Saturday, April 7, 2018

Please Forgive Me, I Woke Up Today Inside of Someone Else...: Insurance companies vs doctors in the U.S. for Aut...

Please Forgive Me, I Woke Up Today Inside of Someone Else...: Insurance companies vs doctors in the U.S. for Aut...: Newest article on the battle between insurance companies and doctors for My own personal account.. My family has spent t...

Insurance companies vs doctors in the U.S. for Autism Care

Newest article on the battle between insurance companies and doctors for My own personal account..

My family has spent the last several years living outside our home state of Indiana. Moving was a huge adjustment for all us- particularly my oldest Autistic son. I spent the first few years we were away fighting for proper education and doctors for him in Washington State. The wait lists are ridiculous in the clinics across the United States. Not to mention the irritation that comes in when you have to involve different insurance companies!

I waited 18 months to get a place for Zain with a proper Autism Specialist. In some areas, 18 months is a short wait time too. Then right when he started to get used to us living away from family and seeing new doctors we were blindsided with the prospect of moving, again. Like millions of people across the United States have experienced before us- my children's father was unexpectedly laid off from his job. Unfortunately, at that time we had no probable plan that would allow us to stay in that area; given that, we decided to move back home. A daunting task for my son as it entailed more change....


Tuesday, March 20, 2018

Please Forgive Me, I Woke Up Today Inside of Someone Else...: Autism Acceptance and the General Public's Percept...

Please Forgive Me, I Woke Up Today Inside of Someone Else...: Autism Acceptance and the General Public's Percept...: I have recently started writing for again. My writings will be mostly on that website from now on, but I will share them on...

Autism Acceptance and the General Public's Perception of our Children

I have recently started writing for again.

My writings will be mostly on that website from now on, but I will share them on here as well...

Have you ever had those moments where you can tell that someone doesn't "get" Autism?
Have you ever been in one of those uncomfy situations where people are staring at your child or family in public? I know I have...

If so, this article may help you tremendously.

Want to read more from Brooke?

Wednesday, February 21, 2018

The Awakening of the Children of America- The Recent Protests for Gun Reform

I have watched the tragedy in Florida closely over the last few days. As the politicians who happily took millions from the NRA have said, this is a tragedy no parent or child should ever endure. Children should always feel safe, especially while learning. Teachers should feel secure in their jobs. Administrative staff shouldn’t have to go to work thinking about how they would most likely encounter a shooter first. Eight-year old children shouldn’t be afraid to wear their light up shoes to school because they’d make them a target for a shooter. There should be no fear associated with school. Yet in America there is. There is great fear in every community, every day, by parents’ and children alike.

Now, I could start a big debate on Gun reform but I’m not going to. As long as the NRA is buying our politicians off there will be little change. But for argument’s sake, let me break down some of the campaign contributions received from the NRA to our leaders…

Top NRA Campaign Contributions

I’d like to add that Donald Trump has received $30+ million from the NRA, Paul Ryan has received more than $171,977, and Mitch McConnell has received more than $771,175. If you are wondering how influential these donations are- "In 2014, the NRA had a nearly perfect track record in its top races. In the ten races the NRA spent nearly a million dollars or more – eight Senate races and two House races – the candidate the NRA backed candidate won in every race except one." 

Another point worthy of mentioning is that almost a week after this tragic shooting that took 17 lives in 6 minutes Florida officials voted down a bill that would make assault rifles illegal, instead voting pornography as a public health issue. It seems to me that they had the real public health issue at hand and failed our children with their vote. Many survivors of the shooting sat and watched as they voted down the bill. They didn’t go silently into the night though. They spoke out against it.

With that said, I want to talk about the students not the politicians. These remarkable individuals that have taken this tragedy and turned it into an opportunity to say, “NOT ONE MORE! WE WANT CHANGE NOW!” These amazing human beings that are using their voice for the change that some of the adults in their life have fallen silent on over the years.

These are the children most of us raised telling them daily that they had a voice and could do anything with that voice. They are showing us now that they heard us and understood all along. They are proving that teenagers aren't just Tipe-pod eating delinquents. They are showing us exactly how strong they are in the face of evil. They are destined to go down in history. They are what our future looks like and I couldn’t be prouder.

