Befrosted Paths to the Unknown

As I begin to share our family’s journey through the hell of autism, I have to be frank and tell you that I do not like to write this story. It makes me angry, but most of all it makes me want to cry for the precious time and lost years during which our two boys with autism spectrum disorders have not been able to access medically necessary treatment due to the barriers to care that are the Extended Care Health Option (ECHO) program.

Our family has been so traumatized by the impact of autism and the lack of services available for our children that I am unable to speak about what we have been through to a large degree. The only way our family has been able to help our own children is to turn the trauma that we have experienced into action through advocacy to help all children with autism; both military dependant and civilian children alike.

It is through daily prayer which I firmly believe has been heard by God, Mother Nature, and Saint Jude, that our family has been able to “carry on”. It is my hope and prayer that you will find what I am able to share with you following below, to be so disturbing that it will lead you to action on all levels to help our children with autism and our families. It is also my hope and prayer that you realize that what has happened to our family is not unique.

My husband, SrA David G. Warner II and I have been married for eleven years. My husband has been active duty for almost four years and is attached to The Portland Air National Guard in Portland, Oregon. We have four children. Isaac is eight and has been diagnosed with an autism spectrum disorder, tethered spinal cord syndrome, spina bifida occulta, and also has a trebeculated bladder with diverticuli. Nathan is six and has also been diagnosed with autism spectrum disorder. Emma is four, Samantha is one, and both are typically developing.

To say that autism has impacted our lives is a gross understatement. To say that autism has turned our lives upside down and inside out might some a bit closer to the truth, but still, a gross understatement. Autism has touched every single area of our lives; from grocery shopping, to family outings which are non-existent now due to the unpredictable nature of autism. In the rare event that we do all go somewhere together, I have cards that I carry in my purse ready to be handed out that explain autism, in case there is a meltdown.

I cry when I think of how far into recovery my boys could be right now had they ever been able to receive the medically necessary treatment they need through the ECHO program. I find it unconscionable that a price tag has been put on our children. I am disturbed to know that over ninety-five percent of our military dependent children with autism have been denied medically necessary treatment through the ECHO program policies. I am absolutely heart broken when my phone rings and it is another military family getting in touch with me (as happens roughly three to four times a week) and these families are all saying the same thing. My child is going without medically necessary treatment because of the ECHO policies.

Autism and the special needs of our older son have negatively impacted our relationships with our other children, our friendships, our extended family, our marriage, and sadly my husband’s military career.

I get angry when I think about the support, or shall I say lack thereof, that our family has received from our own base. Two years ago my husband went stateside TDY and was scheduled to be gone for a period of three months. Our younger son (he is more severe on the spectrum) regressed severely, and became extremely aggressive. I reached out to my Family Program Coordinator for help, resources, and support. She recommended that I put my son in foster care. Nathan ultimately had to be hospitalized due to his regression and aggressive behavior. The hospital wanted my husband to return home. A Red Cross message was sent to my husband’s home base chain of command, and chain of command at his TDY station. His Major (who was then a Captain) did absolutely nothing. Ultimately a second Red Cross message was sent. My husband’s Major again did not issue a leave number. When my husband did finally return home on emergency leave, we were both met with threats and intimidation from his chain of command.

What needs to be understood is that this whole situation never would have happened had our family been able to access medically necessary treatment for our boys’. Our family has never been able to access treatment through ECHO, and sadly the demonstration project does nothing to increase the accessibility to treatment; in fact the demonstration creates further barriers to adequate treatment.

I hear new stories every week from all over the world regarding rampant lack of support and denial of medically necessary treatment for our children with autism and other special needs. In fact our family has felt it on both the level of autism and the other special needs, and again directly from my husband’s chain of command. This past fall when our oldest son Isaac had surgery to un-tether his spinal cord (see attached picture of my son’s spinal cord during the operation), my husband received a letter of counseling (LOC). My husband’s Major ordered him to schedule Isaac’s post surgical follow-up appointments outside of his micro-neurosurgeon’s recommendations and medical advice. The Major is not a doctor and most certainly not a micro-neurosurgeon. The Major ordered my husband to do this knowing I was available to take our son to his follow-up appointments. The Major in question and ALL those in my husband’s chain of command have refused to remove this LOC from my husband’s file. This is discrimination against our military members who have children with autism and other special needs at its finest.

That what it is; my husband dons his uniform daily with pride. I wear his dog tag with pride. When I am asked for ID in any situation, I pull out my military ID. When my husband is deployed, it is I who is holding down the home front I am proud to be of service to my country as well. I press my husband’s uniform and feel proud to do so. My husband and I are proud to serve our country, even amidst the lack of services, intimidation, and blatant discrimination we have and continue to experience by the organization we serve under.

I recently read an article in which Secretary Gates stated: “I’m asking you to be part of the solution and part of the future”. Secretary Gates, and anyone else reading our story, I am asking you to “be part of the solution and part of the future” for our children with autism and for our country. Our children can no longer be ignored, our numbers are too great. According to the Department of Education we have one in every sixty-seven children in America receiving special education services under the autism eligibility category. One in sixty-seven children with severe autism! If our children are not able to access medically necessary treatment in the immediate future, in another ten years (if even that long) our country is going to be in complete financial crisis because of the autism epidemic.

The truly saddening thing is; the impending financial crisis can be avoided. Children with autism can recover, just as children with cancer can recover.

A dear friend of my great-great-great uncle Ralph Waldo Emerson once wrote:
“Your doctors, and your proctors, and your deans,
Shall not avail you when the Daybeam sports
New risen o’er awakened Albion. No!
… Because your manner sorts
Not with this age wherefrom ye stand apart,
Because the lips of little children preach
Against you, you that do profess to teach,
And teach us nothing, feeding not the heart.”
Lord Alfred Tennyson

I ask you to consider this timeless poem in deep reflection and think of the autism epidemic. The heart is our children and our children are our future. We have a moral and ethical obligation to offer every single child with autism the opportunity for recovery.

Thank you for the opportunity to share what I am able of our family’s story. Thank you for the immediate and necessary action you will take regarding the medically necessary treatment coverage for our children with autism spectrum disorders. Thank you also for the immediate and necessary action you will take to help our children and families as outlined and supported wholly by our national autism organizations as demonstrated in the fully endorsed letter to Secretary Gates regarding such.

Very Respectfully,


Angela Warner – Air Force wife and mom of four children (two with ASD)
Vancouver, Washington