Tag Archives | studies

Dear researchers, being pregnant is linked to autism. You’re welcome.

Dear researchers,

I am writing to you to ask you to please stop.

autism moms causesStop trying to find a way to blame mothers. Stop reaching for any and every single thing you can think of to link to a cause of autism.

Stop scaring people. Stop making people think that they have to move, lose weight, have kids early, wait for a second child and any number of other things that you’re scaring people to death with.

Stop making moms think that having a fever will cause autism but taking Tylenol for a fever will cause autism too. Stop making moms think that they have to space out their pregnancies but they also can’t be too old.

Just stop!

I understand you’re just trying to find the truth. I understand that you’re just trying to get more information.

However, this is getting beyond ridiculous.

I have put together this small list of the most recent studies just to give you some small idea of just how out of hand this is becoming.

Ways to blame moms for autism

Closely spaced births:
http://www.ncbi.nlm.nih.gov/pubmed/21220394?dopt=Abstract

Premature birth:
http://www.news-medical.net/news/20111018/Premature-infants-more-likely-to-develop-autism.aspx

Prenatal “complications”:
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.1990.tb00820.x/abstract

Not using prenatal vitamins:
http://medicalxpress.com/news/2011-05-early-prenatal-vitamins-autism.html

Living close to a freeway:
http://articles.latimes.com/2010/dec/16/health/la-he-autism-20101217

Being overweight:
http://online.wsj.com/article/SB10001424052702304072004577328203742847094.html

Smoking:
http://www.opposingviews.com/i/health/addiction/autism-linked-moms-who-smoke

Having a fever:
http://www.latimes.com/health/boostershots/la-heb-fevers-pregnancy-autism-20120523,0,6934232.story

Being pregnant linked to autism

At this point, can we all just agree that being pregnant is a link to autism? Giving birth is a link to autism. Being alive is a link to autism.

No, they’re not the causes but they are linked! Breathing is linked to autism. Opening your eyes is linked to autism. A heart beat is linked to autism.

The refrigerator mom theory is dead and in the past. Can you please just leave it in the past?

Enough is enough.

Stop pointing fingers.

Now you know that being born is a link to autism, you can start putting your time, energy and money into doing something that is actually helpful.

You’re welcome.

Comments { 13 }

From the CDC: 1 in 88 have autism. Will there be rioting in the streets?

As much fun as rioting in the streets can be, what with the free tvs and tear gas… let’s just all just agree to riot on our blogs instead, where there is less pepper spray.

Besides, is 1 in 88 really worth rioting over? I guess to some, it is. To others, it’s not really a surprise.

By the way, if you want to read, direct from the CDC, as to what all of their numbers were and how they got to this total, check out their report here: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_e

cdc logoReasons

So how did we get from 1 in several thousand down to 1 in 110 and now…. 1 in 88? Well, let me recap for you a bit of my history in the world of autism.

My son was diagnosed at 2.5 years of age… which was about a LONG time after I had requested it. Why so long?

At 1.5 years of age, I asked my family doctor if he thought that my son could be autistic. He knew my son rather well, I went over all the signs and concerns I had… everything I knew about my child, I put out there for him to hear.

He told me that Cameron was fine, he’s really bright, he doesn’t seem to have anything obviously wrong with him…. just give it time. And so we did.

Shortly before he turned 2, I asked again. This time, said that he felt that I didn’t need to bring him in for an assessment and that it’s perfectly normal for boys to not talk at 2.. and to be “quirky.” I insisted. He said that they don’t do assessments for children until they’re 2 years of age so I’ll have to wait either which way…  he’ll put in a request then.

So he puts in the request, we finally hear back from the hospital… his appointment is made for February. He turned 2 in July. Sheesh!

He was diagnosed “moderate to severe PDD-NOS”.

Why am I telling you this story?

Think about it… if my doctor can miss it, even advise against me getting the assessment done… how many other doctors are doing the same? Forget doctors… how many parents are out there missing it? I bet a parent insisting so much is far more rare than we’d like to think it is.

As awareness and information continues to grow, doctors and parents are becoming far more able to recognize the signs. MUCH better! But remember, my story was only from a few years ago.

So even though we’ve come a long way in the last 50 years, we’re not there yet!

