HAVE QUESTIONS ABOUT THE NEW INFORMATION RELEASED BY THE CDC?

Have questions about the new information released by the CDC? 

I have some answers! (I hope)

1) Where did the data come from?

The CDC gathers data from counties in 11 states. The data is only about children who are 8 years old. There is good reason for picking 8 but, it does miss some children who are diagnosed at an older age.

2) How old are those children now?

In 2012 the rates were 1 in 88 and those children were 8 years old in 2008 so they were born in 2000. The new rates of 1 in 68 are from data gathered in 2010 so those children were born in 2002 and are turning 12 years old this year. It is important to understand this because every 2 years the rate increases and that data is about children who were born 12 years prior to the release of that data.

3) Wait a minute, didn’t the CDC release a 1 in 50 number just last year?

Yes, in fact they did. Here is the difference. Every 2 years the data collected by the CDC from 11 states is only about 8 years olds. The data comes from offices that are trained and funded to collect it. Last years results came from a phone survey that asked about children all the way up to 17 years old. The explanation for that drastic increase was the many children that had fallen through the cracks and were getting diagnosed in their early teens. The results were interesting because the CDC did learn about older children getting a diagnosis but, that is about all I got out of it.

4) Isn’t the increase in the rates of autism just a result of better diagnostics?

Not necessarily. When the the increase from 1 in 110 to 1 in 88 came out in 2012 that was one of the first assumptions thrown around. According the reports I heard at the time, it was not the case. Of course, some the the children diagnosed were children who would have previously been missed in earlier generations so that will account for some of it. It was not considered significant enough to relieve concern that increasing numbers were part of an upward trend in children with autism (not just children diagnosed with autism).

5) What is causing the increase?

That is the million dollar question. I guarantee you that if you could answer it you would probably get at least a million dollars in grant money and possibly the Nobel Prize. Improvement in diagnosis certainly accounts for some. Genetics? Let me give you some helpful information about genetics (which I did actually take in college) and autism. It has been a couple years since I read the reports but, they had found some genes that could cause autism. Problem was, they only accounted for 1%­2% of people with autism. The increase cannot be purely genetic in my opinion. Why? If autism was a virus or disease, it would be considered an epidemic at these rates. But, unlike a virus that spreads from person to person, you cannot catch autism. There isn’t any such thing as a genetic epidemic. It would be like the numbers of people born with cystic fibrosis increasing in prevalence by double digit percentages every 2 years. It doesn’t happen. I am not saying that genetics are not involved. Understanding the genetics involved in autism is important. Our family is likely part of that 1-2%. I believe, as many do, it is more likely is that there is an environmental trigger and/or people who, with a genetic susceptibility are exposed to an environmental trigger or multiple triggers that end up with an autism diagnosis.

6) Do you think the numbers are an accurate representation of the actual numbers of children
    with autism?

Yes and no. It is probably as good as we can get right now. Remember, this is a cross section of 11 states.  What I do know is that boys are 4.5 times more likely to have an autism diagnosis than girls. While it was previously thought that it was only because boys are more likely to have autism, there is a possibility that girls with high functioning autism are less like to get a diagnosis. The rates in New Jersey are at least 3 times higher than in Alabama and this is not likely because autism is less prevalent but, because there is less access to services and testing. The rates of children in minority communities are much lower as well. While there is a chance that these differences are caused by a particular race being less likely to have autism, it is more likely that there is a lack of access to services and testing. Basically, the reported rates could be a little low.

7) Should I freak out?

In general, I am not in favor of freaking out. I tend to think the better route is to investigate and face reality. Is there reason for alarm?  I guess you could say that because there is just not enough access to support but, autism is already part of our families life and we can’t cover our eyes and ears and pretend our son doesn't have struggles related to his autism. Alarm isn’t going to change anything for us but, a sense of urgency could change outcomes for another family.

