Thursday, September 16, 2010
I'm Not Mad... Am I?
I had a very interesting conversation this week with a fellow individual with Asperger's (AS) and we were talking about our inability to sometimes recognize the emotions we are projecting out towards others.
As I continue to work with individuals with ASD's, I see a very specific situation continuing to rise to my attention. We often are oblivious when it comes to recognizing that others rarely perceive what we are actually feeling. In other words, we are not good at "showing" accurate emotions to display what's going on inside. Our actions and body language often tell a tale that is not in sync with and often far from what we know to be true.
I recently watched a conversation, or rather a debate, take place between a group of individuals, one of whom was an individual with AS. As he tried to explain his position on the topic at hand to the others in the room, you could see his frustration and anger rise. They just weren't seeing his point of view, which he happened to be quite passionate about, and it seemed the more intently he tried to explain, the more heated the conversation got. His face turned red, the volume of his voice rose significantly, and he began to lean in towards the others, his body language signifying his intensity and intent on changing every mind there.
Interestingly enough, when I spoke with him afterwards about the situation, he said he was absolutely not defensive, heated or angry, yet every person present would have bet their life otherwise. This is a common occurance and the more I see it happen, the more confident I become that these individuals really do not know how they are coming across! When confronted with the scenario, they are usually dumbfounded and often even hurt that anyone could have taken what they were saying out of context to the point of assuming they were mad or defensive. It's kind of an interesting dynamic, as the very same people will then see the identical behavior in another and take great offense, feeling as though everything is targeted at them and as though they are being attacked.
This whole scenario once again goes back to my last post, and the often inability or limited ability to think outside ourselves. It's so critical for others to understand that the self-consumed and seemingly selfish nature of those with ASD's is not what it seems. It's not a matter of not caring, not having an emotional connection, or not having sympathy or empathy. It's also not a matter of being selfish because of ego or internal wants and needs. It's more a matter of being completely overwhelmed by our environment and so many issues within ourselves (anxiety, sensory, OCD, etc.), that we are consumed with what's happening within, let along bringing additional outside issues into the equation!
Haven't you ever had a day where you've had so many difficult things happen, that you feel as if you will completely shut down if you have one more set back? Days where you are so overwhelmed it's impossible for you to think about one more tiny task, as you're spent on what's currently on your plate and the thought of one more thing will just send you over the edge? Welcome to our world! That's often how many of us feel on a daily basis, but don't often have the means to appropriately articulate that to others. Something to consider as well, is that we often don't know we are in that state. Sounds kind of strange, but just follow me for a second.
If you are born blind, then that's all you have ever known. At the age of 15, how would I then try to teach the concept of the color green to you? It's impossible, because you have no frame of reference for colors. I could explain a leaf to you, as that's something tangible you could touch and feel to understand, but an abstract concept like color would be more than challenging. We have to take into consideration that many of us with ASD's have lived every single day of our lives, or at least as long as we can remember, with very heightened anxiety, OCD, paranoia, sensory integration dysfunction and many other issues. If that's all we have ever known, then that's "normal" to us. We don't identify ourselves as anxious if that's how we have always felt. That's our "normal". Only if our anxiety was heightened far beyond what we normally experience, which would be difficult, would we be aware that something is different with our system.
What's interesting here, is that the level of emotions and stimuli we typically experience on a daily basis, would be considered by most as high adrenaline, or "fight or flight" mode. In comparison, most would only experience that level of heightened anxiety and senses if their life was truly in danger.
Imagine if you will, being accosted by a thief at gunpoint. Your sensory system is on high alert, your heartbeat increases, your respiration slows, your bloodflow is more restricted in your extremeties and pushed to your core. WHY? Because your body senses your life is in danger and it's converting all your resources to either fighting or flight. Self preservation is the name of the game, and whether or not someone just loaded the dishwasher incorrectly is not even a consideration at such a time!
Haven't you ever heard the stories of a mother who has a child run over by a car, and somehow in their heightened adrenaline fight or flight mode, they manage to pick up the car to remove their child from under? It's AMAZING what our bodies are capable of in that state. The strength, the rage and influx of emotion can be absolutely incredible. Most rarely, if ever, experience that amount of adrenaline. Those of us with ASD's, on the other hand, live like that daily and have to find ways to temper that heightened state. It's a very difficult balancing act and often more than a full-time venture. If most or all of our time and energy is spent controlling our mood and sensory modulation, how reasonable is it to expect we can monitor the body language and mood modulation of others?
That's not to say we are off the hook and get away scott free with our issues, but it is to say that we have to be TAUGHT how to do this. It's not learned by osmosis! Interestingly enough, we are often only able to learn these things when we are NOT in fight or flight mode. Teaching someone geometry when they have just been robbed and are in fight or flight mode is not a great idea. Their ability to focus, concentrate and stabilize their mood is impossible at best. You wouldn't attempt to teach them until several days after, once the adrenaline had calmed down and they have had time to ramp down from the experience. Likewise, our loved ones with ASD's are very difficult to reach in fight or flight mode. We usually have to bring them down a few notches before they have the ability to truly listen, observe and learn what needs to be taught. Once we accomplish that, THEN we are able to teach mood modulation skills, de-escalation interventions, and many other sensory and self-help skills that enable them to both recognize and eliminate the reactive behaviors that a hyper adrenaline state produces. They then have the skills and ability to stand back and process through information before acting. Once they have a handle on their own system, then they are freed up to notice more about their environment and others that participate in it. It's then we can teach social and other relationship skills that often are underdeveloped.
