A Teenager with ASD writes "My Autism Experience"

Nicky’s ability to communicate his emotions and feelings verbally (or in writing) is very limited. He still can’t tell me if he is sick, or in pain, he can’t express how he feels about most things, or spontaneously tell me he loves me. He communicates most emotions very simply; smiles, laughter, anger or crying. He has just learned the response “I am fine” in response to being asked how he is doing. I know he has feelings but he just can’t get them out.

For this reason the phrase “Out of the Mouths of Babes” takes on very special meaning when the babe has autism. Last week one of Nicky’s therapists asked if I wanted to read a story written by one of his students (a high functioning child with autism) that he was really proud of. My response “Of Course”! I leaped at the chance to hear one of our kids thoughts being communicated it’s my only door into how Nicky might be viewing the world. I was so impressed that he was able to communicate his feelings and tell "His" story, and share his very special perspective. I was so moved by this young man’s story I got permission to share it with you.

I hope one day Nicky will be able to write about how he is feeling. I am sure I won't be happy about everything he has to say, but I know I will be overjoyed that he was able to say it!!!

PS: You might need a tissue for this one.

MY AUTISM EXPERIENCE

Author, unnamed

Thirteen years ago, way before I was an adolescent or even a boy, when I was just a simple toddler, my life was turned upside down by autism. For ten years I was doing unnoticed behaviors for example, I was thinking of random thoughts and saying random sentences. The other students would look at me funny. The teachers and students at school did not know how to deal with me. And I didn’t know either. I had an aide, however, I didn’t really know why. When I was at home, I tried to act “normal.” They had given me a lot of rules and I felt it was unnecessary to have them. When I look back, I realized that I needed that structure. While I had rules and regulation, I realized my sister didn’t receive the same attention. This caused our relationship to be difficult.

When I was thirteen I was in middle school when I learned the truth. A student in my homeroom class asked me if I was autistic? I was shocked and realized after all these years that was the reason why my behaviors were out my control. I went home to think about the question more. I didn’t even want to share my feeling the my family. I felt it was too personal and unbearable.

Ever since then I have wanted to erase my past. I have done this by pretending to know people I knew when I was younger. That way, I wouldn’t have to deal with the pain, hardship, and above all, the string of the childhood ordeals. But when I went to Jay Noland camp at 15 I was ashamed of 2 cabin members who were lower functioning than I, which was bothersome because one of them defecated on the floor of the cabin, it kind of meant the nightmare I tried to evade returned. I was crying as soon as I left the camp. I was even more ashamed when I ran into another student that was lower functioning at my high school which kind of was the same thing I was put through. I tried my best to hide from the student and pretend to now know him/her. Now I have a better tolerance for autism. Now realizing I was higher functioning. I was smarter than the lower functioning people. Now look at me I am more successful and less abnormal (socially). However, I have one small glitch laziness’ and outburst that are seldom. I knew that student from therapy. I was luckier than him/her because I was responding to the treatment. What I am trying to say is my condition is improving quickly. I am so happy I survived the ordeals I was put through when I was a young boy.

Otherwise, I would have been extremely miserable beyond imagination. In fact, I would cry once in a while whenever the flashbacks visited my heart; When I was asked the same question at 13 that day, I said this one thing in my mind “Well I’ll be, that explains a lot, after all these years; I at least learned the truth, and THANK GOD”.

It was hard to believe that I was ever developmentally disabled. Otherwise I would’ve been completely sorrowful for my entire lifetime.

Landmark Study: Autism Recognized as Medically Treatable

The journey continues. We all know there is no medically proven cure for autism, there is no pill our kids can take, no surgery, no proven protocols. It's the survival of the fittest disease and every family does the best we can from therapeutic interventions, to oxygen chambers to special diets; we are all trying to find an answer for our child or children. We're all waiting for better answers and hoping it will not be too late for our kids. Scientific communities now frequently report on the new and exciting methods of early detection and treatment for the 1-3 kiddo's. This is progress, but there is not so much about how to help the bigger kids and adults. Nicky is ten and I don't hear as much about how to help kids his age.

I am however encouraged by the sheer numbers of folks now concentrating on the problem. Seems to me that each study, no matter what the results checks one more item off the "maybe" list brining us one step closer to a possible answer. I found this today and thought it was well worth posting. Keeping with my usual drill I have sent it to Nicky's doctors asking for translation and thoughts on how and when this information will make a difference for Nicky. I hope they have good news for us.

