Dr. James Coplan posted a quick introduction to the history of autism treatment, excluding the horrific past treatments of isolation, incarceration, and forced confinement.  Instead, he’s focusing on the history of the current treatment, or the roots of what we now know as ABA, or various other proven treatments for Autism. 

With psychologists and psychiatrists being so common and almost cliche in our culture, it’s odd to think that the study of the mind beyond philosophy was never taken seriously, even 150 years ago.  Instead you had mentalists like Franz Mesmer who invented hypnotism (and from whence we get the word mesmerized) who were performers, not scientists (or at least not what we would imagine to be scientists).  It wasn’t until the turn of the century when you get Freud, Catteil and Binet, Spearman and Pearson, and others who start to take the study of the mind into the realms of scientific study, testing, and observation.

As the new science we know as psychology starts to develop, we see two branches emerge:  Behavioral Psychology and Holistic Psychology.  Behavioral psychology focuses on addressing the behavior, and from that steps the Applied Behavior Analysis therapy.  Behavioral Psychology was pioneered by E. L. Watson and J. B. Thorndike, who trained B. F. Skinner, who in turn trained the late Ivar Lovaas, the father of ABA. 

Holistic psychology focuses on more than just behavior, but rather intention, consciousness, emotion, etc. as part of the whole subject of psychologists, and therefore should be placed on the same level as behavior.  The idea being that if you break down the brain and brain experience into it’s parts, you are missing out on the whole.  It was pioneered by Professor William James.

All this is covered in Dr. Coplan’s article, but I find I fascinating to learn about the history of treatment, and where it is heading.  I’m looking forward to more posts, and in the mean time continue to search for digital copies of the works of Watson, Thorndike, and James for additional reading. 

This week has had two great announcements:  a new Autism diagnosis procedure that will diagnose after a 15 minute brain scan, and a new therapy being developed right now in Pittsburgh. 

First, the diagnosis.  Currently there are several attempts to diagnose autism with a genetic test, and the best accuracy that can be met (to date) is about 9%.  Why?  Because there are so many different genes that can cause autism, it’s difficult to identify a particular genetic marker and say "That’s autism right there".  Other tests attempt to check for biological changes based on conditions that accompany autism, like intestinal disorders. 

The new thing here is that the Institute of Psychiatry at King’s College in London is actually mapping cerebral changes, and the test is only 15 minutes.  Compare that with several hours of evaluation by psychologists, and it becomes extremely cost effective.  And what does that mean?  Perhaps insurance companies will FINALLY identify autism as a diagnosis, and cover said diagnosis. 

The other good news about this test is that it has been found to be 90% accurate in it’s diagnosis, which beats 9% clear out of the water.  And for those who are diagnosed, they know it’s because of an actual, physical cause, not some form of parental neglect or parental abuse that is causing the condition.  For everyone in the Autism community, this should give them a huge sigh of relief. 

But what happens after the diagnosis?  Sure, it’s great to know, and it’s great to understand that it’s physical instead of something the parents have done, but what now?  Autism doesn’t go away, and there is no magic pill that will "make it all better".  Autistic children need to be taught in any way they can.  And one such way is currently being developed at Interbots, Inc, a spin-off from Carnegie Mellon University Technology Center.  Yesterday they issued a press release on their project in "Character Therapy", or using robots to help children with autism learn to interact. 

The program is very much cutting edge, both in technology and in autism therapy.  It’s based on the premise that children with autism prefer interaction with non-human entities, be it animals or robots.  Why?  Because both animals and robots have far less social and emotional baggage to carry around, and therefore an autistic child doesn’t have to worry about offending (as we humans tend to be easily offended). 

A good example of this working is the Crush experience at Disneyland’s California Adventures in Anaheim, California.  Parents with autistic children, even with low functioning autism, find the children speaking and repeating either sounds or words after having the experience with Crush.  It’s a fascinating phenomenon, and I’m looking forward to experiencing it with my son.

So, for the first time in a long time, I find myself wishing I were either in London to work with the psychologists and psychiatrists at King’s College, or in Pittsburgh.  The idea of working with such excellent programs, providing feedback, and contributing so such revolutionary ideas is very compelling.  I can’t wait to see these two projects come to fruition. 

There have been an alarming number of murder-suicides being reported in the media, and they are centered around parents that have either killed their child, or killed their children and themselves because their child(ren) has autism.  It’s heart-wrenching to hear about, devastating to all to know that someone would fear Autism so much, either from the results or responsibility that come with having an autistic child, that they would resort to taking a life (be it their childs, their own, or both). 

