April Is Autism Awareness Month
With April being right around the corner, and also being Autism Awareness Month, we thought this might be a good time to consider ways we can educate the community on autism spectrum disorders.
It seems as though most of the nonprofit organizations I deal with on a daily basis, including ourselves, are constantly in fundraising mode, and burning out quickly from both over marketing and lack of fresh new ideas. While there are more autism organizations than ever seeking support, there still seems to be a lack in community education on anything other than the basics, such as early diagnosis and intervention. We often have to stay so tied up in fundraising mode, that we lack the necessary time and manpower to get out there and appropriately educate the community on critical autism issues.
Most people today are familiar with the word autism because of the media attention it has been getting lately with individuals like Jenny McCarthy and Jim Carrey driving the awareness train. Yet, as I talk to people within the community, I'm not noticing an increase in education, other than the fact that the rates are epidemic and there is rumor of a link to vaccines and mercury. Very few are still aware that AUTISM IS TREATABLE, can be diagnosed as early as 12 months, and requires an intensive, one-on-one, multi-modal approach to intervention, and the earlier, the better.
I find myself in a rather constant state of frustration, as I work with families who deal with uneducated teachers and school officials who still maintain "these behaviors could be eliminated if those horrible parents would just appropriately discipline their kids"! So, they continue to discipline children for bio-neurologically-based issues, and the behaviors continue on without change. I can't help but wonder if at some point they will remember that doing the same thing, that has proven to be ineffective, will not eventually produce a different result!
I also stand in awe as I consider the medical community as a whole, who for the most part, continue to report in an unwavering fashion that these crazy diets, biomedical interventions, and other "unproven" interventions are both "last ditch efforts for desperate parents," as well as potentially dangerous for the individuals being treated. Talk about a lack of scientific evidence to support what you espouse. Geez!
My only response is HOGWASH! I'm a bottom line kind of gal, and the bottom line here is that KIDS ARE RECOVERING FROM AUTISM ON A DAILY BASIS EMPLOYING MANY OF THESE SO-CALLED "UNFOUNDED" INTERVENTIONS!
Yes, there is no question many more studies need to be done, yet they also have to be funded and I don't currently see CDC, NIH, or the AMA chomping at the bit to do so. It's much safer for the big boys to simply look at genetics. I mean really, what would happen when us "crazy parents" are actually able prove what we preach? Well, a whole lot of back peddling and some serious damage control at a minimum!
Here's my take on the whole situation. In my time working within this field, I have found that you can literally make studies say ANYTHING you want them to! There are no unflawed studies! Again, let's get to the bottom line. Bottom line is this: Is what the medical community currently doing for autism working? The answer to that question is an overwhelming NO, as we are not seeing recovered children come from these confines. Yet, this is the very community that cries foul when a simple dietary intervention is put into place that has proven effective in thousands of children, many of whom have recovered. Can someone please tell me the harm in trying a diet that removes casein and gluten, as long as the nutrients that would be missed in the dairy products are being appropriately replaced? Yet, some of the brightest physicians I work with will blatantly tell parents not to try this diet, with equally lacking proof that their stance is correct! Yet, the diet is yielding significant anecdotal evidence of tremendous efficacy, which is why more and more parents are leaning in this direction after making little to no progress through their regular doctors.
All this to say, THIS IS TRULY NUTS! We are losing a large part of this generation to a disorder, that for the most part, is not only preventable, but also very treatable, in most cases. What I'm beginning to see is the wall of education, logic and analytical thinking boxing in the very people it was meant to expand. Don't get me wrong, education is vastly important, as that gives us the tools to move forward into unexplored areas. Yet, the very tool that propels us forward, can also be the very tool that can shackle us into bondage when wielded incorrectly. Learning the rules within a given box is very important. However, equally important is never forgetting that there are MANY things that exist outside the box, and therefore we CANNOT limit our focus to only those things within.
Here are a couple of the comments I feel compelled to say to anyone arguing these points:
1) I like to draw a circle on a piece of paper with a dot in the very center. This circle represents ALL of the possible knowledge that exists in the entire universe, both known, and unknown.
If I were to ask you to start at that dot in the center and draw a pie piece that represents the amount of knowledge you think you have amassed in your lifetime, how large of a pie piece would that be?
