17 different women, 36 crazy children, 0 babies in utero
Adventures, Advice and Questions from a group of Mormon women who met in Queens, NY and have now scattered all over the place.
 

Tuesday, April 29, 2008

Autism FAQ




To celebrate Autism Awareness this April, I thought I would share some of the most common questions I get from others after they learn that I have a child with autism.





1. Do vaccines really cause autism? Should I get my child immunized?

Wow, I get this question A LOT and I am always terrified of giving advice that might have poor consequences for a child, so I try to give as even-handed and informed answer as possible. My response usually goes something like this...the CDC (Center for Disease Control) claims there is no correlation between immunizations and autism. However, there is a large contingency of parents who say otherwise. There was a recent court case that, in at least one case, linked vaccinations to contributing to a child's autism.

Parent groups (and some medical professionals) contend that the mercury-based thermisol, which is used as a preservative in some vaccinations, is causing autism in children, often after the MMR vaccination that a child typically receives after their first birthday. However, thermisol is no longer used as a preservative and autism rates have not gone down.

MY OPINION...as a non-scientist but fairly informed mother of a child with autism is that vaccinations might contribute to the autism of a small subgroup of individuals with autism. I chose to delay vaccinations for my "typical" younger son until after the age of 3. I felt this was an appropriate compromise between the need for him to be vaccinated against disease and possibility of it triggering autism with his increased genetic risk. Even now, he still only gets one vaccination per doctors appointment. And I so look forward to the lecture I receive from my doctor about how vaccinations are perfectly safe, blah blah blah, every time he is due for a shot (NOT!).


I think it is important to remember that when you go to see your pediatrician, they are not only serving the welfare of your child, but also the public as a whole. This means that they often see the immunization issue from a public perspective. Indeed, it is a good public health policy for everyone to be immunized in a timely manner. Whether it is best for an individual child is up to debate. YOU, as a parent, however, serve the welfare of your child alone...so if you are uncomfortable about the timing and/or amount of vaccinations given to your child, don't be afraid to question it, to walk out of the office, find a new pediatrician if necessary....trust your mommy-sense!


You can read a lot more about the issue here and here and here.



2. If immunizations aren't causing any or all of the autism cases, then what is?

Most experts agree that there is a genetic component, combined with an environmental trigger. There is no such thing as a pure genetic epidemic (think natural selection, Darwin), hence the belief that something in the environment is triggering these cases. Some possible "triggers" include mercury (not just in vaccinations, but in the air), and other preservatives toxins and pollutants. Basically, nobody knows for sure.

3. If you have a child with autism, do your chances of having more with autism increase?

Yes. You often see families with multiple children on the autism spectrum. I read about a family in Utah where all six of their children had been diagnosed on the autism spectrum. The chances of having a second child on the autism spectrum is about 1:8. Almost always, a second child with autism will have a more severe case. Let's just say it's enough to keep me well supplied on birth control. I wish I had enough faith to have another child and know it would all work out, but I just don't.

4. What are the treatments for autism and how effective are they?

The best-documented treatments center around behavioral theory, changing negative behaviors into positive ones and teaching new skills incrementally. We are an ABA family and I like that it is data-driven and tailored to each child's specific needs. Other popular therapies include Floortime, TEAACH, which is used in many schools, and speech and occupational therapies.

Alternative therapies abound....everything from hyperbolic oxygen chambers to chelation to horse therapy. I don't ever knock a therapy just because it hasn't been well-researched, but as parents with limited time and resources to help our child, we have chosen therapies that fit his needs and have proven results using scientific method.
Efficacy of autism therapies vary greatly between individuals, some kids show great improvement and most of their autistic behaviors disappear. Others don't make much progress at all. There are a lot of kids (like my own son) who fall somewhere in the middle. The general rule is that the sooner you can get your child started, the better outcome for success. Unfortunately, very few health insurance companies will pay for autism therapies (even the well-researched therapies), strapping parents with a huge financial burden.

5. What is this autism diet I keep hearing about?

There is a theory that people with autism have trouble metabolizing gluten and casein. It stays in their system, creates a toxic environment, and autistic behaviors result. The autism diet eliminates foods with casein (dairy) and gluten (wheat) from the diet in an effort to cleanse the system of these toxins. Read a better explanation here.
There are a wide variety of outcomes from this diet. There are parents who swear they have "cured" their child of autism through the diet alone (I admit I am a bit skeptical). Others see great improvements in their children's behaviors and cognition. For us, it was an expensive and frustrating year full of cooking, shopping at Whole Foods and trying to make sure Noe was getting enough calories, while seeing no improvement in his autism. That said, I'm still glad we gave it a try. And if you come across a child on the diet, please respect the guidelines of the diet and check all labels before giving food to that child to give the diet its best possible chance of success.
6. Why do a lot of kids with autism have strange, repetitive behaviors such as flapping their arms?

