The Autism Spectrum

Vaccines and Autism take 2

Lindsay M. Oberman, Ph.D. — Tue, 18 Aug 2009 13:41:23 +0000

I was privileged to be able to attend a workshop at Cold Spring Harbor labs on Autism last month and I thought I would share some new pieces of information I learned relevant to the autism/vaccine debate.

First, I should say that in all areas of science that I have encountered you will find evidence on both sides, so if you want to show that Autism is caused by vaccines you will cite one side of the literature, but if you want to show that it isn't you will find equal amounts of data on the other side. That being said, one needs to appreciate the person that is doing the study and the methodology. So, just because there is data out there to support both sides doesn't mean that they are equal in quality.

Prior to this meeting, when asked (and I do get asked very frequently) what I think about the autism/vaccine debate, I would always say "there is no evidence that vaccines cause autism, but that for some children, it may be that vaccines either make their disorder worse or initiate a process that they were already at risk for."

But now I have a slightly different perspective. At this meeting Dr. Eric Fombonne spoke about the numerous (and I mean numerous) epidemiological studies that have been done that show that children who have vaccines and those that don't, have the same risk of developing ASD.

Then you say, well what about the mercury preservative, isn't that bad? Well, a couple responses to this, 1. The mercury preservative that has been suggested (Thimerosal) is ethyl mercury, quite different from methyl mercury that is responsible for mercury poisoning. If you say well what's the difference, imagine the difference between ethyl alcohol (that is in alcoholic beverages) and methyl alcohol (that is in antifreeze). Methyl alcohol is toxic and causes blindness in small doses and death in large doses. Thus, the type of mercury in Thimerosal cannot be compared to the effects of methyl mercury. 2. Thimerosal was removed from almost all childhood vaccines in the late 90's and early 2000's, but the number of ASD is certainly not going down.

Then you say, well what about the MMR vaccine and it's relation to autism. And you might even site Andrew Wakefield. If you believe any of that data (which I do not) I urge you to read "Autism's False Profits" by Paul Offit. As it relates to the MMR, I have a few points, 1. don't confuse this with the Thimerosal argument as MMR has never contained Thimerosal, because the MMR is a live virus, so it never had the need for a mercury preservative, in fact the addition of Thimerosal would kill the vaccine and make it useless. The argument (as far as I understand it) for the MMR causing autism goes something like this, that the measles virus is taken up by the gut and somehow gets into the blood and then into the brain. There is no evidence that this happens or theoretical mechanism that could lead to this happening.

So why do people think that vaccines cause autism? This is based on how our brains work. We are always looking for causal relationships. So, if you eat something and then get sick you will assume that it was the food that made you sick. Which may be true, but may just be a coincidence. There are in fact many coincidences that happen all the time and it doesn't mean that one thing caused the other. Children get most of their vaccines around the time that the symptoms of autism are expected to emerge. This is a temporal correlation and cannot be assumed to be causal. Also, because people who are paid big money (and I mean hundreds of thousands or even millions of dollars) say so. Or they are swayed by these people's statements to believe in data that is of extremely poor quality. And now we have come full circle. Though it is true that you will find support for both sides of the vaccine debate, you need to look at the credentials of the people on both sides and realize that fame and number of times these people have been on TV does not make them experts in the field.

A couple extra points that I didn't know previous regarding vaccines that I thought I would pass along...

1. I said in my earlier post that you can ask your pediatrician to space out the vaccines so the child's immune system doesn't have to deal with all of them at once. I was actually corrected by a immunologist who said that actually the immune system can better develop resistance when the shots are all given together. So, actually you are not helping your child by spreading them out.
2. Though the number of shots have increased over the years people born and vaccinated in the 1970's and earlier actually were getting greater amounts of vaccines because they were not as purified as they are now. So our immune system was actually more taxed than the children now.
3. The one child that won the case in court that is often cited. I previously noted that the judge determined that the vaccine aggravated a metabolic disorder that then lead to the ASD, but interestingly, if you talk to doctors who specialize in metabolic disorders none of them recommend that the children not be vaccinated, so even for these children, it seems that the benefits of the vaccine outweigh any potential risk.
4. A website was also brought to my attention, which I do not support, but thought was interesting called jennymccarthybodycount.com where it lists the number of vaccine preventable deaths and illnesses in the U.S.

It is everyone's responsibility to be educated, we just need to make sure that our education is coming from reliable and knowledgeable sources.

Boston Globe Article

Lindsay M. Oberman, Ph.D. — Thu, 11 Jun 2009 16:30:23 +0000

I just wanted to bring my reader's attention to a Boston Globe article describing our research and those of other researchers in the field. It can be read online.

