ACTION

Sandra Adcock

*****Link below is the link to Autism Speaks Medication Guide -----Which I give a C in my books. 

Page on autismspeaks.org

First, let's start with the name, "Autism and Medication: Safe and Careful use."  The guide gets away from "Medication Use," and into when medication should be used.  This is a parent decision. It may belong in a PDF Titled, "Medication to use or not to use!"  The decicion to use has nothing to do with a PDF titled "Safe and Careful use."

Second, after the decision to use medication has been made; it is not Autism Speaks duty to caution once again that medication should be a last ditch effort.  I agree medication are for me the last choice but have used them at a time in my son's life when it was appropriate.  That is more of a decision left between doctor and parent.  I do not want to imply that because I think usually medication in autism should be considere last; that a parent that chooses otherwise is wrong. Autism speaks should not imply this either.  

Third, the list of medications is not exaustive enough.  I will list Low Dose Naltrexeone Therapy. Here are two things you can read about it.  I am not advocating it or saying not to choose it.  I simply present it here as one choice that is unlisted in the PDF of Autism Speaks.

*****Page on lowdosenaltrexone.org

*****Low Dose Naltrexone for Autism

Fourth, there is no interview with a pharmacist as a specialist.  Why is this?  It says talk to your doctor or nurse.  Check with pharmacist for more information.  Why not talk to one when putting together this information?

Fifth,  Autism Speaks talks about teaching the child to swallow and how to reward the child/kid for doing so.  What is wrong with them?  Have they never heard of sensory issues?  Some places change the flavors for these reasons.   When is it better to ask for a chewable tablet that can be put in a specific medium?  Ever heard of plugging a capsule?  It would mask the taste and make it easer to swallow.

I wish I had time to go into all the reasons and what "plugging a capsule," is.   My point is this PDF as a tool kit is biased.  Doesn't take into consideration autistics personal sensory issues and more. It is lacking in basic autism reasoning.  Futhermore, there needs to be more information on various drugs covered.

This information is not intended to be about replacing or telling you what to do.  As with all medical decesions, check with your providers before doing anything. I am not responsible for your lack of research in treating your son/daughter.  I only wish to inform you if you use this tool it is one sided and you need more information.

You are not a bad person if you choose drugs before other therapies. You do not have to agree with Autism Speaks or me personally.  Your child may have servere behavior that drugs can mediate that would be life saving.  Do not feel put down when you have been advised of a choice by a provider that is qualified and choose a different path.  Not every one knows your story.

I plan to go into detail in my book about sensory issues and the world of pharmacy.  Also, I want to cover more drugs and possible uses in pharmacy. I will give you this.  I read recently that many drugs are used in the pediatric population off label. Why?  This make sense.  Few drugs are tested for the pediatric population. Drug use is a risk anytime.  I would say just be informed not scared.  

If another mother/father looks at you in horror because you didn't do all the Autism Speaks PDF told you to do, then look at them and say,"Thank you we can read too!" 

Autism Speaks, next time consider getting with a pharmacist when writing a medication guide.  Do not make it look like ever parent must look at medication is a last resort.  Some behaviors such as head banging warrent drugs before behavior intervention or right alongside it.  

INformation is what parents need not a how to must path on when meds are okay to use.

AMA AND OTHERS CAUTIONS “RETAIL CLNICS; BIG BAD WOLF!”

Let’s start with some of the arguments these groups put forward as reasons for concern in using a Retail Clinic!

• Ø Do not have access to all chart records.
• Ø Causes Fragmentation of care by adding another provider.
• Ø Staffed often by Physician Assistances or Nurse Practitioner
• Ø No patient follow up care.
• Ø Chronically ill are more complicated than clinics usually see.  (Note it doesn’t say can’t handle)
• Ø Question if have patient’s best interests at heart!

I looked in detail at five articles about these warnings.  The first covers the period around 2007.  Titled AMA Goes After Walmart Style Retail Clinics, it warns of the same concerns.  “Our primary focus is patient safety and patient care, and the retail clinics have a different mission of selling products and prescriptions,” said Dr. Rodney Osborn.  The AMA stance at that time was to lobby for increases regulations of these Retail Clinics.  Typically doctors often site regulations and dealing with insurance as an over regulated problem.

The other articles cover and aim at those clinics owned by CVS, Walgreen’s, Target and other groups. On Feb. 23, 2014 (my 52 birthday updated a statement disapproving of the Retail Clinics.  Again the list above covers their reasons for concern.

An article written in Aug. of 2012 shows these statistics.

