The Genetics in Medicine journal has published a research study in its January 2008 issue detailing a road map towards creating a genetic diagnostic test for autism spectrum disorders. I can only imagine what those who think autism is *only* vaccine-induced must be thinking. This quote from the study intrigued me:
Epidemiologic data support the presumption that autism is primarily a genetic disorder. The calculated heritability of autism is around 90%.
That is a pretty bold statement but one which makes sense, in my opinion.
To read the entire article, follow the link to the Autism News Direct’s report: Genetic Diagnosis for Autism Explored.
Many autism and Asperger’s parents groups in Arizona are trying to get a bill out of committee that would require insurance companies to provide insurance for autism, Asperger’s Syndrome, PDD-NOS and other spectrum conditions. Arizona would not be the first state requiring such coverage but would most definitely be one of only a handful of state’s mandating this. This is a very important topic for me. In Arizona, only children with a diagnosis of “autistic disorder” qualify for services past the age of six. What this means, for me, is that any therapy needed for my son comes out of my pocket. At sessions that can average $100/hour, the money adds up quickly. If this bill were to pass then a huge financial burden would be lifted from my shoulders, and from the shoulders of many other parents in Arizona.
A candlelight vigil to support this autism insurance bill will be held on January 29, 2008 at the Arizona State Capitol. Organizers are hoping that with a large turnout legislators will see just how many people are affected by autism spectrum conditions in the state of Arizona. I will be sure to post updates on the topic as they become available.
This year, my husband’s company offerend an insurance plan that would provide therapy for children with developmental disorders through the age of six. I am glad for their forward-thinking but unfortunately for us my son is already six. Had this plan been available a year ago we likely could have saved thousands upon thousands of dollars.
One year ago today the doc that had been assessing my daughter said “she is autistic.” Of course it wasn’t too much of a surprise, once we started the testing I knew the direction things were going. It was a little bit of a punch in the gut but by no means devastating. Admittedly I was a little relieved because I felt I had more direction in her life. I think the only reason I remember the date is because it was the day before her 3rd birthday. Now here it is the day before her 4th birthday and I am sitting her reflecting on the last year.
It has been a year of tremendous growth, lots of backsliding, and a whole heckuva lot of fun. All-out meltdown at Sea World complete with judgmental parents telling me my child was spoiled. Numerous parents commenting on public freak-outs and diapers on a “child her age.” Lots of dirty looks, rude comments, and nice enlightening conversations on my part (depending on my mood hehe). What I do know is over the last year not only has *my* understanding and impression of autism and all spectrum disorders changed but so has that of all of my friends and family. My daughter is a happy, affectionate, and loving little girl and I am so thankful to have her in my life.
My son, who will be six years old tomorrow, has started having very aggressive meltdowns. These are different than previous meltdowns as there is an obvious level of rage involved. I’ve previously posted about two of his recent tantrums (Tantrums Take Two and Tantrums - Again?). Thoseseemed to be a trigger for even more. If he has an expectation in his mind that is not met he freaks out. One morning he woke up early and climbed the pantry to get to a new box of cereal; he was sneaking food. He does this all the time yet he’s still more than 10% underweight. The rule in our house is that if you sneak a food item you do not get any of that food item again that day. So he was not able to take some of the dry cereal to school. My sweet little boy instantly changed; it was like he was suddenly filled with rage and he just had a meltdown. He was yelling, screaming, hitting himself, stopping his feet, and slamming his door against the wall. He had two hands on the door and was slamming it into the wall just as hard as he could. Then in an instant it was over and he was my sweet little boy again. Woah turnaround.
We managed to get in to see his psychiatrist on a cancelled appointment (to avoid a month-long wait) and she has suggested that we start Risperdal. She wants to start the dose very low, 1/2 of a .25mg table. She said that it is very good for aggression and rage in spectrum children. Being the avid researcher that I am, I started reading up about it and sure enough on all of my autism/Asperger’s groups and message boards there are many parents whose children are either currently taking Risperdal or who have previously taken it. I waited until I’d done enough research to be comfortable and then started him on it Saturday night. I wanted to make sure I was around on the day following his first dose to ensure that he didn’t have any odd or noticeable side-effects. Thankfully all has gone well.
