The Future Of Autism: Cures or Neurodiversity Accommodation?

The New York Times ran an article on the stalled nomination of Ari Ne'eman, a young man with Aspergers, to the National Council on Disability.  Mr. Ne'eman is waiting for Senate confirmation, and would be the first person ever to join the National Council on Disability with Autism.  But he is finding some critics that don't want him on the council because of his position that neurodiversity should be the goal, and not cures for autism. 

This brings up a very interesting discussion on what the future of Autism research should be:  cure or accommodation?  If you ask a parent with an Autistic child, you will get an answer as different as the child is from others with autism.  That's because Autism is a spectrum of disorders, and not a single disability.  Because it's a spectrum, there are a number of different ways it can show, ranging from low functioning autism (cognitive issues, low development, etc.) to high functioning autism (brilliance, but inability to socialize because of missing cues). 

Those with high functioning autism can generally take care of themselves, though they grow up bullied and end up being ostracized from society.  Generally they will become brilliant scientists, professors, computer programmers, artists, etc. that do well when working in their field, but shun the lime light and attention from others.  These are those who want to see neurodiversity being taken seriously, and have their differences be accepted instead of being targeted by society.  Mr. Ne'eman falls under this category, and I have to admit I have in the past wanted this very same thing.  After all, my older brother was constantly bullied in school because he was seen as an easy target based on his autism.  I fear for my son as well, as he is also very high functioning. 

But there are others out there who have no immediate hope for being able to take care of themselves on their own.  They tend to be self destructive, go through seizures, are completely non-verbal, and also tend to test low in their IQ evaluations (if they can even be tested).  They are unable to function without assistance, and therefore no amount of neurodiversity acceptance will help them beyond their parents homes or a nursing home once their parents are no longer able to assist them.  I don't have a child at this level, so I hesitate to suggest that they as parents would like to see their children cured, but I would venture to guess that many would like to see a cure for their children. 

So which is right?  Well, I think it should be pretty obvious that both positions are right and therefore have the right to be heard.  I think that neurodiversity for high functioning individuals should be practiced, and those who are eccentric should be embraced within society.  But I still think that a "cure", or a way to manage the severe effects of autism needs to be researched.  Addressing both sides of the issue is very possible, and does not require a whole lot of money vs. addressing just one side of the coin.  Sure, medical research is very expensive (and you thought your Insurance Company got all the money?), but social change shouldn't be.  That comes from what we teach our children. 

Perhaps one day neurodiversity will no longer be an issue, because it will be practiced by everyone.  And hopefully one day a method will be developed to help manage severe autism for those who so desire it.  Being able to address both sides of the coin is one of the brilliant advantages of having an open, democratic society without the burdensome requirements of micro-managed regulation.

Preschool and Autism: Visiting my Son's Class

Yesterday I had the pleasure to be a helping parent in my son's Autism preschool.  I've wanted to help out before but I've not had the time until now, and I'm very grateful I was able to help. 

It started with Warm Up, where my son (and other students) walk up some stairs, down a slide, jump on the trampoline, and finish up by checking their schedule.  My son didn't do too well here, because he was afraid I was going to leave him there.  Normally my son works well in the class, but he's very clingy to me and really wanted to have a full day just playing with me. 

When finished, we worked at Table Toys, where he showed me he is able to remove parts from his toy and put things back.  His teacher told me that he is the only one that has figured out how to do this, and she was impressed.  I told her I wasn't surprised, as he takes our vacuum cleaner apart at home, and then puts it back together again. 

Once finished, he had his potty time, which is part of his schedule.  It's all part of his potty training, which they are excited about.  So many students this year are being potty trained, and it's exciting.  If you have an Autistic child, you probably know how difficult it can be to potty train them.  If you don't, just imagine that your child isn't potty trained at 3-4, but rather 5-10.  Part of it is because they don't tell you they want to go potty, and part of it is because they are so involved in their current activity that they don't want to interrupt it by going potty. 

Next was more Table Toys until Circle Time.  Circle Time was interacting with each student with song, learning their Letters, Numbers, and Colors.  Things that are expected from Preschool and prepares the children from Kindergarten.  Once done, they had their sensory activities, occupational therapy, work on fine motor skills, etc.  My son loves going to the sand table, and had a blast.  He then did well with his glue and art, though he preferred to spread the glue on his arm (so he had something to peel off).  Then he spent time on the swing, which he absolutely loves. 

Then he had potty time again, and they played outside with the other preschool class which is either mixed or a neurotypical class.  They all had a blast, though my son tried to run out through the gate to get me to chase him.  I know, because he stopped just outside the gate and giggled.  Once done, he had snack time, and I got to see how they use his picture exchange to get him to ask for things.  I think Jonathan wasn't too excited about this because now I force him to use the pictures as home.  Once done, they had some more play time until their final circle time, and we headed for home. 

