Your Child’s Autism Diagnosis
Navigating your life and a family is tough enough. So when your child is hurting the perfect life you were striving for is turned upside down. Today’s podcast deals with the initial diagnosis, what it means and tactic to help you get over the initial shock and on to creating solutions for your child and family.
The Autism Diagnosis
Aside from his dedication in research and participation in the medical community, Dr. Bogner has an amazing way to console and help families take charge of a diagnosis. His ability to talk through the scientific jargon and create a plan for your child far surpasses the traditional approach any recovery center can provide.
EP2 – The Autism Diagnosis – Dr. Bogner Health Podcast
So one of the worst things… Well, there’s probably a lot of things in your life that you can hear about your child or a loved one, but I know as new parents, young parents, one of the worst things you can hear after you’ve noticed specific changes that you can’t really identify, and in this day and age you’ve spent quite a bit of time searching Dr. Google and asking some friends here and there of people that might be able to offer you some advice, is learn that there’s something wrong with your child, and then go through the channels to get proper testing done, and then learning that they get a diagnosis with autism spectrum disorder. What does that mean?
So this week we’re going to talk a little bit more about going through that criteria. What does that… I called it at the time a sentencing, a life sentence for my family and my son, but what does that sentence mean? What does that diagnosis mean? And, now what are the next steps you should take? First of all,I’m going to start.
You need to take a real big exhale, and I think you need to hug your spouse and family members that are close to you and have your big cry, and go through… It might take you a day, it might take you a couple days, but go through the victim, the, “Why me?”, and, “What am I going to do? What’s this going to change on everything?”, and try to get a good night’s sleep, at least one or two of them.
And, go through your insurance and look at services, if you do have private care insurance or you do have public insurance. It’s going to be very important to, first of all, get yourself a journal and a folder and a pen or set of pens that work and start making phone calls and documenting who you talked to, the date and the time you talked to, and what was the result and what is the, I like to say the who does what by when. This person is going to send me information through the mail or they’re going to call me back on this day or that day and start to focus on accountability of most importantly yourself.
That’s I think one thing that you can control in this scenario is you need to make a decision is, am I going to play victim or am I going to be a solution provider? And believe you me, you are going to become…This is going to be a very, very interesting education path that you’re going to go on. The journey has no set timeline and it doesn’t have really any roads that are going to be all defined, and of course you have regular life and your work and your spouse and other things you used to do, and you have to determine where your value sets are and the course of action you’re going to take. And, the one thing you control is your actions and your responses, and the quicker that you realize that and understand that action actually requires some type of movement and some types of effort.
Not everything has to be financial, but you can do a lot by using your phone, using the internet, being diligent in what you’re requesting and be prepared to learn from a lot of mistakes and also be prepared to be let down by a lot of individuals because all truth be told, no one really gives a shit about your situation except you, maybe your spouse, and your family. Practitioners, everybody else, you are a number in a system. There is going to be empathy that’s going to be of course given to you into the scenario that you’re in, but no one’s really going to go back home into your sorrow and into your situation. And so, you have to get comfortable with that and you can’t turn some of that anger and that confusion and that disappointment outwards towards people. So, get a grip on yourself and understand that this is going to be a long journey and you’re going to be able to partake in some of the timing of it, but you’re not going to be able to control it solely. So Dr. Bogner, where do you start?
You and me, we’ve been through this. We have both boys, my boy is 17, about 15 years he was diagnosed, 15 years ago. And, what do you do? I didn’t know much about it being a physician. I was in a different profession. What is autism? So best person to ask, a pediatrician or his pediatrician, and the question is, what does your pediatrician know about autism? Do they treat this on a regular basis and what recommendations do they follow? And so, you’re in the hands of your pediatrician in regards to the future of your child, and the question is, what is recommended? What is the latest and greatest that conventional medicine offers? And, what resources does a pediatrician have to tap into that? And, that’sI think where it starts with the big problem for autism.
Another important part with your pediatrician is your relationship with them, how much they’re giving you to the time of the day. I don’t know how much time you need when you visit your pediatrician, how much they’re going to be talking and sharing and actually listening to you or not. These are going to be some deciding factors on how you make them a part of your team or look for others in regards to it. And then there’s also going to be, in my case, my son was vaccine damaged. We have proof of that, we went through the process, we know this specifically, but in the case of early on with his pediatrician, there was no way, shape, or form that was even plausible. And so, I had an old German guy that was pretty much getting close to the end of practice for himself, probably in his late 60s.