In my research I found that one of the most common side-effects is increased appetite and as a result weight gain. If this is something that can be kept in check this could be very beneficial for Alexander. Even if he gained 1/3 of his current body weight he’d still be within the range of normal. He’s only taken it for three nights but thankfully we haven’t had a full-on rage-y tantrum. Fingers crossed this works!
Alright I’m hopping back in the saddle again. My life has been in an absolute downward spiral lately and I feel like I’m suffocating. I’ve decided that I absolutely must return to blogging. It is a sanity saver for me. Without going into too much detail (for risk of boring you to death) the prospect of being a single mother to two spectrum kiddos has been lingering on the edge of my reality. Right now it doesn’t appear that this is the direction my life is going to take but who knows what the future holds.
On to topical information…
The Autism Society of America’s 38th Annual National Conference was held in Scottsdale, Arizona this past week. It just so happens that this is within driving distance for me so I decided to go. I’ve had two kiddos diagnosed as being on the spectrum within the last year I figured I could at the very least learn something useful during the conference. I am so glad that I went, I learned way more than I expected and came out of it feeling inspired.
I listened to speakers discuss topics such as Potty Training, Asperger’s Syndrome and Bullying, and an absolutely inspirational speech given by two teenagers on the spectrum. Jordan Ackerson (a 19 year-old recent high school graduate) and Elijah Wapner (a 17 year-old soon-to-be high school junior) shared their stories with the audience. At several points during their talk I was near tears with a smile on my face and a warm fuzzy feeling in my heart. A lot of the parents there had older children but I felt that it was important for me to attend this discussion even though my children are still so young.
One of the hardest parts post-diagnosis for me was wondering what, exactly, my children’s future may hold. I was able to let go and move on when I realized that even parents of neurotypical children don’t honestly know what their children’s future may hold. Seeing these two young men talk gave me a feeling of comfort; I know that my children’s future will be bright and while it may not follow the common path for neurotypical children they will most definitely be successful and happy in adulthood. Thank you Jordan and Elijah for sharing your stories with us, words cannot express how truly wonderful I felt after that discussion.
The ASA has it’s negative sides but for the most part I was able to avoid getting drawn into any biomedical debates/conversations. I skipped over the Kirkman and Great Plains Laboratory booths at the exhibitor exposition and instead went to the booths that pertained to me and my family. I was able to stock up on some fun sensory toys (discounted and no shipping!) plus some handy social skills tools for my son. One speaker informed our group that next year’s conference is going to be held at the Grand Palms Resort in Pembroke Pines, FL. Well that isn’t within driving distance but I’m already making plans to go.
A little background on the players.
Bob and Suzanne Wright - Co-founders of Autism Speaks, grandparents of a child with autism
Katie Wright - The Wright’s daughter, parent of a child with autism.
David Kirby - Author of the controversial book “Evidence of Harm”
On April 19, 2007, Katie Wright was interviewed by David Kirby. I did not catch the original interview but Katie Wright discussed her views on vaccine injury as a possible cause of autism as well as discussing Autism Speaks as an organization. The interview was discussed at-length in the autism world from all points of view.
Fast forward to today and the issuance of a statement by Bob and Suzanne Wright. The statement starts off with the following paragraph.:
Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.
Hmm. That’s a pretty bold statement. I’m interested to see the direction this plays out in the public.
