Rising Autism Rates: What if Your Child Is the One in Eighty-Eight?

A ribbon made out of colored puzzle pieces sits on a desk with a few extra pieces laying around it. The Centers for Disease Control and Prevention (CDC) released its official autism rates this morning: 1 in 88. The rates for boys are even more frightening: 1 in 54. I’ve been sitting at my desk trying to wrap my brain around these numbers, because to me, they are not numbers, they are shattered lives. My son is the 1 in 54. He was born in 1997 when rates were somewhere around 1 in 500. He’s only 14. In 14 years, this is the explosion. Worst of all, our government has not yet declared a national emergency.

Here is the real emergency: For every “one” in these statistics, there are two parents, four grandparents, numbers of siblings, countless aunts, uncles, and cousins, and all of them will be affected by the “one.” As a counselor who specializes in treating families who live with autism, I’m on the front lines, witnessing the devastation.

This week I saw several parents who have been affected by the fallout of this explosion. I’m treating their depression, anxiety, posttraumatic stress, and grief. I’m helping single parents learn to navigate the things other parents take for granted, such as taking your child to the grocery store to pick up a few things. I’m comforting the mom whose autoimmune system is falling apart because the daily stress is too much. I’m handing tissues to the sister who just “wants a normal brother” and wonders if she will have to care for him when she is an adult. I’m helping couples decide whether or not to divorce because one has started drinking too much. And today the sadness and magnitude of it all hits with hurricane force as I see the numbers on a page. If there was ever anything threatening the American family, and society at large, this is it.

One in 88. It’s a number that should make me want to fight with every fiber of my being. To rise up with righteous anger and be that warrior mom who kicks butt and takes names. But I’m tired of it. Don’t get me wrong, I’m not tired of my son; I love my son with all my being. He is an amazing young man who has blessed our lives, and his struggles have truly made me a better person. I wouldn’t trade him for a child without autism. But I’m plain tired.

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I’m tired of fighting insurance companies who decide my child’s IV medication is not “medically necessary” and they’re not going to pay anymore. I’m tired of hoping and praying that my Medicaid personal care assistance funding won’t get cut, so that I don’t have to decide between watching my child or cooking dinner. I’m tired of having to keep all my doors locked at all times so that I won’t have to call the police because my son hopped the fence and went missing in the woods. I’m tired of having my parenting judged by strangers who wonder why I “can’t control my child.” I’m tired of being too tired to have intimate relations with my husband. I’m tired of schools deciding that a child doesn’t deserve occupational therapy just because he can write his name. Every day our families are fighting for something our child isn’t getting.

I’m tired of the media spinning autism into some magical disorder that somehow means your child has unique gifts and talents. I’m tired of fearing that my son could be sexually or physically abused and cannot tell me. I’m tired of hearing those very stories on the news.

I’m tired of organizations telling me I need to don blue lights to celebrate World Autism Day—whatever the hell that is. I don’t want to celebrate, I want to mourn. I don’t want to raise awareness. I do that when I take my child to Target and he decides to strip down naked and run through the toy aisles. I’ve never seen a security guard more aware. I want to remember, in solemn observance, the marriages that were lost, the parents that have committed suicide, the children who have been abused, and the kids who have died too soon because they wandered away.

This April, make it Autism Action Month. Call Washington and tell them we have a national emergency. Reach out to a family with autism. Bring them a meal. Send them a gift card to their local health food store. Give them a call without expecting a call in return. It’s time for everyone to take this epidemic seriously. Be the “one” who makes a difference. Because, if your child is one of the lucky 87 others, then in the future, they will be the ones who will be caring for my “one.”

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

celeste

March 30th, 2012 at 3:01 PM

To say that I am shocked by these numbers would be an understatement.
I can honestly say that I do not know one family who has been affected by autism.
Do you think that perhaps it is more prevalent in certain areas, because I have not met anyone near where I live who has been touched by this.

Irene

March 31st, 2012 at 7:25 AM

This is something that we never even heard of twenty years ago, and now it seems to be everywhere. Is it the vaccines or something else environmental that is leading to this increase in the numbers? I guess we may never know anything more than the fact that this is closing in on something that is getting a lot of our kids, kids who seem to be ok up until a certain point and then boom! It hits. But without the recognition that this is actually a problem that we need to stop in its tracks then it is highly unlikely that we will receive all of the answers that we need anytime soon.

Randy

April 1st, 2012 at 4:46 AM

I am not sure they ever called AIDS a national emergency either but yet we know it was and in many parts of the world it still is.

Do we really expect that they will do that with autism, which has such a braod spectrum of symptoms and manifestations, and which has largely gone unseen except by the families which have been directly touched by it?

Joshua Hardin

April 2nd, 2012 at 4:20 AM

While I find this evidence interesting, I think that for many of us it is hard to pinpoint exactly what we think about autism as a whole. Yes. there are some children who are classified as having autism that you look at and go yes, that child has some kind of issue that looks like autism. But there are other children that we see classified as such that you look at and just think that they need a behavior adjustment yet they are considered to have autism as well. Kind of like when everyone you knew was being diagnosed as having ADD and ADHD. You after a while think that people are using that as an excise, maybe a little like the boy who cries wolf, and then once it is done so many times you become immune to it because in every case it does not feel like it is true anymore.

Lesa W

April 2nd, 2012 at 12:49 PM

Janeen, Articulate and succinct as usual! Dave and I talked about the new CDC #’s a lot over the weekend. It’s a lot to absorb. On Sunday, we tuned in to “Meet the Press”, “This Week w/George Stephanopoulos” & most of “Face the Nation w/Bob Schieffer”. Our little epidemic didn’t make a ripple! Does Autism have no political impact? Is anyone seriously considering the impact to Social Security by the Boomers, returning disabled vets and the kids on the Spectrum? Lack of coverage wasn’t surprising, but rather disappointing. One thing we hadn’t really thought about before that hit us was: w/1:54 boys affected by ASD, how many future families will not be? How many girls our daughter’s age, won’t be getting married &/or having children in the future because so many boys have Autism? I have to share your info on Facebook!

mathew

April 3rd, 2012 at 7:31 AM

its never going to be easy to change how the system works or how people react but what we can change is how we act,what we do.let us make a resolve to do something…anything to help the cause.autism,like any other disorder,is not something anybody wished for.its time we show some resolve to do something for the ones affected.

lisa

April 13th, 2012 at 2:57 PM

this post is truly sad but also very true, my little boy is three and has not yet been diagnowed but we are well aware that he has autism, he can get worked up and upset out of nowhere and all you receive is dirty looks which make it very hard to deal with an already difficult situation, I do not believe my sons autism is anywhere near as severe as alot of other children out there but what I would say to people who don’t know about autism is next time you see a child screaming or throwing themselves to the floor don’t be so quick to judge! my son looks like an average three year old but has lots of issues connected to his autism that affect our whole family and autism is a very lonely place, xxx

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