As we continue to reach everyone though, the more children will get assessed. You have to understand, if more doctors can recognize it, if more parents can insist on it…. more children will be assessed… and therefore, diagnosed!

The numbers go up!

On top of that, how many children have been and still are being misdiagnosed? Sure there are a lot of children going without a diagnosis but there’s also a lot of children being misdiagnosed. Some children are being diagnosed with ADHD or OCD or SPD…. when in reality it’s a bit of all those things, which may add up to autism (might not too, but you get the point).

So again, as doctors and parents learn…. those wrongly diagnosed people are being reassessed and given the proper diagnosis… and the people that have yet to be assessed might be given the right diagnosis.

To make matters worse, we have the ever changing definitions put forth by the DSM. It was just the last one that first introduced PDD-NOS and Asperger’s into the Autism Spectrum umbrella to begin with. You just know that’s going to increase the numbers.

Then you have geography. Some areas are simply different than others. Some states have educators making the diagnosis, others have neurologists while others go to a pediatrician. And again, some places have more money than others, more resources, better understanding and more differences that can increase or decrease their ability to make proper assessments.

But what about toxins?

I know what you’re thinking… this is all about genetics and avoiding the issue of environmental toxins. Well, no. All of what I just explained *could* maybe explain all of the increases in numbers, but then it might not either.

The truth is that environmental toxins have most definitely increased over time… especially in the last 150-200 years or so… with industrial and technological ages moving faster and faster.

Do I think it’s vaccines? No. Do I think it could be *something* or a combination of a lot of somethings? Fact is, I just don’t know but it certainly could be.

We’re all living life a little differently than our ancestors did… inside and out. We eat, drink and breathe differently than they did.

However, I do know that our environment most certainly does not account for the entire increase. It does not make the numbers go up all by itself.

If our environment does have an effect on the numbers, then I believe that it’s all of the other stuff I’ve mentioned in combination with it.

Ready to riot?

Now the fun part, let’s riot!!

No, not in the streets and no, not in fear.

The truth is, new numbers or not… nothing has changed. The world is what it is whether or not we crunch some numbers.

What we need to do, together, is use the numbers to further educate and further make aware… if it means increasing the numbers even more, so be it! Let no little autistic go undiagnosed! Parents and doctors should NOT be missing it.

Actually, if you think about it, it’s a bit ironic. We raise awareness because the numbers continue to rise and in so doing, we cause the numbers to rise even more! And then when they do, we freak out and raise more awareness! 

The point is, if ever there was a reason to riot, this is it. We need services. We need help.

Not just us parents but the entire community. Autistics need more help in school, more help in the workforce, more help in life. Not to do everything for them but to be there for them when they need it!

My son is growing up. One day he’ll outgrow the services available to him. I would love to know that he can find work that won’t judge him or treat him unfairly, I would love to know that he’ll have services he can take advantage of if he needs to… whether he’s living on his own or not.

I would love to know that if my son wants to and is able to, he can do any job he wants to do, be anywhere he wants to be and do anything he wants to do, because he can, rather than being told that he can’t because of the label that others use to hold against him.

Riot.
Not to stop the numbers from going up.
To help the people that those numbers represent.

Comments { 10 }

Autism Study of The Month: Older Fathers Face Greater Risk of Having Child With Autism

dna

Increased de novo copy number variants in the offspring of older males

Source: http://www.nature.com/tp/journal/v1/n8/pdf/tp201130a.pdf

Abstract

The offspring of older fathers have an increased risk of neurodevelopmental disorders, such as schizophrenia and autism. In light of the evidence implicating copy number variants (CNVs) with schizophrenia and autism, we used a mouse model to explore the hypothesis that the offspring of older males have an increased risk of de novo CNVs. C57BL/6J sires that were 3- and 12–16-months old were mated with 3-month-old dams to create control offspring and offspring of old sires, respectively. Applying genome-wide microarray screening technology, 7 distinct CNVs were identified in a set of 12 offspring and their parents. Competitive quantitative PCR confirmed these CNVs in the original set and also established their frequency in an independent set of 77 offspring and their parents. On the basis of the combined samples, six de novo CNVs were detected in the offspring of older sires, whereas none were detected in the control group. Two of the CNVs were associated with behavioral and/or neuroanatomical phenotypic features. One of the de novo CNVs involvedAuts2 (autism susceptibility candidate 2), and other CNVs included genes linked to schizophrenia, autism and brain development. This is the first experimental demonstration that the offspring of older males have an increased risk of de novo CNVs. Our results support the hypothesis that the offspring of older fathers have an increased risk of neurodevelopmental disorders such as schizophrenia and autism by generation of de novo CNVs in the male germline.