I’m not going to comment on the mindset of these parents, the psychology that would drive them to such extreme, final measures, because I don’t know them.  All I know is what the media reports, and they tend to focus more on the sensationalist shock value than the actual facts behind it.  But needless to say, there is a fear, an unmitigated terror, of Autism. 

Why so much fear?  Because it’s unknown, and unpredictable.  Parents do not know in what form Autism is going to take in their child.  For instance, when my son was growing up, he loved being indoors, and never once tried to walk outside.  I thought life was going to be easy with him, until he started going outside.  Now he roams the neighborhood if left unchecked, and has several likely haunts, making it difficult to find him.  It’s frightening, because we live by a pretty busy street, and too many people speed down our little isolated neighborhood road.  This desire to roam about outside caught us completely by surprise. 

There is also a related guilt that comes with having a child who is autistic.  An autistic child tends to behave inappropriately, often in very public places.  Society tends to be less than understanding when such an event occurs, and judgment is immediately rendered on the poor parent who is trying their best to manage their autistic child in the middle of an autistic episode.

There is a lot of pressure on the family in general, as siblings see themselves as not getting as much attention as the autistic child, and extended family often questioning the parental methods of raising the autistic child.  This is probably the most damaging to the parents of the autistic child, as they are generally working with the best knowledge they have from sources that are close to the matter (behavioral psychologists, special education teachers, etc.).  The last thing they need is a member of the family suggesting they are not disciplining their child properly, or they are being too lenient with them. 

So what’s the answer with all the pressure of having an autistic child?  Sit back, watch them, and get engaged with your child.  He or she is your child, and they often know what they need.  If they like one particular food, go for it!  If they like being hugged constantly, all the better!  If they need time outside, let them go, and keep the activity carefully managed. 

The key, at least in what we have found with our son (anecdotal evidence here, take with a grain of salt), is to just set boundaries, and keep him within those boundaries.  If other people don’t agree with the boundaries, that’s their problem.  They often have their own kids and their own issues, which they should attend to and not try to "fix" others.  In using this method, our son tends to be very well behaved, and often his meltdowns can be easily diffused with a little effort. 

I can’t tell you that I have all the answers, because every autistic child is different.  They may be high functioning, like my son, may have Aspergers and can speak their concerns, or may have low-functioning autism and therefore have more severe issues.  But you as a parent have the benefit of one thing:  constant observation.  You know your child better than anyone else. 

The best advice I can offer is grow a thick skin when it comes to other people judging you and your autistic child.  There is no other way around it.  People with disabilities have been ridiculed for centuries, those who are different have been hated, feared, and burned at the stake for centuries.  That’s a lot of social momentum to fight to learn "acceptance" without knowing someone personally. 

Perhaps one day Autism will no longer be feared, and people will stop acting as a qualified psychologist without having any of the facts.  Until that day it’s up to us, as parents, to find a way to provide as safe an environment for our children as possible.

I’ve been on vacation this whole week, and had the kids with me for that time. As it’s been just me, I haven’t had a lot of time to work on posting. There are a lot of news to cover, and some treatments that have been little known or addressed.

First the news

Autistic children do tend to be picky eaters. Several have suggested it’s because of G. I. that children with autism commonly have. Others suggest it has to do with textures issues and sensory overload. Whatever the issue, children with autism have their favorite foods and will stick with those foods, avoiding many new foods. The lack of a diverse diet has been a cause of concern for the nutritional health of the children. Well, recent news is that autistic children with a very limited diet do not suffer from malnutrition. A very comforting bit of news for those of us who watch our kids eat nothing but cottage cheese and watermelon (and some other things too).

Treatment

I’ve been reading about this treatment for a while, and just now have the time to post about it. It’s called the Listening Program. It works off the research that identifies certain frequencies that then effect different areas of the brain. Essentially, a set of frequencies are played, and as children listen to them it stimulates growth in these neural areas.

At first it sounds a bit far fetched, but keep in mind that we are talking about the nervous system, and auditory stimulation is a direct link to the brain. And, as I have posted in past articles, autism is an increase in either the density of number of neurons in the brain, so it is entirely possible, and has been proven in clinical studies, that auditory stimulation can retrain these errand neurons to stop randomly firing and improve overall sensory processing.

The process is interesting, while also expensive. It requires high quality headphones, and either a high quality CD player or a special compressed audio format to keep the full range of frequencies available. If you opt to purchase them yourself, the CDs will run you at least $700.00 (if I remember right). If your insurance will cover the purchase, and you have a qualified technician to work with you, it may bring about a positive change in your child. I’ll be keeping my eyes out for this, just to see which autistic children are the best candidates for this type of therapy.