Another blog entry on this topic: Autism Vox: Katie Wright Does Not Speak for Autism Speaks
Last week I was sent a link to a YouTube video published by an individual named Christschool - the video is titled “Autism Everyday is a ‘Doctored Film‘”. I don’t know much about the individual who produced the video but he seems to be fairly popular with the neurodiversity proponents. The video is long, 15 minutes, but I figured it was worth 15 minutes of my time if it countered the awful video produced by Autism Speaks entitled “Autism Everyday“. As I expected it was definitely worth that 15 minutes of time. Bravo Christschool for an excellent video.
A few days after I saw the video the topic came up on one of the autism message boards that I go to. This is a general parenting site that has a subsection for autism and while I read daily I usually only post a few times a week. I often-times find myself shaking my head at some of the discussions being had on this board. It is not uncommon for posters to come on and ask advice from other posters about how to implement their new EDTA chelation protocol or to find out how many B12 shots to give. The gluten-free/casein-free (GFCF) diet is also discussed regularly and one mother actually decided to stop an important medication for her child at the recommendation of another poster because the medication contained lactose. No call in to the doctor to determine the effects of stopping the medicine, just an “ok, this is an infraction, we’ll stop it.” I can only imagine the roller coaster lives that some of these children may lead.
So this video comes up as a topic of conversation and a good 95% of the posters railed the original poster for daring post something that speaks against Autism Speaks. Several mothers chimed in that they, too, have felt that death was the only option for their child at some point in their life. Then the wars went on to parents of “high functioning” children vs. parents of “low functioning” children. How dare a parent of a “high functioning” child post something like this - their child isn’t “low functioning”, they don’t know how hard life is. I never bothered to post on this thread but like an train wreck in slow motion I couldn’t keep myself from watching.
I have touched on the divide between the biomed crowd and the neurodiverse camp before. I am still relatively new to all this but have found myself completely on the neurodiverse side of things. No I don’t think there is a cure for autism. No I don’t think Autism Speaks speaks for my family. I am surprised that a lobbying organization the size of Autism Speaks has no autistic individuals on their board, no autistic individuals that speak at their meetings, basically no input at all from adult autistics. I have read many reasons as to why this may be happening but the consensus seems to be that the leaders and members of Autism Speaks don’t want to envision a future where their autistic children grow up to be autistic adults. If they don’t recognize that reality now then perhaps they won’t have to face it in the future.
Okay this post seems to have meandered a bit - just a braindump on my part that started with Christschool’s video. I wanted to close this post with a link to post made today by Kevin on his Left Brain/Right Brain blog. Kevin is a fantastic blogger and neurodiversity champion. Enjoy: On Media, neurodiversity, and science.
This is an article that I received from the Asperger’s Parenting group I belong to. I wanted to share it as I found it quite fitting for today, Mother’s Day. Happy Mother’s Day to all of the moms out there!
**********
MOMS AND UNPREDICTABILITY
By Julie Coulter
Years ago, I was driving our minivan west on Georgia Route 316 towards the
orthodontist’s office in Duluth with the kids in the back seats when I heard
my son, Drew, say, “Mom, I have a gum wrapper stuck up my nose.” Staying
focused on keeping the car on the road, I calmly said, “Can you try and blow
your nose and see if it will come out?” You see, Drew had braces on his
teeth at the time and couldn’t chew gum. Someone had left a gum wrapper in
the little cup holder in the very back of the van. Since he was very
observant and had noticed it and since he couldn’t chew gum, he said he just
wanted to “smell it.” So he had held the little rolled up wrapper up to his
nose and…
We didn’t learn how to deal with this in those weeks of childbirth classes
prior to Drew’s birth. We didn’t learn a lot of what we would need to raise
children. Maybe the fact that we missed the last childbirth class because
we were in the birthing room that day when Drew arrived ten days early
should have been a clue that life was about to lose predictability. We
certainly didn’t learn about life with a child on the autism spectrum.
