Sunday, February 8, 2009

Autism in the Media


My Tivo is filled with prime time shows incorporating autistic chacters into their cast or story line. The newest cast member of Grey’s Anatomy , Dr. Dixon a celebrated cardiac surgeon is an example of how autism is moving into mainstream entertainmen (Not to mention the controversial showing of Private Practice’s take on the autism and the vaccine connection). As the numbers in autism diagnosis continues to climb autism is receiving more attention in big-name Hollywood hits as well as documentaries; from the 1988 classic Rain Man to the Temple Granding project to star Clair Danes. These apperance are bringin autism to the general public. However, at times these characterizations are positive and uplifting and other times they can create quite a negative stigma for those with an the autism community. For example, Rain Man is responsible for the general assumption that individuals with an autism spectrum disorder are either great at math or have a thing for numbers. The character, Raymond Babbitt, was actually an autistic savant and very rare in the autism community.
Whether you are a family directly effected by autism or someone wanting to get a better idea of the wide specturm of individual with autism, I recommend you renting one of the many titles listed below:

1962 - To kill a Mockingbird




1972 - A day in the death of Joe Egg


1974 - Silence


1977- Cube




1980 - Touched by Love

1981 - The Pit



1988 - Rain Man

1989 - The Wizard




1993 - Family Pictures



1993- AuPair




1994 -Nell










1996 - George


1997 - Mimic

1997 -Possum

1997 - Cube

1998 - I Am Sam








1999 - Molly


2000 - Dancer in the dark
2003 – Milwaukee, Minnesota

2004 - Miracle Run
2004 – The Hawk is Dying
2004- Gaurding Eddy

2005 - Mozart and the whale
2005- Fielder’s Choice
2006 - Snow Cake
2006 - House of Cards


2007 - BenX


2008 - Clay Marzo: Just Add Water


******************************In the Works Stay Tuned*****************************
2009 - Adam
Temple Grandin project 'Ant Boy' and 'Silent hero'
Mary and Max
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Saturday, February 7, 2009

How to Select a Clinician



"Finding a good clinician is vital to putting the pieces together"

There are many clinicians who say they treat children with autism but only a few who have experience or the specialized knowledge that comes from focusing solely on autism as a mulit-organ system involvement. Research on the medical aspects of autism are published regularly, so what a clinician may have read six months ago could be out of date today. Due to the lag in publishing medical research, reading published research alone is not enough. Look for a clinician who networks with other autism specialist around the world and treats the entire body of the child.

Currently only The Autism Research Institute trains medical doctors in its biomedical "Defeat Autism Now" (DAN!) protocol and maintain a list of practitioner. The list is not an open endorsement, but a record of clinicians who have attended a DAN! Practitioner training session. Because attendance is all you need to qualify as a DAN! doctor, parents can easily wind up with a clinician with few credentials or little experience a personal clinician interview is important before making your first appointment. The questions below were revised from the Autism Research Institute website on finding a clinician (http://www.autism.com/) Please feel free to add any question that you may find helpful for others.


Question about the Clinicians

  • What led you to become a clinician specializing in autism treatment?
  • What is the primary medical specialties in which you were originally trained (i.e. pediatrics, family medicine)? What is now the primary focus of your practice? If you are not an MD or DO, in what field(s) are you licensed?
  • Are you a DAN! Clinician or familiar with the DAN! Approach?
    If yes, when was the last one you were able to attend? Did you also attend the physician’s training?
    If no, how does your protocol differ? How do you stay current with emerging autism treatments?
  • How long have you been treating patients with ASD?
  • Approximately how many individuals with autism have you treated? What age range?
  • Can you collaborate with other specialists we will be dealing with (gastrointestinal, allergist, nutritionist, etc)?
  • Are you willing to collaborate on treatment and testing with my child’s pediatrician if he/she is receptive?
  • Do you have a waiting list? How long is it?