There's so much more to discuss within this particular topic. We will explore this in more depth in the next post. Stay tuned!
Laura Corby :)
Saturday, September 11, 2010
Excuse Me, I Speak Autism!
I remember some time ago there was a line in the movie, "Airplane" where this old grandmother type says, "Excuse me, I speak jive!" Many other comments have since come from that funny snip, but one that flies around my office quite often is, "Ask Laura, she speaks Autism!" Though this is often said in jesting, there's also a good bit of truth to the statement. In my years of working with individuals with ASD's, I have found we do think quite differently than others and we do express ourselves differently. As I work with parents and their children, I notice there is a HUGE disconnect in understanding. It's as if they are speaking different languages and I am often acting as the interpreter. Though I seem to understand both sides of the conversation, the other two parties rarely understand one another and a good bit of explaining has to be done to get them on the same track.
I see this especially when it comes to relationships with adults, such as marriage or dating. Quite often those of us with Asperger's and HFA assume that others completely understand where we are coming from, as if they can do the Spock Mind Meld and see directly into our thoughts or beliefs. More often I find that others don't understand emotional things the way we seem to explain them, and our passion about things comes off as anger or indifference, which is rarely the case at all.
One of the most difficult journeys coming out of the frey of ASD is learning to think outside our self. What I mean by that is we will often do for others the things we would love to have done for us. That's our way to show love and affection, as it's all we know. Many would say, "What's wrong with that?" Well, there are several issues there. One of the biggest issues is that everyone is different and shows emotion and care in different ways. The things that might float our boat may not in fact be the things that are longed for by our significant others. Assuming that others know our wants and needs by osmosis is a very risky venture! And assuming others want the same things that are important to us is just as risky! Both parties end up feeling dejected, while both are adamant they are doing everything they know to do to make the other person happy. TRUE... BUT... if each person is doing what "THEY" want and not what is needed by their significant other, there are problems afoot! Talk to you partner, ask them what they need to feel loved and cared for. What are the things that you can do for them that make them feel significant? Don't assume you know what those are, or you may be in for quite a surprise! Likewise, make sure you are articulating your needs to them as well. In this realm, it always comes down to commuication, or lack thereof, that can make or break a relationship of any kind.
Learning to communicate specific wants and needs in a way others can clearly understand, and finding a way to learn and understand the wants and needs of others, so we are able to meet them, continues to be one of our greatest deficits. Social and emotional reciprocity is not always our strongest skill, but with practice comes great improvement. Another practical tip is to ask for examples. So often someone tells us what they would like us to do, but if we are speaking different languages, we may not be interpreting things the way it was intended. Whenever I give instructions to an individual with an ASD, I will then ask, "OK, now what did I just say?", followed by, "Now what does that mean? Give me some examples." We are very good at regurgitating information we have been given, but that doesn't always mean we understand what we have just been told. If there is any misunderstanding, using this tip will identify it quickly and give the opportunity to clarify.
I'm going to continue along this line of thinking in my next few posts, and spell out some of the thought processes that happen in the mind of those of us with Asperger's in particular, though other ASD's often share some of these characteristics. I'm hoping by giving some specific examples, you may see a light bulb come on regarding thought processes you may not have understood from a loved one with ASD in the past. Hopefully, we can be an interpretation tool to help get you all on the same page.
Laura Corby :)
Founder/CEO
Autism Solution Center, Inc.
Tuesday, September 7, 2010
Do You Have Your Special Needs Trust Set Up Yet?
What? No you say? Well then, this blog post is not only timely, but necessary!
A friend of mind was injured on a camping trip this past weekend. Fortunately, he was there with some friends and family, so when he injured himself and fell to the ground, there were others there who were able to go after his daughter with autism, who was running away from the campfire! He made a comment that I hear far too often in my line of work. He said that his situation brought home the reality that he will not always be able to single-handedly care for his daughter, and he felt he had not appropriately planned?
I hated to hear that he had such an incident, yet I was relieved that he was realizing how important it is to plan for our special needs kids. There will come a day when we are no longer here or able to care for them, and the more planning we do in advance of that date, the better.
Most individuals in the U.S. do not realize that if someone with special needs has greater than $2,000 in assets, which is not much, it can affect their access to government funded assistance. So, as an example, a well meaning aunt can leave $2,500 in her will to a special needs child, and if that is not run through their special needs trust, that seemingly small donation can cut off access to medicaid/medicare and other long-term government assistance plans for those with disabilities later in life.
The best suggestion I can make is to talk to MetDESK - they are a division of MET Life that handles special needs trusts and they do the consults for FREE. Here's the website where you can get more information and schedule an appointment to talk to someone highly skilled in the laws regarding these trusts:
http://www.metlife.com/individual/investment-products/financial-planning/special-needs-planning.html#overview
There are also attorneys out there who do special needs trusts, but I have met more of them that don't understand the details than those who do. My suggestion to everyone is to educate yourself on the law and the facts, so you do not have to be 100% reliant on someone else. What if they are wrong? That's not something you want to find out about too late! There's some great information on this page explaining the trust and how it effects benefits, etc.
http://en.wikipedia.org/wiki/Supplemental_Needs_Trust
Definitely do your homework and talk to MetDESK, just to make sure you have your facts straight. They can help you to determine where to go from there and what the needs are in your specific case.
Hope you find this helpful!
Laura :)
Wednesday, August 4, 2010
Fact vs. Fiction: Who's Really Telling The Truth?