The world first took notice of the students’ voice’s in this with a speech given at a rally by a Miss Emma Gonzalez, a survivor and Senior at Marjory Stoneman Douglas High School (sight of the recent school shooting.) Emma’s voice was heard loud and clear as she called “BS” on the ability of the mentally ill to obtain a gun and the lack of progress in keeping our student’s safe. She spoke loudly and proudly as she declared, “NOT ONE MORE!”

Picture Courtesy of Lalo Alcaraz

Days later students held a lay-in in front of the White House. Protesting for gun control reform. In typical conservative fashion, these kids were attacked for their protest. Many adults wishing death on them, one in particular asking where a suicide bomber is when you need them. Another saying that we should take a bulldozer and push the children off a cliff. This has not silenced them. Not long after the lay-in protest students across the country walked out of their classrooms and marched the streets of their towns in protest for the same. They are protesting for the right to be safe in their schools, for a ban on assault rifles; and you know what, according to a MSNBC poll out on Feb. 20, 2018, 67% of Americans agree with what these children are asking for.

These victims turned advocates have been woken up. They are currently planning a mass walk out in April. These young adults are amazing and show how much good parenting and exceptional teaching can help a person make the right decisions. How the right influences in a young person’s life can lead to an uprising that nobody can ignore. This country is going to change. The question is, in what direction do we go from here?

I saw it said recently online that when your leaders act like children and your children act like leaders, you know change is coming… I’ll tell you one thing- I sure do feel the change and I embrace it for all it’s beauty, stolen innocence, and knowledge. Don't disregard these young people, don't disregard our future. They will make our laws one day. I, personally, can't wait for that day. 


Thursday, February 15, 2018

Opioid Addiction: A Choice or a Disease?

Here lately I’ve been seeing a meme going around social media debating whether opioid addiction is a disease or a choice. I think that is a topic worthy of conversation. When does it stop being a decision and start being a disease? When does it stop being a lifestyle choice and start being a disease? When does it stop being an act of devastation for a family, for the children sometimes involved and start being a calling for serious, obtainable help?

It is no secret that there is a history of opioid addiction in my family. I am somewhat bias to this specific topic. I am always looking for an answer. Or as we call it in the autism community, that “magic bullet.” That cure-all. That one answer that will end the pain they feel and the pain they cause in the wake of their addiction.

Everybody knows that my family has dealt with opioid addiction, but few know that we once again find ourselves looking for that “magic bullet” for our loved one. Once again, we find ourselves sitting up at night hoping we don’t get that phone call. Once again, we start our fight for a loved one's life. So, yes, this is a deeply personal issue for me. I need an answer. Is it a choice or is it a disease? Or is it both? This has become a matter of life or death for someone I can’t imagine living without. I imagine that some of you find yourselves in the same spot as me. In fact, I know you do. Per the National Institute on Drug Abuse 115 people a day die of opioid overdoses. This includes prescription pain relievers, heroin, and synthetic opioids such as fentanyl. That is 115 families destroyed a day. This is a real issue not a joke on social media.

Every single day in this country we hear about someone passed out behind the wheel of their car, overdosed. Or someone found in their room dead from that last fatal dose of heroin they really thought they could control. Most of the time their addiction started with a doctor not monitoring how much of a pain killer they dispensed to their patient. In 3 months’ time my brother was given over 1000s of oxycodone due to having a broken arm. It was downhill from there. That was 12 years ago.
We have cities and counties in this country essentially debating if saving an opiate addict’s life is worth it. They are truly questioning if Narcan should be administered on repeat overdose patients, or if they should be left to die. Butler County, Ohio Sheriff, Richard Jones is actually quoted as saying, “It's just reviving somebody who's going to go back and get high the same day. It's a war that we're losing."

Those individuals aren’t just addicts- they are someone's child, sibling, and grandchild. They contain somebody’s greatest memories and somebody’s greatest needs. They are not loss causes, they deserve help- not societal shunning. So, as I do with most any question I have… let's look at some of the science and statistics surrounding opioid addiction.