And, he just told me I was a complete buffoon and I was a conspiracy theorist and there’s no way that that is plausible and that we should just quit his practice. He doesn’t want to deal with us anymore. So, you can imagine that happening within the very first beginnings of a diagnosis with a child like that and getting reactions like that and someone that you’re reaching out for some help shows no empathy whatsoever, and in turn shows insult and is quick to judge and not inform or have a discussion. So, you have to consider those things too that might happen with your practitioner.
And if you look at what recommendations the pediatricians follow, it’s almost scary really because they follow a specific guideline after you receive the ICD-10 diagnosis or autism spectrum disorder and their specific guidelines that they follow, they don’t have time to listen and sit down and assess if there are gut problems, if your kid has constipation, if he doesn’t sleep at night, if they’re banging their head because of potentially a headache. And so, what they do is they follow these recommendations, and we can dive into that to go to the root. What does the CDC say about autism, for example? And if you look at that, they mentioned we want to maximize the function of the child for the quality of their life, but that’s just basically treating the symptoms and not looking for root cause. That’s like how I see it now with having dealt with thousands of parents or families affected with autism that it’s like an astronaut coming from space.
Their muscles are atrophied, that’s like saying conventional medicine, oh, let’s find you the perfect wheelchair that you can drive around with because you can’t walk, your muscles don’t work. Instead of saying, “Hey, we need to do some extensive physical therapy, get your nutrition plan to build up your muscles,” and that’s in my opinion, what alternative medicine has become, and it’s just called alternative medicine in the conventional way, but alternative medicine is really, in my opinion, the way to go with autism because otherwise there’s not much offered other than controlling the symptoms, improving the quality of the life, but not looking for a reason, and there must be a reason. If you look at the rates of autism from the 1990s until now, from one in 1,000 to now one in 27 boys or one in six children in this country with a developmental problem, there definitely is something there that the recommendations that are conventionally followed are not addressing.
And so, the CDC does mention that complimentary or alternative medicine might be an option for parents affected with autism, so they don’t say don’t do it, but they basically say, “Make sure it’s okay with your physician,” and so the physician follows conventional guidelines and the conventional guidelines, if you for example, look at up to date, that’s a system hospitals use and use the most current recommendations based on “evidence-based medicine” specifically says tests for yeast metabolites, gut permeability, heavy metals, trace elements, micronutrients and immune abnormalities are not indicated in the case of autism since there are no empiric data to support such analysis. So, that’s what the pediatrician reads, oh-
That’s from what year?
Well, that’s what they quote and up to date, that’s what the pediatricians follow, but if you look at the fine prints of what makes them say that, and in the quote a study is listed that suggested that, but that’s back referencing to the International Handbook on Autism, which was published in 1997. So, back when the autism rates were about one in 1,000 and when autism really just started to explode. Now we are, what, a quarter century later, we have so much data in regards to the microbiome, for example of autism. We have studies from Stanford, from Duke, we have huge meta analysis in regards to the gut microbiome and autism showing there’s a significant difference in the GI systems of autism. So, basically what conventional medicine is telling us is outdated and wrong and pediatricians are following these recommendations. And so, when the CDC says alternative medicine is maybe something that you should look into for your child with autism, if it’s okay with your physician. And so, that’s why there’s a lot of resistance in regards to the conventional pediatric work.
But, I want to influence on the fact or make note that this is subjective and this is going to be subjective that you should take if you were back in college or you were in school and you go to your professor and you ask them, they’re not the be all to end all of all the answers. They’re there based off of their training, they’ve met a certain criteria, they’ve taken tests, they’ve gotten a piece of paper that states that they should know the minimum amount of these things based on a standards that was set by some governing body. So, this is part of the journey that you’re going to go upon and I want to let you get back into this, but it’s important that you are going to become a larger educator yourself, Mr. or Mrs. Parent, as the advocate because now you are the core advocate of your child’s wellbeing and the changes that he’s going make on your journey.
So you have to keep in mind just like yourself, and again, this is where I stated earlier of not taking all of your anger and pushing it outwards, but like you, Dr. Bogner, you were in a system where you had to meet a criteria and you had performance bonuses based off of the amount of patients you’ve seen on a daily basis. And, that’s also something that is encouraged through billing departments and insurance companies with practitioners or a facility as well, hitting certain types of numbers. It is all business, even though most of them operate themselves… Wow, sorry. A lot of them operate themselves as non-profits, but in reality there’s a lot of slosh going on different things. So, if your doctor is being incentivized indifferent ways, obviously money always is going to carry the carrot. You have to follow that, but you can’t take them…
You can’t hold them completely accountable for that because they’re caught in a system of their own that’s being guided and it’s being formulated and made to what it is now that’s a big profit center for a lot of the drug companies and big laboratories and such and so forth. You have to follow the money to what those are, so if that doctor doesn’t have all that time, you have to stop and consider that they’re caught in a system too, and they have a lifestyle and they might have a bigger house than you and they might have more cars than you and they might have more obligations, and your kids go to public school, their kids go to private school, but it’s a unit of value that they’re just in a different class than you are, and they’re looking at their capabilities in doing so.
