May Day! (Every Day Is Autism Awareness Day)
Managing Editor's Note: Today is May Day. And that's a perfect play on words as families live with autism 24/7/365, not just for an "awareness" month.
By Lin Wessels
Every month really should be autism awareness month! With the numbers we’re currently experiencing in children diagnosed with autism, it ought to be considered a worldwide epidemic or a national health emergency, at the very least. According to the CDC, Center for Disease Control and Prevention, its most recent data reflects a 233% increase in autism since the late 1990’s alone. The rates have literally exploded from one in 500 to one in 150 in less than a decade. Please keep in mind, those statistics are already nearly a decade old. Although the figures where not complied and released until the spring of 2007, the data was collected on eight year olds with a diagnosis of autism in the years 2000 and 2002. This is precisely how our governmental entities such as the CDC, FDA and NIH operate, lightening speed, in sloth years. Ah yes, our tax payer dollars hard at work!
A new study released just last month in the UK relays that autism rates, in actuality, are much, much higher. The study was completed at Cambridge University where the authors revealed one in sixty British boys and girls now suffers from an autism spectrum disorder and one in thirty-eight boys, as boys are four times more likely to be afflicted by autism than are girls.
So how bad does it have to get before our government is actually concerned?
I mean honestly; you can hardly throw a rock now-a-days without hitting someone touched by autism! Perhaps Congress truly is concerned. If so, they have a very peculiar way of showing it. I can’t even begin to convey my disappointment in Senator John McCain. He committed, on numerous occasions, to help all those afflicted with autism disorder and their families while bidding for the presidency. My then five year old son with autism stood in a crowded room and asked the senator himself how he intended to help him and all of the others like him who have autism. I have to tell you, that is no small feat for a person of any age who suffers from autism. I’d be interested to hear what he has to say to my son today, face to face, two years later! April, Autism Awareness Month, has come and all but gone, and I’ve not heard him utter even a single word about autism. Not a one. Nada. Zip. Zilch! Just because he lost his bid for the presidency, I fail to see why he can’t still help us. He has since been appointed to the HELP committee; the very committee to which he requested autism hearings on our behalf, after all.
In all fairness, I have to say that President Obama also spoke of autism and his plan to help those of us living the autism rife quite a bit more frequently on the campaign trail than he does today, as well. He also stood before my son and made similar promises. He plainly stated that, “Ten or twenty years ago, no one could have anticipated that autism would be the epidemic it is today. This is why we need more funding for research. The causes of autism need to be found whether from immunizations or other environmental factors. These are the things we need to find out so we can help all children with autism.” Now, I do fully understand that the President’s plate is VERY full at the moment! I also intend to give him every just chance to prove himself. I plan to be part of the solution, rather than the problem. However, I do sincerely wish the President, along with Congress, would come to realize the magnitude of the problem we CURRENTLY face before it’s too late.
How about you, the reader? How does this affect you, and why should you concern yourself? Well, let me try to clarify. It is estimated that autism affects 1.7 million people in the U.S. alone. At the rate in which autism has been increasing, it is also anticipated that the prevalence will reach four million within the next decade. The NIMH, National Institutes of Mental Health, estimates the cost of autism to be more than three billion dollars each year in health and educational costs alone. This does not include the costs accumulated due to loss of personal potential. When all is said and done, the actual cost to society is estimated to be thirty-five billion dollars per year! In actuality, the cost is very likely to be significantly higher. As many as 79% of parents of children with autism fear their child will never become a gainfully employed individual, able to sustain independence. Adding to that trepidation, the credence that presently somewhere between 80 and 90% of all autism diagnoses adorn children, some of whom are nearing the legal age of adulthood. You now have yourself a recipe for global financial disaster. Undoubtedly, they will be forced to turn to Social Security Disability for income, a system to which they never have nor ever will contribute. Therein lies the very reason you should be joining us in our crusade to find a cause and a cure. You should be disturbed; alarmed even, that we are currently not able to meet the needs and serve each individual with autism properly in order that he or she may one day achieve his or her highest potential leading an independent, productive, full life.