These behaviors are called "stims" or self-stimulatory behaviors. Like many things related to autism, no one knows exactly why they occur. Autism is a sensory disorder, so these stims undoubtedly are linked to the different ways that people with autism experience their senses. I notice in my own child, that if he is not receiving enough sensory input, or if he is bored or tired or overwhelmed, he will start to stim. I also have noticed that if I get him some hard exercise during the day, his stims will decrease.

When my son was first diagnosed, I was obsessed about controlling his stim. I didn't want anyone to publicly see him stimming. I'm not sure if it was because I was self-conscious of my child's differences or if it made his autism more "real" to see it outside our home. Now, my attitude has changed....I don't want him to stim because when he is stimming, he is not plugged into our world and not learning. We do allow him to stim for small periods of time in his room and before bed so he has an outlet for his stress, but we try very hard and keep him plugged in during his daytime activities.

One way to look at stimming is that we all have strange, repetitive habits that make no sense but feel good on some level. Some examples - nail biting, twirling hair....I remember my dad as a "leg shaker"...he always had one leg shaking when he was sitting down. While these activities are socially acceptable, they are just as senseless as the stimming of a person with autism.

7. What causes the frequent meltdowns associated with autism?


Autism is essentially a sensory disorder, meaning that people with autism don't always feel/hear/see things in a typical way. New places, especially places with a lot of stimuli, can be overwhelming and sometimes even a physically painful experience for a person with autism. Some people with autism act out in these situations while others simply shut down. Whenever I took Noe into Times Square when we were living in New York, he would instantly fall asleep. His mind couldn't process all of the input, so he shut down. This made him a really well-behaved baby and toddler....but now I know better.

Some people with autism prefer routines and have difficulties adapting to change. When their routines are interrupted, that can sometimes send them into a meltdown as well.


8. How can I help a friend with a child with autism?
I previously made some suggestions here. I know one difficulty I have is finding sitters who are comfortable with Noe. He isn't very difficult, but it is hard to have to explain all of his quirky behaviors and exactly how we are handling them over and over.

If you have a child with autism in your primary class, ask the child's parents how to best include that child in your class and enlist other children in the class as "helpers." Don't be afraid to explain autism in an age-appropriate manner (or have his parents come in and do it), but don't forget to highlight the child's strengths and special qualities.

My son's primary teacher this year has been such a blessing to us. She goes out of her way to include Noe in each lesson and often includes games he enjoys and things he is good at (matching activities, etc). She also assigns another child in the class as his helper for the day....which has gone a long way in helping the other kids develop a relationship with him.






21 Comments:

  • This is a great post! I have a brother with Autism and am a speech therapist and appreciate this even perspective and information. I am personally all for immunizations as a sister and mother-there are too many bigger dangers if we don't protect our kids and society from these awful diseases coming back- but do have several family friends who are convinced that it was the "trigger" for their child's regression. However there are so many triggers like you mentioned that I think it boils down to their sensory systems. I think to understand the fear with regard to immunizations, one has to be very careful to differentiate between correlation and causation. there is a correlation, like with many events such as birth, illnesses, and immunizations which have been shown to be related to the regression of skills that characterizes Autism. Not causing them.

    I have had several patients who are on GFCF (gluten/casein free) diets and I have mixed opinions. I believe 1)using the word "cure" in any of these diets or therapies is very dangerous and misleading 2)GFCF works like a charm with some kids and 3) does very little for others. I had a patient who was having major behavior issues for a few weeks. The next week he came for his speech session back to normal and Mom reported she'd discovered some food she'd bought had gluten in it. As soon as she eliminated it, his behavior improved. It's not a cure and you don't know until you try it or any other therapy.

    I believe there is definitely a genetic component with environmental triggers which has caused the rise in Autism ALONG WITH increased awareness, education and identification. Kids are now being identified with milder forms who would have gone under the radar and kids are being diagnosed with more severe forms that would have previously been diagnosed as having mental retardation not just that there are more of them.

    sorry, didn't mean to go on so long! again, great post!
    posted by Blogger Liz&Meg at 4/29/2008 01:31:00 PM  



  • Liz&Meg, Yes..thank you for mentioning that increased awareness and diagnosis has definitely contributed to the rising rates. I completely agree...looking back at my school experience I can identify more than a few kids who probably fit the label but weren't diagnosed because there was so little known about autism at that time.
    posted by Blogger Jen at 4/29/2008 01:59:00 PM  



  • One thing to consider is that extremely bad allergies can mimic many of the characteristics of autism. We started being very careful with our son (who was one question away from being labeled autistic) and started treating him and the results were extraordinary.

