Dr Linda Nathanson-Lippitt of Children’s Habilitation Center in Atlanta, has kindly agreed to talk to our magazine about autism, its causes and treatments. The interview took place between Michael Shengaout and Dr. Nathanson-Lipitton August 23, 2012.
MR. MICHAEL SHENGAOUT: Hello Linda! Thank you for taking time out of your busy day to answer some questions about autism and the types of therapies that exist for autism.
DR. LINDA NATHANSON-LIPPITT: My pleasure.
MR. SHENGAOUT: My first question has to do with the term Autistic Spectrum Disorder. Is it accurate to talk about autism as a single disease or is autism a category that includes a variety of conditions?
DR. NATHANSON-LIPPITT: It’s more accurate to think of autism as an end point, a clinical picture you can arrive at from a number of different paths. It’s not one condition at all.
MR. SHENGAOUT: Which factors have been identified as causes of autism?
DR. NATHANSON-LIPPITT: First of all, we know that there are number of genetic disorders which result in a very high incidence of autism. The most common one that we see is Fragile X Syndrome which is a disorder of some of the genes on the X chromosome. Interestingly, many of these genes are involved with the process called methylation. A methyl group is a carbon atom with three hydrogen atoms attached to it. You can think of it as Mother Nature’s switch for turning on and off different genes. The methyl group also makes things like Vitamin B12 functional inside the neurons. If you aren’t a good methylator you’ll have problems in many areas, including a problem with brain function, which can lead to autistic symptoms. This means that a very high percentage of people with Fragile X Syndrome are autistic. [Also] Fragile X Syndrome is common in people with Down Syndrome. Although many of them are absolutely not autistic, again, statistically the presence of Fragile X syndrome increases the risk of autism. We know from studies that if there is one autistic person in a family, there is an increased risk that other children in that family will exhibit autistic symptoms. If you look at family clusters, you’ll see that close relatives have a statistically higher risk. So we know that there is the clearly genetic factor, and probably more than one genetic factor. We also know that there is a subgroup of kids with autism who don’t detoxify well. We live in a very dirty world where sucking on batteries can get you a load of cadmium, playing on pressure treated wood can get you a load of arsenic. We are all, I think, familiar with the risks of lead in brightly colored paints on the things that kids chew on and eat, with mercury pollution from coal plants and other areas. Most of us are fairly good at getting this stuff out of our body. But many people also have problems with getting rid of these toxic elements and, once again, we see a much higher level of toxic accumulation in people in the autistic spectrum. There are also problems with inflammation. For example, people in the autistic spectrum have a much higher incidence of elevated titers to the herpes virus called Herpes 6, which is not the genital kind that is more well-known by the public, and we often see many of these kids who have been fully immunized. Overall, these individuals don’t have protective titers to, for example Whooping Cough, which is another of the illnesses that they often seem to have trouble making good titers for.
MR. SHENGAOUT: Could you explain what protective titers are?
DR. NATHANSON-LIPPITT: When you get immunizations, your body makes antibodies against that particular pathogen. And you are protected from that pathogen from those antibodies. So we talk about the amount of antibody you have in your blood as the titer. If that particular pathogen tries to get into your body again, your white cells immediately recognize an enemy and you’re got all your immunity troops line up to kill the pathogen.
MR. SHENGAOUT: And your immunity wipes out the pathogen?
DR. NATHANSON-LIPPITT: Exactly. We know that we have multiple indicators that many of the kids in the autism spectrum have high levels of oxidative stress in their bodies as well as signs of inflammation. So, there are different pathways that can lead to you having a person who is having trouble with language, with socialization, with a need for sameness, which we put together and call autism.
MR. SHENGAOUT: That’s a great overview. So, you mentioned that there are certain family clusters and, in some ways, you can observe a certain proximity between siblings or sometimes a certain dependency between what the parents have and what their children have. One of the factors, like inflammation, clearly directs the doctor to investigate the immune system. Do you find that there is a certain set of factors with the parents of autistic kids? Let’s say some immune issues or similar types of things?
