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December 19, 2013

Autism, the new over diagnosis?

**I decided to pull this one out of the archives and update it. Enjoy!**

A few years ago, I had a string of synchronistic comments that all focused on the same concept; Autism is not as prevalent as it is publicized to be. First, I was talking to a former special educator and I mentioned that I had three kids on the spectrum. He kind of did one of those uncomfortable grunt-humpf's and said, "well, you know, everybody has autism now. I hear about how so many kids are being diagnosed with it. Twenty years ago it was dyslexia, now its autism."  

I can hear your gasp at the gall of such a man to say this to a mother, but I get comments like this all the time.


The next comment came when I was talking to a grandmother whose grand-daughter had just been diagnosed. She, I imagine was still in a bit of denial and actually parroted the same quote, "it's just like dyslexia was when my kids were coming up."


I wondered where these people were getting the idea that Autism is the new dyslexia.


Autism is NOT like dyslexia, but I guess I can see how people on the "outside" might get that impression. Dyslexia, for many years was a hard to obtain diagnosis characterized by some of the same challenges some parents with a child on the spectrum experience; scarcity of treatment options, not being taken seriously by doctors and/or educators and lengthy struggles to convince people of your child's intelligence despite delays. On the other hand dyslexia did become overused in the media as a plot for sitcoms and after school specials.......

"Stay tuned for a very special episode of (enter your favorite 80's family sitcom here) where (character) finds out he/she is dyslexic"




Back to my sync stream....following these two "Autism is the new dyslexia" comments, a friend shared with me how Autism has always been around and that people were just paying more attention to it now.

In noticing an underlying theme in these three interactions, I asked myself the following;

Is it possible for Autism to become an over diagnosed disability? Being a spectrum, Autism can range from the very mild, PDD/NOS (Pervasive Developmental Disability/Not Otherwise Specified, to severe, low functioning (not my favorite term, but for lack of a better descriptor) Autism. If Autism is over-diagnosed, can it then become easy to ignore, because everybody has Autism? 

Except for blacks and hispanics who are under-diagnosed

Recently, a few celebrities have come out and shared their diagnosis with the public.
New and notable mentions:
Wikipedia List of people with autism spectrum disorders
A press release for the documentary Autistic-Like:  Graham's Story, suggest that "thousands of children diagnosed each year with autism actually have milder disorders, but to get treatment, parents are often pushed to accept the inaccurate label of autism." 


The focus of the film is the struggle of parents Erik and Jennie Linthorst to get help for their 4 year old with sensory processing disorder.  The documentary features well known treatment pioneer, Dr. Stanley Greenspan, creator of Floortime, "a specific technique to both follow the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities.  With young children these playful interactions may occur on the “floor”, but go on to include conversations and interactions in other places." (from website)

From the parents perspective, finding out their son had sensory processing disorder and not autism was liberating, now they can better treat him with more specific interventions.


Marla Cone of Scientific American writes about the work of Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis (January 9, 2009). 
Hertz-Picciotto believes it is environmental triggers not better diagnosis that is responsible for the increase in autism cases "The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age {this part omitted from original article}"


Cone also states, that "a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase." Hertz-Picciotto according to the articles says, those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.

In a report (March 20, 2013 - better late than never!) regarding a parent survey conducted by the CDC, the National Survey of Children's Health found
between 2007 and 2011–2012, the prevalence estimate for parent-reported ASD diagnoses among U.S. children aged 6–17 increased significantly, from 1.16% to 2.00%. Increases were observed in all age groups, and among boys aged 6–17.  
The increase,in their opinion was the result of diagnoses of children with previously unrecognized ASD.

The rates of diagnosis, mis-diagnosis and over diagnosis is as much a mystery as the meaning of the metaphorical puzzle piece which represents this disability.
What need not be ignored is the actual delays in functioning, the social struggle, and the need for compassion.  Autism, dyslexia, sensory processing disorder, these are all just labels.  Whether its to get services or to finally place a name with a face(so to speak), labels do not define our kids and they certainly don't change the reality of the challenges families and individuals face. Ultimately my hope for my children and all on the spectrum is to have meaningful and fulfilling lives. Period.

**Update - Since originally writing this post, no one has approached me with the comparison again. Not sure why, maybe they read the blog post and decided to steer clear of the subject. I think not long after the 1 in 110 numbers came out and people started taking Autism diagnosis more seriously.**

What's your take on Autism being over-diagnosed? Are clinicians better equipped to spot more children or are we dealing with an epidemic? Also, if Autism is being better diagnosed, then why are African Americans and Hispanic's being under-diagnosedAll viewpoints welcome.

October 22, 2013

2 Things

Mutants? Contagion? I just brought her here for a physical......

For the last two years, we have been medical fugitives, only coming out of hiding for absolute serious, mom cure resistant disorders. Despite much resistance and procrastination, I made 3 appointments for the "annual physical." If I want to qualify for respite or for the children to participate in any type of extracurricular activity they need a current physical.

Inevitably, the conversation always takes a turn to that issue, which can not be named. The V word. Vaccinations. It would be great if my kids were up to date, sure no problem. My kids aren't up to date due to my choice not to get my kids vaccinated.

