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.
Thursday, August 27, 2009
Autism, Asperger's, Neurodiversity, and the skewed perspectives in each of the camps!
This all started day before yesterday, when a dear friend forwarded me the following articles:
1. The New Wave of Autism Rights Activists -- New York Magazine
2. Controversial New Movement: Autistic and Proud - ABC News
I have long been involved in the autism community, as an individual with an autism spectrum disorder, as the parent of two children who have autism spectrum disorders, and as the Founder/CEO of an autism treatment center that works with and treats thousands of individuals and their families struggling with the same, I was disturbed to say the least.
One of the most bewildering issues I have experienced while in this field is the flat out dissension between the ranks and what seems to be the inability of the ASD community to agree to disagree on some things, yet pull together on the majority of issues we could more than likely agree upon. What I have seen instead is the division of the autism community into camps, and the dangerously polarizing view that in order to walk in a particular camp, you must agree 100% with their views and agendas. THIS IS NUTS! No wonder we're not getting anything done as a community.
Taking this a step further, both sides are right AND both sides are wrong! There is no cut and dry answer here across the board on all issues. Welcome to the spectrum! I am all too familiar with both camps. Funny thing is, I find myself somewhere in between the two. The head of the neurodiversity group is completely offended by the assertion that autism could be the result of something toxic or that something is "wrong" and is furious that others are trying to shove their viewpoints down people's throats, yet she is doing the very same thing by demanding they stop trying to "fix" these individuals and celebrate them the way they are!
It's interesting, as I am not treating many aspects of my Asperger's, as some of my quirks, as some might call them, are also the very things that make me excellent at what I do and incredibly artistic. When those things are treated, I lose my edge. I made the decision to keep my uniqueness, with the price tag being some significant struggles with anxiety, OCD, sensory integration dysfunction, and severe depression when things get too overwhelming. I have learned to modulate many of those issues myself through a tremendous amount of work, though it's still not always totally under control. So although I understand her point to some degree, I also look at my son, who is now capable of independence because of the interventions that were provided. He was sick and very miserable, as was my daughter and I, prior to some of the interventions that seriously improved the quality of our lives. It is not the right of ANYONE to vilify another for pursuing the assistance needed to improve the life of a loved one who is struggling. What is right for you is fine, do not assume it's OK to impose that upon someone else.
I find this quite disturbing, to be honest. As an individual with an ASD who was suicidal for many years and quite dysfunctional, I can tell you first hand, I WAS MISERABLE. I am grateful beyond measure that I have learned what I have about this disorder, providing me with the tools to improve the portions of my life that were unbearable. One of the comments made in the article was, "Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education. My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was," Chew said." WOW! Good thing I didn't say that about my 9-year-old son Chad, who was severe and nonverbal, yet now indistinguishable from his peers. Can't imagine where he'd be now had I taken that stance. Again, that's a personal choice, but don't force it as a rule of thumb on all involved.
Chad had some SIGNIFICANT underlying medical problems that caused a tremendous amount of pain and contributed incredibly to his inability to navigate this world we live in. He will always have autism. He will always be unique. I love that about him! But he is no longer in pain, he is functional, and as a parent I no longer worry about what will happen to my son when I am no longer here to care for him, as he can care for himself and live independently. THAT IS MY GOAL. Not to change who these individuals are, not to rob them of their identities or uniqueness, rather to provide every opportunity available to insure they have access to the care needed to eliminate any physical illness that is causing pain and dysfunction, assist them educationally and therapeutically to insure they can function to the best of their ability, and to celebrate their uniqueness in every other aspect. It's a package deal! They are who they are, but let's help them to be the best they can be. I just don't understand the fault in that. My son would agree, as would many others!
I agree that these kids are remarkable gifts from God, but even with neurotypical kids (and I use that word VERY loosely, as what is normal anyway, right?), as parents we ought to seek to provide opportunities for our children to reach their fullest potential, WHATEVER THAT IS. Accept them as they are, yet strive to help them be their best. What sane person in this world can say that there is any single individual who could not stand SOME improvement? AND..... to take that a step further, you may dig in a big way, accept and celebrate the individuality of your child with severe autism, however, are you insuring that you have someone else lined up to dig and celebrate them as intensely as you do when you are dead and gone? I sure hope so, because as much as you might like to think it's the responsibility of this universe to learn to accept and accomodate your child, that will NEVER happen universally, so plans have to be made for long-term care if you are making the choice to "accept them as they are" and not pursue improvements of any kind.
