds time - Psych thought we'd be lucky to go without 4 weeks, we've made 4yrs) 12yr old.

    At 2.5 yrs he was stoned (he'd fall and never put his hands out and other strange behaviours that vanished the moment we got rid of the dairy), his stomach was upset all the time... You can't learn if you don't feel well.

    Hopefully, whatever was bothering your twins, the meds have them feeling better and they can learn easier.

  3. Thanks for the post.

    There are a lot of issues which you have covered in the post which provide a refreshing insight.

    Primary among them are the facts that (a) the domains of scientific method, skepticism, and logically inquiry are not just for 'professionals' (whatever that word is taken to mean), (b) quite a bit of data can be obtained from the n=1 (or n=2 or even n=3) (with autism in mind, this is perhaps something that should be borne in mind a little more) and (c) correlation and causation are not the same thing, but correlation, in the right context, can be an interesting 'signpost' to a possible relationship or not.

    Hope things continue to go well.

  4. Glad your daughter is improving, but you have to be cautious about determining causation. I was nearly completely nonverbal at age 3 and then underwent psychoanalysis where castration anxiety was stated to be in large part responsible for the etiology of my problems. Before age 5, I recovered my speech and my analyst took full credit for that recovery. Very few preach psychoanalysis as a legitimate intervention nowadays.

  5. Congrats on those three little words. May they both be bombarding you with them soon. Our son made miraculous progress on omega-3 and SCD, but still suffered from poor energy in the winter. Summer was our two steps forward and winter was our one step back. This summer we went to a DAN and did several tests (kinda pricey though) and a few supplements added, big imprvement this winter and jump in social skills. Two of the tests were for very basic nutrients, vitamin D and iodine. It floors me that nutritional testing isn't normal mainstream protocol for any chronic health issue, phycological or not. It's amazing how much damage low nutrient levels can do, but without testing you won't know if the defficiencies are there and what to even supplement with. I don't think it will completely cure in most cases, we still don't know what is really going on, but defficiencies can exasperate and add additional unwanted symptoms. I think medicine has neutered itself by not taking this more seriously.

  6. Hi MJ -

    Very nice. I think a big sticking point in a lot of these discussions is the inability to acknolwedge the difference between 'recovery' and 'helping'. Clearly there are lots of little things different (wrong?) in the autism biochemical suite.

    If you throw four thousand genomes at a sequencer and come away with seven hits, this is evidence of the complicated nature of the autism genetic recipe. When someone addresses identified deficiencies via supplementation and observes behavioral changes in their child, it isn't evidence of anything except parental biases. Dumb as rocks, but it is the way of our world.

    - pD

  7. dont know if anyone has come accross this GAPs diet, but the dr. who wrote it used that protocol to hep her son when he was diagnosed with autism an told there was nothing to be done.

  8. What was the supplement?

  9. I was wondering if someone was going to ask that. The supplement was a refined form of curcumin.

    But, just as a word of caution, you should not rush out and try this simply because we (or anybody else) had a good experience with it. You should always look at the specific child and have some reason to think that it is going to help.

  10. Just wanted to say hello. I have identical twins with autism. They are 2. One is more severe than the other. It is the beginning of a wild ride.


    1. Hi Tracey,

      You are certainly right, identicals with autism are certainly a wild ride. Dealing with twins or a child with autism alone is challenging but when you combine the two you get to a whole new level of fun.

      My twins are girls and are roughly the same severity but, even still, if you had some question about the twin/autism thing I would be glad to help. There aren't too many other parents of identicals with autism out there.

      Good luck.