During the last year, Dan and I have had the wonderful opportunity of
meeting families who live everyday with children and young adults on the
autism spectrum, while producing our videos for the siblings of those on the
autism spectrum and with Asperger Syndrome. In most of the interviews, Dan
ran the camera and I was the interviewer, talking to the parents and
children who have family members on the autism spectrum. Many times, I
found myself fighting back tears in listening to the mothers tell about how
they have learned to support their children, work with school teachers and
officials, teach themselves how to parent a child with special needs, and
cope with a life that came as a series of surprises. I listened to their
stories of hard-earned achievement and triumph as their children learned new
things and made steps forward.
One thing is predictable in the world of the autism community: watching our
unpredictable children succeed in their attempts to learn to deal with
unpredictable daily living makes us very proud.
Oh, yeah, about the gum wrapper. You will be relieved to know that our 23
year old son is not walking around with a gum wrapper up his nose. My
advice doesn’t always work, but that day, it did. Drew blew out the
wrapper. Some days, he and I handle the unpredictable very well. Some
days, we struggle.
Doing these interviews reminded me what a tremendous resource mothers can be
for each other. I am so very thankful for the chance to learn from others
how they handle their unpredictable days. When we need support or advice,
it helps to remind ourselves that we can turn to family, friends,
professionals, and especially, to others like ourselves.
We are not alone.
Happy Mother’s Day!
ABOUT THE AUTHOR - Julie Coulter is the co-producer of the Intricate Minds
series of videos that help classmates understand and accept students who
have Asperger Syndrome and autism. You can find more articles at her website
at www.coultervideo.com.
Copyright 2007 Julie Coulter All Rights Reserved. Used by Permission.
The CDC and the Interdisciplinary Council on Developmental and Learning Disorders has released new guidelines for identifying children at risk for Autism Spectrum Disorders and other developmental delays. From the press release dated today, 4/23/07:
Leading experts on child development today presented a new framework for identifying children at risk of Autism Spectrum Disorders (ASD) and other developmental challenges, saying that current guidelines fail to identify many children who need and would benefit from early intervention.
The framework is contained in a report by a special working group formed by the Centers for Disease Control (CDC) and the Interdisciplinary Council on Developmental Learning Disorders (ICDL), co-chaired by Dr. José Cordero, former Director of the CDC’s National Center on Birth Defects and Developmental Disabilities and currently Dean of the School of Public Health of the University of Puerto Rico, and Dr. Stanley Greenspan, chair of the ICDL.
We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.
The framework presents newly formulated indicators to identify at-risk children in the first and second years of life, components for a comprehensive evaluation of infants and children determined to be at risk, and essential elements of a successful early intervention program for ASD and other developmental disorders.
The authors say the new rubric casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities.
“Children identified with developmental or behavioral disabilities earlier have a better chance of reaching their full potential,” said Dr. Cordero. “We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.”
The CDC-ICDL framework is based on current understanding of healthy developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social, and cognitive milestones during a child’s first 2 years of life.
The entire press release can be viewed here: New Guidelines Promise Earlier Identification of Autism - CDC/ICDL Working Group Releases New Report during Autism Awareness Month and the report can be viewed on the ICDL website: CDC/ICDL Collaboration Report On A Framework for Early Identification and Preventive Intervention of Emotional and Developmental Challenges
In honor of National Autism Awareness Month there are two shows airing tomorrow, April 22. The first I have discussed: Nick News with Linda Ellerbee will be focusing on the topic Private Worlds: Kids and Autism. The show will air on 4/22 at 8:30pm ET/PT on Nickelodeon; check your local listings for the broadcast station number.
Another show that will be on tomorrow is called After Thomas. After Thomas is based on the true story of the Gardner family who live in Scotland. The movie focuses on their son Dale’s (Kyle in the movie) bond with the family dog Henry (Thomas in the movie) and the trials and tribulations they face in an era where there wasn’t as much known about autism as their is now. Dale is now a 18 year old who has made tremendous growth when compared to the child depicted in the movie. This will air on BBC America at 8pm ET/PT.
I have my DVR set to record both shows and will give a follow-up review of them early in the week.