Sorry, know that's kind of blunt, but really, let's wake up and smell the coffee here. I TOTALLY celebrate the uniqueness of EVERY individual, ASD's or otherwise. However, I ALWAYS believe in striving to better ourselves whenever possible. I also know for sure we will all die at some time, and it's in EVERYONE'S best interest to insure our children have, to the best of their ability, the skills necessary to navigate this harsh world independently, or they will not be in a pleasant situation once we are no longer here to care for them and love them, as in many cases and with few exceptions, only a parent can truly do. Celebrate them all you choose to, but you better have a plan B if you get hit by a bus!
ASD's are not curable, yet there are so many aspects that can be addressed to improve quality of life and address painful medical issues that are often underlying the diagnosis. We want health, happiness and the ability to live independently, not necessarily only a "cure". And truthfully, and as I have already said several times, what is normal anyway? I mean really! So, all that to say, two very forceful opinions between the sides, and frankly, both are wrong in some aspects, and both are right in some aspects. It should be left to the families to decide how they choose to handle the lives of their loved ones. Our job should be to educate and make sure everyone has the knowledge and information on the topics at hand to make an educated decision, not force our opinions upon others. I believe if you are correct in your stance and a good educator, you should be able to sway opinions without force and rhetoric, but rather simply with the sharpest of all tools, information. If shifting public opinion requires you to beat others over the head and threaten with God knows what, how strong can your point really be? Yet I see both sides resorting to name calling, passionate slandering, and full on hatred of anyone who does not embrace their particular stand. It's absolutely deplorable on the part of all those involved and it needs to stop NOW. For goodness sake, get over yourselves and let's think about the kids first for a change. At some point I would think the need to truly address these issues should begin to outweigh one's need to be right.
Now on the flip side, it is also incorrect to assume that everything autism is caused by heavy metals and environmental toxins. Every one of these kids is as individual as their finger print and there are a multitude of underlying issues that contribute to the onset of these disorders. Don't get me wrong, I know that these play a role in a large percentage of individuals with ASD's, however, not in all of them and in varying degrees. There is no one thing that causes or cures ASD's. Not at this point anyway, and I seriously doubt that will change in the near future as there are just too many factors involved to boil it down to one thing. There are so many cumulative factors playing a role in these disorders that there is no way to identify a one and only smoking gun. Yes, thimerosal is a HUGE problem, live virus vaccines and combination vaccines are a problem in children with dysregulated immune systems, environmental toxins are a problem, and the list goes on. I could continue for days listing the many things that we, our society, are imposing upon individuals, many of whom have a genetic predisposition to begin with, that is increasing the onset of these neurological problems. Common sense would dictate either elimination of or significant changes to those things we know statistically have played a role in the lives of many being altered. Having said that, just because there is no one-size-fits-all cause or cure, does not mean these issues are not a serious problem and likely trigger for many individuals, just not for all!
I can remember early on in this journey, one of the most frustrating issues as a new parent of a child with autism was trying to navigate the plethora of information and opinions out there. I could ask 50 people what I should be doing and be told 50 different things, with each absolutely convinced theirs was the ONLY correct solution. As a parent trying to identify the right course of action, this is enough to shut anyone down in their tracks. Just because something may have been effective for Johnny does NOT mean it will be effective for Jane, and trying to force your existing beliefs on what the issues were with your child, does not in fact insure that will be an appropriate intervention for anyone else, who has an entirely different system and set of circumstances, even though there may be some similarities.
Using common denominators and past experience to identify a starting point in treatment with many of these individuals is well within reason, however, individualized testing to identify their specific issues and much tweaking is absolutely critical. Even though many of these individuals have some similarities, there are equally as many differences, all of which have to be taken into account and weighed in the treatment process. As said earlier, there is no one-size-fits-all treatment protocol, as everyone is unique and has their own specific issues that must be addressed.