It was a great experience, because I got to see Behavioral learning in action, with Environmental applications and Contstructivist methods being used to help the children build on their successes.  While my State has a number of short-comings (like not viewing Autism as a medical condition), the Granite School District has a very well staffed and well managed Autism program for Preschool.  The teachers and Aides are excellent, and I'm grateful for their work. 

Health Care Reform: Why It Doesn't Work For My Family

Before you start blasting away at my statement above and claiming I'm an arrogant Republican sympathizer with little or no regard for the little people, let me tell you why it doesn't work for me. 

In the over 2,000 pages that this comprehensive health care reform bill has, there is not one mention of Autism being covered by health care.  Not one.  That means that of the over 300 million American citizens in this country, an estimate of 3 million will not receive the necessary diagnosis or treatment to become useful citizens.  Think of that number:  3 million. 

But, you might say, the status quo isn't any better, and I should be happy for those that will be covered for their colds, flu, and catastrophic, life-threatening illnesses that can bankrupt families.  My response is that you obviously don't have an Autistic child, and therefore are not aware of the expense that comes with the diagnosis. 

First, there is the diagnosis itself.  Most healthcare insurance companies do not cover the visits to a psychologist, each costing quite a bit.  Because health insurance doesn't cover the diagnosis, it therefore falls on the parents to fit the bill.  And if the psychologist can't pinpoint where on the spectrum the child is, that means more visits, and more added to the bill. 

Then there are costs with special schools, training, etc. that are all expensive because of the increased teacher to student ratio.  Sure, you may think it's an outrage that there are 30 children to one teacher in a typical classroom.  But imagine of each of those children were Autistic, unable to sit still, unable to look the teacher in the eye, and bursting out into rages of melt downs because of sensory overload.  You CAN'T have a high ratio of students to teachers for autistic children.  Therefore, schools cost more. 

Because the cost of schooling for autistic children are so high, often School Districts will not provide those services.  This means the children are either home-schooled or they are sent to very expensive private schools, costing tens of thousands a year.  It's like buying a new car and paying for it in cash EVERY YEAR.  And you don't get a tax credit for "cash for clunkers".  That doesn't work with education. 

Finally, there is the cost of long-term care.  Children with Autism will eventually grow up to be adults with Autism, adults with varying levels of ability based on the severity of autism on the spectrum.  As such, they need some sort of organized long-term funds to provide for them when you as the care giver has passed away.  Some States provide long term care, but how much longer if they start to cut into their services to balance their budgets?  It's a scary future out there for those who are in no position to protect themselves. 

So you can talk about the poor getting healthcare, you can talk about the historic focus of this bill that Congress is trying to pass.  But as I already have healthcare that covers my family, and as it doesn't help provide for the needs of my son at a National level, the bill does nothing for me.  It doesn't protect or provide for my son's condition, a condition that has been shown to be genetic in origin, and therefore truly medical in practice.

In short, the bill is flawed, and I have little hope of seeing any provisions added at a later date.  I'm sorry, Mr. President and all members of Congress, but you have failed my son in your efforts.  My son, and one percent of your children and grandchildren. 

That is why I can't get excited about Healthcare Reform. 

Genetic Testing for Autism Gets Better: The Chromosomal Microarray Analysis

US News and World Report is running this news story on a more effective genetic test for Autism. The report tells of the three genetic tests that were run:  G-banded karyotype testing, Fragile-X testing, and Chromosomal Microarray Analysis (CMA).  In the tests preformed on 933 people between 13 months and 22 years, the two earlier staples of genetic testing performed at 2 percent for G-banded karyotype testing and 0.5 percent for Fragile-X testing.  But the new CMA test performed at slightly more than 7 percent in it's matching of genetic diagnosis to behavioral diagnosis. 

This means that of all those tested, the new test was able to conclusively link a genetic, chromosomal aberration to Autism.  This is huge for genetic testing, as it increases reliability for the genetic test method more than three times.  But it's still a low number.  Very low number, making genetic testing still too costly and inaccurate overall when diagnosing autism.

So why is this news so important?  Because it shows that we as a society are coming closer to understanding Autism and it's genetic markers.  As such, we are starting to understand Autism more, and that means working on ways to help manage it in more severe forms. 

But what about those that cannot be genetically identified?  Well, again, it all comes down to how Autism is diagnosed versus a relation to the conditions in the nervous system that cause Autism's symptoms.  As I have mentioned before in a number of other Autism posts, the Autism Spectrum is huge, and is used to encompass several specific symptoms.  These can be sensitivity to sensory stimuli, lack of eye contact, lack of social skills, enlarged or denser brains, etc.