Does A Hyperstimulating Environment Cause ASD?

Lindsay M. Oberman, Ph.D. — Tue, 05 May 2009 19:52:31 +0000

In a response to a recent post I was asked if I thought that a hyperstimulating environment could lead to ASD. I thought this topic deserved more than a simple response. So, here are my thoughts, but I am very open to hearing yours...

First, though neuroscientists often talk about brain development as if it is a straightforward thing, it is important to remember that the brain does not develop in a vacuum. The environment that the child is placed in has a great influence on how the brain subsequently develops. The brain is capable of setting up circuits based on what the child learns about it's environment.

Arguably, children growing up in recent years are being exposed to an ever more diverse and stimulating environment packed with stimuli to process from very early on. For example, my sister recently complained to me about how difficult it was to find a simple toy for my nephew that didn't blink or make noise or move around in a sporatic fashion.

Thus, if, as I have suggested that a child who is predisposed to develop autism has a brain that is set up to be "hyperplastic," meaning it responds very easily and quickly to it's envioronment and is capable of changing brain connections easier than a neurotypical individual, then it would seem that an overstimulating environment, such as the one our children are growing up in right now would be the "perfect storm" for leading to the brain changes that I would suggest lead to the behaviors of ASD.

Specifically, in the child who is predisposed to have ASD, his brain may be more reactive to novel stimulation and once activated, may have difficulty shutting itself off. This has the potential to lead to exceptional abilities in specific domains, but also limits the skills that require coordinated efforts of multiple systems (e.g. social and communication skills).

This would also be consistent with the reported increase in prevalence over the past several years.

Is there any truth to this theory? Who knows. It would be hard to test experimentally, however, it is true that many children with ASD seem to be hypersensitive to stimuli in the environment (sounds, lights, tactile sensations, etc.) and we need to be aware that the brain is developing and changing within this context and do our best to foster healthy neurodevelopment. Now the next question is "what type of environment leads to healthy neurodevelopment." Unfortunately, as neuroscientists we have more questions than answers, but we are getting there and when I know the answer to that question, I will let all of you know!

Autism Awareness Day at the U.N.

Lindsay M. Oberman, Ph.D. — Sat, 04 Apr 2009 13:23:58 +0000

Yesterday I had the true honor of attending Autism Awareness Day at the U.N. where they screened the movie Autism: The Musical and we were treated to a live performance and panel of children with autism and their parents.

First, I just want to tell you how touching the movie is. You may think the title is funny (I did when I first heard it), but it is about a program called the mirical project in L.A. which works with children with autism and at the end of the project (6 months) the kids put on a musical theater performance. These are kids all across the spectrum from Asperger's to nonverbal autism and everything in between. The movie chronicles not only the project and the kids, but the families and the stressors and joys that come out of raising a child with special needs. I laughed, I cried, and we all cheered through the whole movie.

The live performance was a special treat and I am clearly biased, but I was most impressed with a boy named Adam who played the cello. But, I said I was biased because Adam participated in some of my research projects when I was in grad school in California.

Across the board the thing that stood out was that the miracle project gave these kids one thing that they did not get at school and that was unconditional acceptance and love for their unique talents and special needs.

I was also thrilled to see the number of people in the audience and the amount of support for such a project. The U.N. is dedicated to bringing awareness of autism to the world. As they understand that it is through awareness and loving understanding that we can begin to value the gifts that children on the spectrum bring to this world and help them to live full and happy lives.

Clearly not a "controversial topic" but I just wanted to share my thoughts about a truly moving and heartwarming experience.

Stigma

Lindsay M. Oberman, Ph.D. — Wed, 01 Apr 2009 15:16:31 +0000

I apologize once again for my inconsistant posts. I get so busy with research it is hard to find the time to devote to the blog, but it is always my hope to be more consistant in the future. I also realized that the post I drafted in January somehow did not get posted. I just uploaded it.

For today's post I thought I would ask a question to those out there with ASD. Has the increased awareness of disorders on the autism spectrum helped or harmed the stigma?

I can see both sides and often am confronted with people with differing opinions on this matter. On one side I think it has helped the stigma. People are more aware of it. They understand that it is a neurological condition, not just that the person is "socially awkward" or "rude" but on the other hand if you had been living your life without a label and now you have a "diagnosis" people may treat you differently. Oftentimes I am asked by participants that noone be told that they are participating in this study (which is always adhered to because of HIPAA and confidentiality guidelines) anyway, but that they are very concerned about others (family members or coworkers or friends) find out that they have Asperger's Disorder or Autism.

