All April Fools jokes aside--there is something serious and close to any parent's heart that begins today: Autism Awareness Month. Many readers of this blog have children under 5 so you, like me, must have noticed how autism is in the news more and more these days. It's not just your imagination: The prevalence of autism has increased tenfold in the last decade. Autism spectrum disorders are diagnosed in 1 out of 150 kids in the U.S. For reasons that are still unknown, these disorders affect four times as many boys as girls. Clearly indicating the severity of the situation: The Center for Disease Control recently declared autism a "national public health crisis" whose cause and cure remain "unknown."
Anybody who reads anything--from the Times to Us Magazine--knows the controversy the mere uttering of the word "autism" can catalyze. From Jenny McCarthy claiming she has "cured" her son's autism, to debate about the propriety of vaccinations, to the hushed tones about over-diagnoses as a sort of "catch-all"--the topic is rife with hullabalo and polemic. But more information is never a bad thing, right? And more information takes more research; which requires more public money; which requires more awareness.
Want to learn more? Tomorrow happens to be World Autism Awareness Day. Find out more here. Want to support with a little bit of retail therapy? Check out the ever-growing list of stores that have pledged support to the cause, and also take a look at this Judith Ripka pendant which benefits Autism Speaks (the nation's largest autism science and advocacy organization). Want to be more involved, plan a fundraiser, or attend a fundraiser? See here for more information.
The logo for Autism Speaks is a puzzle piece. The disorder truly is still a puzzle and if you don't know somebody yet who has autism, the odds are good that you will sometime soon. Autism is a mystery we can begin solving in our lifetimes. Anything you can do helps.
Deepa is a wife, mother, writer and she sometimes masquerades as a lawyer as well. She revels in friendship, humor, champagne, and laughing at herself--often. She never ever reads US Magazine, thinks Rushdie is a genius, wishes she could write one sentence as funny as "Arrested Development," and lives in the Bay Area with her motley crew. She can be reached at deviswithbabies@gmail.com
It's such an important cause. If you haven't met a kid with autism, you don't know heartbreak. Most kids were "normal" until 2 or 3 so families knew happy, bright, engaging children who then somehow became "lost." There's nothing like it and if we can find a cure in our generation it will be a generation well spent.
Even if you don't believe in vaccinating your kids (I am not sure where I come out on it yet), you can believe in supporting research for autism.
Something you wrote is very telling: How autism is in the news more and more. And the ten times increase in its prevalance? I'm no scientist but how can there not be some sort of over-diagnosing? What else has changed to make it so much more common.
I have two boys so I of course worried about the prevalance amongst males.
It's such a horrible disease.
While I applaud the retail businesses trying to support the cause, I am thinking our money is better spent going directly to Autism Speaks or some other organization than buying jewelry.
Thanks for spreading the word. A boy in my son's class is autistic and it has been a crash course in getting up to speed for all the other parents. It's great to learn that autistic children really can be included in the "maintstream" events of childrens' lives (school, birthday parties, etc.) with just a little bit of planning.
My 3 year old was diagnosed as autistic after a year of ruling everything else out. It is a heartbreak I know I will never, never be able to put into words. In some ways, for us, it has been as if he died. I hope to one day be involved in finding a cure and raising awareness but right now I mostly just cry. I was happy to see this on this blog though as Indians often prefer to brush these things under the rug. I have never met another autistic Indian and I wonder all the time what I did wrong.
@P's Mom: So sorry you are going through this. I have been involved in raising money for autism and other causes for 5+ years now and what you are feeling is completely normal. But please know that your little child is still alive and is capable of a wonderful life. I hope you have looked into support groups too.
