Tuesday, June 23, 2009

Common Denominators In Autism Recovery

Thoughtful House graph of autism epidemicImage via Wikipedia

Every time I teach workshops, conferences, or individuals parent trainings, I always make a point to bring to the forefront what I feel is one of the most overlooked issues in autism treatment. What are the common denominators in autism recovery? With the epidemic of autism soaring out of control, as shown on the chart to the right, we have to start focusing more on what's working and why, to insure positive outcomes for children being affected.

I recently taught a workshop where several families, service providers, and advocates were present. We covered all the topics such as biomedical intervention, dietary intervention, functional communication, behavior modification, and IDEA law & navigating IEP meetings. Most of those in attendance were on the same page, yet there were some who no matter what was said, had a reason they would not be able to do what was being suggested. No matter what objections that were thrown out, I could always come up with a feasible solution to eliminate the problem, until that is, the next one was thrown out, to start all over again. In the end, and for many differing reasons, they had convinced themselves they did not have what it takes to help their kids and could only be dependent on what could be provided.

After years of working with families struggling with autism, there are a few things that have become very identifiable trends. I've decided to start hitting these head on, as someone needs to be truthful with families, even when it's not the popular thing to do or say! Let me very clearly say, before we go any further, this is NOT meant to berate parents, incite guilt, or try to make anyone feel inadequate in any way. Most families dealing with ASD are struggling enough without us adding to that! This is also NOT a blanket statement that applies to everyone, as I can see the hair on the back of some necks starting to stand up, even as I type! What this post is intended to do is create awareness and education about a trend we see happening that is very frustrating and sad, in hopes that we can effectively address it for families in need. This post is also intended to encourage parents or caregivers to seek out the needed training to help their children and that most of you DO have what it takes to help your child make significant progress! There is NO COST training, education, and help available to take you as deep as you want to go into the education and treatment of your loved one with autism, as well as the support to help you traverse the difficult parts of the journey.

So what are the common denominators in the recovery of autism? Well, there are a few we will cover throughout the next few blogs, but by far, the most important of them all is parents who become the experts and have a can-do attitude. These are the parents who take the stance that they will do whatever it takes to insure their child has access to what is needed. They are willing to study until their eyes can no longer read, turn over every rock in the path, beg on the street corners for funding, and take on the big fish when it comes for fighting and advocating for their child. They often know much more than the physicians and professionals, and become the driving force behind the interventions for their children and the correct implementation of such.

This is especially important in rural areas, where service provision is extremely limited. Families often find themselves holding the bag when it comes to intervention, or lack thereof, yet need to be encouraged that no matter how dim the journey appears, there is help available to educate and train them to do many of these services themselves, insuring access to what is needed.

Go to an autism conference such as Autism One or DAN? and you will find hundreds, if not thousands of these families, which is why they are usually there, to dig up more useful information to help their child. Outside the autism circles though, that dynamic changes, and sadly, a small percentage of the families on the street are meeting this critical criteria.

I had a reporter ask me some time ago what our recovery rate was. I told him I was not really able to tell him the way he wanted to know. He was looking at statistics only. How many families have you served total and how many recovered kids do you have? Only it's not that simple. If we say we served 100 individuals (just grabbing easy round numbers here) with autism, 10 have made significant progress, and 4 have recovered, that would not look so good. Yet it has to be realized that those numbers are not quite as cut and dry as that. Out of those 100 individuals, typically only 10 or 11 of them actually did even a part of what was suggested. So needless to say, 4 out of 100 would not really be a fair statistic.

What we have found is that an enormous percentage of families fail in recovering their children because they get overwhelmed and don't follow through. Now before I get any angry letters from those of you who have busted your butts and your child has still not progressed the way you would like, let me say there are definitely exceptions to this rule, so this is not a blanket statement. However, from what I have seen first hand, the majority of the children I have worked with could be doing significantly better if the parents were driving the bus, rather than traveling as passengers. In all fairness, many times the parents are spectrum themselves, and already overwhelmed and in shut down mode. That's not their fault, yet it often impacts the ability to provide appropriate and consistent interventions as needed and stay the course. Far too often we see families give up just short of what would be a breakthrough, if they had just continued. Then the interventions themselves, such as biomedical, dietary, or behavioral interventions, get the bad wrap for not working, when in essence they were not utilized as directed and often stopped! In contrast, those who did follow through see remarkable results in most cases.