How did this start

With a lie. It started with a lie. According to the Institute on Drug Abuse: In the late 1990s pharmaceutical companies essentially walked into doctors’ offices and spread misinformation to doctors which subsequently led to a rise in the prescriptions written for the pain medications. Essentially then raising the drug companies’ sales. From there is wasn’t long before opioid overdose rates actively increased. In fact, it is reported that in 2015 more than 33,000 Americans died as a result of an opioid overdose. It is also reported that drug manufacturers that encouraged doctors to overuse opioids are now facing lawsuits for their role in creating the opioid epidemic.

Number of prescription painkillers written from 1991 to 2013. Picture Courtesy of the Institute on Drug Abuse

The Science of Addiction

The overdose death toll has grown 532 percent since 2002. Would it surprise you to know that it now overtakes car crashes as a leading cause of death? The truth is that no one human is immune to opioid addiction. These drugs are prescribed by the people we trust the most and they work at the cellular level. My question is how can this be called a choice when “these drugs take over a person’s brain outside of the point where they can control the chemical processes that are occurring. Essentially, addiction seizes a person’s ability to control their impulses. It is reported that this causes hundreds of changes in brain functioning.” So, is that a choice?

When you look at the research being done on addiction there seems to be a genetic link. Per a report by Mr. Gene M. Heyman, Department of Psychology, Boston College, Boston, MA, USA, “Twin and adoption studies have repeatedly demonstrated a genetic predisposition for alcoholism and the limited amount of research on the genetics of illicit drug use suggests the same for drugs such as heroin, cocaine, and marijuana.” But it is worth mentioning and was mentioned by this report that “all behavior has a genetic basis, including voluntary acts. The brain is the organ of voluntary action, and brain structure and development follow the blueprint set by DNA.”

More research into the genetic links are currently being done. Genetic mutant mice “lacking various dopamine or opioid receptors, various monoamine transporters, and various growth factors” are being developed and tested for their "sensitivity to drugs of abuse." The University of Strasbourg reported work with mice having 3 of their opiate receptors deleted. While pharmacological studies have suggested there are “subtypes within the classes of opiate receptors,” the genetic studies call this into question. Let me get scientific on you for a second. This study suggests that “while the μ opiate receptor appears necessary for the addictive and painkilling effects of morphine, deletion of the δ opioid receptor appears to augment the effects of deletion of μ receptors in heterozygote animals with one copy of each gene deleted. Animals with the μ opiate receptor deleted appear relatively normal, suggesting that the function of endogenous μ opioids may be largely restricted to abnormal conditions of stress and pain.” Basically, suggesting a large genetic proponent to opioid addiction.This study goes a step further to claim that drug addiction is a cause of Brain Disease.

These studies also suggest that opioid addiction can be a form of self medicating for the mentally ill, or for those predisposed to genetic conditions of mental illness. The self-medication hypothesis of addictive disorders comes mostly from clinical observations of patients with such disorders though. Per Harvard, a person with substance use disorders "suffer in the extreme with their feelings, either being overwhelmed with painful affects or seeming not to feel their emotions at all. Substances of abuse help such individuals to relieve painful affects or to experience or control emotions when they are absent or confusing." 

So does self-medicating for a mental illness make addiction a choice? Mental health help is almost as impossible to obtain as rehab and long term addiction counseling is. For those of you questioning how unobtainable drug rehab is for addicts, let me break it down for you...

Drug Treatment Costs in the U.S.A, per the Addiction Center

Outpatient detox: Out Patient rehab ranges from $1,000 to $1,500 in total. Most inpatient rehabs include detox in the cost of a program. The exact cost of detox depends on whether it’s part of an inpatient program and the type of drug addiction being treated. Substances with dangerous detox side effects require more careful monitoring, making the price higher.
-Inpatient Rehab: Some inpatient rehabs may cost around $6,000 for a 30-day program. Well-known centers often cost up to $20,000 for a 30-day program. For those requiring 60- or 90-day programs, the total average of costs could range anywhere from $12,000 to $60,000.
-Outpatient Rehab: Outpatient programs for mild to moderate addictions are cheaper than inpatient rehab. Many cost $5,000 for a three-month program. Some outpatient programs, such as the program at Hazelden Betty Ford, cost $10,000. The price tag depends on how often the individual visits the center each week and for how long.
-Medications: The type of treatment and medications needed affects the price tag on rehab. Some people don’t need medication for their addiction. Medications most often treat alcohol and opiate addiction. It can cost several thousand dollars a year. Year-long methadone treatment for heroin users costs around $4,700.