Translation

To begin with, “de novo” is latin, it means new, or “in the beginning”.

Also, CNVs or “Copy Number Variants” refers to the strands of DNA, the stuff that makes us us.  Sometimes there are “variants” which puts things out of sync, thus adding to “anomalies” or “errors” in our genetic code. Sometimes something is copied when it shouldn’t be, or is missing when it should be there.

So to translate “de novo copy number variants“, what they are talking about is new anomalies in a person’s DNA.

Traditionally, DNA is largely inherited from the parents.. a person will inherit eye color, hair color, skin color and more from their parents. This is present in the DNA.

However, there is also new elements to the DNA which is not inherited… these are “de novo“.

Ok so now that we know that, to continue, this article is discussing the likelihood that Autism could occur despite the family history showing no signs of Autism in the past.

To accomplish this, they took mice of varying ages, 3 months and 12-16 months and compared their offspring.

They found that there were 7 different CNVs among the offspring where it was already present in previous generations, meaning it was inherited.

However, they also found 6 new CNVs among the offspring that had older parents… and 0 new CNVs among the parents of the younger mice.

This would indicate that brand new CNVs can arise if the father is older… creating a new line of Autistic family future possibilities.

My opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

First of all, these are mice. Mice do not have Autism. However, one can’t dismiss the findings especially in light of other recent findings in genetics and DNA, in terms of Autism.

If true, this could help to explain why a child could have Autism despite being unable to find any history of it in the family tree.

Not all CNVs are harmful which means that while there could have been differences, and sometimes those differences are associated with Autism or even Schizophrenia, there’s no evidence that those differences would definitively cause Autism. Some may, some may not.

Like most studies, while they did find some CNVs in some mice, not all of the offspring showed these results. Meaning that just because you’re an older father, there’s no reason to think that your child will definitely be born with Autism.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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Clinical Trials – Where are they? How do I get involved?

Have you ever wondered how those clinical trials come to be? Where they are? How you can get involved?

Ya, me neither. But now that you are wondering, I have found the man that has the answer to these questions.

Mr. Sarkis Dallakian is the father of two and has come up with a way to give you these answers on an on going basis. What he has built is nothing short of genius, merging Google’s Maps technology with the clinicaltrials database giving you a visual and searchable dynamic map of your area with information on who is doing it, why they’re doing it and how you can be involved.
ClisMap

ClisMap

ClisMap is not just the best tool, but the only tool that I know of on the net to get detailed, easy to understand information on clinical trials anywhere in the world. Not only is it feature rich (allowing you search by many categories), it is easy to add it to your own site allowing you and your visitors access to this information as well.

Yesterday, I had pleasure of talking to Mr. Dallakian, I thought I’d share some of that with you here. Below the interview is an example of the ClisMap integrated right into this site, specifically targeting Autism trials!

 

1. Who are you and what do you do?

I’m a research programmer and web developer. I work at The Scripps Research Institute, in La Jolla, California, which is one of the world’s largest, private, non-profit research biomedical research institution. http://www.scripps.edu

2. Do you have children with special needs? Can you tell us about them?

We have two kids, my son is 5 years old and my daughter is 7. We had no special problem with our daughter. However, with our son, we noticed that he was having problems with speech when he turned 2. We were very afraid that he might have Autism spectrum disorders and that our worst nightmares might realize. We were fortunate enough to meet another couple who went through the same troubles. Long story short, my son is now doing good after we spend countless hours paying special attention to him. Now he goes to kindergarten and he is doing fine. 