I often wonder how many individuals believe what they are told without taking the time to consider both sides of the argument, the facts presented by each side, and truly weighing for themselves what seems reasonable based on the evidence at hand? I'm seeing more and more of this disturbing trend and as history has clearly shown time and time again, when we begin to follow leaders without questioning, we reap the distasteful rewards of that behavior. Far too often, those rewards come with devastating consequences that we should have seen coming. Why do we not question? In this age of internet and social media, now that we literally have the world at our fingertips, it's easier than ever to research information and make our own decisions. Why then do we silently follow the herd to slaughter?
Yesterday, I read a great blog post called: Taking Umbrage with Dr. Nancy Snyderman - AGE OF AUTISM. Here's the link if you would like to read the awesome post!
http://www.ageofautism.com/2010/08/taking-umbrage-with-dr-nancy-snyderman.html
I posted a link to this great article on my facebook page and received several responses. I find myself in pretty heated debate from time to time on my page. Not that I enjoy conflict, quite to the contrary! Yet I find myself continually amazed by the number of individuals who spit out scripted responses, as if they were reading talking points from the American Medical Association, CDC, pharmaceutical representatives and the like.
I have decided to post my response to some of these, as we have got to start getting people educated on the issues at the heart of autism spectrum disorders. I mean no disrespect, but I'm speaking to more and more people who have no idea what all is involved and make assumptions based upon what they have been taught in school or in practice. Just because we are taught something, that does not make it true.
Hopefully this will at least open some doors that will lead to further appropriate research, education and conversations about the true etiological basis for the virtual plethora of immune-based, bio-neurological disorders that are rising up at frightening levels, one of which is regressive autism.
Here is my response, in two parts:
Part I:
Autism is very much an epidemic. Rates have risen faster than any other childhood developmental disorder EVER! It's not simply a matter of better diagnostics or expanding the spectrum. If that was the case, then where are all the adults who would now be identified with classic non-verbal autism? They're just not there and they aren't hiding in closets either!
We have to look at what has changed to increase these numbers. Yes, diagnostics have improved and that accounts for a small increase in the number, however, environmental toxins, inadequate food sources, genetic predisposition, increased vaccination schedules and much, much more have all combined to create somewhat of a "perfect storm" or a perfect environment for autism to thrive in the numbers we see today. We also know this is quite different as we don't see as much increase in "classic" autism from 40 years ago. Those numbers remain quite the same. What we do see an epidemic increase in is "REGRESSIVE AUTISM" or children who develop perfectly normal for the first 12 - 36 months, then either stop progressing or start losing skills and regressing. This was not the classic autism of 40 years ago.
Health in general has declined in the last few decades with the introduction of pesticides, genetically modified foods, low nutrition value foods, antibiotics/steroids used in meat sources, and the list goes on. All these issues play havoc on our immune systems and neurological functioning. Each new generation is more affected than the last and consequently, the numbers are rising to show that. There is much more to this debate than just better diagnostics.
Also important to look at the treatability of those affected. Many of those with what we would consider regressive autism are responding beautifully to treatment and becoming indistinguishable from their peers with appropriate, intensive and early interventions. We have to take a tough look as a society at what we are doing to our own people. We have made so many new innovations to increase production and meet demand, yet so often, there are consequences to those changes that are not adequately researched BEFORE they are doled out to the public. We find out years later that these things caused problems, and unfortunately, that's too late for many.
If you would like some material or additional sources to research this further, I have enough information to keep you busy for years! The data is there and the outcomes are crystal clear. The question becomes are we willing to lose some profitability for the benefit of our future generations?
Laura :)
Part II:
We treat these kids every single day and time and time again we are seeing the same things. If it were just simply genetics, then these kids would not be getting better with treatment. Part of what you have to look at is the metabolic dysfunction involved. So many of these kids have significant issues with methylation and with sulfation. Inadequate sulfur chemistry would keep them from detoxifying any heavy metals or neurotoxins that most average people have the ability to rid themselves of naturally. That in and of itself is a problem. Add to that the additional toxic load from vaccines, pesticides used at home, toxic cleaning products, and problematic food and we have some issues. The reason we don't see this across the board is that many people have the healthy suflation to detoxify themselves and move these neurotoxins out. Our kids just don't have that luxury.
As far as the family environment and behavior, there is no question this plays some role, but we have children from all walks of life and all family styles, good and not so good, showing the same exact symptoms and responding to treatment the same way. Again, this can't possibly just be genetics, far too much going on.
A huge part of the difficulty among the scientific community is several fold:
1) They are treating symptoms and not getting to the etiology of the problem. If they would continue to dig deeper, they would find the same issues we have been seeing for many years.
2) It's just flat not profitable to use preventative health care. At the end of the day, most in the medical community would prefer to treat a symptom with a medication, than to get to the root of the problem, treat it effectively, and eliminate the issue completely.
When dietary interventions and supplementation are used to address these ills, and quite often VERY effectively, it is pooh-poohed and looked down upon. Why? Because if people are well, then they do not need doctors or pharmaceuticals. The medical community prefers to treat illness, as opposed to eliminating and preventing it. Pharmaceutical companies make sure that is the case.
3) Simple bloodwork and organic acid profiles, among other tests, will show the excesses and deficiencies that plague these kids. It's not rocket science, and simple testing can often identify the problems. The other issue we have is that even if testing is done, most pediatricians are not skilled enough in biochemistry and metabolics to interpret the testing results. Quite frightening, yet entirely true. Most are not familiar with the pathways enough to follow them to deeper levels to identify the root of the problems.