Questions about Treatment



  • What kind of lab test do you start with?

  • How often do you retest labs?

  • How do you handle blood draws and other unique lab tests? How do you handle combative patients? Do you have preparatory advice for parents?

  • Can you provide a list of all services your office provides on-site? Examples: HBOT, infrared sauna, Secretin IVs, IVIG, Anti-viral therapies, nutritional counseling, blood raws, etc.

  • Are your patients required to use special diets such as GF/CF, SCD, low-oxalate, etc.? Why?

  • Do you follow the DAN! Protocol? If not what would your treatment protocol look like?

  • Will you provide a clear plan for supplements and where to purchase them?

  • If I am interested in working with a doctor who chelates when it is warranted. Do you test for heavy metals and provide chelation treatments when necessary?

  • Do you sell proprietary nutritional supplements or have a sales agreement with supplement suppliers? Do you sell supplements at cost?


Questions about Billing and Communications

  • Do you take insurance? If not, can you provide organized, coded insurance forms?
  • Do you bill for laboratory tests done by commercial laboratories? How do you break down the fees?
  • In the event we have a biomedical-related emergency, how will I contact you?
  • Do you share an e-mail address, cell phone, etc. with your patients?
  • Do you offer phone consultation for distant patients? What are the costs?
  • How long do you spend face-to-face in an initial appointment?
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In the Beginning...



WHAT YOU NEED TO KNOW TO BEGIN



1. Know that you are not alone. I am a parent just like you. I completely understand the heartache at the onset of the journey, confusion in navigating the treatment jungle, fear of not doing enough, anger at the system or anyone who gets in my way and a million other emotions that come and go in waves of uncertainty.



2. Know that progress is on our side. As I mentioned before and will continue to do so, no matter how severe the degree of autism your child my experience, your child can progress. It is important to define what progress is in your own terms in relationship to your child’s starting point. I can remember the celebration we had when my 7 year old son learned to blow his nose. Some would say how is that progress? My son had cold induced asthma that would (despite being GFCF) would produce huge amounts of mucus. He would sneeze snot rockets (which are socially unacceptable let alone highly contagious) and swallow so much mucus he would vomit it back up. So in terms of my son and his health conditions this was huge progress! So progress is defined by the starting point and the specific needs of the child and family.



3. Hope is your strength. Being a woman of faith I hold closely the promise of that states, “I know the plans I have for you (I insert my child’s name), plans to prosper you, plans for a good future. We are told with out a vision or dream we perish. There are always difficult times and even times that seem unbareable, but you have support among fellow parents, and you need to cling to hope. Breakthroughs in treatment have already been made and as research continues we will see even more.

Keep your hope alive!

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Autism is never hopeless


The most primary message that I would like to convey to the world is that AUTISM IS NOT HOPELESS. That autism is treatable and for some (not all) it is recoverable. No matter how severe the degree of autism may be, our children do progress. More and more, children are developing and improving in ways never thought of before. I want to encourage parents to explore the various therapies available for our kids and do so with an open, educated mindset.

The purpose this D.I.S.H. blog is to relay basic dietary and biomedical interventions that many parents have found helpful for their children. Here you can read about these therapies, dialogue about your experience and ask questions specific to you and so much more.


I always recommend that before you start initiating any treatment or therapy, that you talk with your child’s primary healthcare provider. Yet, I encourage you to do your homework first before discussing a treatment with your child’s doc. In this day and age more and more doctors are starting to come around to the idea that biomedical interventions (that includes the diet) are beneficial to our kids on the autism spectrum. However, there are still large subsets of allopathic medicine that will discredit and dismiss it. That is why I encourage you to do a little footwork first. Do not just take your doctors word…do your homework. I believe with persistence and research, we can make a difference in the life of our kids and others living on the spectrum.
Remember, at times hope may seem lost but there will always be fellow parents to help you navigate you through the maze and reconnect with hope.
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