Friday, September 16, 2011

Treating Autism : The First Five Years

This summer and fall has been somewhat of a transition time for my family.  The twins, after a year delay, have finally left the early intervention system and are now in kindergarten.

It might be too early to call it, but it seems like the twins have made the transition from the one on one supports that they have been receiving for years to the public school system without too many problems.  They are still receiving special educations services and spend at least half of their time in a support classroom but they are also spending a great deal of time in the mainstream classroom as well.

Baby C, even though she two years younger than her sisters (OK, she really isn't a baby anymore), will be following her sisters into kindergarten next year.  I expect that Baby C will be able to make the same sort of graceful transition next year that her sisters did, although that is certainly not a given.  She is higher functioning but has more behaviors to contend with than her sisters do.  But that is a story for another time.

It has taken the twins and us five long years of work to get to this point and, while we had once hoped that they would be "recovered" from their autism by now, they certainly have come a very long way.  If you compared what they looked like and how they acted back them to what they do now you might not even think they are the same children.

Six years ago, the twins were normal babies.  They were developing at the typical speed and meeting all of their milestones at the appropriate time.  Or I should say that they were meeting all of the milestones at the appropriate times for twins, twins do develop differently than single babies.  We had no reason to think that anything was wrong.

About six months after that they started to change.  Their development stalled (for a lack of a better word) and they started slowly developing the symptoms of autism.  I talked about this period in their lives a few months back, so I am not going to rehash it now.

Five years ago when they received their autism diagnosis, they were very different than they were just six months earlier.

They did not look at people, they did not point, they did not understand or show emotion, nor did they respond to voices or any other sounds.  For a while there we (and several audiologists) though that they had gone deaf.  You could walk up behind them and scream at the top of your lungs and they would not show any sort of reaction whatsoever.  They certainly weren't responding to either verbal or non-verbal communication.  Nor could they talk or imitate any sort of sounds.

Interestingly enough, at this point they had very few rigidities or restricted interests.  They did a little bit of stimming but that much more than a "typical" child does.  Their rigidities and restricted interests didn't really become noticeable until a few years later.

They also had some health problems.  They both had almost constant runny noises and were sick quite frequently.  They had almost constant eczema.  They had an extremely limited diet and, not to be gross, their stools were not what they should be.

If you look at the twins now, they do make eye contact and can read emotions from people's faces.  They still can't talk very well (one to two words at a time) but their verbal and non-verbal communication skills have developed.  On a good day they are only a year or two behind where they should be in receptive communication.

They don't have the social skills that they should but they do interact with adults and children as best as they can.  Even better, they are showing an interest in other people and sometimes are trying to be social.  Over the summer, one of the twins walked up to a peer and said "Hi" to them completely independently.

To those of you who don't deal with moderate to severe autism that might seem like a trivial thing, but to those of us who do, something like that makes your entire week.  Not to go off on a tangent but I think that is one of the reasons that adult self-advocates drive me to distraction.  They are out there pontification about how autism is just a neurological different and not a disability and here we are (and many families like us)  just happy that our children made an attempt to talk to another child.  It is two completely different worlds.

But enough about that, the real point here is how we got from where we were five years ago to how we got here.

Over the past five years, we have gone from denial to hope for a quick cure to the understanding that helping a child deal with autism isn't a sprint to the finish line.  It is a long drawn out affair that will take dedication, years of work, and no small amount of luck.  And even after all of that, there is no guarantee that anything you do will make the slightest dent in the autism.

Over the past five years we have waged a constant war against obsessions and rigidities that had appeared and threatened our girl's ability to function on their own.  After we let one or two obsessions develop to the point that they became real problems in everyday life (anyone else have a child who refused to walk in public for a year straight?) we learned that we had to act quickly when the behaviors first appeared and stop them from becoming a problem.  You can't - and shouldn't - break all of the behaviors, but you certainly have to break the ones that interfere with their ability to function.

We also spent three long winters tackling extreme mood swings and self-injurious behaviors in one of the twins until we finally understood that she had something like seasonal depression and treated it as such.  All it took (and still takes) to "cure" these problems is a little while sitting in front of a really bright light in the morning and a small dose of melatonin in the evening.

But probably the most important thing that we did was accept the fact that "mainstream" (pediatric) medicine doesn't have a lot to offer children on the spectrum.  Don't get me wrong here, I am a very firm believer in following the science and actually having something substantial and real behind what you do (as you should be able to tell from the other posts here).

But, when it comes to autism, mainstream medicine tells you exactly two things.  First, it tells you that there is no possible relation between autism and vaccines.  Second, it says that some ambiguous thing called early intervention is the key to a better future.  But it certainly doesn't define exactly what this early intervention is or what forms of early intervention will work best for your children.

Five years ago, we walked out a well known children's development center with a shiny new diagnosis and a stack of papers with phone numbers.  The good people at the center were kind enough to inform us that our twins had autism and give us a stack of scripts for doing some standard tests.  They did not help us pick which specific therapies would be appropriate for our children nor did they even tell us which of the many providers on the stacks were any good.