• Ø Total visits go from 1.5 million (2007) to 6 million (2009)
• Ø The same study notes that there are 557 million visits to Doctors and 177 to ER’s
• Ø One significant change in demographics was that those over 65 were at 7.5% (2000 to 2006) and at 14.7 (2007 to 2009).
• Ø About 40% of the visits from 2007 to 2009 were for immunizations.

I now have a few questions and statements I think need to be considered.

• Ø How often can the people that visited a Retail Clinic did so because of lack of access to an appointment needed now?
• Ø How many ER’s have access to a patient’s health record or chart?
• Ø How many Pediatricians really know a patient and remember that child’s chart when called after hours?
• Ø How many Nurse Practitioners or PA’s are employed by Pediatricians or Doctors?
• Ø Is it really fair to say no access to follow up care?  I say this because many say to follow up with your family practitioner or come back to them if they do not have one!
• Ø If it is still true that most(almost half, 40%) go for immunizations, is this really a big issue?
• Ø What study said this are that?  Compare it to what is actually going on.
• Ø Should Pharmacists really be giving vaccinations when they are bogged down just filling prescriptions?
• Ø How many groups are going to have a formal relationship with your Pediatrician?
• Ø Is some of the disjoint and lack of communication the fault of the AMA for going after the Retail Clinics instead of really working with these groups to shore up the holes? Or, is this just about the bottom line?
• Ø How many people complain about not enough time with their doctor?

I would think again about what the AMA and AAP says about these clinics.  I would think also about getting prescriptions where pharmacists are doing a lot of vaccinations.  I am a pharmacist and will get plenty of feedback for this I am sure.

The bottom line is go to places that you feel comfortable.  I can personally vouch for a Nurse Practitioner owned clinic.   Excellent care is what my husband (also a pharmacist), my son and I get when we go there.  This does not stop me from having a family practice physician.  I have gone to this man since 1987 and will not go elsewhere  besides that NP owned clinic in Yukon, OK.  They do not compete but compliment each other.

Below are the 5 articles used to write this essay; along with my personal knowledge and opinion.

Ollamok AKA Sandra

http://www.amednews.com/article/20120827/business/308279963/7/                                    http://healthland.time.com/2014/02/23/pediatrics-group-advises-against-retail-based-clinics/           http://www.kevinmd.com/blog/2013/08/drug-store-retail-clinics-primary-care-fast.html http://consumerist.com/2007/06/27/american-medical-association-goes-after-walmart-style-retail-clinic /http://virtualmentor.ama-assn.org/2013/11/pdf/vm-1311.pdf

This is a work in progress about autism.  The perspective is from the real world view.

I want to hear from you what should go into a book from a real world perspective.

Also, I would appreciate letting me interview you.  I know you may think you are not a professional.

However, you may know more than you think.  Have you ever gotten rotten advice from professional

experts?   I am not here to bash all experts.  Yet, I want to hear from the people on the frontlines that

may often be overlooked.  By doing this, I feel we can have a better understanding that some fail to do so

by leaving stones unturned.

I need to let my readers know I might be changing my working business name to ARM, Autism

Resource Management.  Tell me what you think.  You may leave comments here or on my facebook page

at www.facebook.com/Tell.It.Once.4Autism.

Ah in autism,                                                                                                                                                                                       Ultimate expression,                                                                                                                                                                                  Whether being an Einstein physicist,                                                                                                                                                             Or equisite artist in self mode reflection!

Autism modes                                                                                                                                                                                                 have different codes!                                                                                                                                                                                     It can be art                                                                                                                                                                                                Or poet!

Most just don't get                                                                                                                                                                                         Or havea key!                                                                                                                                                                                       Uproar n plenty,                                                                                                                                                                                 Because of low affinity.

Most ignore                                                                                                                                                                                           Natures beauty                                                                                                                                                                                             unless in their preferred                                                                                                                                                                     Absolute form!

Open your eyes.                                                                                                                                                                                   Blessed thy                                                                                                                                                                                                   Will be                                                                                                                                                                                                         1000 fold from autism.

Please do not be put off by the poetry.  I put this in as a thought provoking exercise. Explore all the things that might affect autism.  Then after you read the poem go to the NIH Sites and get free publications that explain all the poem touches on. Autism, like cancer, has so many threads and variables it is impossible to find one specific cause.  That is why we must explore all threads.

Autism? Simple answers? No! Here is
Sandra’s try at an explanation.

Autism has good graces.
Visit upon us to bless upon.

Doesn’t mean one shouldn’t ask,
“Why? What? When? Where and how?”

God could have intended
You being intentioned in the unhinging of the process.

Vaccination’s that is the key!
Say many with adamation!