Again.

Ever.

At this point you are either clapping with me or wondering where my brain is.

I used to care about the latter. I don't anymore. I make decisions for my kids based on the information I have read and what I have seen since accepting the red pill.

This is your last chance. After this, there is no turning back. You take the blue pill - the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill - you stay in Wonderland and I show you how deep the rabbit-hole goes. - Morpheus, The Matrix

None of the vaccine pushers are coming to babysit my 3 kiddos on the spectrum or pay any of my bills or support me in anyway, so their opinion is as relevant to me as burnt toast. I realize that by coming out of the vaccine closet, I may lose followers and readers, but it is more important for me to share the sentiment than hide for fear of backlash.

I have a hard time with people who completely lack compassion and just want to bully you into an agenda by calling you stupid. I know I am not stupid, I can read a research study.

This post is not really about the ongoing debate, its about what happened at the doctors office today.

So as usual, I let the doctor go on about her opinion that all the studies refute the connection between vaccines and autism. Me; no comment. She continues, by going after my desire to not see my child die from a childhood disease. I say "my children have been blessed with amazing health and their natural immunity has protected them" and she counters with "maybe they are benefiting from everyone else's vaccine induced immunity." I shrug. She looks at me and I see her eyes roll back and reach into her mental bag to pull out the "big guns."

Now for 2 Things most parents of so called typical, non autistic children never have to hear;

Thing #1
Me: I read the reports from both sides and I just can't be sure that vaccines didn't have something to do with their condition. This is the only thing I have control of.

Doctor: I understand but most of the research says it is genetic.

Me: Genetic? If that is so why is that I am the only one in my family and my husbands family that has children with autism? No one older and no one younger. Wouldn't we see it in other parts of the family if genetic?

Doctor: It may have been a mutation in your DNA that you transferred to your children.

Me (IN MY HEAD): Damn it, there it goes being my fault again.  If I caused the mutation then why couldn't I be an X-Men like Storm and why can't they be like Wolverine, Rogue and Jean Grey?

Me (OUT LOUD): Oh so something happened to me environmentally that mutated my DNA and passed on autism to my kids?

Doctor: Yes. No.... I mean we don't know what caused your mutation, it could have been environmental or anything. We just don't know.

Me: Oh I see.
Me:(IN MY HEAD): We don't know why its all of a sudden genetic, but we know its not the vaccines, that makes perfect sense.

Thing #2
Doctor: Also we want to keep our other patients safe.  If your kids aren't vaccinated, they could pose a risk to other children, babies in the waiting room.

Me: My children rarely if ever get sick. They are in public schools where they are exposed to measles, chicken pox and the flu. They don't come home with it or pass it on to anyone else.

Doctor: --uncomfy smile-- Well our policy is....(she stops and I believe rethinks dismissing me from the practice.)

This is a difficult conversation for both of us.

Me: I know.

I have heard these "2 Things" before. Once upon a time I would have gone head to head with this doctor about the issues and my rights. I am older now and it is not advantageous to me to be right. I'm tired of burning bridges and looking like a lunatic. Any doctor I go to after this will require that I vaccinate my kids, at least I have a history with this practice. I am not trying to recruit anyone to my side, I just ask for simple respect.  I don't want to be a mutant or have mutant kids and the last thing I want is for my house to be ground zero of the next contagion. They already blamed us for a recent whooping cough outbreak (even though they admitted that their new and improved vaccine isn't effective in preventing it.)

In my short time on this planet I have come to realize that there are no guarantees and there are many things labeled as safe that were then found to be quite unsafe.

You may be wondering where I take my brand new twins for well baby visits?  I take them to a sustainable, holistic doctor, who is not covered by insurance, which means, I have to pay him out of pocket. Would you like to know what our last conversation about vaccines consisted of?

Holistic Doc:  We should probably talk about vaccines, what were you thinking of?

Me: I don't want them.

Holistic Doc: Okay, but you may want to consider the Whooping Cough due to the recent outbreak, its fatal in infants and the Tetanus.  The other ones you could really do without.

Me: Okay, I will think about it and we can talk about it next time.

If only I could afford to take all of them there.

So, general public, here are 2 Things I can promise you;

  • I won't send my kids to school with your kids when they are sick.
AND
  • I won't let my kids use their mutant super powers in public on you regular humans. 
Honestly, that's the best I can do.

September 1, 2013

Life Goes On

I love to write, but sometimes it gets very difficult to to express what is happening in my life and the lives of those I love. When that happens, I don't write, thus the 7 month gap between post.  But I was busy, I was pregnant.

I have two new additions to my life, I recently (12 days ago recent) gave birth to identical twin girls; Marilyn and Evelyn, so now my brood is up to 5.  Yes 5 kids. I always wanted a big family. Its been rocky; good news follows bad and vice-versa.  I will expand on that in another post, but right now, I am 12 days since delivery and its the first time I have had a mind to reflect on my blessings and these two beautiful little identical angels that have come in to my life. I say identical, but we can easily tell them apart. Evelyn is half the size of Marilyn.  Unfortunately there was a knot in her umbilical cord which limited the amount of nutrients she received in the womb. So far, both are healthy and growing bigger every day, Evelyn has already gained a pound since leaving the hospital.

