About Autism and Mito

YOUR ROADMAP TO THE SITE

STEP 1: Educate Yourself.

  • Read about the connection between autism and Mito.
  • Read about three families' journeys from ASD to a mitochondrial disease diagnosis; their children's symptoms, testing, treatments and responses to a mitochondrial cocktail.
  • Join our quarterly call. (See below for details.)
  • Listen to this 2009 recording of a lecture presented by Dr. Fran Kendall about the link between autism and mitochondrial disease.

STEP 2: Educate Your Doctor About Screening for Mitochondrial Diseases.

  • Have your doctor read the pediatric screening guide for an outline of symptoms.
  • Download Dr. Fran Kendall's brochure explaining the connection between ASD and mitochondrial disease and share it with your doctor to begin a dialog.
  • Visit Dr. Fran Kendall's website to print the article "Bridging the Gap Between ASD and Mitochondrial Disease" and bring it with you to your next appointment.
  • Direct your doctor to visit Dr. Fran Kendall's website for an overview of the connection between mitochondrial disease and autism, symptoms, and Tier 1 and Tier 2 testing available.
  • Suggest your doctor check out the table of contents for MitoAction's Clinician's Guide.

STEP 3: Learn About Treatment.

Does Your Child With Autism or ASD Have An Underlying Mitochondrial Disorder?

Do you have a child with autism, PDD, PDD-NOS, or Asperger's Syndrome who has other unexplained medical conditions?  Many parents and physicians are investigating the association between atypical autism and mitochondrial disease.

You may have heard other parents or physicians talking about mitochondrial dysfunction; however, you may have no idea if mitochondrial disease is relevant to your child. Research looking at the connection between autism and mitochondrial disease in 2005 and 2007 first estimated that the cohort of children with ASD and overlapping mitochondrial disease could be as low as 4.1 to 7%.

Current research suggests that the link between these two diagnoses may be greater than previously suspected. As a result, the paradigm for evaluation of children with autistic symptoms is changing. Mitochondrial experts have stated that some mitochondrial diseases are potentially both genetic and environmental in origin. And some believe there is a genetic predisposition with an environmental "trigger" (such as fever or illness) in some cases.

Appropriate identification of children with mitochondrial disease and autism may improve their overall outcome. Currently, clinicial treatment approaches for children with ASD and Mito focus on improving metabolic support and mitochondrial function through use of vitamins and supplements called the "Mito cocktail." Energy management conservation and other supportive care are equally important.

It is our hope that this section will serve as a tool for education, support, and a starting point for discussion with your doctor. We hope you will use the autism categories on the left and join our monthly calls to learn more.

Alyssa Davi, Parent Advocate

Autism@mitoaction.org


We would like to make families aware of an important study currently recruiting patients at Arkansas Children’s Hospital Research Institute.

http://achri.archildrens.org/Clinical_Research/Studies/MitochondrialDiseaseASD.html

Study Title:

Defining subgroups of mitochondrial disease and dysfunction in autism spectrum disorder

Study Description:

Researchers at Arkansas Children’s Hospital Research Institute are conducting a study examining mitochondrial function in children with Autism Spectrum Disorder. The study will address how mitochondrial dysfunction is related to abnormalities in oxidative stress and how it is related to development and behavior. The study will assess mitochondrial function in several groups of children ages 3-14 years of age, including those with autism spectrum disorder, mitochondrial disease, developmental delays as well as those that are typically developing. The study consists of collection of a blood sample and an evaluation of behavior, development and language (unless your child is typically developing).

Study Eligibility:

We are recruiting children between the ages of 3-14 years who fall into one of the following groups:

1. Typically developing
2. Diagnosed with Autism Spectrum Disorder using gold-standard criteria
3. Diagnosed with Mitochondrial Disease
4. Diagnosed with both Autism Spectrum Disorder and Mitochondrial Disease
5. Diagnosed with Developmental Delay without Autism or Mitochondrial Disease.

Contact Name and Number:

Please contact the study coordinator,

John Slattery, at 501-364-3556

jcslattery@uams.edu

 

Bryan (left) and Will (above) have ASD/Mito but it doesn't define them.

Information and support for families seeking information about the connection between ASD and mitochondrial dysfunction

MitoAction is pleased to offer the following support services for families seeking information regarding the link between autistic spectrum disorders and mitochondrial disease.

Moving forward, we will have quarterly call topics relevant to ASD and Mito. This call will be an hour and a half long and there will be an opportunity to ask questions at the end.

These calls will take place the second Tuesdays of January, April, July and October at 12:30 p.m. EST.

To participate in this resource-share by telephone, please call 1-866-414-2828 and enter code 017921# at the prompt.

The next call is:

April 8, 2014

Please join MitoAction on Tuesday, April 8, 2014 at 12:30 p.m. EST for an informal discussion about the known mitochondrial toxicity of certain medications.  Knowing this information can help you weigh the possible benefit verses risk of these medications. 
 
To participate in this resource-share by telephone, please call 1-866-414-2828 and enter code 017921# at the prompt.
 

May 2, 2014

On Friday, May 2, 2014 at noon EST please join MitoAction for a teleconference with Dr. Richard Frye where he will discuss his autism research at Arkansas Children’s Hospital Research Institute.  He is Director of Autism Multispecialty Clinic and Director of the Autism Research Program at Arkansas Children’s Hospital.

Here is a link to Dr. Frye’s bio: http://arkansasautismalliance.org/about-us/70

The Arkansas Autism Alliance (AAA) is a unique multidisciplinary group that tackles the many different behavioural, medical, social, and educational challenges that children with an Autism Spectrum Disorder experience. This group is aimed at creating a collaborative and integrated approach to understanding the causal complexities associated with an ASD, treatment interventions to promote symptomatic recovery, and dissemination of what is learned treating these disorders to the medical community at large. The AAA has developed a mission to create an autism center of excellence to not only better serve the state of Arkansas, but to also be a model of excellence in translating research findings into meaningful clinical care for families of loved ones affected by an ASD for not only the state of Arkansas, but also facilities across the world to model their management of these children and how to promote hope and healing to those that are afflicted.

Here’s a link to the Arkansas Autism Alliance: http://arkansasautismalliance.org/

All are welcome. Please feel free to forward this announcement to other interested families.

For more information on mitochondrial disease and autism, please read about past calls. Please visit www.mitoaction.org/autism and click the RESOURCES link on the left.

Email your questions to: Autism@mitoaction.org