I agree for them it could be,
A factor, insult that hit on.

Pharmacist in me says, the study was too small to make it a hallmark.
Flip the coin, drug makers threw around money, plus shouted out!!

Next, a group says environment
Causes problems no doubt.

Environmental insult.
Yep, that is why my child is shut into autism.

Remember here, environmental can be
From chemicals & diseases stalking inside to make their stand.

From, things like maybe Grandpa’s Agent Orange,
To a baby’s hospital stay due to RSV!

May yet wave
The Genetics Flag.

Throw into this mix, I will; smaller families, often an only child
That insists to be totally plugged into away from others.

Oh, how simple it would be
One answer, if could only twas or could be.

Yet, still I want to pose
Older parents, sperms and eggs as a contribution variable.

Not a reason not to conceive!
But to be aware more defects, mutations with age do occur.

Can one really say,
One cause is for autism?

Look at cancer! Common threads
There, still many different scenarios.

Genetics predispose, environmental assaults,
Turns on gene with a society that is ripe in culture and age of parents?

Yet, it matters!
No, it doesn’t matter!

Sound so crazy?
Yes, to help. No because we love and deal with it no matter what!

We learn what can and must be done.
But better realize the blame game must stop.

One answer might be cause in 1% of cases ( just me thinking),
Reality is autism is complex.

Complex, autism really is!
Yet, then is simple too.

Reaching out is what I want to do.
Remember right answers lead to correct therapy n treatments!

Wrong guesses and blame may only
Lead to burying data and wrong wizardly haphazard disasters.

Science, true keeps an open mind!
God is the first and Ultimate Scientist.

Together are we able
To do and can do n be our best.

In some ways the riddle of autism
Is not to be solved!

God means us to be
Who we are as he made us!

Change is something
All of us must do.

Adapting to you and others
Is being kind.

Let us not get behind
Stay in the forefront.

Doing out best to unlock the riddle
As much in prayer; God intends us to do!

I am sure by helping
We learn God’s lessons.

Helping those with autism
I bet could be a society improvement, God intends us to do.

No answer complete do I have;
Except my son is a blessing some may say in disguise!
God we will accept your answers.
Thank you God! Amen!

This post will not be long.  First, let me give you this site url in case you choose to read no futher.  You can wander around and see what is important to you.

http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml#part8

This site is marvelous at giving basic information on autism.  There is a free "Parent's Guide to Autism Spectrum Disorder's."

On the site you will find headings listed below;

• What is Autism Spectrum Disorder?
• Causes
• Signs and Symptoms
• Who is At Risk
• Diagnosis
• Treatments
• Living With
• Clinical Trials

There are more publications, plus they are available in spanish.  

I hope this is helpful; my goal is to inform with correct information.  There is so much misinformation out there.

Go Check out the government information     

Are you the Asshole Marie describes in her book?  The type of person that makes raising a child with blindness, autism, both, other disability and/or multiple disabilities worse?  "I am just writing truths and opinions about my life, my own experience , and my own feelings concerning caring for my own son." States Marie Duke in Autism and Assholes the book she wrote.

While the title seemed extreme to me at first; after reading the book I agree the title fits her walk in the realm of disability child rearing/raising. A reader that wants to read a story on heroism, is a newbie parent to the realm of disability child rearing and people involved in providing services to children with disabilities might want to consider this to be put on the top of their reading list.

I haven't excused the general public yet.  People that want a peek to see what it is on the inside of this world should read it before they stick their nose in other's business.    "You should put him in a home," is a sentence Marie heard.  I also as a mother of a child with autism heard this very same sentence spoken to me be by experts.

One child developmental specialist Wanda Draper, that has a redo of her book, "Your Child is Smarter Than You Think," was the only one to say anything about the importance of the parents.  She remains positive about the children.

Autism and Assholes is $11.99 in paper pack at Amazon and the Kindle is $6.99.   The ISBN is 149215887 and the ASIN is BOOEKRNW7.

I consider this a must read to gain insight into how little people understand the real world of disabilities.  How dare some tell us to put our children in a home so early in life.  This proved to be wrong for Marie and me.

A heart wrenching story that will give you the understanding she deserves.  You may take offense at the title but after reading it, I promise you will want to call her up and offer a heartfelt apology.

This isn't the normal book review.  I don't want to take away from the story.  I mainly wanted to explain and tell you why to read the book.  Marie in my opinion was too nice to the people that provided services to her son.

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=autism%20and%20assholes&sprefix=autis%2Caps&rh=i%3Aaps%2Ck%3Aautism%20and%20assholes