Also participants often either are only interested in research that will lead to some therapeutic benefit to themselves, not interested in basic research and then there are those who are only interested in the basic research to gain insight into their condition, but do not want to be "changed".

I understand that in a harsh world anything that makes you different puts you at risk for social stigmatization, but on the other hand, it is the diagnosis that can help you to be more functional and receive the resources that will in the end help you to lead a more full and happy life.

In a related area, I have faced a similar issue and because of my mother's proactive attitude, I was given the additional resources that I needed and I truly believe without the "diagnosis" I would not be in the place I am today. Specifically, when I was in Elementary school, I received speach therapy. If I had not received this therapy as a child I have no doubt that my difficulties would have led to much frustration in communicating over my lifespan. A family member now has a similar problem that I beleive would benefit from speech therapy, but his mother is afraid that putting him in such therapy would stigmatize him and is thus resistant to such treatments. Her fear is that the stigmatization will impair him more than his speech difficulties. I disagree, but we each have to make our own decisions for ourselves and our children as to what is best for them in the long run.

The question of the benefit vs. stigma of a diagnosis is clearly not a cut and dry issue, but I hope to hear your thoughts on the topic.

A New Day

Lindsay M. Oberman, Ph.D. — Wed, 21 Jan 2009 03:17:05 +0000

On this historic day, I thought I would post my thoughts. I watched the inaugural address from the cafeteria in the hospital where I work and was truly moved by the whole experience. I believe that we have a president who truly has our best interest in mind. I was particularly appreciative when he said that "We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost." I truly hope that he means what he says and will increase NIH funding (our main source of research funding in the U.S.) to allow scientists to do our job.

I was watching CNN the other day and Lou Dobbs was talking about how it is unreal that researchers devote their lives to science, spend many years (in my case 5 after my bachelors) in graduate school earning a PhD, only to realize after graduation that the U.S. does not value our contribution and we are lucky to receive a salary of $35-40,000 after graduation.

It is not my salary I want to speak about today, though, because there are many professions that I feel are overcompensated for their contribution to society and those that are very much undercompensated. I however, chose this profession knowing that I would not become rich, but to make a difference in people's lives and I could if I wanted to work at a biotech firm and make way more, so it is not my salary that I am concerned about, but rather funding for the research itself.

I think that the true cost of doing research is underappreciated. As researchers, we need to purchase equipment, pay subjects, pay for time in an MRI scanner etc. These are requirements to do our job and require public and private grants to support. Unfortunately with the current economic crisis and our former president for the past 8 years choosing to deny any increased funding to NIH, our current state is quite grim. Currently, NIH is funding approximately 18% of its applications and funding typically takes over a year to obtain even if you are the select few.

I receive many comments through this blog and others arguing that those with Asperger's and higher functioning forms of autism do not want to be "cured". I completely understand and respect your position. And in fact my research is not aimed at "curing" autism. Though those who are interested in it may use the knowledge we gain from some of my studies to develop more effective treatments. My goal in my research is to understand the mechanism leading to autism and related conditions. Not too long ago, it was thought that autism was caused by having "cold" unemotional mothers. Luckily, thanks to science, this theory has been debunked. Now, new equally damaging theories have cropped up and have been promoted by nonscientists. It is only through science that we may understand the biological and environmental factors that lead people to be who we are. It is through this knowledge that we may not only treat diseases and disorders that affect ones ability to live a happy/healthy life, but also accept the normal range of differences that make us who we are.

I truly hope that Obama keeps his promise and we see a renewed appreciation for scientific research in the upcoming years.

When Children with Autism Grow up.

Lindsay M. Oberman, Ph.D. — Fri, 19 Dec 2008 19:42:37 +0000

Dear Readers,

I am sorry for my absence these past few months have been extremely busy, but quite exciting! I have finished our first set of studies on plasticity in ASD have have some very exciting results which hopefully will be published soon. I have also been traveling quite a lot to conferences in Washington D.C., Amsterdam, and France where I met other researchers studying autism and neuroscience. It was quite an exciting, but exhausting few months, but now I am getting settled back in the swing of things and will be beginning the next set of studies in January.

For this entry, I wanted to talk about something that I have been thinking about quite a lot recently. This is, what happens to the children with autism when they grow up? I have worked with many children with autism whose parents spend many a sleepless night worrying about this. Will I be able to care for them? Will they have to go to an institution? What services are out there when my child with autism becomes an adult with autism?

Luckily, there are several programs sponsored by both governmental and private organizations for adults with ASD. As I currently live in New England, I am most familiar with the programs here, but I am sure similar programs exist in other areas of the country.