So let's say they are extremely over confident and they draw a pie piece that represents 25%, which would be ridiculous, yet it happens!
My question becomes, "Then how do you know that what I am talking about doesn't exist over here in the areas you do not yet know?"
2) At what point did you realize that you knew everything, and therefore had nothing else you needed to learn?
Bottom line, both of these questions expose only one thing called EGO! Gang, the day we wake up and think we are smarter than everyone else and we have nothing else to learn, is the day we need to stay home and never come back! EGO and politics are the two forces driving these debates within the autism community, and it's fine time the truth started coming out in BOLD PRINT for all to clearly see.
So, you say, "Aren't you stepping on some toes with comments like that? To which I answer, "Absolutely, and it's about time!" Listen, not rocking the boat and tiptoeing around has only increased this preventable epidemic we currently know as autism spectrum disorder. There are many incredibly flawed studies out there that are heralded as undeniable truth, yet what do we find when we dig deeper? Wait....... what was that? You're saying you take the synopsis of these studies at face value and you have not done the due diligence to dig and make sure those facts were credible? FOR SHAME! That's like hearing a dirty rumor about a trusted friend and continuing to spread it to everyone you know, even arguing the point, when you have no evidence to support your side of the story, other than hearsay.
Case in point. Consider the paraphrased announcement by CDC that stated a study had been completed that once and for all proved there was no tie between vaccinations and autism. Well, I suppose that comment COULD be said based on the study done, however, we're not really getting the whole truth. Did anyone ever bother to disclose that the study was conducted in Denmark, not within the US? OK, so let me make sure I understand. The study was conducted in another country, on a different population of people, who have different dietary standards, different environmental exposure, and are not charged with the same vaccine schedule our children are exposed to here in the US? WOW - can someone please tell me what's wrong with that statement? Ummm..... there might be a little bit of a problem with the population and control in that study, you think?
Unfortunately, most are more willing to spread unsubstantiated information than they are to do the homework necessary to make an educated decision on whether or not the information is actually fact. And don't get me wrong, I have been guilty of the same many times. Yet, the difference here is that when confronted, I'm willing to back down and say I blew it and didn't do my homework, rather than stick to my guns at any cost. Especially when that cost is not mine, but the cost of a child who is losing their potential to live an independent, joyful live. We are ALL wrong at some time or another. Yep, I said it! To err is human, but to be perfect often requires a doctorate!
I hope that at some point in the very near future, we are all willing to admit that the more we know, the more we know we don't know a darned thing and have a great deal to yet learn. If you can't say that, STAY HOME! You're likely doing as much harm as good.
The one thing I have learned while on this journey is that EVERY SINGLE CHILD IS AS DIFFERENT AS THEIR FINGERPRINT! There are no two children the same, therefore there is NO one-sized-fits-all answer to autism. Though many believe they have found that "silver bullet," so to speak, and though it may work for some, there will always be those that do not respond to any one given intervention. This leaves us recognizing we had better be willing to look outside our circle of knowledge, if we have tried everything we know, and yet it has not yielded results for a particular subset of children.
One of the main reasons I opened the center was to provide EVERYTHING under one roof, and at NO COST to families in need. Why? Specifically for the reasons stated above. There are literally thousands of different interventions out there, some proven, some not. By the time families have been through several of these with individual practitioners, and are now financially devastated, and they no longer have the means to pursue what else is available that could provide answers they are looking for. So how do you choose? Eeny, meeny, miney mo? Heaven forbid! Though I see that far too often as well.
Educating families and teaching them to become the experts is the key. These families know their children better than any professional in the field. By educating the families about ALL the different modalities of treatment, and giving them the tools to make EDUCATED DECISIONS about what interventions might be best for their children's specific needs, we are empowering families to take part and responsibility in their own child's recovery process. Do a little homework and look at the children who are being called recovered, or indistinguishable from their neuro-typical peers. What are the few BLATANT common denominators?