4) Mark my words, in 10-15 years, when the truth finally comes out, and it will, this is going to be the perfect storm that I outlined above, combined with genetic predisposition, immune system dysregulation, and chronic inflammatory responses throughout the system. The inflammation/mucous production creates gastrointestinal problems, which affect absorption and nutrient deficiency, which affect everything else. Obviously there are many other issues as well, but this is where it starts and once that ball starts rolling down hill, it's very difficult to stop.
I'm not a conspiracy theorist, yet have seen thousands of kids with many of the same exact issues over and over and over. At some point, we have to stop looking at flawed studies disputing this information and start considering the outcomes of the children who are responding beautifully to treatment. If we were wrong, then why are thousands of children getting better when the correct interventions are done in a timely fashion? If the mainstream medical community is correct, then why are the children they are treating not becoming indistinguishable from their peers as ours are?
At the end of the day, we can make a study say anything we want, depending on who funds it. Studies are not without fault and frankly, our children do not have 10 years to wait for science to catch up with what we already know is working. I have to question at some point why the scientific community is so unwilling to even appropriately investigate and consider approaches that are clearly working with an enormous percentage of the population affected by regressive autism.
In closing, I return to my belief that there is not any one trigger across the board. This is a combination of factors affecting the environment, food sources, vaccinations and more, combined with ill functioning immune systems of those predisposed genetically and have significant underlying medical issues that continue to go unaddressed, which in turn create the perfect environment for this epidemic to continue multiplying throughout our world. Again, if you enjoy research, I have TONS of materials to reinforce what I am saying and would be thrilled to point you in that direction. We really need people to start reading COMPLETE studies, and not just the outcome headlines that are passed down by CDC and AMA. It's truly amazing how misleading a headline for a study can be, when once you read the entire study, you realize that's not exactly what the outcome shows. We need researchers to do the homework themselves, instead of buying lock, stock and barrell whatever the powers at be say. We need to start thinking independently and weighing evidence ourselves, following the money trails, following the medical/metabolic trails for those bodily systems not working correctly, and not ostracize those trying to correctly assist these children, when no one else seems to be listening. Our communities need to be educated and the general public needs to understand what is at stake. Though many believe it does not affect them, in the very near future they will find it's going to affect everyone, as the "system" will be picking up the tab for the long-term care of these individuals who are not adequately treated.
Laura :)
Wednesday, July 28, 2010
The Autism Solution Documentary
We are very excited to announce we have reached an agreement with a fabulous production company that is going to be filming our autism documentary they have tentatively called, "The Autism Solution".
We're very excited as our intention for the documentary is to educate the general public globally about the regressive autism epidemic we are seeing and "the perfect storm" or combination of circumstances being created that is inducing this epidemic, as well as many other immune based, bio-neurological disorders that seem to be appearing and increasing at an alarming rate.
What's changed in the last 50 years and how have those changes and supposed improvements to society affected our environment, our bodies, and the coping mechanisms within that drive our every day lives?
We intend to include issues such as genetic predisposition, immune system problems, gastrointestinal issues, metabolic issues, food source problems (processed foods, pesticides, hormones, MSG, anitbiotics, artificial sweeteners, genetically modified foods and much more), environmental toxins (pesticides, water flouridation, chemical run-off, industrial pollutants, etc.), pharmaceuticals, vaccinations, and many other involved components that brew the perfect environment for immune-based, bio-neurological disorders, and predominately the regressive autism epidemic we are living now.
We're also pleased to be able to educate the communities abroad on methods of prevention, and treatment for those who have already been affected by regressive autism, and many other similar disorders. This is a necessary and long overdue film that will strip away the politics, the hearsay, and get to the heart and truth of the matter.
We hope you will support our endeavor as we work to film this over the next 6-12 months. We hope to take this far beyond the walls of the autism community, and into the mainstream public on an international level. It's time the entire world knows the WHOLE story on regressive autism, how to prevent this in the future, and how to help those amazing individuals who need help NOW, and don't have 15-20 years to wait for the scientific community to catch up.
Expect to see more updates and our blog, which will be posted shortly, so you can follow our progress and journey into the waking up of a toxic nation!
Sincerely,
Laura Lum Corby, Founder/CEO
Autism Solution Center, Inc.
Wednesday, March 31, 2010
RSVP MAGAZINE ARTICLE FOR APRIL'S AUTISM AWARENESS MONTH
Image via Wikipedia
RSVP MAGAZINE ARTICLE FOR
APRIL'S AUTISM AWARENESS MONTH
Q&A with Laura Corby
Being that April is Autism Awareness Month, it seemed more than appropriate for RSVP editor Leah Fitzpatrick to meet up with the founder and CEO of the Autism Solution Center, Inc., Laura Corby. This facility helps children and adults with autism and autism spectrum disorders, like ADHD, ADD, Asperger's Syndrome and bipolar disorder, and was the first of its kind to offer services across all domains and at no cost. Though the center’s staff continues to treat patients in-house and online, times have been tough for the nonprofit, forcing Corby to make a decision to start charging patients a small fee last month. She’s saddened to not be able to help everyone that needs treatment and is on a mission to educate the general public about the necessity of this center. Corby also plans to open an Autism Solution Center in all 50 states and hopes to make her current Cordova facility into a multi-million dollar state-of-the-art treatment center in the near future.
RSVP: What initially motivated you to start the Autism Solution Center?