I have run across entirely too many parents and treatment providers who fall into the dangerous rut of believing their way is the only answer. I have seen parents go from practitioner to practitioner, each having a different view regarding what the problem was. After spending hundreds of thousands of dollars on treatments, often none of which were effective because that was NOT their specific issue, they are now broke and don't have the funds to pursue what could actually be the real underlying problem. Don't get me wrong, I'm sure those treatments were effective for many, but not for everyone! One of the things I tell parents when I teach conferences is that anytime you run across someone who says "Here's what we do to treat autism," RUN! There is no here's what we do. It has to be catered to the specifics of each individual.
So I hear many in this camp calling those in the neurodiverse ranks all kinds of interesting names, yet I see very little compassion and recognition that although they may not agree with all of what is said, there are some valid points as well. I hope if nothing else that perhaps this post will cause us all to take pause and consider the fact that none of us have all the answers. We all have some good info and some not so good info! We all have a tremendous amount to learn and should be recognizing that the more we learn, the more we know we do not know anything! There's nothing wrong with sharing opinions, but there is a great deal wrong with force feeding them to others, regardless of what camp you reside in!
I guess I could only wish that all that time and energy being used to tear one another to shreds could be better funneled into working synergistically to accomplish for the masses what we will never get done if we continue to splinter off begrudgingly. Such a waste and it accomplishes nothing beyond fueling the ongoing fued and increasing the distance between the very parties that should be able to work in a common bond on behalf of these incredibly wonderful children.
Wednesday, August 19, 2009
A Timely Introduction To Dr. Ian Brooks
I want to take this opportunity to give you a timely introduction to Dr. Ian Brooks, who will be a frequent guest blogger on our site. Dr. Brooks serves on Autism Solution Center's board of directors, but also has a significant interest in autism spectrum disorders, research, and furthering the communication relationships between the scientific community and the general public. I have listed his bio below for your review and as you get to know him better, I am convinced you will be thrilled with the dialog he opens in this venue. He is very down to earth, open to new ideas, and willing to investigate and research the tough topics most will shy away from. I hope you will join me in welcoming him to our blog staff! I am looking forward to working with Dr. Brooks and opening some new doors to autism research and information that have illuded the scene for far too long!
Laura :)
Ian Brooks is a Project Manager for the Biomedical informatics Unit, part of the Clinical & Translational Science Institute at the University of Tennessee Health Science Center. He has a PhD in Neuroscience (sub-specialty molecular genetics), and has been an academic researcher for 11 years. In Grad School he successfully applied for Predoctoral Fellowships from the American heart Association, with his second grant being ranked in the top 2% of the applicant pool. He has published several peer-reviewed scientific articles & has submitted approximately one million dollars worth of grant applications to the National institutes of Health this year.
Ian is also a Science Communicator, a “job” he takes very seriously; the lack of clear, two-way communication between science and the general public is at fault for many of the very serious problems facing society and the world today. Since 2006 he has been Commissioning Editor for the science magazine Lablit, and he has a lay-writing portfolio of over almost 30 science-communication articles. He maintains a blog on the award winning “Nature Network” that is consistently one of the “Featured Blogs” on Nature’s main site, with his blog ranked in the top 5 blogs on the Network. Ian is an Associate Editor for the National Postdoc Association magazine, “The Postdocket”.
In Graduate School Ian was a member of the Dean’s Working-Climate Committee, was past-President of the UT Postdoc Association, an elected Member of the Board of Directors of The National Postdoc Association (NPA), and chair of the NPA Oversight & Elections Committee. Under his leadership the UT Postdoc Association was awarded “Most Outstanding New PDA” at the NPA 2008 Annual Meeting.
Tuesday, August 4, 2009
The Vicious Cycle Within Asperger's
Image via Wikipedia
First let me say that I believe there are 2 very different subsets of AS. DSM-IV identifies only one of these as stated here.