How does anybody expect a middle class family to be able to afford treatments with costs like that? You should also keep in mind that even with treatment some 91% of addicts will relapse.

So, does having a genetic predisposition to addiction make it a choice? Where does that fine line lay that distinguishes the difference between the two? Yes it is their choice to take that first pill, but by default does that make the whole addiction their choice? When do they cross that line that makes it no longer a choice and makes it a desperate need for them to get help?And when the hell did we get the gull to question whether a person's life is worth saving simply because they may use again? Every life is worth saving.

There is another point to this question and this meme going around... Has claiming it is a choice made the situation worse? I read an article while researching for this that said it all to me. It stated that, “Falsely characterizing addiction as a moral failing led to another epidemic — the epidemic of silence that so often surrounds overdose deaths. The stigma and shame imposed on family and friends and the pressure to attribute the deaths of their loved ones to accident or suicide has allowed the opioid crisis to flourish in secret: Americans haven’t understood the enormous scale of this crisis until recently.”

So is it a choice or a disease? To me, I think it is both. It starts out as a choice, whether made because of a doctor's directions or not, and for some people ends up being a disease that they need immediate help to get past. Jail doesn't help this. Shaming doesn't help this. Truth, care, understanding and long term treatment helps this. When does an addict and their family become worthy of that? It seems to me that to some, sadly understanding and care only comes after opioid addiction touches their lives.


Wednesday, February 14, 2018

Using Nasal Spray to Treat Autism?

Autism is one of those disorders that is clouded with mystery. We have no one solid cause and no exact beneficial treatment for it. It all feels like a big game of “guinea pig” once you start down the road to trying to find the correct medication and therapy. Even finding the correct doctor is a challenge. There are so few out there that know what they are talking about. As a mother of a teenager with Autism my journey on this path started around 12 years ago, when my son was first diagnosed.

Since that day we have been through so many medications it’s easier to tell a doctor what he hasn’t tried than to sit down and try to list the medications he has. Luckily in the last few years we have found the right combination of medications and therapies to work for him. Unfortunately, due to our insurance company refusing to allow him to continue that treatment once we moved states we have had to since find one that works almost as well. Even though he is being treated that doesn’t mean my journey ends here. It is just beginning.

It has occurred to me that I am about to jump head first into a world I do not know. The world of having an Autistic ADULT son. I feel like my research is starting all over, mostly because it is. While looking into pre-voke rehab services for my son I remembered years ago, when writing Painting the Spectrum Gold, I stumbled across a study that suggested a new treatment for adults with Autism that potentially would work for children with Autism as well. I also wrote about this in an article for 4 years ago. If you are interested in that article click here.

The initial trial study of interest occurred at the Institute of Cognitive Science, Centre de Neuroscience Cognitive, Lyon, France. It was published in PNAS in 2010. During said study 13 adult volunteers with Asperger’s were given Oxytocin to inhale. An additional group of volunteers were given a placebo to inhale. In the end it was found that Oxytocin Nasal Spray is beneficial in the treatment of Asperger’s in adults with the diagnoses. The study claims that the volunteers had better response time and ability to understand in a simulated ball toss. In addition, the volunteers given the Oxytocin Nasal Spray were able to increase the amount of time they could focus their eyes, or “zone out,” into a picture.

Getting results on oxytocin treatments for autism in America was a step by step process that started with Autism Speaks. Much like the abovementioned study, the first step to getting a trial done in America started overseas. The initial study was conducted by Hebrew University in Jerusalem in 2008. Autism Speaks gave a total grant of nearly $380,000 to make this study happen. The Scientist were charged with researching the effects of oxytocin levels in a mother prior to birth and then the use of synthetic oxytocin (Pitocin) on the infants and rate the overall correlation.

