Wednesday, March 20, 2013

Autism is Not as Simple as Fixing a Roof: My Responses to Readers Comments Regarding 1 in 50 Kids Diagnosed with Autism



Why did I even bother to read the comments? I should have just stopped with the article. It was shocking enough.

New Government Estimate Finds 1 in 50 School Kids Diagnosed with Autism

It's a number I've watched go done at an alarming rate just in the past two years since Jacob was diagnosed. Before it was 1 in 121. Then last years shocker when the CDC came out and said 1 in 88. Even with that number, they estimated it could be much lower. So when I woke this morning and logged into Facebook, the first article I saw said 1 in 50.

Wow. I didn't even know what to think. Half asleep I read the article, but it didn't take long for the comments to jolt me awake.

We have a serious problem here, people. The statistic of 1 in 50 is shocking enough. Some would say it is an epidemic.

But the biggest problem lies in there are still so many ignorant people out there that are completely unaware about Autism. That's the problem. That's what needs to be fixed.

An example from the comments from the above article.
 
"Autism, huh? Ever stop to think that the number of kids diagnosed has something to do with people who get paid to treat kids with supposed autism?

If I'm in the business of fixing roofs, it's in my financial interest to convince you that your roof is in need of my repair services.

Get the point?" -Hk45

Well Hk45, let me tell you this. First off, if someone came to my door out of the blue telling me I needed a new roof, I would indeed get a second opinion. Now if my roof was leaking and it did have an obvious problem, I would inquire as to the appropriate services to fix it. I guarantee no one is going door to door selling Autism diagnoses to parents for their kids. These are parents that are struggling. Parents that see something is off with their child. No one convinced me that my son had Autism. In fact, the opposite was true, and for many years I was told my son was fine. Doctor after doctor "convinced" me that my son was a neurotypical child.  Friends and family all confirmed this. But I knew differently. After an official evaluation and testing, my son fit all the criteria for Autism. But it took years to get there.

Secondly Hk45, let me tell you that more kids getting diagnosed has nothing to do with someone selling their services. Autism services are rarely if ever covered by insurance and they are very expensive. Most people can not afford services for their child, and so instead that child goes without, leaving it to the parents to figure it out on their own. Instead of getting their child the help they need, they remain in limbo, with a diagnosis but unsure where to turn and unable to afford it anyway. A child gets a diagnosis of Autism from a doctor, not just some random storefront in a strip mall. It's the same as someone getting diagnosed with cancer, depression, diabetes, etc. Really, do you think doctors are out there convincing people they have cancer to make a buck?

I am guessing Hk45 that Autism has not hit your family. When it does (because it will) give me a call. I've been there and I know how overwhelming it is.

Get the point?

Or this comment...

"Autism is often a catch-all for any kind of problem encountered in school. I used to teach and most students who didn't "get it" as quick as other kids or had some other form of discontent blamed autism or said, "My doctor said I have...autism, ODD, ADD, ADHD....etc."" -jsoles2001

Oh jsoles2001, your comment saddened me the most. You were (are) an educator! We are supposed to be on the same team! Fighting for our kids! Wanting to make a difference! I have to say I am happy you said the words "used to teach" meaning you are no longer in the school system. How sad all those kids you quickly brushed aside because YOU chose not to believe a diagnosis. It explains a lot and supports what I hear from many other parents who are struggling or feeling they must fight to get the services their child needs while at school, simply because there are teachers like you who feel their own feeling about a child is more valid than a professional diagnosis. I pray that my son never encounters an educator like you, and am so thankful for the school he attends and their patience and belief in him.

And just so you know, my son "gets it" much quicker than other kids when it comes to math, reading, or academics. Autism is NOT a form of discontent.

And again by the same person...
"...A label makes one feel more at ease with not having good social skills - which can be acquired and learned and can build resilience. When someone adopts a label, then they don't think they have to do anything about but carry it around the rest of their life. We are not all the same, but it doesn't mean we all have a diagnosable illness to explain why we are not the same "-jsoles2001
 
Sorry to tell you jsoles2001, but again you are off base. So many parents I talk to who have a child with Autism are very hesitant to get that "label". For years I fought it, not having my son officially diagnosed because I did not want a label. It was only when I realized he was all ready getting an undesirable label by educators similar to you, that I knew it was time to get the correct label. It is easier for you to label a child as a behavior problem and brush them aside, versus a child with an IEP. You and I both know that once that child is on an IEP, there are many more requirements put on the educator. Easier for you to brush them aside. My son's label of "Autism" does not define him. Nor do I ever want him to use it as a crutch. His label isn't there for him. It's there to stop the ignorance and instead raise awareness and understanding for people like you who do not "get it".



Can't forget this one as well.
 
"A phone survey that only counts those who are willing to answer questions -- this seems to over-select for "helicopter parents" - parents who may be overly concerned with their children's lives. And it may also over-select for parents who are eager (for their own reasons) to have a 'special' child with medically validated problems. Anything to avoid ending up with a kid who is basically normal, but maybe not quite as outgoing, or verbal, or coordinated as other kids. There's nothing wrong with normal, but now that is being defined as 'boring,' or 'substandard.' It's like grade inflation for children's development -- if they aren't gifted, they must be autistic." -MattBlanc
 
Oh MattBlanc, you are so off base you have no idea. First off, I admit, I am a "helicopter parent". Not by choice, mind you. I often find myself jealous of those parents who are laid back, unaware of what their kids are doing, and not really caring. You see, I don't have that luxury. At two, my son would take off running in a crowd with no warning. At three, he could open our front door and would be found outside alone. At five, he would run down the street in the middle of the night, terrified of unrealistic fears. Even now at seven, he still will run off for no reason. I have to be very involved in every aspect of my son's life for his own safety. Aside from safety concerns, my son lacks in social awareness. My husband and I are there guiding him through life as much as we can. Teaching him personal space, how to have conversations, how to play with friends, etc, etc. He knows none of the unspoken rules of language that we all take for granted. Tell my son to "hold his horses" and he is looking around for some reigns.

Now I really take offense to you suggesting that parents are eager to have a child with special needs. "Anything to avoid ending up with a kid who is basically normal". Seriously? You honestly think that someone would chose to have their child diagnosed with Autism? That is the most bizarre thing I have ever heard. The next time my son is having a meltdown, hitting, kicking, scared, crying, screaming, over something so incredibly small as a change in our routine, I'll invite you over and you can explain to me how I was eager to have that be a part of my family's life.

I agree with you that there is nothing wrong with normal. But as my uncle likes to say, "Normal is just a setting on the dyer". My son looks very "normal". And many times he acts very "normal".

Your last comment completely shows your ignorance about Autism. "It's like grade inflation for children's development--if they aren't gifted they must be autistic." I hate to break it to you MattBlanc, but more often than not, kids with Autism are extremely gifted. My son taught himself to read at age 3. I never sat down and worked with him on it. He just did it. At age 7 he is very advanced academically for his age, and is gifted musically. There is no grade inflation needed. But socially, yes, he struggles and is years behind.



On the heels of National Autism Awareness day April 2nd, the comments following this article show me how much work there still is to be done. There are still many people who are closing their eyes to Autism. So many people who have their own preconceived ideas and knowledge of the subject, yet lack the personal everyday insight.

It's time.

It's long overdue.

I ask you to please help spread the word about Autism. These conversations are needed to stop the ignorance. Help me make the world an accepting place for my son.

It's time to get real about Autism.

Autism isn't as simple as "fixing a roof".