RESEARCH

Landmark Study: Autism Recognized
As Medically Treatable

In April of 2008, the American College of Medical Genetics (ACMG), an AMA- recognized board, issued clinical practice guidelines that clinical geneticists should follow in determining the etiology for those with an autistic spectrum disorder (ASD) diagnosis and in treating patients with this diagnosis. This study, "Autism spectrum disorder-associated biomarkers for case evaluation and management by clinical geneticists" in Expert Review of Molecular Diagnostics,1 confirms that there are now well- established, routine, clinically available, identified biomarkers to help clinical geneticists medically evaluate and treat individuals diagnosed with an ASD and briefly outlines some recognized biomarkers. Depending on the cause of the ASD, these researchers have found that "associated medical risks may be identified, which may lead to screening and potential morbidity prevention in patients and other family members." The non-profit CoMeD, Inc., and, through a grant from the Brenen Hornstein Autism Research & Education (BHARE) Foundation, the non-profit Institute of Chronic Illnesses, Inc. funded this research study.
The important clinical tools identified for medical evaluation and treatment response monitoring included:
• Pophyrin biomarkers – to help determine if mercury toxicity is present, and, when it is found, to monitor changes in mercury-burden during detoxification therapies.
• Trans-Sulfuration biomarkers – to help determine if mercury biochemical susceptibility is present and, when it is found, to monitor patient response during supplementation with nutritional therapies such as methylcobalamin (the methyl form of vitamin B12), folinic acid, and pyroxidine (vitamin B6).
• Oxidative Stress/Inflammation biomarkers – to help determine if there are excessive by-products of metabolic pathways, and, when they are found, to monitor patient progress during supplementation with anti-inflammatory drugs such as Aldactone® (spironolactone).
• Hormonal biomarkers – to help determine if hormonal abnormalities are present and, when they are found, to monitor patient progress during the indicated treatment with hormonal regulation drugs such as Lupron® (leuprolide acetate) and Yaz® (drospirenone/ethynyl estradiol).
• Mitochondrial Dysfunction biomarkers – to help determine if there are disruptions in the energy production pathways, and, when they are found, to monitor patient progress during supplementation with drugs such as Carnitor® (L-carnitine).
• Genetic biomarkers – to help determine if there are genetic causal or susceptibility factors present, and, when they are found, to provide insights into behavior modification to help reduce the impact of such genetic factors.
+ Read more: tinyurl.com/5mzhz7

The Financial Burden of Autism. A new study tells the untold story we all face

The cost of autism in our household is never ending. From dental care (his first dental procedures at age 5 cost over $4,000), to medications (high co pays and some not covered by insurance), to non covered interventions and supports. It's expensive. This is not a new story...I will never forget my first call to my insurance company asking for help. I remember it so well I can repeat it word for word, so I will. Here goes:

Me: Hello I need a medical referral for my son
Insurance Co: Okay. What do you need a referral for?
Me: My son needs a referral to a speech pathologist.
Insurance Co: Why? What is the diagnosis?
Me: Because he used to talk, and now he can't talk. I don't have a diagnosis, that's why I
need the referral.
Insurance Co: Well without a diagnosis we can't make a referral.
Me: Well the diagnosis is HE HAS LOST HIS ABILITY TO SPEAK, isn't that enough.
Insurance Co: No mam, that is not enough, we need a diagnosis
Me: Well how do I get one without seeing a specialist?
Insurance Co: I don't know. You just have to have a diagnosis for me to help you.
Me: I was told that I should call my insurance company for the referral to a speech pathologist to find out what is wrong.
Insurance Co: No mam, I understand but that is not enough, we need a diagnosis
Me: Well, I spoke to one person who said I should see a speech pathologist and get him
evaluated for Autism, that might be the diagnosis.
Insurance Co: Sorry, mam we don't' cover autism. I can't help you.
Me: You can't help me?
Insurance Co: No mam, we dont' cover autism and with that diagnosis speech would not be considered a medically necessary treatment.
Me: My son's lost of speech isn't covered because what? Helping him isn't medically necessary? Are you for real?
Insurance Co: I'm sorry mam I can't help you. Is there anything else I can do for you today.
Me: I just hung up and yelled and screamed and cried.

Eventually I found a speech pathologist and we paid out of pocket until I was able to get other resources and eventually my insurance company began helping. However, this is just one example of the challenges we face when seeking care for our kids, who have a diagnosis not fully recognized by the medical community. This new study speaks to that challenge and it's well worth the read.

Today I found this article and I had to post it. It speaks directly to a problem I dont' hear enough about, how we pay to help our kids when the systems don't recognize our needs as "medically necessary".

FINANCE

Study Shows Families' Financial Strain
From Autism

The Associated Press is.gd/9KIt

More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.
Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.
"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.
The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.
A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.
The study appears in December's Pediatrics, being released Monday.
Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.
Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.
Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.
She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.
Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.
Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.
She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.