So where does this leave us? In a rather uncomfortable position, I'm afraid. In the workshop I referred to above, I decided to take the pro-active approach to hitting the problem head on. After numerous attempts at overcoming objections, I finally closed the conversation by saying the following:

"Here's the bottom line. Kids are recovering from autism every single day. We know every child is different and every child needs a specific protocol designed to meet the particular and individuals needs. But we also know that for every time we hear reasons why something can't be done, we also meet some parent with the same situations doing it very successfully. Yes, it's very difficult. No, it's not a walk in the park. Often 3-6 years of intensive intervention, or more, can be required to get these children where they need to go and that's devastating emotionally, physically, and financially. Yet, it's also very temporary and if it yields incredible improvement or recovery in the end, is that not worth it? We can do anything we choose to if we set our minds to it, make the decision to just do it, and we realize it's not forever, no matter how uncomfortable it is. What I still have difficulty understanding though, is that many will not commit to even 6 months of hard work to improve a child, yet by default, they are committing to a lifetime of work and dependency if these children are not treated appropriately. I am not trying to place blame or cause guilt, yet it has to be pointed out that this is a choice, and by not making it, in essence, you have chosen."

Yeah, I know. Kind of a hard line, but here's how I am looking at it. Someone has to tell the truth! Doing nothing yields nothing. PERIOD! These kids don't get better by osmosis, it takes a tremendous amount of time and hard work and there are no shortcuts, at least not yet! Though many get very angry with me when I tell them what they don't want to hear, eventually, many of them will come to terms with what has to be done and move forward. Sometimes in days, sometimes in weeks, and sometimes it's years. The hard part for me is knowing time is of the essence and these remarkable children don't have time, which is why I have become more direct and to the point. Hopefully, in hindsight, most will realize I'm trying to do them, and their children, a favor that could have significant impact! If it saves just one child, it's worth the risk of making someone mad!

There is also the issue of finances, that were brought to my attention today by a reader. I honestly don't think most realize that they have access to the tools, education, and training needed to provide many of the sought after services themselves, and often more effectively! This also alleviates the long-standing problem of bankrupted parents, mortgaging everything they have to provide for their child.

Many seek services through school systems and/or private insurance, yet when they have difficulty accessing the services in the amounts needed, they feel discouraged, defeated, and often give up, not knowing what else to do. Our intention is to encourage those of you finding yourselves in these circumstances that there is HOPE! Though it's not uncommon to think we don't have the skills or expertise to make a difference working with our children, the truth is that many parents have dramatically improved and/or even recovered their children by taking charge of the treatment and interventions, and gaining the education necessary to do much of this work themselves. The process is often quite wobbly in the beginning, yet with time and progress, with positive visible outcomes and increased amounts of education, parents rise to feeling empowered, understanding what has to be done, and figuring out how to do it!

We live in a time that unfortunately is putting the bulk of the responsibility (both time and resources) on the backs of the families, who are already strained beyond belief. If we can identify the characterists that are common among those who have recovered children with autism, then perhaps we have somewhat of a map, to encourage parents to gain these skills, that they might do the same!

So, in closing, what are the main characteristics of the parents who succeed in this challenge?

1) Positive attitude and determination that they will do WHATEVER it takes to help their child and they will NEVER give up!

2) Becoming the expert and a research maniac! Reading everything you can get your hands on and becoming more of an expert that those who are treating your child! Let's face it, no one knows your child as well as you and if you don't know what good speech therapy looks like for a child with autism, how do you know if it's being done correctly?

3) Driving the treatment bus! Be in control of your child's treatment program, in all areas. Know enough about all your child's programs to be able to train the professionals and tweak programs that are not quite right. If you are depending on the school system, the physicians, or the professional service providers to recover your child, you are in BIG TROUBLE! Even the most skilled providers are being led by YOU! It's also critical to point out that continuity across all settings is paramount. Though I advocate for an excellent school program and interventions, at the end of the day, I treat it like glorified daycare and make sure that I am doing everything that needs to be done at home, just in case!

4) Involve yourself with other like-minded parents, who are also the experts and driving their child's treatment bus! I can say without any doubt that I have learned more from parents along this journey than from the professionals, and more often than not, I ended up training the professionals to work appropriately with my children!

We will look at some of the other common denominators to recovery in autism in our next blog post. This is an evolving blog, and will cover the most pressing issues we see within our practice of treating children at the Autism Solution Center, Inc. If you have suggestions for a topic or questions you would like to have answered, please email them to encourmin@yahoo.com.

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Sunday, June 14, 2009

April Is Autism Awareness Month

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!

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