Corby: I have two kids with autism spectrum disorders, and I have Asperger's Syndrome, which is a high functioning form of autism. My daughter and I were actually incorrectly diagnosed with bipolar disorder. I got diagnosed at 16 with bipolar disorder, and they put me on all of these psychotropic meds for 20-something years that made me very nonfunctional. I even quit school in 10th grade. My daughter was diagnosed with bipolar disorder and ADHD at age 7. They put her on psychotropic meds, which made her psychotic. Then, my son, who about that time was 1, got very ill. He ended up going to the hospital, and he came home and was unresponsive. He quit talking, he lost all of his language, he stopped eating, he had chronic diarrhea. People don’t realize a lot of the signs and symptoms with some of these kids because it’s not just about talking and socialization. This is a medical problem that causes neurological consequences that has behavorial outcomes. When you just treat the behavior end, it’s like spanking a kid with cerebral palsy and expecting him or her to get better. We have to look at the etiology of this disorder and look at what the underlying issues are that are causing all these problems.
RSVP: What are your thoughts about the causes behind autism?
Corby: Before I even go there, I want you to know I’m not anti-vaccine at all, but I’m absolutely, positively one million percent convinced they play a role. I don’t think they’re causal, and I say that because if they were a cause, everybody that had shots would have autism. What we do know is that there is a subset of our children that have a genetic predisposition, and that genetic predisposition is setting the stage. Genetics load the gun, environment pulls the trigger. It’s not just the shot in general, but there are a lot of different things. The mercury for some kids is a trigger, the live viruses in vaccines for some kids are a trigger (such as the MMR), the combination can be a trigger and sometimes kids can get a bad bout of the flu that’s a trigger. It can be environmental stuff, and you know that too because you look at places like New Jersey, where they have a lot of coal burning facilities, and you have pockets around those industrial areas where the rates of autism are thousands of times higher than they are any place else, and it’s because coal burning emits mercury. There’s a lot to look at, and there’s really no one answer. We are not telling families not to vaccinate, just to be educated about their choices and vaccinate safely. Thimerosal-free, single dose vaccines and spreading them out when there is a family history. What harm is there in being safe if there's any question?
RSVP: What’s the difference in people who shows signs of autism at birth versus those who show signs at a later age?
Corby: Well, I’m guessing that about 85 percent of the kids we see now have regressive autism, where they develop normally and somewhere between ages 1 and 3, something goes wrong. Even with those groups, you find parents saying, “Even early on, I noticed some of the symptoms but never put it together.” You have to recognize that even in the regressive kids, there’s still a genetic predisposition that is there from birth, which can still give them a lot of these characteristics, it’s whether or not they’re pushed over the edge. What I think is interesting too is if you look at the rates of at-birth kids 10-15 years ago, which were one in 10,000 kids, you see those rates are close to still intact today. That I think is fascinating because that shows us that those rates have remained pretty stable, but we now have this whole new plethora of kids that have this new regressive form, and it’s often recoverable. In at-birth kids, you don’t see a lot of recovery, improvement yes, but not often recovery, but these regressive kids are getting better when they’re treated. So, if autism is truly genetic only, you don’t get better from genetic disorders. That tells me that there’s a tremendous amount of environmental factors involved that are sending a whole group of kids over the edge. This is not just a genetic disorder.
RSVP: What are the national rates for autism?
Corby: We’re talking one out of 90 children. We have an entire generation of children’s lives who are at stake right now and are not going to be functional. Think about that. That’s crazy. And there's all this money going into genetic research, but who's helping these kids NOW that have already been affected?
RSVP: How have doctors received your efforts to help those with autism?
Corby: I speak all over the country at conferences and training/teaching workshops. The bottom line is you can tell me all you want to about how what I’m saying isn’t scientifically valid because there’s no CDC placebo-controlled studies to prove it; well, yeah, nobody will fund them because they don’t want to know the answers. And interestingly enough, there are plenty of studies out there supporting this, that have been dismissed. At the end of the day, you can make studies say whatever you want to—depends on who’s funding them. I don’t give a darn what studies say anyway because what I really want to know is, “Are the kids you’re treating getting better or not, because ours are?” If they’re not, isn’t it time we start doing something different? It's all about outcomes, and should be. So, families love us, but many in the therapeutic and medical community think we're absolutely insane. Really though, at the end of the day, doing something that works and is getting kids better does not seem like the insane option to me.
RSVP: What’s some advice you give to parents if they suspect their child is showing signs of autism?
Corby: One thing I tell parents now is, “You have that instinct and that intuition for a reason, don’t you ever ignore it. It’s never wrong.” I never heard a mom come in here and tell me, “Oh well, I thought something was wrong, but it really wasn’t.” But, what I hear every day is, “I just feel sick because I knew something wasn’t right, but I couldn’t pinpoint it and no one would listen to me.” Doctors need to learn to listen to that. There are autism checklists on our website that parents can complete if there’s a concern. Better safe than sorry. http://www.autismsolutioncenter.com.
RSVP: Do public schools offer any programming for kids with autism?
Corby: Good question. I had to learn the law and learn what, on a federal mandate level, are these early intervention systems in schools required to do for these children with special needs. We pay taxes for all these services, but my child, for instance, wasn’t getting them. I actually went in to my son’s school and said he needs this and this, and when I asked the school if they had those services, they said, “Oh, we don’t have that here.” I told them that’s not what the law says, and I think they were floored I knew the law because I don’t think anyone had challenged them before. My son ended up getting everything he needed. He got 35 hours of ABA in the home environment, which is a behavior modification technique, which is how our children learn and is what our kids need desperately. He also got five hours a week of speech therapy, three hours a week of occupational therapy and an hour a week of music therapy, and we were the first family through early intervention here that had ever gotten that. All of a sudden, he started making these huge gains. Then all these other families are saying, “Will you help me?” It was really empowering because the more I learned, the more I realized that I was driving this bus. About that time, I opened the center. I worked out of my house for two years, and then in 2003, we applied for nonprofit status after I leased a space just for the center. Then, we got the land donated for our current location, and we put up these temporary buildings thinking we’d just raise funds for a building. How naïve was I? Here we are, still in these temporary buildings five years later.
