Thursday, August 27, 2009
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
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!
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
Image via WikipediaWhen talking to family members of those who have Asperger's (AS), one point I try to make perfectly clear is the vicious cycle within Asperger's of anxiety and sensory integration dysfunction (SID). They drive just about everything we experience, to a degree most do not understand. Anxiety and SID feed on one another and contribute significantly to other symptoms such as OCD, paranoia and rage. I want to give you some examples, to see if this makes any more sense and helps you to understand our functioning any better.
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!