Directly after the Hebrew University study, Autism Speaks gave the University of North Carolina $119,000 to begin a trial on the treatment of autism with Oxytocin Nasal Spray. Since then the United States Government has gotten in on the research. They gave $12.6 million dollars to begin the SOARS-B study in 2013.

The official name of the study is Study of Oxytocin in Autism to improve Reciprocal Social Behaviors. SOARS-B is currently following 300 autistic children; half of which are being given oxytocin and half a placebo. This is to happen for ½ the life of the study. The second ½ of the study all the children are given the Oxytocin Treatment. The results of this study are still unknown, as the study is still being done. There are several universities in on this study.

Universities participating in the study are:

• The University of North Carolina ASPIRE program, in Chapel Hill and Durham• The Lurie Center for Autism at Massachusetts General Hospital, Boston
• Seaver Autism Center at Mount Sinai School of Medicine, New York
• Seattle Children’s Research Institute
• The Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders in Nashville.

If you are wondering how all of this ties together, I am about to tell you. As I stated in the previous article I wrote. In 2012 a Stanford University study proved to be extremely valuable. "In this study they were able to make a correlation between Oxytocin and Serotonin levels in the brain. They were also able to effectively show that oxytocin influences the levels of serotonin seen. That oxytocin actually acts much like an antidepressant does. It increased amounts of serotonin present in the brain. The Stanford team was also able to show that oxytocin increased serotonin levels specifically in the brain’s nucleus accumbens. This led them to the conclusion that the relations between oxytocin and serotonin could be fundamental in making social interactions enjoyable for an autistic individual."

Additionally, when lead researcher of the Stanford study, Gül Dölen, was questioned it was stated that "there are at least 14 different subtypes of serotonin receptor [in the brain]." The researcher went further to say that, "We've identified one as being important for social reward. Drugs that selectively act on this receptor aren't clinically available. But our study may encourage researchers to start looking at drugs that target it for the treatment of disorders such as autism." 

A comment given when Angela Sirigu (lead researcher of the French study I mentioned above), was told of the findings of the Standford study sort of puts it all together for you. She replied by saying that the findings were "interesting since they confirm our previous results obtained on adult Asperger patients we published in PNAS in 2010, and they also show that therapeutic potential of oxytocin can also be extended to children."

I previously wrote that "scientist who support the Oxytocin claims say that using this hormone on our children will increase their ability to recognize emotions in others. That it helps with repetitive behaviors, social memory and it, overall, helps their whole emotional process. The claim is that these responses are seen in Autistic children as well as in Schizophrenic patients, and patients with Social Anxiety Disorder; furthermore, sometimes these positive results are seen within 3 weeks of treatment. These scientist and doctors are so confident that they say Oxytocin Nasal Spray Treatment addresses the “core symptoms’ of Autism."

Doctors that champion for this treatment claim that it

-increases ability to recognize the emotions of others
-increases social memory
-lowers repetitive behaviors and scripting
-lessens social anxiety

My emaxhealth article pointed out the down sides of this treatment as well.

I wrote, "Now before you run out to your child’s doctor’s office begging for this ‘magic bullet’ there are a few things you should know. The University of New South Wales researchers did their own research study in 2013 using 38 boys ages 7-16 years. They conducted their study much like the pilot AutismSpeaks study. At the end of the study they concluded that there were no improvements in emotional recognition, social interaction skills, repetitive behaviors, or in general behavior with the use of the nasal spray. Also, as with most medicines, you must remember that there are side effects that come along with the use of Oxytocin Nasal Spray."

Side Effects of Oxytocin Nasal Spray Treatment

-runny nose
-irritation of the inside of the nose
-excessive eye watering
-mental disorders with loss of normal personality and reality
-bleeding not related to a menstrual period
-uterine contractions

Given those side effects, this is a treatment route that needs more research before being used widespread. Understand that most of the pharmaceutical treatments we currently have for autism have many of the same side effect. Nevertheless, this idea is interesting. The potential of this treatment helping adults and children who fall on the Autism Spectrum is actually just plain exhilarating.