I’d like to offer one last piece of advice. If you know a caregiver or a loved one to someone with autism, please give them the benefit of the doubt. Please know that they are doing the very best that they are able under extremely trying circumstances. Please, try to place yourself in their shoes. When you raise a child or care for an adult with autism, the cold, hard reality is that you won’t live forever and you had better not rely on your government even though your loved one with autism will, in all likelihood, require support for the remainder of his or her life. That conviction keeps you from sleeping at night and slaps you in the face every single morning before you even get your eyes open. When you love someone with autism, EVERY DAY is Autism Awareness Day!
Lin Wessels lives in NW Iowa with her husband Mark and son, Sam. Sam is seven and was diagnosed at the age of twenty-six months with autism. Lin has since been a tireless advocate for all individuals and families affected by autism. Because of her and Sam's work during the 2008 presidential election, the Sioux City Journal once dubbed her the "Autism Crusader". Members of her local autism support group endearingly refer to her as "the one woman wrecking ball" and on Facebook she is lovingly known as the "Autism Queen". At the public school which Sam attends and where Lin is employed full time as a paraeducator, she prides herself in being known as "THAT MOM." Lin has vowed to help improve the lives of individuals with autism or die trying; because in the end, she feels hers is not the life the matters most.
($3.2 million per individual over his or her lifetime, and on average, more than $29,000 per year per individual.) The economic impact of autism is more than $90 billion and expected to more than double in the next decade.
Sources:
http://www.talkaboutcuringautism.org/autism/latest_autism_statistics.htm
http://childhealthsafety.wordpress.com/2009/03/21/autism-rates-rocket/
http://www.siouxcityjournal.com/video/video_vid_player.php?v=20070428_mccain_384k
http://www.autismactioncoalition.org/McCain_Lieberman_letter.html
http://www.wrongdiagnosis.com/a/autism/stats.htm
http://www.rxpgnews.com/usahealthcare/Autism_Costs_35_Billion_Per_Year_to_U_S_4171_4171.shtml
http://www.easterseals.com/site/DocServer/Key_Findings_Final_12.8.08.pdf?docID=83385
I have long thought it is much higher than the 1 in 150. I am sure the APA will find a way to either deny the new stat or pat them selves on the back for what a great job they are doing diagnosis Autism and thus the higher rate. Please!!
Posted by: Ramell | May 03, 2009 at 12:21 AM
Lin, Thank you for a very nice article. Hopefully the not-affected-by-autism will start to pay more attention.
My son recently turned 18... His first Social Security check is supposed to be mailed to us today.
Posted by: ObjectiveAutismDad | May 01, 2009 at 01:51 PM
This article should be required reading for anyone who can read. May Day is definitely an appropriate title, maybe the subtitle should be: Why Everyone Should be an Autism Crusader! Keep up the good fight.
Posted by: Kristen | May 01, 2009 at 01:12 PM
Thanks for the claification, John. I appreciate it! Lin
Posted by: Lin | May 01, 2009 at 12:41 PM
Excellent piece Lin! And love the pic of Sam - he's just so darned cute! :-)
Posted by: Jeanne | May 01, 2009 at 12:02 PM
Lin
Just to mention that the Cambridge study with the I in 60 autism rate was conducted more than five years ago, and has still not been published. It was leaked in 2007, denied and then presented a few months later at an academic conference without publicity. My understanding is that it will finally be published next month, though I am sure every attempt will be made to spin the message out of existence.
http://www.ageofautism.com/2009/04/autism-the-64-billion-dollar-a-year-question-for-simon-baroncohen-ben-goldacre-fiona-fox-and-autism-.html
Posted by: John Stone | May 01, 2009 at 11:45 AM
Hey Kim ~ MUHWAH!! xoxo
Posted by: Lin | May 01, 2009 at 08:13 AM