Diagnostic Criteria for 299.80 Asperger's Disorder
- Qualitative impairment in social interaction, as manifested by at least two of the following:
- marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
- failure to develop peer relationships appropriate to developmental level
- a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
- lack of social or emotional reciprocity
- Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
- encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
- apparently inflexible adherence to specific, nonfunctional routines or rituals
- stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
- persistent preoccupation with parts of objects
- The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
- There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
- There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
- Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
What we also see consistently is Sensory Integration Dysfunction, clinically significant anxiety, OCD, paranoia, anger and/or rage, low muscle tone, clumsiness, very low self esteem, preoccupation with the perception others have of them, a strong drive and need to be excepted at any cost, over compensation for lacking social skills and acceptance often misinterpreted as abrasive, rude, or insensitive behavior. We also see chronic lying when perception by others is endangered, bossy and controlling behavior when engaging others, perfectionism and what I call the "I Suck Filter," which I will explain in detail in a later post!
These are the individuals that so desperately want to have relationships and be accepted, but they are painfully lacking the skills to secure them. In their attempts to over compensate for their perceived inadequacy, they drive away the very individuals they are desperately longing to engage. They are drawn to much older or much younger individuals, but struggle with same aged peers. They are absolutely brilliant and often have the best of the psychs snowed, as their ability to mask and pretend to be just fine is highly developed, yet they struggle with the simplest of decisions, rarely considering outcomes and negative consequences. Attention span in non-preferred activities is a continual struggle, and conversations are typically revolving around their limited topic(s) of interest. If a topic shift happens, they are quick to revert to the previous topic, where their expertise on the subject leaves them in a rare feeling of control and confidence. It is often commented that they are like talking to an encyclopedia, with incredible knowledge on specific topics and often the source of untold volumes of sometimes meaningless data. They often experience difficulty concluding conversations and don't know effectively when to dismiss themselves. And I am just exposing the tip of the iceberg. There is much more hidden beneath this surface that rarely sees the light of day. We will continue to discuss many more characteristics causing difficulty in coming posts.
Now, you might be saying to yourself that many people have these characteristics, but that doesn't necessarily mean they have AS. That's correct. However, there is usually a family history of spectrum disorder and these characteristics impede long-term, independent living, ability to maintain employment, and often lead to chronic depression and suicidal ideation as continual social and emotional failures mount. Now that is not just your typical, run of the mill quirky dude!
So you are likely wondering why there is no diagnostic criteria for this other subset I am referring to, and I'd like to address that thought. I can tell you first hand that growing up, I never told others what I was actually thinking, as I feared they would think I was crazy and lock me up! I also feared the worst, which I considered to be rejection of any kind, if I was noted to be different or strange. For the majority of my life, I thought I was the only person experiencing what I lived. As I got better and began working with individuals with ASD's, I realized there were astounding numbers of individuals who thought exactly as I did, but they didn't tell anyone either, least of all their psychs! Yet as I began to share my thoughts and experiences with others, they would come forward telling me of their parallel lives, and the inability for others (lay people and professionals alike) to understand and assist them. That's when I began to realize there was more to this and I had better start paying attention to the details being shared by myself and others, to draw comparisons and hopefully identify some semblance of reason and understanding for the otherwise unwelcome behaviors we manage to consistently engage in.
What I am hoping to do is share some stories and examples that might help the outsider put themselves in our shoes or frame of reference. Perhaps then, it will be easier to not only understand, but hopefully foresee and help prevent future difficulties. So, back to the original topic at hand, let's take a look at anxiety and SID, and the role they play in AS.
Imagine yourself in downtown Memphis. It's 3:00am and the streets are dark and empty. You're walking alone and there are no others on the streets within view. Suddenly, a large man appears and starts rushing towards you with a gun. What happens to your anxiety level? It goes through the roof as your adrenaline begins to course through your veins. Your sensory system becomes heightened and you are more acutely aware of your environment. You hear every pin drop, you notice every movement in your periphery. Your heart races and your breathing becomes quick and more shallow as you abruptly make your fight or flight decision.
Whether you chose to run or fight, there's no question you would not be making the best decisions right about this time. This also would not be the best time to start teaching you a new skill such as calculus! To top it all off, when you finally arrive home, with your mind still reeling from the event and adrenaline not yet calmed, you are greeted at the door by an angry spouse who says heatedly, "I can't believe you didn't clean up the kitchen before you left." Now I don't think I need to explain that there's a good possibility your spouse got slammed in response to that greeting! Even though your spouse had no idea what you had just experienced, your nerves were already over the edge and it took little to nothing to send you the rest of the way over the cliff! When looking at the whole situation in context, understandably so.