For example,

For the highest functioning people who are able to live on their own, have a job, go to school, etc. There are support groups. For example, where I am, the largest organization that provides support groups is the AANE (Asperger's Association of New England) http://www.aane.org which has support group meetings, activities, speakers, classes, etc. for adults of all ages. They have workshops with topics focusing around employment, relationships (both romantic and friendships) and housing. They are an excellent resource for those with high functioning autism and Asperger's Syndrome who just need a little help every now and then and want a supportive group to discuss problems with.

But what about those who are not able to live on their own? I was at a conference recently where I heard about really interesting centers where adults with disabilities including autism as well as others can live and work in a supportive community. Specifically, the ones that I am aware of are Camphill. http://www.camphill.org/ and Amego http://www.amegoinc.org/index.html I really like these programs as they stress independence and self-confidence. For those who are not able to live on their own, they have support and medical staff available, but also stress independence and have work programs that give the residents a sense of responsibility and pride in contributing to society.

So, I can confidently say to the parents who worry that their child's options are living with them or an institution, that we have many other options available now that will give your (adult) son or daughter the opportunity to live in a supportive, respectful community, while still giving you the piece of mind that they are safe and well taken care of. If you would like to learn more about centers such as the one's I listed above, I encourage you to contact your local chapter of the Autism society of America http://www.autism-society.org/site/PageServer

I encourage your comments regarding these and other postings.

Thank you and I wish all a very Happy Holidays and New Year!

The use of TMS for ASD

Lindsay M. Oberman, Ph.D. — Sun, 21 Sep 2008 19:18:17 +0000

I haven't posted an entry in a while because I have been incredibly busy with collecting data for my studies. When thinking about what I was going to write about for this posting, I realized that I haven't really talked about my research, which is in and of itself arguably a controversial topic in autism. I am currently a research fellow at Beth Israel Deaconess Medical Center of Harvard University. My research involves the use of transcranial magnetic stimulation to explore and influence brain plasticity in adults and adolescents with autism spectrum disorders. Essentially, my goal is to understand the mechanism that developmentally are affected in individuals with ASD that leads to the behavioral symptoms.

We believe that the mechanisms of plasticity (essentially how the brain changes in response to experience) is abnormally high in individuals with ASD. We use transcranial magnetic stimulation to induce a "change" to the brain and measure how it influences responses following this change. Transcranial magnetic stimulation is a technique like none other. It is capable of targeting a small (about 1-2 cubic centimeter) section of brain and either enhance the functioning or reduce the functioning of that section for a period of time. It is noninvasive and only has very limited risk of side effects. It is an extremely powerful tool for a researcher to be able to manipulate the functioning of a specific area of the brain and track the effect of this change over time. So far we have done some amazing things. We have found evidence that we can improve the functioning of the mirror neuron system and some communication skills following repetitive application of TMS and we can explore what is leading to the functional brain changes present in individuals with ASD.

Though TMS has the potential to be an invaluable research tool and potentially the source for novel therapeutic interventions, many are afraid of TMS. It is somewhat scary to think that we have the capability of changing the functioning of the brain for the better or for the worse, but I think it is only scary because of the direct connection. In essence this is the same thing that drugs do (changing the firing of the neurons in the brain), but in an arguably indirect way. Essentially, TMS takes advantage of the fact that the brain functions via electrical impulses and creates a focused fluctuating magnetic field which changes the firing of the neurons directly. Fortunately and I suppose unfortunately (depending on your perspective) the changes that are induced by TMS are not permanent. Typically sessions of TMS (which last between 1-30 minutes) will lead to changes on the order of minutes to several days. So, it's potential as a therapeutic intervention is limited by the participant's willingness to come back for "maintenance stimulation sessions," but it certainly has a great potential for researchers interested in seeing how the brain responds to stimulation in different regions.

I look forward to your questions and comments on TMS and how we may be able to learn about ASD by utilizing this technique.

Neurodiversity: Does ASD need treatment or does society need to accept autism as an "alternative way of being?"

Lindsay M. Oberman, Ph.D. — Wed, 02 Jul 2008 19:36:08 +0000

A friend of mine recently sent me an article from New York Magazine that discusses the neurodiversity movement, which believes that society should accept autism as "another way of wiring the brain." This is a topic that I am often faced with as a researcher trying to understand the neural basis of autism with the long-term goal of developing more effective treatments. Here is the ethical dilemma...

Currently, autism spectrum disorders are lumped into one category. Whether this is appropriate or not is topic for another entry, but does create a circular problem in that we recruit participants for our studies attempting to understand the neural basis of ASD based on a behavioral diagnosis. However, given the variety of behavioral symptoms across the spectrum, it is possible and in fact probable that the brain basis of Asperger's Disorder is different from that of lower-functioning autism. Additionally, though few would argue that the population that would benefit most from the research is children who have severe impairments, there are many ethical and practical reasons why these individuals are often excluded from studies.

