​ASD in the Emergency Department:  Looking Beyond Behavior
Have you read this paper?  If not, hop to it. READ, PRINT, HIGHLIGHT and then give to each physician on your team please!
Autism Spectrum Disorder in the Emergency Department: Looking Beyond Behavior
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We’re not sure if this is helpful in focusing on one thing in particular, especially if the entire article ends up highlighted! However, there is really important information here and each line brings with it a need for further discussion. It’s a fantastic first step and we can count on more of this from Richard Frye, MD PhD and his group at Arkansas Children’s Hospital Research Institute.

Truly exciting to see a published article specifically aimed at the Emergency Department and a platform for what AIM believes to be pertinent steps to appropriate, basic medical care specifically for the autism community.
Medical Professionals:  It’s time to pay attention here.  Those parents walking through your door are veterans educated in all things pertaining to their child.  Listen intently and know your reliance on a “system” may not be the only tool necessary to appropriately diagnose, treat and refer this child.
Parents:  Most important, you’re validated yet again.  From there let’s highlight some of the more common complaints we encounter, known situations we endure, and the struggles we have as parents communicating each of these things to medical professionals while in an emergency setting. Highlights from this paper below:

Insurance. What a mess! 
Any time the Insurance changes we go in to freak out mode.  Having a child with multiple medical conditions and trying to manage it all is a super daunting task if you are not extra organized, like me.  I’m getting better over the years but it has been one long road mixed with a few tears. This topic is one AIM would love to give our readers a few tips about especially for those things we’ve found out the hard way.  Our goal here is to help you a smidge before things get too crazy. 
INSURANCE
I’ll be honest, the days of having excellent insurance coverage are far and few between now.  If you are fortunate to have decent insurance in the first place, you often find it’s more fluff and fine print than coverage or “benefits”.  With the amount taken out of a paycheck monthly, then co-pays, deductibles, out of pockets and co insurance who can really afford insurance these days when it comes time to actually use it?  It often becomes a game of balance and really getting in to the fine print of the plan itself to actually capitalize on the “benefits” to your family. 
Below are a few things highlighted that we have found helpful either by mistake, necessity or when navigating through a momentary crisis.
CERTIFICATE OF COVERAGE:  Get your “Certificate of Coverage” free of charge BEFORE you sign up for your latest plan if possible. If already in the middle of the plan, you can request one simply by calling your employer HR dept or even the insurance company itself.  Either can issue this to you.  I’ve been given the COC easily through email but it can also be mailed in paper form as well.  Sometimes you can even find it online if you have a third party type plan and access with a user name and password. Just ask.  Promise it will be worth the two hours of time it takes for you to read through it and discover all things excluded or available to you that even the customer service people fail to know.
The fine details and conditions (benefits, exclusions, obligations, co-pays, pre-certifications, appeal process, and preferred healthcare provider networks) will be listed in this 200+ page pdf but I promise you, you’ll learn a thing or two and be in a better position to decide if the plan offered is something your family can live with or not.  So important when literally every penny counts these days.

I will never forget the first time we had to travel across the country to see a specialist with our daughter.  I couldn’t understand what this doctor was going to be able to tell me that I haven’t already heard from 26 others. I was nervous, semi pessimistic, and hopeful because I had no other choice. I was desperate. At that time Olivia’s behavioral issues were still pretty severe so traveling 8 hours from Houston to Little Rock seemed down right terrifying.  We had yet to make a successful trip anywhere over 2 hours without having to stop to clean vomit, feces, or urine. However, there wasn’t a doubt in my mind we would get kicked off a plane so, driving was our only other option. 

I remember being so angry when I finally heard her ask if we were in “AR-PAN-SAW” yet for the last time at 3am.  Angry that we hadn’t received the appropriate care for almost a decade. Angry that I allowed a disgusting amount of vaccines to be injected into my gorgeous, healthy baby. Angry that we were in this crappy ass hotel because we couldn’t afford something better.  A few short hours later when we were expected to arrive for labs the entire family was showing signs of a seriously short fuse. It didn’t take much for me to exchange words with a nurse. Especially when it was painfully obvious that it was going to take 5 different sets of muscles to hold her still. Olivia sensed Daddy’s pity from a mile away and decided this would be her chance to fight.  

I’m sure you can visualize the fantastic first impression we left with the doctors by the time we left the consult that immediately followed the extreme lab pandemonium. The word frazzled doesn’t even begin to cover it.

I vividly remember leaving the office with my head spinning. I had no idea what the heck just happened in there. I had plenty of time to reflect on the 8-hour drive home and quickly came to the conclusion that the only person to blame was me. The mental list of could haves and should haves was getting more brutal by the second.

1.    Get organized. Hopefully most of you are already requesting records following every visit. If not, you should start doing this immediately. Check with each office regarding their records request policy, but remember you have the right to your medical records. Some offices may have a copying fee or specific request form but please do not accept no for answer. If they refuse to comply they should be reported to the medical board. Period.

Two years ago, Autism Is Medical was called upon to help support a 14 year old child with autism who had multiple serious medical problems and a family in desperate need searching for appropriate care. Weeks and then months went by as teams of nonprofit organizations, therapists, community supports, family, friends, attorneys, state programs, physicians, nurses, media organizations and countless concerned parents within the autism community attempted multiple ways to address numerous deficits and barriers in to a health care system clearly ill equipped to handle this neglected patient population.

Alex’s life was one of thousands that have ended tragically leaving many to question how this could have ever happened and more importantly how do we stop this from ever happening again? Unfortunately, what many of us already know in the autism community is that Alex’s story highlights similar struggles and injustices ignored repeatedly by those who claim to not only protect our most precious children but care for them without harm.

Now more than ever Autism Is Medical feels strongly we must push our children to the front of the line. No other pediatric population exists that competes with numbers like these. With the CDC’s (Center for Disease Control) latest outdated (2010) #’s showing 1 in 68 children (birth year 2002) diagnosed with an autism spectrum disorder, we know we have no choice but to demand not only appropriate MEDICAL diagnostic evaluations of our children but EFFECTIVE treatments that improve outcomes with RESEARCH to support it. 

Today we are asking for the communities help.  

This is Melanie Baldwin.  Melanie is a strong member of the autism community. She is also known as "Booty Kicker" with The Thinking Moms Revolution, but her most important job is being Mother to Luke. Luke is severely affected by Autism and as most of you know this means he requires round the clock care. 

Having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip.

Melanie and her family need our help. Please visit her GIVE FORWARD page to consider a donation, help share, and leave a comment of love and support to help Melanie. 

Any help is greatly appreciated. 

Everyone with Autism is Medical will be praying for a quick recovery and wishes Melanie and her family the very best.