    Regarding vaccines I think it's much more discredited than you suggest. However I do think that the tendency to put so many vaccines in one shot might be having an effect. For my next child I'm definitely doing what you do and have fewer vaccines administered at one time.
    posted by Blogger Clark Goble at 4/29/2008 04:38:00 PM  



  • Thanks for the post, I know it means so much to a lot of mothers and families out there.
    posted by Blogger Kage at 4/29/2008 06:12:00 PM  



  • you did a really good job with the FAQ! We have a floortime home program and we've been through quite a lot with the medical interventions- the supplements and medications, the diet, the chelation, the allergist and the gastroenterologist and LOTS with genetics, metabolics and the current studies on them. One with NIH and one at the MIND center all about finding the genetic and environmental correlations.

    anyway, I wanted to add this, it's from my family blog, and it just gets more and more interesting. We're getting closer to answers...

    there has been a storm of fresh news in the autism world about widespread mitochondrial disorders caused or exacerbated by vaccination. A quick orientation on the federal case that opened the flodgates is here, at US news and world report. If you want to follow every unfolding in this big deal, the blog would be adventuresinautism.blogspot.com, and if you are just wondering what mito and autism have to do with each other, today's Washington post may help.
    posted by Blogger cchrissyy at 4/29/2008 07:27:00 PM  



  • Jen, you did a great job on this post - thanks so much for taking the time to write such an informative piece. I know that there are many readers who will appreciate this information
    posted by Blogger Chloe at 4/29/2008 09:47:00 PM  



  • Jen - Thanks so much for writing this. I really appreciate it. I think so many mothers & fathers are worried about their kids, especially in regards to vaccinations since it has been in the news so much recently. It is so confusing and you just don't know who to trust. I like what you said about being there for your child and trusting your instinct as a parent in regards to getting vaccinations and your relationship with your pediatrician. Again I really appreciate the time you put into this post.
    posted by Blogger beth at 4/29/2008 10:54:00 PM  



  • I have an eight year old son on the spectrum, diagnosed with PDDNOS.

    re: #6

    One thing we have found and that I had predicted with stimming is that as a young child ages, stimming will get worse before it gets better.

    All humans stim, as outlined in the FAQ. Look at any baby and you'll see them flapping their limbs, making strange sounds, and experiencing their physical surroundings as best they can.

    As we get older, we tend to pick up on behavior that is socially acceptable and modify our stimming to fall in line with what our peers accept.

    People with ASD have a very limited sense of what is socially acceptable. Instead of picking up on it, it is something that must be learned, if possible. But during their development, there is a period of time where the benifits and satisfaction that stimming provides outweighs the persons ability to control it.

    With our son, we have patiently worked with him to help him recognize when he is stimming. For the longest time, he didn't even realize that it was happening. Now he understands that he does it, but he doesn't know why. He'll just say something like "I just need to do it".

    After he became aware of stimming, we worked on getting him to control it. We have found that the most effective thing for him is for him to clasp his hands together and lower them, letting him squeeze his hands together as hard as he can for the duration of the stim. He's pretty good at doing it now. If he is sitting, we get him to put his hands in his lap when he is grasping during a stim.

    We have found this to be the best compromise, letting him "get his stim out" while having his action as low key as possible. As he gets older, he is beginning to get more control over his stims. We are fortunate that his behaviors on the spectrum are mild enough that we can work with him on this.

    It would be interesting to see how others cope with stimming in public and what level of success they have had.
    posted by Anonymous JM at 4/30/2008 05:36:00 AM  



  • Jen, I think this is a fantastic post. Very interesting to read. Thanks for writing it. And by the way, regarding #3, I don't think you lack faith--I think you are realistic. Not a fault.
    posted by Blogger Katie at 4/30/2008 05:13:00 PM  



  • Jen, Thanks for writing this up. N is lucky to have you as his mother.