Disclaimer: Some of the information contained here is floating around the internet; I’m not going to try to notate it. Any of that type of information is on almost all the news sites as well as the CDC website. I am not a statistician, though I did take a statistics in college. I am not a scientist nor a medical professional, though having a child with autism has increased my ability to read medical studies. I can wade through medical speak pretty easily. Ok, and some of this is opinion from myself or others I know but, I am not trying to mislead you. This isn’t meant to be exhaustive, just give you a little bit of insight into the data.

The ever growing list of autism links

Autism Daddy has a great blog. If you have a kid on the spectrum you should try it out, the link is on my sidebar.  He once posted a list from the biology files, a blog that hasn’t been active since 2012. I pulled some from that list and added some new ones to make this list.

Every so often there is a new finding about what could possibly be linked to autism. The list just gets longer and longer. Some have been disproven, like refrigerator mothers, some are ridiculous theories and some are controversial but, every time a new link comes out it gives some parent another reason to feel guilty.

The point of this isn't to make you feel more guilty. I wrote this list to help you realize that as each new link is published that it is just one in a long list of possibilities, many of which you have no control over.

1. Refrigerator Mothers
2. Parents making stuff up so they don’t have to be responsible to teach their kids. Seriously a
    psychiatrist actually wrote about this.
3. Vaccines
4. Mercury
5. Environmental Chemicals
6. Older fathers
7. Older mothers
8. Depressed or stressed moms
9. Prematurity
10. Sibling with Autism
11. Low Birthweight
12. High Birthweight
13. Overweight mother
14. Baby with a big head
15. Being a twin
16. Smoking during pregnancy
17. Diabetes during pregnancy
18. ANY birth complication
19. Being born in the summer
20. Being second born
21. Being a later born
22. IVF
23. Born too close together
24. Genes
25. Immune system problems in the mother
26. Hyperinsulinemia and Diabetes
27. Impaired brain connections
28. Impaired sugar metabolism
29. Biomarkers
30. Clomid
31. Terbutaline
32. Glycine
33. Mitochondrial disorders
34. Regulation of the gene
35. Living near a freeway
36. Too little oxytocin
37. Too much androgen
38. Lyme Disease
39. Antidepressants
40. Pregnant mom caught in a hurricane strike zone
41. Sibling majors in science or engineering in college
42. Emigrating at time of pregnancy

Do you want to know what treatment really costs?

It is seriously so ridiculous!  I think the current number for treatment of a person with autism for their life is somewhere around 3 million dollars.  3 MILLION!  And I am not even sure if that statistic is what it costs if people get the treatment they need or if that is the average expenditure that is actually happening.  I am certain it only includes "traditional" treatment.

I know a lot of kids, including ours, who get almost no treatment outside of school, not because they don't need it but, because it is too darn expensive!  Speech therapy, ABA, OT, GI's, Neurologists, Developmental Pediatricians are freakin expensive, even with insurance. We are talking in the 10's of thousands of dollars, with insurance.  The only kids I know that get all the treatment they need either have really rich parents or parents who qualify for public help for their kids because of their low income.  But, doesn't your insurance have an out of pocket maximum, you ask?  Yes, it is above $10,000 and it does not include co-payments!  So, the copayments are what puts the therapy out of reach.

If you don't have a kid with autism and are callous enough to say that it's not your problem....It will be when 1 in 50 kids grow up and a majority of them are unable to hold down a job on a regular basis because they did not get the help they needed when they were young.  Or maybe, you make enough money that you can go live in a gated community and pretend the rest of the world doesn't exist.

How does it feel to have a violent kid?

You know, I don't know that I can really describe this one.  Do any of you have the words?

A lot of kiddos with Autism will act out in violence during a meltdown or even just when they are frustrated?  It doesn't happen all the time and I know parents who end up with way more bruises than I do but, it is still scary.  When my son was younger, it was easier to contain him.  Now that he is getting bigger, he can do more damage.