And so, I think that’s one of the things in the very beginning in my journey, in meeting Dr. Bogner that did set it apart is that he was really striving in between two different worlds, but looking to do a lot of this research and reading a lot of things and questioning a lot of things as well, formulating his own opinion that definitely was going against the grain. So, he was almost a fan sitting in the stadium at a football game that was wearing the opposite color. He was on the wrong side of the stadium and he was being objective in that way and saying, “I don’t think they’re the best team at all. Everybody was over here cheering, but I think their quarterback is really maybe not that good, or he might be doing some performance enhancements,” and a lot of people were getting pissed at him, and you’re not going to be a good friend in that group of company.
However, it’s important to understand that sometimes these people are just a product of the system, and so you’re going to have to start to become more aware of a saying that I’ve seen recently that I really like, that I’ve adopted is when your stomach talks or that feeling you get in your stomach is usually your guardian angel speaking, and I think as you get older, that starts to ring more true and true. And so, those things you hear inside or your stomach’s telling you, those are your guardian angels, and I think you need to start to think about those things.
I love it, very true, and I was a product of this system as well, so I can’t lie, and I’ve seen it from the inside. I saw 25, 30 patients a day like in an assembly line where you literally have maybe five minutes time and you better write a prescription at the end, so the patient feels like that you did something for them. Right now that has transformed into me seeing maybe four or five patients a day, but I really spent quality time with them to address their issues, to listen to them because there’s so many factors in their lives that can influence the severity of a disease, maybe even identifying causes of disease that for sure would be missed in conventional medicine with your five-minute visit. And so, I was fairly disgusted. I couldn’t even ask my pediatrician any questions, being a physician, having a conversation, not to prove anybody right or wrong, but just address issues.
My son also regressed after a vaccine. So, why can’t I even bring this up with a colleague? Have you really researched it that much as the pediatrician to make that conclusion to say this is quackery, or are you just listening to what your society is recommending? And so, that’s where I kind of feel that there’s this disconnect, and maybe it’s because I have my feet in the water with autism in my family, I’m affected. For me, this is not a nine-to-five job. For me, it’s a 24/7, this is my life, and over the last 15years, if I now look back and see what I know now about autism, how complex it is and how many abnormalities there are, and then listen to a pediatrician and talk about autism, it’s laughable.
But at the same time it’s very scary as well because what they’re recommending for our sick children, and there’s so many of them, like I said, one in 27 boys now, and just to recommend to get speech therapy and ABA therapy and call this number to get services to help with disturbing behaviors, not looking for reasons to help them, not even investigating if there could be something wrong with yeast or mold or parasites or metabolic disorders or ammonia is neglect, is in my opinion, the saddest thing in medical history that we don’t help these children. Why don’t we do everything possible to investigate if there is something wrong chemically or maybe these kids have been poisoned? Nothing, no investigation, and the science is settled, you question it, you get vilified.
And, then there lays down the road of getting into the conspiracies and we’re talking to you at a time where we’ve come out of COVID and there’s a whole interesting story that’s been unfolded as the days go on that’s going to be almost parallel, almost similar to a situation that we’ve already walked through.And I’m sure it’s just not with autism, there’s going to be a lot of other conditions that there’s similar tales and a road that people walk in regards to this. But the thing of it is that you’re going to now start to develop this second sense, and you’re going to start to be frustrated, have a lot of anxiety, and get a lot of information from different places, and you’re also going to be challenged on what it is that you are learning, what it is that you’re questioning, what it is that you’re trying to formulate, and you’re going to have people hitting you from a lot of different sides of help, and then there’s going to be also a lot of sheep, a wolf in sheep’s clothing, so to speak.
That truly, and it’s hard. It’s a sea of possibilities if you enter the non-conventional medical advice in regards to supplements or chelation or stool transplants or hyperbaric oxygen or ABA or supplements, what do you do? And so you just have to, like you said, follow your gut instincts. Listen to your guardian angels, see where it leads you to. Interview several alternative medicine doctors, see which one resonates, which one makes sense, which one can you work with to discuss concepts, to discuss a game plan of evaluation, and then management. Ask them questions. What is your experience? What are your outcomes with your patients? Why do you need to do a gut test? What will it tell us? How can I modify that? How can I modulate that? And so, that’s what should be done. Find someone that will work with you that has the ability to investigate because there’s so much to investigate. It’s a shame that we’re not doing this and that it’s not an insurance covered modality.