3. How did you come up with the idea for ClisMap?

In 2008 Google introduced Google App Engine (http://code.google.com/appengine) and I started experimenting with that. I started building websites and learned web development skills. I was also watching many NIH webcasts (http://videocast.nih.gov/PastEvents.asp), in my spare time, and learning about different Clinical Trials. I also visited http://clinicaltrials.gov to see what kind of information is available there. This website is a great resource that many clinicians are using to find information about Clinical Trials. It has advanced search options including location based search. However, there was no options to search for clinical trials near specific location, similar to the one we use on Google maps. In general, clinicaltrials.gov is oriented more towards clinical investigators rather than patients. I started searching for a site that would let me find Clinical Trials based on my location. I wasn’t able to find one after searching hours on Google. That’s why I decided to create ClisMap as it’s useful for both me and the community. 

4. How often is ClisMap updated? Where does it get it’s information?

ClisMap updates its database daily. It takes this information from http://clinicaltrials.gov RSS feed and stores it on Google App Engine. 

5. How can people best use ClisMap? How do you get the most out of it?

People can best use ClisMap for searching for clinical trials nearby. For instance, one can search for smoking or obesity related clinical trials to see if there is one available nearby. You can also browse for clinical trials by conditions, interventions or sponsors to see who are conducting these clinical trials and why. 

6. What other projects do you have?

I also run a website called Food Prints (http://food-prints.appspot.com). This was my first Google App Engine project and it has been one of the top 5 projects featured in Google App Engine Gallery for 3 years in a row.

7. Do you have anything else that you’re working on?

I’m now spending most of my free time (besides family and G+) working on Heritage Health Prize Competition which offers a US $3 million Grand Prize. I’m not expecting to win this prize but rather learn new things from best data mining and machine learning specialists around the world.

Once again, thank you Mr. Dallakian… and now, here is an example of his ClisMap in action:
(If it doesn’t show up the first time, just reload the page. This isn’t a Clismap issue, it’s a wordpress+iframe issue.)

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The risks associated with having another child

Why did I leave Autism out of the title?

Well, that’s because there are far more risks to every childbirth than just Autism. There’s the chance of a still birth, cancer, down syndrome and a whole host of other disorders, illnesses, ailments and can have a child growing up in a hospital somewhere. In some cases, a death sentence. Some children are born with cancer that kills them 2 or 3 years after birth.

What a harsh way to start a blog post right? I know. But I think that sometimes we Autism parents can forget the realities of our situation… there are people out there who have it so much worse.

The reason for this post is that many people have concern over recent findings in a study that I covered earlier today on this blog: Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

riskThe risks of any younger sibling

That being said, that there are a large number of risks, you have to realize that any and all of those birth risks are possible in all births. That means, the first child you have has a risk.

Knowing that, any child you have afterwards has an increased risk.

How do I know that?

Well, if there’s a 10% risk of a disorder at childbirth… then having 2 children means you have a 10% chance and a 10% chance.. a 20% chance.

That’s actually not quite right, satistically but for the argument of this article, it’s close enough.

You essentially double your chances by having a second child because you took the risk twice. That increases every time you have another child.

That’s for anything and everything… not just Autism.

What does it say when you don’t take the risk?

So you don’t want to take the risk of having a second child with Autism? Have you ever asked yourself: “Why is that?”

Let’s not pretend that having children with Autism is not hard and it certainly does cost a lot… we all know that.

But is that the real reason? Or is there something more to it? Let me put it this way: If you did have get pregnant a second time and discovered the child would be born with Autism, would you have an abortion?

Take some time to really think about it… is there some level of denial there? What does this say about your acceptance of your child with Autism?

Conclusion

For me personally, I love my son with Autism, not despite Autism. I think he’s amazing and has taught me a lot more in 6 years than I did in the 30 years prior.

Having a second child with or without Autism just does not seem like a risk to me.

I’ve had a few people on Twitter ask me what I thought of the recent findings… they asked me if I would take the risk or avoid the risk.

My response was this:

Decide whether or not to have another child with your heart, not your fears.

Ask yourself if you love your child. Ask yourself if you love your family. Ask yourself if you want to add another beautiful child to your family. Ask yourself what you heart is telling you.

Weigh the pros and cons, I’m not saying that there are no financial responsbilities or unforeseen risks that may arise but be aware that those finances and risks are always there, regardless of siblings or studies.

If no one had children for fear of the risks.. there would be no children.

Comments { 12 }