RSVP: What’s your biggest challenge currently at the center?
Corby: We’ve been doing this seven-and-a-half years now, and until last week, it was a no cost center. We did everything at no cost for families because what I found is when you go to these DAN (Defeat Autism Now) doctors, who are a group of specially trained medical doctors who have expertise in metabolic issues and gastro and immune issues that are common in kids with autism, you can easily drop $2,000 or more in one day, like I did when I had to take my kid to a DAN doctor in Louisiana. If I didn’t have a credit card and they hadn’t been willing to work with me on a few things, I couldn’t have done that. What do people do that don’t have an open credit card? The answer is their kids don’t get helped. That’s why I decided to incorporate the no cost policy at the center, and we hired a DAN doctor and started bringing him in to see patients. I was doing biomedical counseling, dietary counseling, teaching functional communication, behavior modification and pretty much doing everything, and he was coming in once a month to see patients. We did that probably for four years off and on, and then he moved. I hired another doctor for about a year, and he finally came back. Unfortunately, I’m at the point that I’m having trouble just paying the bills, so we are charging what were suggested donation rates now for services. Also, our donations have dropped almost 50 percent in the last year. We need help. We need board members, volunteers and help fund-raising. It makes me sick because I know if we go away, there’s no one else doing what we do. This is so desperately needed, and people don’t realize what an epidemic autism is.
RSVP: How many autistic people have you helped at the center?
Corby: I can’t give you an exact number because I don’t know off-hand, but I can tell you from my database that we’ve helped close to 1,800 people in the last five years. That’s not even counting how much I do online. I have on a continual basis thousands of e-mails constantly in my inbox and our phones ring off the hook. I can’t keep up with it!
RSVP: Where do patients at the center come from?
Corby: We have one family now coming to us from Iraq. We have others from Canada, Australia and all over the place. You know, we were the first organization worldwide that did everything under one roof and did it at no cost. Of course, we can’t say anymore that we do it at no cost, but maybe again soon.
RSVP: What is your ultimate goal with the people you and your staff treat?
Corby: My goal is to get people with autism living independently. I don’t want these parents when they die to have to worry about who’s going to take care of their kids.
Thursday, September 24, 2009
The "Benefits" of Autism Spectrum Disorders
I don't normally repost other people's articles, but in this case, I thought it was worth repeating! I will say on the front end that I don't agree with everything said here. Understand that while reading, I am very aware of the current autism epidemic and the dramatic increase in numbers over the last few years that this author seems to dismiss. However, I am posting this because for a rare moment in time, there's an article that actually discusses the "benefits" of autism spectrum disorders (ASD), if you will.
This is very much the category I find myself within, as my ASD is what gives me the focus and never ending drive that make me very good at what I do, as is the case with many others. As I have said in the past, I have always felt it was important to treat medical and neurological issues that impair quality of life, but there are many of my quirks within ASD that I choose to leave untreated, as they are what give me my edge.
At any rate, hope you find the value in this piece, as I did. Enjoy!
Laura :)
The Chronical Review
July 13, 2009
Autism as Academic Paradigm
Thinking back on history, maybe you've wondered how it was that American colleges and universities could ever have contributed to racist discourse. But Princeton and many other institutions kept out Jews, and "academic" defenses of slavery, segregation, and eugenics were commonplace until broader social changes rendered such views unacceptable.
The sad truth is that dehumanizing ideologies are still with us in the modern university, although they take very different forms. Prime examples include the unacceptable ways we sometimes talk and think about the autism spectrum.
A few years ago, Michael L. Ganz, who teaches at the Harvard School of Public Health, published an essay titled "Costs of Autism in the United States." Nowhere in the essay does he consider whether autistic people have brought benefits to the human race. Can you imagine a comparable essay titled: "Costs of Native Americans"? Ganz might think that autism is strictly a disease, but he never mentions or rebuts the fact that a great number of autistics reject this view and find it insulting.
David Bainbridge is a veterinary anatomist at the University of Cambridge. In 2008 he published a book with Harvard University Press, Beyond the Zonules of Zinn: A Fantastic Journey Through Your Brain. In the book he claimed that autistics were lacking in the quality of human alertness, and he compared their cognitive faculties unfavorably with those of brain-damaged monkeys. Deborah R. Barnbaum, a philosopher at Kent State University, wrote a book (ironically titled The Ethics of Autism, Indiana University Press, 2008) pondering the philosophical implications of the supposed fact that autistics cannot understand the mental lives of other people; yet this result has not held up in experiments and it also could be refuted by a few simple conversations with autistic people.
The point is not to focus blame on these particular individuals, as they have soaked up common ideas, attitudes, and presuppositions from a broader setting. It's quite possible that these writers are all "nice people" in the usual sense, but still they have not developed any sense of revulsion or hesitancy at such portraits of other human beings. The sorry truth is that until we are made very consciously aware of the implications of our words, it is all too easy to slip into bad habits and harmful rhetoric, even in politically correct 2009.
I've cited some of the more obvious examples, but the underlying biases are much more deeply rooted. A lot of people at colleges are aware of dealing with autism (and Asperger's syndrome; I will refer generally to the autism spectrum) in their "special needs" programs. The more complex reality is that there is a lot more autism in higher education than most of us realize. It's not just "special needs" students but also our valedictorians, our faculty members, and yes —sometimes —our administrators.