Sometimes, when he acts out, I get really frustrated and angry with him, even if he is not in control.  Mostly though, it scares me.  What am I going to do when he is a teenager if he still cannot control his behavior when he is frustrated or overwhelmed?  Will I end up in the hospital?  What scares me more, is will he do damage to someone else and end up in jail?

My son is actually a very tenderhearted kid, though you wouldn't know it when he is frustrated.  He normally feels pretty badly after he does something violent.  He hurt my shoulder the other day and then a few minutes later went to get me some ice from the freezer.

Greener Pastures

I am big enough to admit it; I am a grass is greener person some of the time.  Not all of the time, but, it definitely hits me between the eyes more often than I would like. Even in the best of circumstances, we humans play the what if and if only game.  When life keeps throwing curve balls at you, it's more difficult to dodge those questions.

If a parent of a kids with special needs ever tells you that they have NEVER asked those what if questions they are lying to you.  Or, maybe they are lying to themselves.  We are scared to admit those doubts and questions out loud because you could think that we don't love our child unconditionally.  Or, perhaps we don't want to admit to ourselves that sometimes it does feel like a burden.  You know what.....admitting the truth doesn't mean you love your child any less. Superman is a fantasy and the special needs parent that has it all together is also a fantasy.

So what am I actually thinking when that green monster raises it ugly head?  You want the real truth?

• A parent says to you how nice it is that your kids doesn't have to wait 2 hours in line at an amusement park.  Of course, I am thinking that your kid can take the autism and I will joyfully wait in line all day long!  
• A celebrity talking about how much such and such a therapy helped their kid and wishing you had the money and time to give your kid all the help they need.
• A parent of any neuro-typical kid complaining about school, dating, sports teams, etc.while I stand there wishing those were my problems.  Sometimes it feels like listening to a really wealthy person complain that the engine on their yacht needs a repair.
• If only we had made less money like that other family at school.  Their child gets so much more help because they have a lower income than we do. While our son gets almost no help outside of school because we live in that in between space where we make too much to get help and not enough for to pay for therapy ourselves.
• It might be easier if my child's autism was more severe.  How could I ever think that?  Would I really ever want that - absolutely not!  But still,

• Children with more severe needs are eligible for more help.
• Children with more severe autism get diagnosed earlier and have early intervention.  I have seen children who had more severe problem than mine but got help earlier and now have better speech and social skills than my son.
• I know people who have children whose special needs are more severe and they get more support from their community. Seriously, I am not talking about attention yet, I know there are parents who seek that. For example, people set up fundraisers to help with their medical and related expenses. These kids are already having the state pay for their therapy and now the public pays for their gas and food as well.  What I really think is that it is so AWESOME!  I really, really don't begrudge that at all.  Anything that can reduce the stress of being a parent of a special child is great. It is just that when I get really frustrated that we can't pay for needed therapy, those thoughts creep in.
• When you have a child on the spectrum that is "high functioning" there is the possibility that with the right amount and type of therapy they could grow up to lead a somewhat typical life, whatever that means.  That seems like a lot of pressure on a parent. 

Now, I readily admit that some of these might seem absurd and I don't think this way much of the time.  I am certain that I have met many families who would be more than happy to trade circumstances with us.  I know that parents of non verbal children would give up all the help they receive to have one real conversation with their kid.  I also know that the problems and stresses on parents with typical kids are real and pressing. I am not diminishing their struggles.  Parenting comes with a lot of pressure regardless of your situation.  I am simply trying to be honest.  From my own experience and from talking to others, I know that it can be such a relief just to find that someone else out there has gone through what you are going through or has struggled with the same thoughts. It can go from, "I am such an ungrateful idiot for having that thought" to "Oh, what a relief, I'm not the only one that has ever thought such a thing before."

Special circumstances or not, I am certain that you have all struggled with grass is greener episodes in your life.  Is it healthy, not really.  Is it normal, yes.  Rather than trying to bury my feelings out of shame, it helps to own it, think about it, know it is not healthy and release it.  