And as geneticists have pointed out, there are a number of genes (up to 22 now), of which any one can cause some or all of these symptoms.  And the more genes that are present, the more pronounced the symptoms.  And what's really interesting is disorders like Fragile-X, which causes run-away stimuli in the neuron synapse firing, causes the same or similar symptoms as the denser brain of the Autistic.  So how do you tell them apart, behaviorally?  You can't.  It requires genetic markers, such as standard facial compositions of those with Fragile-X, to tell them apart. 

And, of course, it all really comes down to how to help those with any disorder like Autism, and that's education.  Making education available to those with Autism to help them function in this world with their disorder (and not fight it) is the best possible option.  Part of that is through behavioral therapy, part of that is through family (particularly parent) counseling to help everyone become part of the educational process.

So I applaud those working on the genetic testing for Autism, to help locate those children who are in need at a very early age and prepare parents for their responsibilities early.  And perhaps, just perhaps, insurance companies across the country will understand that Autism is something that needs to be covered, at least to the point of diagnosis. 

Autism: No Resolution In an Hour, but a Life-Long Pioneering Trek

Recently I’ve been reading about the depiction of Autism, specifically Asperger’s, in the media. This character has elements of it, but it’s not openly discussed, this other child has elements of it, but the writers don’t want to pigeon-hole their characters, etc. And then I read that the show, Parenthood, based off of the movie of the same title, will have one of their children diagnosed with Autism. Apparently the concept was so ingrained in my concerns that I had a dream about such a sitcom.  The following were the results.

The parents discover that their child is different than other children, and want to know what to do. They go to the school councilor, who then tells them their child might be autistic, and recommend they see a psychologist. This is serious stuff, not a big laugh that you would expect, but sets the tone for what will come.

So the parents go home and talk with their friends and family about the “diagnosis” (note, they have not actually gone to the psychologist yet), and they start getting advice. The first thing that comes up, of course, is the threat of vaccines, and how vaccines are poisoning our children. One friend and/or family member tells them they need to sue the vaccine companies. Another friend/family member tells them they need to get some “healing crystals” to place around their child at night and around their neck during the day. This is to “heal the spirit” of the child and make her well. And yet another family member turns to the couple who is by now scared out of their wits, and tells them that it’s all heavy metals anyway, and they should have their child purged with chelation treatments. Where did they get all this great advice? From watching a talk-show's interview with some celebrity with little to no education.

The parents are by now really frightened, the wife is crying, the dad is numb. Now, here is the twist: the dad is a hypochondriac, and thinks taking pills are the answer for everything. He says they are going to his favorite pharmacy to get something to fix their child. The mother, still trying to work through her own feelings, doesn’t disagree and goes with him.

The “pharmacy” is a group of guys that love to see this particular dad come into the shop. He will buy anything they tell him, and they often prescribe placebo’s just to get the money out of them. The dad goes into the pharmacy and says, “My child has autism. What’s it made of, and how do we fix it?” The guys go through their usual made-up mumbo-jumbo and start prescribing more placebos for the kid, and the dad completely trusts them. He’s just about to place down his money when one guy decides to be responsible and actually looks up what Autism is, and tells the dad to go see a psychologist.

Finally, they go to see the psychologist, and they really learn what Autism is: a spectrum of disorders that show up in diverse ways, but yet tend to have in common social reclusion and slow verbal development. The psychologist then proceeds to tell them about the spectrum, and where on the spectrum their child is. The mother has a good cry, the dad nods, trying to take it all in, and the psychologist then gives them advice on which books to read, a special school they can go to, and a heavy bill because their insurance does not cover autism diagnosis.

But in real life, it doesn’t work like that.  There is no magic cure, and even the psychologists that diagnose the disorder do not have all the answers.  Autistic children are unique, each having similarities in behavior, and yet many have very different behavior traits that distinguish them from other children with Autism.  As much as we would like to have all the answers, we just don't.  And that's precisely why some snake-oil salesmen, I mean "doctors" are able to peddle their poisons to desperate parents and potentially kill or seriously injure children that most often cannot speak for themselves.  And these so-called Autism Advocates are able to get away with it, because they promise the "quick fix."

But just like other “serious” issues dealt in sitcoms, the reality of Autism isn’t something that can be “fixed” in a half-hour, or in an hour’s time.  Nor with a pill, or starving the child of vital nutrients, or any other nonsense these "professionals" have promised will "fix" our children.  Autism isn’t a sprint, like having a cold. It’s not a marathon, like raising a child to adulthood. No, Autism is a lifelong around the world trek on foot with bare feet. You feel every step, the warm steps on even concrete when things go well, the freezing steps on slick ice when your child has a meltdown in public and others around you assume you are a bad parent, and the bleeding steps on sharp rocks when you feel like no progress is being made as your child has a melt down in the middle of the night for no reason at all.