My older kids they have accepted them in their own way.  My eldest son who is 14 is aware but interaction is limited, I think they are still too small for him to really be interested, my eldest daughter, who is 11 has held both of the babies, seems tolerant, but my former youngest daughter, 8 was very wounded by me bringing two new babies home, its really taken her a week to start dealing with me again.

For the last 6 months I have been asked how am I going to do this. I really don't know how to answer that question. Its a really silly question so from now on the next person who ask me that I am going to say; "Oh I have a 12 point plan on how I am going to do this, would you like to review it?" I know its a little smart ass, but who cares, we all need to get our laughs in when we can.

For today, I will not worry, or get anxious, or fret. I will just be thankful and happy and blessed with my new world and its new inhabitants.

February 28, 2013

5 Secrets to Successful IEP Meetings

I am procrastinating. I am supposed to be preparing for my daughter's early morning IEP and instead, I am writing this blog post.

I got to thinking about what makes an IEP meeting successful and I came up with 5 things I personally strive for when I walk into my child's classroom. Now remember, I have three separate IEP's to pay attention to, so I have a little bit of experience in this area. Just a little.

Secret 1
Always Get A Draft - Yes, you can get a draft of the IEP ahead of time. Its important to ASK for it ahead of time as well.  Teachers are just like you and me and they can get swamped and do things at the last minute, so you want to tell them you would like a draft to review before the actual meeting.  A good time to ask is around the time you get your IEP invitation.  This gives them time to get it ready and get it to you preferably 5-7 days before the meeting. During that time you can review it, highlight it and write down your questions early. Then you can confidently walk into your child's meeting totally prepared like a pro.

Secret 2
Put It in Writing - How many times have you had a conversation with a teacher either on the phone or in person and you swore you asked for XYZ and the teacher said, "sure, yes, no problem," only to find weeks later that XYZ was never entertained, worked on or done? It happened to me more times than I care to remember. Don't dare bring the XYZ (undocumented) conversation up at the IEP meeting. I'm sure you may have received a response similar to this; "ah well, Ms Flamer, I don't remember us discussing that blah blah blah, we are working on this goal." Does this happen to you? Well not anymore, because from now on everything and I mean everything will be in writing. Maybe you don't have time to draft an official letter? No problem an email will do, or my personal favorite, I write it in the communication book and make a copy of it. If  I don't see any movement in a week, my teachers get a call and a reminder and a copy if necessary. This secret can also be entitled "Get In Writing," as you always want to make sure any promises, proclamations and plans the school makes are in writing as well.

Secret 3
Travel in Pairs or More
I learned this the hard way. Little old me walked into the school for a meeting that I thought was going to be simple, quick, and short. I turned into the classroom to see the teacher, the principal, the guidance counselor, the school psychologist, the speech therapist, the occupational therapist, the butcher, the baker and the candlestick maker. Since this wasn't an official IEP meeting I was only expecting the teacher and the speech therapist. Here were six representatives from the school, who had already discussed what they were going to do with my daughter, ahead of time, with out me, now all talking at me. To say I was just a little intimidated would be an understatement. So from now on I travel in pairs or more. Ambushes are best handled with back up.

Secret 4
I Know its a Pain, but you will Explain
Not all teachers and professionals are like this, but occasionally you will meet the rare arrogant, jackass who gets off on using professional jargon and acronyms like everybody is supposed to know what they mean. A lot of teachers and therapist have had cultural sensitivity training and are aware to not overly tax parents minds with terms they are not familiar with. After doing this for awhile, you do start to understand these terms, but even I, yes I, Miss Know-It All 2013 will ask someone nicely to explain what exactly MDE (Multidisciplinary Evaluation) stands for because sometimes I forget.  As parents, we don't use these terms on a daily basis and its ridiculous to expect us to bring our Special Ed to English dictionary with us every time we meet with our kid's team. So don't be ashamed, if you don't know, but make them explain.

Secret 5
Tell Me Something Good
Yes, I'm talking about the song by Rufus and Chaka Khan (a noted supporter of Autism, I might add). I hate absolutely hate to go into an IEP meeting and hear nothing but what my kid can't do. How bad their behavior is and how difficult it is for them to do AB and C. No, I won't stand for it.  You must "Tell me something good" about my child. If you don't, I will and it will be written in my parent statement that will and must get added to the IEP. Individual Education Programs do not have to be a short story on how behind little Jimmy and Sally are. They can be plans that build on strengths while identifying challenges.  ALL our children have strengths and these things need to mentioned if not promoted throughout the IEP.

These are my 5 secrets that get me through my 3-9 IEP meetings a year. I do have to mention that this year my kids have phenomenal teams and so far I have only been to four if you count the one I am going to tomorrow. For more insight on what goes on behind the scenes check out "What Really Goes on Behind the Scenes of an IEP....."

Please share some of your "secrets" in the comment section, I would love to hear them, I can always add something new to my repertoire.

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