1) Educated parents, and I don't necessarily mean college education. These were ALL families that took it upon themselves to research, study, and keep digging until THEY found what worked for their kids. They became a vital part of the "treatment team," providing the critical, educated input necessary to drive the treatment process. The physicians and professionals were a critical part of the team as well, providing the necessary guidance, and acting as the medically educated rudder, steering a boat sailing on some very rough seas. Yet, without the other team members on board identifying potential rocks, sand bars, and other obstacles in the water's path, that rudder doesn't do much good. IT TAKES A TEAM EFFORT. If all it took was a rudder, there would be no need for sails, or other instruments, that all play EQUALLY IMPORTANT parts in driving the process.
2) A multi-modal approach. Looking at the children who have recovered, one things you quickly find is that many of them implemented a lot of different interventions, yet there were also MANY common denominators, including: biomedical intervention, dietary intervention, speech therapy, occupational therapy, sensory integration therapy, applied behavior analysis (ABA), and several others.
We know there are safe, common denominators that work for many children that provide a great place of beginning, yet every individual journey must be "tweaked" to meet the needs of each specific child in question.
Here's a strong suggestion I would make for your future journey through autism spectrum disorders. When dealing with ANYONE, whether a lay person or a professional, ask yourself, and them, the following questions:
1) Where did you learn what you know about ASD's? Was it from an article in a medical journal, in school from an instructor who was espousing opinions, based on information from CDC or AMA? Was it simply opinion, or fact? Have you read, in their entirety, the studies in question, not just abstracts and the final conclusions from what could be biased parties?
2) Can you please explain to me why you are advising me for or against implementation of any particular intervention? How many patients have you specifically guided through this particular journey to see first hand results?
Let me expand on this one. They should be able to explain to you the benefits, potential drawbacks, and expectations of the intervention they are for or against, in enough detail that you are satisfied they are skilled in their assessment. But wait, we're not finished yet. THEN....... your responsibility as a parent is to then go RESEARCH that information to insure they are correct. Why? Bottom line, I would hate to put all my eggs into any one basket only to find out, often too late, that my basket was extremely flawed.
I tell EVERY parent that I work with that my job is to expose them to new information and educate them based on what I have seen over the years. Don't take my word for it, DO YOUR HOMEWORK! My job is not to scare them, convince them, or anything else. If fear is the main motivation being used by someone to move you in a particular direction, you had better start researching. That usually means they do not have enough information to support their end of the argument with facts.
The bottom line here is that one of the greatest objections I hear from within the professional community is that there are lacking "peer-reviewed, scientific studies and evidence" to support many of the interventions being implemented, and I wholly agree! There is no question that studies are lacking, so how about putting your money where your mouth is and funding some studies on the areas in question? Problem is, studies take years to complete, and OUR CHILDREN DO NOT HAVE THAT KIND OF TIME TO WASTE! They need help now! There are many studies out there supporting these interventions, yet they are picked apart. To be completely honest, ANY study can be flawed and picked apart. We can make studies say pretty much anything we want them to. At the end of the day, we MUST ask this question. Study or no study, IS WHAT WE ARE DOING WORKING AND ARE THE CHILDREN GETTING BETTER? If not, I don't care what your studies say, it's time to change directions. Anecdotal evidence can be very powerful and is the first step in any long-term study.
Conclusion: DO YOUR HOMEWORK! Don't trust your child's future to the opinions of ANYONE without first doing your own research to insure they are correct. After all, what if they are wrong? Are you willing to risk your child's outcome on that? I certainly hope not!
Here's my take on the whole situation. In my time working within this field, I have found that you can literally make studies say ANYTHING you want them to! There are no unflawed studies! Again, let's get to the bottom line. Bottom line is this: Is what the medical community currently doing for autism working? The answer to that question is an overwhelming NO, as we are not seeing recovered children come from these confines. Yet, this is the very community that cries foul when a simple dietary intervention is put into place that has proven effective in thousands of children, many of whom have recovered. Can someone please tell me the harm in trying a diet that removes casein and gluten, as long as the nutrients that would be missed in the dairy products are being appropriately replaced? Yet, some of the brightest physicians I work with will blatantly tell parents not to try this diet, with equally lacking proof that their stance is correct! Yet, the diet is yielding significant anecdotal evidence of tremendous efficacy, which is why more and more parents are leaning in this direction after making little to no progress through their regular doctors.