What My Son Taught Me About Judging Others

One of the most important lessons we have learned through having a child on the spectrum is how to look at others who are struggling without judging them.  The more I understand neurology, the more I get how difficult it is when your neurology is damaged or not functioning correctly in some way.

I know many people (including myself) who said "I'd never let my child behave that way in public" before they had kids, then took it back soon after they became parents....unless they had an unusually easy child.  It is even more so when your child has a disability that causes them to behave in ways that are not necessarily socially acceptable.  Some of those behaviors are just considered unusual but, many can be disruptive or appear disrespectful.

Fundamentally, I believe that if we tell people that they are not responsible for their behavior (with a few exceptions for those who really can't) because of some type of neurological problem, then we are doing them and our cultural a disservice.  But, I also believe that some people are less able to make those choices.  Be they good behavior versus bad behavior or simply making others feel comfortable by fitting into some social norm at the appropriate time and not being disruptive.

Anyway, all that to say, the more I learn about how the brain works the more understanding I am of others.  I haven't changed the standards of "right and wrong" but, I do get why some people have a more difficult time making good choices.  

And for those who might be offended about equating Autism with making bad choices, in our house that is a big deal!  We have a son who is sometimes pretty violent.  At times, he has absolutely no control over it but, often he has enough to stop with consequences.  He needs those consequences and whatever other help he can get for that issue because, if it doesn't stop, he will end up in jail as an adult for hurting someone.

Losing Myself

I recently had a conversation with another mom who has an only child with autism.   She told me that she was feeling like she had somehow lost herself in the her role as a mom to a child with autism.  I could totally relate; as only someone who is walking the same road can.  We discussed that many mom's probably feel that to some extent but, it seems when you have a special needs child that the feeling is magnified.  I know some mom's fall right into the role of mom with ease like they were born for it.  I know some mom's wtih really "easy" children who can take their kids anywhere, get everything done and maintain their relationships with barely a blip.  But, for all mom's, their heart changes, their priorities change...there is now this little life that is dependent on us for it's survival and their future is linked to how we raise them.

I try to make my life about more than just autism but, as my son ages and his symptoms seem to intensify, I can't help but spend more of my time focusing on autism.  Someone once mentioned to my husband that my life could not be all about autism.  I was pretty irritated!  I guess that perception comes with having a disability that people cannot always see. My son looks like every other kids his age - he is anything but.  He lives in pain from sensory issues and he lives with pretty serious anxiety that only seems to get worse as he falls further behind his peers socially.  If my child had cancer, no one would say that my life could not be about cancer.  Of course I could research and find the best ways to help my child.  If my child had a terrible orthopedic injury to his leg, who would say that my life couldn't revolve around the surgery and physical therapy that would help him walk normally again.  Those issues would effect where our family could go, what activities we could participate in, how much time I had to spend on other activities. No one would bat an eye at that.  But, when your child has "high-functioning" autism, the world cannot readily see the struggle. Will I be able to take my child to the store without a meltdown?  Will I be able to go to this family activity without my child getting too overstimulated?  How much of our family time, energy and finances are taken up with therapy?

Parents of kids with autism often struggle with their own stress, anxiety and depression. They struggle to take care of themselves and help their kids.  It is a difficult balance.  They are often tired and feel isolated.  They struggle with the guilt that comes when they think they are not doing enough for their children or when they are unable to meet their childs' needs.  All those emotions try to pull you under as you struggle to stay far enough above the water so you can parent your child.  Sometimes being an autism mom does define me.  Much of the time, I feel like I have lost myself in the daily life of parenting a child with autism.  There are times that I can push the extra responsibilities of parenting a child with autism to background for a time but, I know they are there, will always be there!

P.S. Acknowledging the extra stress and work that an autism diagnosis brings to your family does not in anyway diminish the value of the child, mean that you love them any less, think they are any less awesome or view the child as a burden!  Don't go there!