Ethical Issues:

1. Consent. Since 1976 Informed Consent has been a requirement of all ethical research studies. This means that the participant has to be given enough information about the procedures and risks in the study in order to make an informed decision of whether they wish to participate. These consent documents have to be written in language that is comprehensible to the participant based on their age and reading comprehension level. Finally, the participant himself (or herself) has to give voluntary consent free of coercion or undue influence, meaning a parent or guardian's consent is not sufficient.

Thus, it is often difficult to create documents that describe the research procedures in a way that would ensure that the participant is giving voluntary informed consent.

2. Children and people with disabilities are protected populations. In general this means that according to the National Commission for the Protection of Human Subjects these individuals can only be involved in research studies if they are the only population that can be used for the study, the study poses minimal risk and has a strong benefit directly to the individual.

Therefore, it is extremely complicated and difficult to get approval for studies with these populations as again ASD is currently thought of as one group of individuals.

Practical Issues:

1. Often times research requires the person to pay attention to a task. Do a task for an extended period of time. Or do a task that requires a certain degree of cognitive skill. These requirements often makes it practically difficult to include lower-functioning children in these studies.

I realize that I have somewhat digressed from my original topic of neurodiversity, so I will get back on topic. Do higher functioning people need to be "fixed" or should society accept them for who they are? My two cents...

We all have strengths and weaknesses and hope to be appreciated for our strengths. I often give the example that I am tone deaf. I will never be an opera singer. Luckily for me, musical talent is not required on a day to day basis in my work and home life. It is not something that has limited my ability to have a successful career, make friends, or find a mate. Alternatively, the social and communicative deficits that define autism spectrum disorders create road blocks to these life goals. I have spoken with many individuals with Asperger's Syndrome (even very high functioning people) who feel unfulfilled because of their difficulties in finding a job commensurate with their intellectual level as a result of difficulty with the interview process, and difficulties in sustaining friendships and romantic relationship as a result of their difficulties with communication and empathy.

Thus, though I commend the neurodiversity community for promoting self-esteem in this population and encouraging acceptance by the general population, it is also quite distressing for researchers like myself who are working tirelessly and often thanklessly to understand and develop treatments for autism spectrum disorders to be told that their life's goal (which I believe to be quite noble) is being opposed by the exact population we are trying to help.

As a final thought, as research continues and we get closer to a "cure" for autism there will certainly be an ethical dilemma of how to treat the deficits without loosing the savant abilities and creative thinking that is often present in conjunction with the social and communicative deficits. We certainly would not want to deny the world of people like Bill Gates and Albert Einstein.

Just my two cents. I look forward to your opinions on the topic.

Do Casein Free and Gluten Free Diets really work?

Lindsay M. Oberman, Ph.D. — Sun, 25 May 2008 21:01:53 +0000

Many parents of children with autism choose to restrict their child's diet to eliminate Gluten (wheat protein) and Casein (milk protein). Claims have also been made that once a child has been put on this restrictive diet, their autism has been "cured", so is there any truth to this?

Well, first, let me state that unlike other "alternative treatments" for autism, if the parent ensures that the child still gets adequate nutrition, restricting gluten or casein from the diet (as far as I know) does not cause any significant risk or harm to the child. But does it help?

The jury is still out. To my knowledge, there have only been two controlled studies investigating the effect of this type of diet on children with autism. The first was a small study that did find fewer "autistic behaviors" in children on the gluten and casein free diet, however, one major criticism of this study was that it was only a single blind study, meaning the parents knew whether their children were on the GFCF diet or not, and this information may have influenced their reports. Another more recent study that was double blind found no significant difference between the group with the GFCF diet and another group without this diet.

So, what should parents do? In my opinion, this diet could help with digestive problems that some children with ASD might have, and if the child is uncomfortable because of the digestive problems, this could be contributing to their behavioral symptoms. So, if you believe that your child (as some children with ASD) has trouble digesting certain foods, and there is a way to eliminate this food without any harm to the nutrition of your child, it may be worth a try. Also, parent should be smart, read up on the topic, and realize that this type of diet is extremely hard to diligently stick to and can get quite expensive.

In the end, do I believe this diet cures autism? No. But could it help? Maybe. And could it harm? Assuming your child gets enough calcium, vitamin D, and other nutrition from the rest of their diet, as far as I know, this diet does not have detrimental effects.

As usual, I am open to any comments you have regarding this or any other topic relating to autism spectrum disorders.