And, I think that’s what I was leading to before that was is you’re going to find that, again, your guardian angel in your stomach is going to start to tell you and start keep tapping you on the shoulder, reminding you that there might be something more to this. There might be a reason why they don’t want to look further into, in my son’s case, like a vaccine and heavy metal poisoning and chelation and other aspects of that, or how does that play into genetics? What was the foundation of your child before they got to this point? Where were you starting from? If you obviously have a malfunctioning car or a car with a bad chassis, then you may not be suited to go off-roading, and if you’re immediately thrown into being off-roading, then it could affect a lot of other parts of the car.
And, that could be the situation with the child that you’re dealing with. So, you’re probably going to quickly learn that, again, your gut’s telling you the right things and that you’re probably not going to find a lot of conclusions on answers because there’s a lot of larger, more important and more powerful beings that do not want those correlations to come together for fear of retribution, and also it’s financial. It could really turn and hurt a lot of things in public trust, and you’re going to see that potentially intertwined with governments and governmental agencies and insurance companies and a lot of other big things, and it gets kind of crazy, but in the meantime, your kid’s sitting there and you want to do something, so you really have to by between what rabbit holes you’re going to go down. So, I think with going into the next discussion that we’ll be having for the next episode is the starting points of what you want to do.
So, let’s just summarize some of those based off of what I said. First is take that breath, have that cry, and get into the point of like, “All right, I got pushed down, the bully kicked me and he punched me in the gut and I’m on the ground,” but you’ve got to get up and you’ve got to dust yourself off and determine what is going to be next, and how do you start it from there? And, you’ve obviously gotten your diagnosis or you might be some point along in the journey, you know that there’s going to be more testing that is going to need to be done to get some answers. That data might lead you to the data to say,”Well, let’s do another test now,” and then you get that test back and you might say, “Well, I don’t think that was very conclusive. We might want to test it a different way. Instead of blood, I want to also compare it to hair, or I want to go ahead and take plasma one, before we only did urine.”
And then you have to do another test, and then you have to look at all these things. Another aspect I would also look at to employ immediately would be for documentation of a journal, and there’s a tons of electronic apps and different devices you can utilize right now or old school pad of paper and a pen like an attorney, and start logging when you’re seeing different things happen because you are not going to remember what the effects were or how long it took for some type of supplement or some other change in your child’s system. It could have been from the exclusion of a food or a sugar or something like that.
It may take a couple weeks to actually start to see things, and then all of a sudden it pops up and you’re going to want to be able to correlate it back, and you’re not going to remember what happened just a couple days ago and what changed. And, you’re going to want to be able to go through a log and actually see those things. So, if you can get in the habit immediately of logging notes, and that could even be…
I do it myself, a video diary, and I go ahead and take a video of my child and I narrate through it, and thenI throw it in a folder, make sure it’s saved up into my iCloud drive. So, now I can sort those by date and time, and it’s now in a perpetual place where it’s going to be forever that I can refer back to and see those things. And, I go back and recall that a lot of times to see different components. So, let’s start there with getting yourself in the frame of mind to get started on some of the next things. And so for that, Mr. Bogner?
I just want to remind and reiterate the point that the leading authorities on autism, and if you want to say that conventionally, that’s the CDC or-
In the United States.
In the United States, they do recommend that you look into alternative medicine. They don’t say don’t do it, but the problem is that the definition of conventional medicine, according to other societies, do not advocate for testing, which is based on research that is completely outdated when autism just really started to take off. In the meantime, and 25 years later, we have new technologies that have emerged to detect abnormalities, to detect yeast metabolites, to detect mold toxins in the urine that were not available at that time. We have organic acid testing, we have genetic testing that has evolved for SNP analysis. And so, these technologies have not been incorporated, and they are available, and they do show that they are very significant changes compared to neurotypical children. And that being said, you should absolutely investigate, see it for yourself, black and white, talk to your pediatrician. If they are not in agreement with this, find a different physician that will work with you, and that’s basically what I have to say is that conventional medicine is completely outdated and it looks like they simply don’t care.
All right, next week we’re going to talk a little bit more about the testing process and go a little bit deeper into some of the baseline tests, probably like your core five or six that you should get. First one you can start looking into now, very important is a genetics test. I can’t recommend that enough, and Ido to all newlyweds or people before they birth their first child, is to have genetics done on both of the parents, so that you get a good summary of what is the foundation that is of each individual that potentially you are going to be passing on these genes to your child and know what they potentially have up against them.