Lately, with all the controversial material I have been reading (politics, law, autism, the World Cup, ice cream flavors..), I’ve started to think about bias.  Not so much about the bias of reporting, but more on the bias of those receiving the news.  It seems to be rampant, because there are so many methods of filtering out the news that was not there before. 

For instance, when a recent report about the Jobs market showing more jobs lost for the past month, but with an overall unemployment rate going down from 9.7% to 9.5%.  Politically, this was seen as a win for the Administration as they can point to the unemployment rate as a sign that their policies are working, while the opposition point to the increased job losses as a sign that the policies are not working. 

Now, set aside your own biases here, because I’m not defending or justifying either decision, but rather I want to point out that the numbers did not change for either group of observers, but rather they chose to interpret it differently.  The Administration wants to show some kind of progress in this very sensitive issue to justify their policies. The opposition want to see a win for their side in the next election, and therefore would benefit with the perception that the current Administration and ruling party are not doing what needs to be done.  There, they each show their bias in their interpretation of the numbers. 

But it doesn’t stop there.  Because of our perceived need for "balanced" reporting, there are now news outlets, bloggers, and others that manage to broadcast their own biases out there, and in greater numbers than before.  Add in the fact that excellent tools like Google, Yahoo, Bing, and other news aggregate sites have the ability to filter from whom we get our news based on our own biases, we are able to keep to our own ideology and therefore reinforce our own biases with similar biases.  Hence we have conservatives that read, listen and watch the news from "conservative" news organizations and talk shows, while liberals do the same with liberal news organizations and talk shows. 

So, is there a problem with it?  Well, strictly speaking, as Socrates, Plato, and Aristotle would I’m sure submit, if you don’t have alternative view points, you are unable to reach a reasoned decision.  Therefore decisions are made without being thought through, often without obvious flaws being discovered, and therefore huge problems can arise.  Frankly, we make mistakes enough without needing to invite them by not having a reasoned discussion with open minds. 

And then there is the problem of isolation.  While I lived in Germany, there was an awesome, sobering poster in the hall of the (if I remember right) Frankfurt-Hoechst government building.  It said "Germany for Germans, Hessen for Hesseners, Hoechst for Hoechsters, Me for Me" (rough translation).  The picture was, again if I remember right, one of increasing isolation and loneliness, and I got the impression that the poster was to illustrate how being an "isolationist" can ultimately be detrimental.

The idea is that as we start to isolate ourselves, we begin to see the "fox hole" we are in instead of the big picture.  In politics, we see only what our "party" sees.  In Autism, we see only what we want to see (vaccines vs. genetics).  In sports, we see only our team and no one else’s team.  And because we isolate ourselves in this manner, we find it easy to dehumanize others.  Once someone is dehumanized, it’s easy to disrespect them, which can further escalate to feeling indifferent or even violent against the opposition (which ever it is). 

So what can we do?  Try to see both sides of the issue.  Here the arguments on both sides, understand them, and then make decisions based on those arguments.  Sure, you will still be deciding with your own bias, but at least you have given the other side a chance to explain their positions, and calmly discuss the benefits and detriments that come with each position. 

Perhaps if this type of civil discourse were encouraged more in popular media, we will see it bleed into the general populace. 

Normally I have posts about research, tools, or games for Autism, but today I thought I would talk about what it’s like to be a parent with an Autistic child.  There are probably many parents out there with the same story, and I’m sure many of you parents of neurotypical children can relate to a certain extent. 

Why?  Because first and foremost an autistic child is a child.  And like all other children, your autistic child will have wants, needs, discipline, rewards, and so on.  The only difference is with some autistic children they can’t speak, or they can’t sit still, or continue to do harm to themselves. And they often take longer to learn from verbal commands than neurotypical children. 

But, even between autistic families, autism can be very, very different in its symptoms and manifestations.  Let me share a couple of my experiences with my son. 

My son loves the outdoors for a number of reasons.  One, he likes to turn water on and off, and play in water.  This isn’t so bad in the summer time, unless there is talk of water restrictions.  The problem is, you can’t just tell him to stop, because he doesn’t listen.  He is too focused.  I can yell until I’m blue in the face, but it doesn’t do any good.  So, we turn the water off for him, and usually take him inside. 

Another thing about the outdoors he likes is being able to play in the dirt.  He loves the feel of sand and soil, either dry or muddy (lately it’s been muddy).  He also likes the feel of it in his mouth, so he consistently will eat sand, dirt, and place rocks in his mouth.  This brings up all sorts of potential problems, as eating dirt is a good way to introduce e. coli into the system.  Therefore we are constantly on guard with this habit.