That last sentence is not some kind of cheap laugh line about the many dysfunctional features of higher education. Autism is often described as a disease or a plague, but when it comes to the American college or university, autism is often a competitive advantage rather than a problem to be solved. One reason American academe is so strong is because it mobilizes the strengths and talents of people on the autistic spectrum so effectively. In spite of some of the harmful rhetoric, the on-the-ground reality is that autistics have been very good for colleges, and colleges have been very good for autistics.
The economist and Nobel laureate Vernon L. Smith, a former colleague of mine, is one of the best-known examples of a high achiever on the autism spectrum. Vernon, in Discovery: A Memoir, attributes his extreme focus, his attention to detail, and his scholarly persistence to his connections to the autism spectrum. Richard Borcherds, winner of the 1998 Fields Medal in mathematics, has been diagnosed as having Asperger's. Temple Grandin, who teaches animal science at Colorado State University, is a brilliant autistic woman whose ideas have revolutionized how American slaughterhouses treat animals. There are very likely many more examples, albeit unrecognized ones. Simon Baron-Cohen, a leading autism researcher at the University of Cambridge, argues that autistic high achievers are far more common than most people realize, most of all in mathematics and engineering. He stresses systematizing behavior as an important cognitive strength of autistics.
In spite of some of the common rhetoric, each year specialists are teaching us more about the cognitive strengths of the autism spectrum. In the 1960s, it was a common view that, except for a few savants, most autistic people were intellectually disabled ("mentally retarded" was the less than felicitous term), and to some extent this stereotype persists today. But a growing body of work pinpoints areas where autistics outperform nonautistics.
A partial list notes that autistics have, on average, superior pitch perception and other musical abilities, they are better at noticing details in patterns, they have better visual acuity, they are less likely to be fooled by optical illusions, they are more likely to fit some canons of economic rationality, they solve many puzzles at a much faster rate, and they are less likely to have false memories of particular kinds. Autistics also have, to varying degrees, strong or even extreme abilities to memorize, perform operations with codes and ciphers, perform calculations in their head, or excel in many other specialized cognitive tasks. The savants, while they are outliers, also reflect cognitive strengths found in autistics more generally. A recent investigation found, with conservative methods, that about one-third of autistics may have exceptional skills or savantlike abilities.
Autistic people usually have a superior desire and talent for assembling and ordering information. Especially when they are given appropriate access to opportunities and materials, autistics live the ideal of self-education, often to an extreme. In my new book, Create Your Own Economy, I refer to autistics as the "infovores" of modern society and I argue that along many dimensions we as a society are working hard to mimic their abilities at ordering and processing information. Autism is a topic that anyone interested in education should be reading and thinking about.
It turns out that the American university is an environment especially conducive to autistics. Many autistics are disadvantaged or overwhelmed by processing particular stimuli from the outside world and thus are subject to perceptual overload as a result. For some autistics, that is debilitating, but for many others it is either manageable or a problem they can work around. The result is that many autistics prefer stable environments, the ability to choose their own hours and work at home, and the ability to work on focused projects for long periods of time.
Does that sound familiar? The modern college or university is often ideal or at least relatively good at providing those kinds of environments. While there is plenty of discrimination against autistics, most people in American universities are so blind to the notion of high-achieving autistics that one prejudice cancels out the other, to the benefit of many of the autistics in universities.
Autistics also tend to be extremely good at a subset of cognitive tasks and markedly poor or impaired at others; they are the ultimate beneficiaries from Adam Smith's notion of the division of labor. Academic specialization makes it easier for such people to win fame.
I don't want to push you too much in the direction of stereotypes such as "the absent-minded professor." Some people fitting that profile may well be on the autism spectrum, but the spectrum also includes beautiful women with charming smiles, enthusiastic extroverts, people who cannot produce meaningful speech, and people who make very clear and effective public speeches from memory alone. Tony Attwood, an Australian psychologist with extensive diagnostic experience, believes that acting is a profession well-represented on the autistic spectrum. The point is not to convince you of any single profile of autistics or to replace your old stereotypes with new ones. Rather, we keep on learning that the diversity of autistics is greater than we used to think.
There is no doubt that many autistic people have very troubled lives and are unable to move into positions of high achievement or even contend for them. Problems, such as very obvious social atypicalities, acquired social anxiety, or various perceptual hypersensitivities —found among many but by no means all autistics —may hamper their ability to obtain ordinary jobs or rise in social status.
Current prejudices are based on at least two mistakes. First, too often autism is defined as a series of impairments or life failures, thereby ruling out high achievers. It is more scientific and also more ethical to have a broader definition of autism, based on differing and atypical methods for processing information and other cognitive and biologically defined markers. That way we do not label autistics as necessary failures, but rather we recognize a great diversity of outcomes including successes.
Second, diagnosed autistics are very often those people who encounter major problems in life. Most higher-status autistics don't ever show up for diagnosis or intervention, and many of them have no great need for it or no real awareness of it, or, even if they are having difficulties, they fear the stigma of a diagnosis. Common samples of autistics, as you find studied in a typical research paper, show many more problems, and many fewer successes, than is most likely the case in a true population sample of autistics. In other words, there is enormous selection bias. Research on autism is only starting to confront that problem.