All this to say, THIS IS TRULY NUTS! We are losing a large part of this generation to a disorder, that for the most part, is not only preventable, but also very treatable, in most cases. What I'm beginning to see is the wall of education, logic and analytical thinking boxing in the very people it was meant to expand. Don't get me wrong, education is vastly important, as that gives us the tools to move forward into unexplored areas. Yet, the very tool that propels us forward, can also be the very tool that can shackle us into bondage when wielded incorrectly. Learning the rules within a given box is very important. However, equally important is never forgetting that there are MANY things that exist outside the box, and therefore we CANNOT limit our focus to only those things within.
Here are a couple of the comments I feel compelled to say to anyone arguing these points:
1) I like to draw a circle on a piece of paper with a dot in the very center. This circle represents ALL of the possible knowledge that exists in the entire universe, both known, and unknown.
If I were to ask you to start at that dot in the center and draw a pie piece that represents the amount of knowledge you think you have amassed in your lifetime, how large of a pie piece would that be?
So let's say they are extremely over confident and they draw a pie piece that represents 25%, which would be ridiculous, yet it happens!
My question becomes, "Then how do you know that what I am talking about doesn't exist over here in the areas you do not yet know?"
2) At what point did you realize that you knew everything, and therefore had nothing else you needed to learn?
Bottom line, both of these questions expose only one thing called EGO! Gang, the day we wake up and think we are smarter than everyone else and we have nothing else to learn, is the day we need to stay home and never come back! EGO and politics are the two forces driving these debates within the autism community, and it's fine time the truth started coming out in BOLD PRINT for all to clearly see.
So, you say, "Aren't you stepping on some toes with comments like that? To which I answer, "Absolutely, and it's about time!" Listen, not rocking the boat and tiptoeing around has only increased this preventable epidemic we currently know as autism spectrum disorder. There are many incredibly flawed studies out there that are heralded as undeniable truth, yet what do we find when we dig deeper? Wait....... what was that? You're saying you take the synopsis of these studies at face value and you have not done the due diligence to dig and make sure those facts were credible? FOR SHAME! That's like hearing a dirty rumor about a trusted friend and continuing to spread it to everyone you know, even arguing the point, when you have no evidence to support your side of the story, other than hearsay.
Case in point. Consider the paraphrased announcement by CDC that stated a study had been completed that once and for all proved there was no tie between vaccinations and autism. Well, I suppose that comment COULD be said based on the study done, however, we're not really getting the whole truth. Did anyone ever bother to disclose that the study was conducted in Denmark, not within the US? OK, so let me make sure I understand. The study was conducted in another country, on a different population of people, who have different dietary standards, different environmental exposure, and are not charged with the same vaccine schedule our children are exposed to here in the US? WOW - can someone please tell me what's wrong with that statement? Ummm..... there might be a little bit of a problem with the population and control in that study, you think?
Unfortunately, most are more willing to spread unsubstantiated information than they are to do the homework necessary to make an educated decision on whether or not the information is actually fact. And don't get me wrong, I have been guilty of the same many times. Yet, the difference here is that when confronted, I'm willing to back down and say I blew it and didn't do my homework, rather than stick to my guns at any cost. Especially when that cost is not mine, but the cost of a child who is losing their potential to live an independent, joyful live. We are ALL wrong at some time or another. Yep, I said it! To err is human, but to be perfect often requires a doctorate!
I hope that at some point in the very near future, we are all willing to admit that the more we know, the more we know we don't know a darned thing and have a great deal to yet learn. If you can't say that, STAY HOME! You're likely doing as much harm as good.
The one thing I have learned while on this journey is that EVERY SINGLE CHILD IS AS DIFFERENT AS THEIR FINGERPRINT! There are no two children the same, therefore there is NO one-sized-fits-all answer to autism. Though many believe they have found that "silver bullet," so to speak, and though it may work for some, there will always be those that do not respond to any one given intervention. This leaves us recognizing we had better be willing to look outside our circle of knowledge, if we have tried everything we know, and yet it has not yielded results for a particular subset of children.