Another outdoors thing he likes to do is run across the street to the neighbors back yard, whether anyone is there or not.  He does not look for oncoming cars, and lately there have been quite a few teenagers and 20-somethings come speeding down that street.  It’s not open to anything but our little neighborhood, but eventually will be open to a new development to the East of us.  This has me scared.  It also has me scared that he will just walk into someone else’s yard without asking.  We are working on that currently, and it’s helpful to know that our neighbors are aware of the situation and are tolerant.

So that’s the Outdoors.  In order to deal with these issues, we have taken to adding chains to the doors (which only hamper him for a few minutes until he gets a chair), and we have the back yard fenced in with a fence soon coming for the front yard.  It doesn’t have to be a big fence, just big enough to deter him (about 4 feet tall should be fine).  These have worked in keeping him in the back yard to date. 

For the water, we remove the valve handles, so he cannot turn them on or off.  This also lowers the amount of mud in the back yard (except in the garden, where he has a path through the corn already).  But we also limit the amount of time outside, so there is less of a chance of him getting a large, active colony of e. coli into his stomach. 

Another issue is his learning.  This is something that even my own family has taken a criticizing view of, as they feel we are not working enough with our son.  The thing is, we spend many hours working with him either directly or supervising his use of a number of learning programs on the computer or on his iPod.  His time is spent learning to spell, learn letters and numbers, and learning to count items (not just read numbers).  He is exceptionally bright, and often is self motivating in a number of these areas.

For personal time, he will often bring a book and will "teach" me the letters he sees.  He will point at the letter using my finger, and then have me read it.  What’s really cool is I can’t trip him up by saying the wrong letter.  That’s what really has me excited.  That, and I have already started to teach him to count in German, and he knows the difference based on whether I say "one" or "eins".  He then proceeds to say the numbers in either English or German in his slurred manner (he can do vowel sounds really well, though his consonants are not too defined). 

For his own work, he will pull the iPod out and go through various apps we have downloaded (either free or paid), and play with them.  Some are games, some are stories, some are just matching tools.  All of them are learning tools, which has helped him learn to spell, read, and identify colors.  The only thing that concerns me is often he will switch the languages on these apps to Chinese, which I don’t know. 

My son also does a lot of playing, and loves to wrestle.  He has actually developed some great social skills this way, and loves to tickle.  We found that out when he tried to tickle a little girl while we were waiting at a restaurant.  That was quite the embarrassing experience, though her parents thought it was cute.  He also will head-butt or dig his chin into someone when he gets too excited.  This is a problem, and one we are working slowly to correct.

Since he stopped school in the fall, he seems to be regressing in a number of areas.  I imagine a lot of parents see this in their children, though I don’t really know how that works with neurotypical children myself.  He does tend to be less vocal during the summer, and more likely to have accidents.  Though, unlike before, if we ask him if he needs to use the toilet, he will then go and do it.  That’s an improvement, and something we are proud of.

So, I hope this little snapshot of our life with our son helps outline the scares and cares that come with an autistic child.  He is very loving, smiles all the time, and has a great sense of humor, he just doesn’t talk.  His actions and moods swing from a 2-yr old to a 15-yr old in an instant, though he is generally in a good, happy mood.  For that, we are grateful.  We love him to bits, and I look forward to seeing his improvement as we continue to work with him.

This morning, as read through the daily news, I came across a blog on the Psychology Today website:  Making Sense of Autistic Spectrum Disorders by Dr. James Coplan, MD.  He is a pediatrician with a specialty in developmental disabilities.  He doesn’t have any ties to vaccine companies, doesn’t have a treatment he’s pushing, he just studies and educates parents that visit him on the developmental disabilities their children are experiencing.

I’m often wary when I read autism blogs.  Many are written by people trying to push a specific agenda, such as gluten-free diets, poisoning children with industrial chelation drugs, and other such quackery.  But with this particular blog, both written by an expert in the field and backed up by actual research spanning 40 years, I found something that could be trusted.

His first post (and I highly recommend reading them in order) explains his background and the importance of consulting a professional.  Please don’t take any blog entry as medical advice (and that goes for my blog as well), since only a physician can properly diagnose and treat any sickness or disorder.

The second post explains Autism.  This was brilliant, and sold me on the blog completely.  Here Dr. Coplan explains autism, not as a linear list of symptoms, but interrelated symptoms and levels of IQ.  Both are responsible for autism symptoms, and the ability to work past the symptoms.  The second post explained the relationship between atypicality and intelligence, and how diagnoses are assigned based on the spread on the graph. 