We're also learning that a lot of the stereotypes about autistics are false or at least misleading. It's been suggested, for instance, that autistics don't care much about other people, or that autistics lack genuine emotions or are incapable of empathy. The more likely truth is that autistics and nonautistics do not always understand each other very well. It's odd that the people who make this charge so often, in the very act of doing so, fail to show much empathy for autistics or to recognize their rich emotional lives. Even when the cognitive capabilities of autistics are recognized —most commonly in the cases of savants —it is too often accompanied by a clichéd and inaccurate picture of a cold, robotic, or less than human personality.
The relevance of the autism spectrum for higher education isn't just about particular individuals on the autistic spectrum. The very nature of higher education shows how much we, often without knowing it, hold up autistic cognitive profiles as a partial educational ideal. In "special needs" education, there is plenty of effort to teach the skills of the nonautistic to the autistic, but in the regular classroom we are often doing the opposite. I view higher (and lower) education as teaching people to be more autistic in many of their basic cognitive skills. Again, some key cognitive features of autism are the ability, and desire, to process lots of information across widely different scales, from tiny details to overarching structures; focus and the mental ordering of that information; a relatively high degree of scientific objectivity; and the presence of some highly specialized cognitive strengths, even if they are accompanied by some areas of poor performance. To an educator a lot of that list ought to sound pretty good.
Another way of putting it is to note that all students are special-needs students requiring lots of help. The nonautistic students do not represent some ideal point that everyone is striving to attain, but rather both autistic and nonautistic students are trying to learn the specialized skills of the other group, as well as perfecting their own skills.
When it comes to public and academic discourse, it's not just our understanding of autism that is up for grabs. Human beings experience a variety of neurodevelopmental paths, with ADHD (attention-deficit hyperactivity disorder) as another prominent example. We need to be careful about what we label as a disorder. When it comes to ADHD, for instance, there is growing evidence that ADHD individuals achieve very good outcomes by normal social standards. The popular-culture stereotype is of an ADHD (often "ADD") person superficially clicking from one channel or Web site to the next. An alternative vision is that many ADHD individuals adapt and end up using their cognitive profile to propel themselves from learning one piece of information to the next, and in fact end up better educated and maybe better situated to deal with the social world as well. Similarly, one study found that dyslexic people made better entrepreneurs on average, because they are used to the idea of having to delegate some tasks rather than trying to micromanage everything.
In many areas of human neurodiversity, including autism, we still don't know the answers to many basic questions. There is still not even agreement on the basic definitions of autism, Asperger's, and related concepts. In the meantime we are applying lots of stereotypes and negative descriptions to autistics that we would not dream of using to describe racial or ethnic groups. It's high time that colleges and universities got out in the lead to fight these common prejudices. The rhetoric coming out of higher education needs to match up to the reality of higher education as a common avocation for autistic people.
We are still searching for appropriate metaphors and language to describe and explain human neurodiversity. For instance, we've moved beyond viewing autism as the result of "refrigerator mothers" —cold, distant —as was most visibly suggested by Bruno Bettelheim in the 1960s. We're just starting to move beyond defining it as a "series of impairments." If we call autism a "disorder," is that being humane and offering sympathy and aid, or is it judgmental in a way that stereotypes, lowers expectations, and ignores variation in outcomes?
But if it is not correct to speak of a disorder, what exactly is the sensible language and what are the accompanying conceptual frames? The commonly heard distinction between "high functioning" and "low functioning" ignores extreme variations in the skills of the autistic individual, and it also seems to classify a group of human beings as somehow unfit. When it comes to discourse on the autism spectrum, we should be humane, respect human difference and individuality, respect the need for possible assistance, and recognize the diversity within the spectrum, and all that without assuming that nonautistic ways of viewing the world are always the right ones.
The common public perception is that autism is about sick or diseased children, and it is up to the academic community to help correct that picture. If we look at the data, it seems easy to find lots of autistic children yet relatively hard, at least by the standards of common public perception, to find a commensurate number of autistic adults. For instance a typical figure suggests that the United States has about 500,000 autistic children, for a prevalence in the range of 1 in 150. That would mean that the United States also has 1.5 million autistic adults. (Those numbers are very rough approximations and still being debated.)
My belief is that the United States does in fact have more than one million autistic adults. But if there are so many autistic adults, the obvious question is: Where are they? Who are they? Are they all locked up in institutions? It is sometimes suggested that there must be a very recent "epidemic" of autism. But the epidemiological measurements of autism prevalence —if we acknowledge deliberate changes in diagnostic criteria, awareness, service availability, case-finding methods, and so on over time —do not indicate large unexplained increases. You could argue for a gradual increase in the rate of autism, as existing evidence cannot rule out all changes (I think the rate is more likely constant over time), but still the growth would be so incremental that, again, a sensible estimate would be more than a million autistic adults in the United States.
It's a little tricky to talk or write about the autistics who may work in your institution. If you work at a college or university, there is a good chance you are interacting with people on the autism spectrum on a very regular basis. Maybe the reaction of the reader is to draw up a mental list of people in the workplace and start applying various stereotypes to them. Maybe you'll be on the lookout at the next dean's meeting for people who exhibit "autistic traits" and then gossip about those perceptions to your friends.
That's human nature, but I'm suggesting an alternative tack. Embrace individualism. Question your stereotypes. Maybe even look in the mirror. When you're done, it's likely that you'll see far more talent, in far more unorthodox varieties, than you expected.
Tyler Cowen is a professor of economics at George Mason University who blogs at http://www.marginalrevolution.com and writes for The New York Times, Money, and other publications. This essay is adapted from his new book from Dutton, Create Your Own Economy: The Path to Prosperity in a Disordered World.