What I think many do not realized is that most of us with AS stay in fight or flight mode most, if not all the time! It doesn't take a dangerous situation for our adrenaline to course. Our sensory systems are usually hyper aware, and as our anxiety rises, our sensory issues increase, which in turn causes our anxiety to rise, and so on, and so on. The vicious cycle continues and as we reach the proverbial edge of our emotional cliff, other issues such as OCD, paranoia, anger and rage rise commensurately, even though there may be no external reason for such.
These continual, emotional and physiological influences have dramatic affects on our ability to make decisions, learn, effectively communicate, build relationships and maintain stable emotional self regulation. Add to the concoction the fact that we are often driven by acceptance and the perceptions others have of us, and we are headed toward disaster. Any of these issues in their own right can be debilitating. Couple all of these with the stress caused by wearing a mask, having the need to maintain the false front that we have it all together and all is well, and meltdown is emanant.
Behavioral manifestations of fight-or-flight response in Wikipedia state, "In prehistoric times when the fight or flight response evolved, fight was manifested in aggressive, combative behavior and flight was manifested by fleeing potentially threatening situations, such as being confronted by a predator. In current times, these responses persist, but fight and flight responses have assumed a wider range of behaviors. For example, the fight response may be manifested in angry, argumentative behavior, and the flight response may be manifested through social withdrawal, substance abuse, and even television viewing (Friedman & Silver 2007)."
What we often see in those with AS appears to be irresponsible and somewhat "bratty" behavior, sometimes inappropriately perceived as purposeful or defiant. Often argumentative and seemingly egotistical, know-it-all type attitudes prevail, characterized by defensiveness, anger, or rage when challenged or exposed. Marked lack of control with emotional regulation, impulsivity and inability to de-escalate when overwhelmed.
I like to compare those with AS to a pressure cooker. Let's say you put a pot roast into a pressure cooker and go to work, leaving it for 8-10 hours building pressure. When you come home and remove the lid, it will explode and you'll have pot roast on the ceiling! If done correctly, you put a pot roast in and ever few hours, you let off a little steam. The pot roast still cooks all day under pressure, but relieving the pressure every few hours will keep the cooker from exploding and getting pot roast on your ceiling.
Those with AS are similar. Our SID and anxiety are the pressure cooker, which keep us in fight or flight mode. As the day wears, we continue to build steam and pressure and once we reach the edge of the cliff, it takes very little, if anything, to push us over. To the unknowing bystander or intercepter of our wrath, we appear to blow for absolutely no reason and be highly volatile emotionally. We appear to have 2 moods, everything is great, and OMG you are so dead! What is generally not realized is that sensory overload, heightened anxiety, OCD and paranoia have been steadily increasing pressure, leading up the the eventual eruption. Just as with the pressure cooker, those with AS can also relieve the pressure by engaging in sensory activities every few hours throughout the day. This is letting off the steam, so to speak, preventing a potential future blow. Unfortunately, most of us do not realize we are in the explosive danger zone emotionally, until it's too late and there's no turning back. The goal is to prevent the explosions, not deal with the aftermath.
From the outside looking in, it's important to realize that we are very much like that pressure cooker, and at any given time, we can have varying amounts of pressure building. You might just be the lucky one who arrives on the scene, just in time for us to explode! It's not personal! It has nothing to do with you, though we often like to blame everyone else for our difficulties. That's part of AS too, being the victim and not taking responsibility for our own actions and involvement.
So, before you jump the case of someone who has AS and has exploded, try to consider how you would have felt having been just accosted with adrenaline raging. How easy would it be for you to maintain a calm, cool, and collected responses? Remember, this is not something typically within their control. This is a medical issue, that has neurological consequences and behavioral outcomes. The behaviors we often exhibit are consequences of the neurological and central nervous system problems we are experiencing, and contrary to popular belief, NOT within our control. We have to be taught how to de-escalate, process emotions, and recognize when we are escalating to begin with. It's a very long and difficult process to learn and overcome, but it's possible. Try to have patience with us in the process!
Next post we will look at the "I Suck Filter" and the damaging role it plays in our lives.
Look forward to sharing more with you soon!
Laura :)