In subsequent posts Dr. Coplan explains the relationship of time in the diagnosis, and why there really isn’t an Autism epidemic.  That one I was a little concerned about, until he explained the ever widening diagnosis of Autism, the increased number of disorders that are being added to the Autism Spectrum, and finally the lack of any real tracking ability from the past beyond the search for services. 

This blog is an absolute must read for anyone with a family member with Autism, or for those who interact with children or adults with Autism.  It is now one of my favorite blogs, and has been added to my Google reader. 

The Chicago Tribune is running a follow up story on the status of OSR#1, a drug that was peddled as a "cure" for Autism and a dietary supplement.  It seems the FDA has looked into the "supplement", and found that it contains no dietary benefits, and instead is a powerful chelator, binding to heavy metals to remove from the system.  That, in and of itself is dangerous, if chelation is not necessary, as the body requires heavy metals to survive. 

When the Tribune investigated this drug last year, they specifically asked the company developing this substance, CTI Science Inc., for the research they claimed had proven the safety and efficacy of the product.  The company stopped returning phone calls at that point. 

But now the FDA has had a look at the research (on lab rats), and found that there were some side effects recorded:  soiling of the anogenital area, alopecia (hair loss) on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas" and a rapid increase in normal cells contained in the lymph nodes. 

Ellen Silbergeld of Johns Hopkins University has warned against the substance, and Pharmacologist Dr. Arthur Grollman identified the substance as a powerful chelator that can be toxic if only normal amounts of heavy metals are found in the body.

The FDA has denied the labeling of this substance as a "dietary supplement" because it does not bear or contain a dietary ingredient.  Therefore it is, in fact, a new drug, which requires proof of safety and efficacy through clinical trials.  This process is very lengthy and expensive, as noted by Richard Mailman of Penn State University, and is that way for a reason.  It needs to be proven safe, and reputable drug companies take the time and pains to make sure that is the case.  It seems that CTI Science Inc. has failed to meet these standards.

I’m not going to judge the efficacy of OSR#1, but without any proven safety research and the long list of possible side effects, I would say that it would be irresponsible for any parent to give such a substance to their children. 

And to Mr. Boyd Haley, the creator of this snake oil, I say "Shame on you". 

Businessweek has posted an article on the fight against Autism going High Tech, meaning that technology is becoming the avenue autistic people are using to overcome their social isolation brought on by the disorder.  Mentioned there are a number of different devices that are becoming more mainstream:  iPods and apps for Autism (229 and counting), robots instead of people for reliable, comfortable communication, and other tools each provide an autistic child with an opportunity to work through their disability and interact with others. 

I’ve posted several reviews on apps on the iPod/iPad that help autistic children learn, and each my son has enjoyed.  I still maintain that Apple’s true potential in their popular multitouch platform has yet to be tapped or even advertised, and that is it’s ability to enable those who are disabled.  But this is more than finding a technological solution to a problem, it’s about finding how autistic children interact, and catering to that method.

For instance, aside from robots that have preset interaction ideas, dogs can provide a save interaction variable for autistic children.  That’s because dogs are perhaps more straightforward in their responses, and remain very honest and predictable in how they will interact with children.  That is, in general at least.  There are some exceptions to that rule, but by and large dogs provide a predictable interaction experience for autistic children. 

But what about vacations?  Many parents with autistic children tend to shy away from vacations in general, and particularly large resorts with lots of people.  I’ve had several parents post comments about how they would love to have their children go to Disneyland or Walt Disney World, but fear the reaction with so many people in such a close space. 

Remember that Disney has a policy:  Every guest is to have a good experience.  As such they have a special pass for those who are unable to wait in long lines for extended periods of time.  Those parents with an autistic child can get one of these passes for up to 5 people plus the special needs individual (if I remember right, it may just be 5 people).  This pass was a life saver for my family, as my son was able to ride his now favorite ride (other than the Carousel), Finding Nemo, without having to wait the full 40+ minutes to get in. 

Disney also has another interaction activity mentioned by the Businessweek article:  "Turtle Talk with Crush".  Apparently this activity, where children get to talk with Crush the Turtle from Finding Nemo has been very well received by children with lower functioning autism, and they even come away repeating more of the words that Crush has said.  My family didn’t get a chance to see this activity (it’s in Disneyland’s California Adventures park), but you can guarantee that we will be there the next time we go to Disneyland. 

There is a lot happening with Autism in this day and age.  More people are becoming aware of the disorder, more parents are getting timely information on how to manage the disorder, genetic markers and causes are being discovered, potential treatments are being investigated, acceptance is becoming more common, and technology is quickly enabling those with Autism to interact with those who are not more readily.  It’s an exciting time for parents of children with this now very wide spread disability.