    This is related to the genetic/environment cause. Is there any consensus on when autism symptoms start manifesting themselves? I've heard people talk about a child perfectly on track developmentally who developed autism symptoms seemingly overnight at around 1 1/2 to 2 years old. Do others seem problems from a much earlier age--even as a newborn?
    posted by Anonymous Michelle at 5/01/2008 12:45:00 PM  



  • Michelle,
    it is most common for kids to regress from 18 months to 2. there are also kids like mine who were obviously troubled since birth. some of them get the autism diagnosis early, like 1, but even when mine was in early intervention and seeing many specialists, it took 4 years to get "the label".
    then, there are kid who regress later than 2, or kids who never regress but their development lags while their peers move ahead for so long that eventually the gap warrants the label. Notwithstanding the very common 18-month-shots regression stories,
    the average age for an autism diagnosis is FOUR and Aspergers is SEVEN. A sizable chunk of kids aren't identified until they enter school.

    Current studies are identifying subtypes of autism- how the cases present, what causes it, and how to best help kids in each type.
    there are significant groups on the spectrum with digestive troubles. with metabolic dysfunction. with seizures. with autoimmune and allergy issues. with heavy metal toxicity. there's the kids who suddenly regress and those who never regressed.
    treating them all as "one autism" have muddies the picture, and separating them out finally allows clinical trials to see how to best help each type of case.
    posted by Blogger cchrissyy at 5/01/2008 04:59:00 PM  



  • Thanks for putting this post together. Very informative.

    I never thought much about immunizations with Princess and Pumpkin, but I have found with new baby brother, I am taking a different approach - very similar to what you are doing with #2. I am pro immunizations because I dont believe the personal risks outweigh the greater good, but I don't see any reason for a newborn baby to receive in immunization for a sexually transmitted/blood passed disease.
    posted by Blogger TftCarrie at 5/01/2008 06:14:00 PM  



  • cchrissy is so right on. The problem with autism is that it is one big fat label when actually it is multiple (or maybe even dozens) of disorders lumped together until someone is able to sort out the whole mess. It will be so much easier to help our kids when subtypes are all sorted out because right now parents are forced to do a lot of guessing as far as how to proceed with therapies.

    Michelle, an interesting study I read about....a group of neurologists (with experience diagnosing autism) were given video tapes of different children at their first birthday parties to see if they could predict a later autism diagnosis...and they could do so at a rate of better than 90%. I believe an autism diagnosis can't be given until 18 months, but in many cases (except for those kids who regress) it can be detected earlier.

    There are a few markers during the first year: poor eye contact and engagement, an oversized and rapidly growing head, delays in babbling, pointing, gesturing. But they are not always accurate: Asher had a noggin off the charts his first year and I was pretty nervous...but otherwise his development stayed on track.

    For Noe, I had strong suspicions at 18 months (although everyone around me disagreed) and we didn't get diagnosed for almost a year after that. I get sick whenever I think about that year and all the time we wasted....
    posted by Blogger Jen at 5/01/2008 07:31:00 PM  



  • Excellent and informative post Jen. I have never have made a comment on here before but wanted to reiterate the statement in #1, second paragraph...

    "However, thermisol is no longer used as a preservative and autism rates have not gone down"
    Thermisol was removed as a preservative from vaccinations around 1999, and in fact from 1999 to 2008 ASD rates have consistently increased despite the removal of thermisol. With all recent studies pointing that there is more to the complex picture than the MMR vaccine as the cause as parent advocacy groups contend, I would say at this point, it would be much more fruitful to invest resources into looking at other potential multifactorial causes that could play a role in the development of ASD, such as environmental and genetic. I think liz&meg's first paragraph is right on. Here are some recent articles regarding MMR/Autism.

    (march 2008) Arch Gen Psychiatry. 2008; 65:19-24 Abstract, 15-16.

    (feb 2008) "MMR Vaccine Not Linked to Autism in Virologic Case Control Study"
    posted by Blogger Darrin Privett at 5/02/2008 10:43:00 AM  



  • Thanks Jen for your comments. I love reading your posts about your son. My brother has autism and so I understand the struggle, pain, and the joy that comes with living with someone with autism. I believe my parents have talked to you (Jim and Cathy) about my now 19-year-old autistic brother and his success. Sounds like you have found a way to heal by helping spread awareness. Thank you.

    This last semester in school I did some research on autism's affects on siblings. I was interested because I have caught my other siblings, and even myself, exhibiting autistic behavior. For example, I've noticed that my youngest brother sometimes paces in the backyard as my autistic brother did but that seems to be the only autistic behavior my little brother exhibits. Although there is a chance that all of us kids have varying degrees of autism, I really believe that since my autistic brother's odd behaviors were accepted in our home and became almost social norms in our day-to-day lives, we siblings began to mimic his behavior unconsciously. Naturally, siblings act a like because they live and play together.