Making these difficult choices was left completely up to us.  Even though neither my wife nor I knew the first thing about picking a style of behavioral therapy, occupational/physical therapy, or speech therapy, we were left completely on our own to find our own way.

Luckily for us (and even more luckily for the twins), we had an extensive support network that we could draw on to help us find our way through the process and select appropriate therapies for our children.  But even with that we have had some good experiences and some bad.

And that is as far as the mainstream took us - behavioral therapy (ABA), speech, and OT.  Although the OT has been less than helpful for most of the time and the speech wasn't much better for the first three years.

I have to say though that without the ABA the twins would not be entering kindergarten the way they are now.

But if we had left it at that they twins would not be were they are today either.  We took it a step further and found people who helped us deal with the other biological issues that twins had.  We have used treatments that some would label as quackery or woo.  Some of them of worked, some of them haven't, but there was a specific reason that we tried each and every one of them.

We have used three biomedical treatments that I believe have played a large role in allowing the twins to progress as far as they have - the gluten-free, casein-free diet, zinc supplements, and melatonin.  There are a slew of other things that they have taken and still take that help to a greater or lesser degree but those are the big three.  If you take one one of those three away, the twins would probably not be where they are today.

This is one area were the "science" based crowd drives me nuts.  They are out there saying that there is "no evidence" that these things work and therefore they don't work and you shouldn't try them.  While it is true that these treatment are not supported by large scale trials and don't have proof" that they are an effective treatment for autism, this lack of evidence does not mean that they can't or don't work.

Like so many other things when it comes to autism, the answer for whether something will work for your child is it depends.  It depends on the specific symptoms of autism that your child has and whatever biological problems they have going on.

If we had listened to the "science" people then our children would not be were they are today.  My opinion is that if you have a solid reason for trying something (and not just because so and so suggested it), understand the possible benefits as well as the risks, and are can try it safely, then don't limit yourself to what "mainstream" medicine thinks is true.  And don't listen to the "no evidence" crowd either.  Instead, spend some time learning about the subject, talk to some people who actually understand the subject, and make and informed decision about whether it is appropriate for your child.

Over the past five years we have also tried to accommodate the twin's sensory needs.  The idea that children with autism have broken sensory mechanisms is something that mainstream medicine is finally now beginning to wrap their heads around.  It will be another ten or fifteen years before there are any real options "evidence-based" sensory treatments.

In the meantime, parents will continue to try anything and everything to help their children regulate better.  For the twins, their big sensory need (right now) is to be immersed in water.  They love taking a bath every day and they absolutely love being able to go swimming everyday (just don't tell they we are going to have to close the pool in a few more weeks).  We only hit on this need for water last summer but the effect is rather amazing.  If you give them 30 minutes a day in water then they are more relaxed an are better able to concentrate.

Along the way to finding this need for water we tried the weighted vests, weighted blankets, lights, sounds, lack of light, lack of sound, deep pressure, etc, etc, etc.  Some of these things worked, some worked for a time, and some did absolutely nothing.

And of course, probably the most important element in the twins growth is their willingness to work.  If they were not willing to apply themselves them no amount of therapy, biomedical treatments, or sensory help would be able to do anything.

Looking back over the past five years, I think the thing that has made the most difference is the willingness to try new things and to adapt to the every changing challenges of autism.  While five years ago I might have wished for my children to be "typical" by now, I am very proud of all of the things they have been able to accomplish in spite of having the disability called autism.  I only hope that in another five years I can say that they are still making the same sort of progress.


  1. What a lovely post. I think you have such a thoughtful way of putting things, that is why I like your blog so much. Thank You.

  2. Hi MJ -

    Nice post. Our experiences have many similarities.

    - pD

  3. Nice post MJ
    We have been 8 years with biomed for my son. Our experience has been very difficult but it was the key for where he is now. My son was prognosed severe autism 8 years ago. Now he goes full day to school with an aide (partial time) and is considered HFA. The number of medical conditions we detected was huge.

  4. Lovely, thank you for sharing your story. I learn a lot from you and your experiences, which in some ways are very similar to my own with my 5 year old. I know it must be that much harder with twins; my sister has 3 year old twins and see how hard it is for her, even without any extra issues like this to have to deal with.

    My heart and best wishes go out to you and your family.

  5. Beautifully said and kindly shared. Thank you! My mom raised eight of us and my four brothers all landed somewhere on the spectrum of autism. My mom tried everything! I truly agree with your sentiment that it's the willingness to believe in your kids, to observe and make intentional choices that make all the difference. Only one of my brothers retains his label and remains dependent. My mom calls him her 'slow moving miracle'. My mom is now a global 'expert' teaching family dynamics, play therapy and neurofeedback (which is her personal favorite therapy for autism) but even she admits it's truly 'feedback' that does the job. Intentional feedback.

    It's because of a willingness to observe and try what makes sense for the individual child that two of my four boys are not on the spectum. Thank you so much for your lovely story and adorable family! (My sister has twin one year old girls... is there ever sleep??)

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