So I applaud shows that try to depict Autistics, and parents that have children with Autism. It’s good to help other parents know what we are going through, if only on a superficial level. But I don’t see how they can show the full experience in an hour and have people really understand what autism is all about. It’s just not possible. It’s not an hour’s Sprint. It’s not a week-long mini-series type marathon. No, it’s a life-changing trek of pioneering parents. They leave their blood and tears behind, sacrificing their all for their children. Sometimes this means losing loved ones to scorn, anger, or even having them give up on you. Sometimes it means sacrificing social events for the benefit of your child. But at least each step, each bloody, painful step, is a step forward. Our reward as parents? The eye contact. The hugs. The occasional, “I love you”. The giggle of a child that is happy and excited about learning something new, like going to the potty on their own. That is what I live for.

Autism and Alternative Therapies: The Dangers of Prescribing Without Evidence: Lawsuit in Chicago

The Chicago Tribune is running a story about two doctors who are being sued for prescribing a dangerous autism treatment: chelation.  The father claims that they based their prescription off of bad practices, and endangered his autistic son's life by forcing him to go through chelation treatments.  Both doctors have not responded to comment, as is expected for any pending litigation. 

Chelation, for those who are not familiar with the process, is a chemical treatment designed to force the body to excrete toxic metals through urine.  If not performed correctly, it can cause kidney failure, and death.  It is also a popular "treatment" for children with autism, as it's believed that heavy metals, like mercury, cause the condition.  This is based on research by Dr. Wakefield, who's research has been shown to be fraudulent.

At the heart of the lawsuit is the laboratory these doctors sent tests in for the boy, which use a questionable method to test for heavy metals in autistic children.  They give the children a chelation drug to force heavy metals out of the body through urine, and then compare the metal content with the metal content of a control without having taken the chelation drug.  This, of course, will show elevated trace amounts of heavy metals in the urine of the autistic child, which then justify a chelation regiment that is lucrative for the doctors and potentially deadly to the child.

The good news is the doctor's being made to answer for their conclusions.  There are so many snake-oil salesmen out there for autistic children, it's hard to know what is and is not a true treatment.  It's about time those who make drastic and life threatening decisions without taking into account the safety of the child be made to answer for those same decisions.  It is, after all, negligent, and should be criminal, to falsely propose "cures" without having the clinical evidence to back it up.  Of course, there is a lot of money in snake-oil, so I don't know if it will ever go away.  One can only hope.

As for the father conducting the lawsuit, you have my support, and my prayers are with you.

As for the doctors that performed this fraud:  Shame on you both.

Science and Autism: Sensory Integration Therapy, Vanderbilt's Wilkerson Center, and Real Research

CCN.com is running a story, Scientists look to help children with autism find a voice.  The article follows a child who has had communication issues because he was diagnosed with Autism, and was taken to Vanderbilt's Wilkerson Center to attend a special needs school.  This special needs school is performing research on various therapy methods that claim to help autistic children, so as to determine their effectiveness.  One such therapy is Sensory Integration Therapy. 

Sensory integration therapy basically places the child in a room where the entire experience is designed to work toward a single goal:  teach the child.  For instance, in the room a child may sit at a computer and learn words with pictures, and have a therapist sit with him to tell them what the word means (matching the computer).  Next, the student is given a book with sentences that contain all the words he has worked on, so that he can cement them into his long-term memory.  Sound familiar?  It's the same process one goes through when learning a new language.  And for autistic children, that is essentially what they are doing. 

The research is focused on not just checking to see if this and other therapies are effective, but what long term effects they have.  Part of that determination is a brain scan both before and after the therapy.  Because they are using scientific measurements, double-blind studies, etc., the research can therefore be trusted and parents know that it is both safe and effective. 

So why is Vanderbilt even bothering with this research?  Because, as their scientist put it:

"Families who have a child with autism face daunting challenges, says Camarata. "Because of this, they are often going to leave no stone unturned in their searches for solution. Unfortunately, there are a lot of fringe treatments out there, they aren't effective and haven't been scientifically validated."

With a week of a prominent celebrity with little education turned instant "autism expert", it's good to see that real research resumes and parents are willing to recognize the importance of safe, real studies over new-age hype.  There are so many snake-oil salesmen out there peddling poisons as autism cures, It's important that we have scientists like Docter Stephen Camarata out there who are concerned with protecting our children.  Better his protection then the desire to fleece families of all their money with empty promises and poison cures. 

Thank you, Dr. Camarata.  Our thanks go out to you and to your staff for the important work you are doing.