    Unfortunately, I found that very little research has been done on autistic children's siblings probably because no one really cares except for people like me who fall into that category. But I think that this research could be valuable in helping improve family life with autism. I also wonder if any siblings have been misdiagnosed as having high-functioning autism when really it was socialization, not genetics, that have resulted in their autistic behavior.

    Have you read anything on this topic?
    posted by Blogger Maria Tortilla at 5/05/2008 01:12:00 AM  



  • Dr. Privett - I totally agree that a lot of time has been wasted on the vaccine link that could have been spent looking at other possible causes. However, it's hard to discount the parent advocacy groups completely who think there is a link...it's a hard issue.

    Maria Tortilla - No, I haven't read a lot on sibling issues. Maybe you can continue to research it and turn it into a career?

    One article does come to mind that a friend sent (I can't even remember what publication) that talks about how siblings tend to handle a child with autism in the family. It mentions many become "supersiblings" really responsible, overachievers ..while others have a lot of problems in school and tend to act out. It seemed to think that there weren't a lot of kids in the middle.

    As far as missed diagnoses of siblings...I hope that isn't happening! You have to remember that autism is a spectrum disorder so many many people exhibit a few autistic traits (I know I have more than a few). To get an autism diagnosis, however, a person must have severe speech and social deficits. Autistic behaviors (ie the pacing you mentioned) wouldn't lead to a diagnosis by themselves without the speech and social deficits.

    I'd love to hear anything you find out in the future about the sibling link and I'm glad you are so interested in it all!
    posted by Blogger Jen at 5/05/2008 09:34:00 AM  



  • Dr. Privett - I totally agree that a lot of time has been wasted on the vaccine link that could have been spent looking at other possible causes. However, it's hard to discount the parent advocacy groups completely who think there is a link...it's a hard issue.

    Maria Tortilla - No, I haven't read a lot on sibling issues. Maybe you can continue to research it and turn it into a career?

    One article does come to mind that a friend sent (I can't even remember what publication) that talks about how siblings tend to handle a child with autism in the family. It mentions many become "supersiblings" really responsible, overachievers ..while others have a lot of problems in school and tend to act out. It seemed to think that there weren't a lot of kids in the middle.

    As far as missed diagnoses of siblings...I hope that isn't happening! You have to remember that autism is a spectrum disorder so many many people exhibit a few autistic traits (I know I have more than a few). To get an autism diagnosis, however, a person must have severe speech and social deficits. Autistic behaviors (ie the pacing you mentioned) wouldn't lead to a diagnosis by themselves without the speech and social deficits.

    I'd love to hear anything you find out in the future about the sibling link and I'm glad you are so interested in it all!
    posted by Blogger Jen at 5/05/2008 09:34:00 AM  



  • This was a site, http://thinktwice.com/stories.htm, I have found in my research on to vaccinate or not to vaccinate, or just find a middle ground. I heard a lot of autism case mothers, but wanted to hear other "risks" These stories touched my heart and it's sad that these parents had to go through it the hard way to help us new parents to make certain choices. Thank you to all that voice your opinions one way or another for us that are just trying to figure out what is best for our kids. I guess that is one of the great things about blogs.
    I for one, after all my hours of searching the internet, reading books, and trying to understand the diseases we are vaccinated for and the vaccines that are given to our kids have come to the same conclusion as you. I am waiting until my kids are older (as it is done is many other countries) to give their little bodies a chance to build its self before injecting their precious blood with foreign things. I love that so much information for an against vaccines are out there. You as a mom just have to make the time and effort to make a personal decision for you, your children, and your family. And I for sure couldn't do it without the power of prayer.
    posted by Blogger britt at 5/06/2008 09:56:00 PM  



  • This article just came out yesterday. I think everyone should read it and become more informed. Vaccines have a major connection.

    http://www.ageofautism.com/2008/05/sick-monkeys-st.html
    posted by Blogger Kaley and John at 5/21/2008 04:51:00 AM  



  • Last week on the bloggernacle there was a post about vaccines and aluminum. I can't remember where it was. Can anyone help?

    I chose to limit the vaccinations my 2 month old got this week. I let him get two (Hib & PCV). His dr. office has a triple vaccine (Pediarix - DTaP, Hep B, IPV) and so I'm trying to decide whether to do that next week, or request them to do them separate (if they even carry them separately).
    posted by Blogger Julie Stephens at 5/30/2008 10:07:00 PM  



  • Julie,

    It was right here on Tales:

    click here
    posted by Blogger TftCarrie at 5/30/2008 10:24:00 PM  



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