One of the main reasons I opened the center was to provide EVERYTHING under one roof, and at NO COST to families in need. Why? Specifically for the reasons stated above. There are literally thousands of different interventions out there, some proven, some not. By the time families have been through several of these with individual practitioners, and are now financially devastated, and they no longer have the means to pursue what else is available that could provide answers they are looking for. So how do you choose? Eeny, meeny, miney mo? Heaven forbid! Though I see that far too often as well.
Educating families and teaching them to become the experts is the key. These families know their children better than any professional in the field. By educating the families about ALL the different modalities of treatment, and giving them the tools to make EDUCATED DECISIONS about what interventions might be best for their children's specific needs, we are empowering families to take part and responsibility in their own child's recovery process. Do a little homework and look at the children who are being called recovered, or indistinguishable from their neuro-typical peers. What are the few BLATANT common denominators?
1) Educated parents, and I don't necessarily mean college education. These were ALL families that took it upon themselves to research, study, and keep digging until THEY found what worked for their kids. They became a vital part of the "treatment team," providing the critical, educated input necessary to drive the treatment process. The physicians and professionals were a critical part of the team as well, providing the necessary guidance, and acting as the medically educated rudder, steering a boat sailing on some very rough seas. Yet, without the other team members on board identifying potential rocks, sand bars, and other obstacles in the water's path, that rudder doesn't do much good. IT TAKES A TEAM EFFORT. If all it took was a rudder, there would be no need for sails, or other instruments, that all play EQUALLY IMPORTANT parts in driving the process.
2) A multi-modal approach. Looking at the children who have recovered, one things you quickly find is that many of them implemented a lot of different interventions, yet there were also MANY common denominators, including: biomedical intervention, dietary intervention, speech therapy, occupational therapy, sensory integration therapy, applied behavior analysis (ABA), and several others.
We know there are safe, common denominators that work for many children that provide a great place of beginning, yet every individual journey must be "tweaked" to meet the needs of each specific child in question.
Here's a strong suggestion I would make for your future journey through autism spectrum disorders. When dealing with ANYONE, whether a lay person or a professional, ask yourself, and them, the following questions:
1) Where did you learn what you know about ASD's? Was it from an article in a medical journal, in school from an instructor who was espousing opinions, based on information from CDC or AMA? Was it simply opinion, or fact? Have you read, in their entirety, the studies in question, not just abstracts and the final conclusions from what could be biased parties?
2) Can you please explain to me why you are advising me for or against implementation of any particular intervention? How many patients have you specifically guided through this particular journey to see first hand results?
Let me expand on this one. They should be able to explain to you the benefits, potential drawbacks, and expectations of the intervention they are for or against, in enough detail that you are satisfied they are skilled in their assessment. But wait, we're not finished yet. THEN....... your responsibility as a parent is to then go RESEARCH that information to insure they are correct. Why? Bottom line, I would hate to put all my eggs into any one basket only to find out, often too late, that my basket was extremely flawed.
I tell EVERY parent that I work with that my job is to expose them to new information and educate them based on what I have seen over the years. Don't take my word for it, DO YOUR HOMEWORK! My job is not to scare them, convince them, or anything else. If fear is the main motivation being used by someone to move you in a particular direction, you had better start researching. That usually means they do not have enough information to support their end of the argument with facts.
The bottom line here is that one of the greatest objections I hear from within the professional community is that there are lacking "peer-reviewed, scientific studies and evidence" to support many of the interventions being implemented, and I wholly agree! There is no question that studies are lacking, so how about putting your money where your mouth is and funding some studies on the areas in question? Problem is, studies take years to complete, and OUR CHILDREN DO NOT HAVE THAT KIND OF TIME TO WASTE! They need help now! There are many studies out there supporting these interventions, yet they are picked apart. To be completely honest, ANY study can be flawed and picked apart. We can make studies say pretty much anything we want them to. At the end of the day, we MUST ask this question. Study or no study, IS WHAT WE ARE DOING WORKING AND ARE THE CHILDREN GETTING BETTER? If not, I don't care what your studies say, it's time to change directions. Anecdotal evidence can be very powerful and is the first step in any long-term study.
Conclusion: DO YOUR HOMEWORK! Don't trust your child's future to the opinions of ANYONE without first doing your own research to insure they are correct. After all, what if they are wrong? Are you willing to risk your child's outcome on that? I certainly hope not!
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