http://www.mdjunction.com/autism
N.M., a clarification, Autism is not a disease. It is complicated, though. I think a lot more kids on the higher end of the specturm are being classified as autistic while they would not have been a generation back. I have a niece who has been classified on the spectrum and my sibling knows many other South Asian children who are on the spectrum. I feel it is important to not feel a sense of hopelessness. My niece, for example, is on the milder end of the spectrum and is extremely bright and academically gifted. With early intervention she is also improving with her social interaction. She will probably always be an introvert and socially awkward but we do not have any less hopes for her than we would for any other child in our family. I fully understand that it is harder for kids with more classic symptoms. I just wanted to point out that there are kids with the diagnoses that can do well, be mainstreamed, go on to college, jobs, etc. (with a little patience and less judgment from folks who just assume these kids have bad parents) and their families often want support and understanding and not pity. One thing you can do to help: if your child is "normal" and has kids in her/her class that are on the spectrum, ask the parents of the kid if they want to set up a play date with yours. Kids on the spectrum show a lot of improvement with more social stimulation but often other parents do not want their kid to associate with the odd child in the group.
@P's mom: You're in my thoughts, big hugs.
Couldn't agree more with the poster above who talks about "normal" milestones for kids diagnosed with some sort of autism. Obviously there is a range but because of that many children with the diagnosis aren't that different than the other kids around them. We need to treat them like "normal" so they feel "normal"--it works.
my niece is autistic and, honestlym it has destroyed my family because everyone has dealt w/ the diagnosis differently (it just happened 4 months ago). i think my sister and her husband are going to get divorced and my parents seem more concerned with that than with focusing on my neice. nobody is at the place where they see my neice as "normal." my brother in law wont even touch her. i've never been through anything like this and wouldn't wish it on my worst enemy.
I think Nadya Suleman needs some autism awareness, how is she going to care for her autistic child in addition to all 14 others????
To P's Mom: This will pass. My daughter was born with cerebral palsy and for an entire year I thought I was going to die. She is now 4 and she has limitations that are horrible to see but she is the absolute joy of my life and I am proud of her in a way I never knew possible. The old adage is true: We learn more from our kids than vice versa. Hang in there and take advantage of every single support group you can get to.
p.s. I am Indian too and I had lots of feelings of failure prob because we are raised to be so "perfect". You get over that stuff quickly when you realize it does nothing to help your baby.
These comments are so sad, everyone who has to deal with this is in my thoughts. As a mother, I can't bear to see children suffering and I can't imagine what your lives are like but I know that our kids give us the opportunity every day to be a better version of ourselves. To grow. Hopefully you can look at these challenges that way and know thta you are inspiring to all the rest of us.
The desi issue is interesting--do you think that Indians are more likely to judge and say things like "bad parenting" like the poster above said?
To the poster who says her BIL won't touch his daugther: I read that and got goosebumps. THis sort of stuff always brings out the best and worst in people I think? I can't pretend to know what you and your family are going through but I will say from experience that if you can be a support system for your sister, and give a lot of love to that niece, you will be doing your family a service.
This may not be a popular thing to say but what is it about autism that deserves so much attention, media, money, versus other diseases and disorders? It seems like a "hot" thing right now. I mean absolutely no disrespect but aren't there lots of conditions that need funding and that need cures?
To P.'s mom, I wish I could send you a hug. I feel like after having kids, it is a series of heartbreaks. With the amount of love you have, you are hardwired for devastation. I know you will come out to a place (like the poster whose child has cerebral palsy said) where this immediate aftermath will seem like distant nightmare, and I pray it comes soon to you and you can find joy and delight in your child once more. You will be a great mom no matter what. And I feel like if you have to have a child with a handicap, America is a great place to be bc there are so many options and so much support.
To the poster whose BIL won't touch his daughter...your sister needs you badly now. Support her completely.
And to BK, I think autism is a "hot" issue because it is a real problem and it affects our children. Nothing is closer to the heart than children. Every problem and disease benefits when there are passionate, determined individuals who rally around the cause.
P's mom: I was a counselor for autistic children (camps, programs, babysitting) in my teens (over 20years ago). I have enjoyed my time with autistic children at both ends of the spectrum and everything in between (even some that had MS or celebral palsy in addition to being autistic). They have taught me patience and gave me joy, despite how challenging is to take care of them. All I can give you is comfort that your child is a blessing and in time, you will accept his condition while enjoying all the little successes you both will share.