DR. NATHANSON-LIPPITT: Yes, once again we are talking sub-groups. But yes, families with children with autism seem to have a higher incidence of autoimmune diseases in blood relatives. We find illnesses like Lupus or childhood onset diabetes. We seem to see more thyroid problems in these families and we see more history of emotional problems in the families, very often bi-polar disorder, depression, and obsessive compulsive disorder. The tic disorders seem to be more frequent in family clusters where kids with autism pop up. I just want to emphasize that of the presence of these other disorders in a family automatically means that you are going to have a child with autism. But on a statistical basis, we see an increase of risk factors.
MR. SHENGAOUT: Would you say that with autism we seem to have a combination of nature and nurture, so to speak, meaning genetic and environmental factors work together in these families?
DR. NATHANSON-LIPPITT: Absolutely. My understanding is that we are dealing with genetic vulnerability and an environmental stress source. When you put the two of them together – that’s what is giving us the epidemic which is really what we have.
MR. SHENGAOUT: When you talk about an epidemic, do you mean that the numbers of autism cases is growing. You have been at this for at least thirty years, am I right?
DR. NATHANSON-LIPPITT: Yes.
MR. SHENGAOUT: You have had a chance to observe the population with autism for a long period of time?
DR. NATHANSON-LIPPITT: Absolutely.
MR. SHENGAOUT: Do you think that the growing number of autism cases is due to better diagnosis or do you think that we are really having an epidemic?
DR. NATHANSON-LIPPITT: The answer to both is yes. I think both things are happening, yes. When I was in training thirty some odd years ago, seeing autistic kids was “Wow, what an interesting thing”, you know? And generally, having been trained in New York, there’d be one school that would have an autism class for a group of schools and now there isn’t a school that doesn’t have classes for autistic children. We were seeing an incidence of autism at one in ten thousand and now we are up to one in seventy eight, from the latest numbers that I have seen.
On top of that though, we’ve expanded the diagnosis as well. So you’ve got both factors. We absolutely were not missing children who were non-verbal, who were sitting and rocking back and forth and holding their fingers in front of their , what we call stimming on their fingers. We weren’t missing those kids, but what we are seeing now is a sub-group of kids who go under the heading of a degree of high functioning autism or Asperger’s Syndrome.
By the way, both of these diagnoses are about to disappear from the DSM 5 (Diagnostic and Statistic Manual) that is coming out. It’s all going to be replaced with the term autistic spectrum disorder, which I think is more honest. Although in some ways, it’s nice to be able to parse things out a little bit more. So, there has been a lot of controversy about how DSM 5 is going to look. The DSM is the “Diagnosis and Statistic Manual” which we use to give official number-related diagnosis.
But yes, we do understand that there are many very bright people who may have some early delays in language development, who are a little bit quirky, who may have a little bit more trouble in terms of connecting with other people, but are highly functional in the world who now, when we stretch the boundaries do get included in the diagnosis.
So I think you’ve got both things going on. Many of these kids had what we just used to call developmental language disorder and found that as the language got better, which it invariably did, much of the quirkiness disappeared as the communication skills got better. We still see kids like this, so I think we have had a little bit of both. But there is no question that we are seeing far more, even when you figure that you have this milder group, which is now being included. That’s why I say that this is an epidemic.
MR. SHENGAOUT: So would you say that even the hard core cases have increased severalfold?
DR. NATHANSON-LIPPITT: Those have increased a hundred times.
MR. SHENGAOUT: The severe cases?
DR. NATHANSON-LIPPITT: Yes.
MR. SHENGAOUT: Amazing.
DR. NATHANSON-LIPPITT: Oh yeah. Oh yeah. The reaction of a doctor used to be, “Wow, I just saw an autistic kid. Isn’t that interesting that since it’s so rare.” And now, frankly, probably seventy percent of my practice is kids in the autistic spectrum. When I started thirty years ago it was, maybe, fifteen percent of my practice.
MR. SHENGAOUT: Wow. On the other hand it looks like everyone who is a bit introverted or just lacks social skills a bit and taps his food seems to be labeled as autistic. Do you think that the term autistic is a little over used?
DR. NATHANSON-LIPPITT: Yes I do. I think that it’s really, really tricky. Frankly, sometimes using the term autistic gets you services that you wouldn’t get without that diagnosis. I think some people stretch the diagnosis to help people who could use some help building social skills or who could use some help with language impairment, or with anxiety or the like, and I definitely think that there is some over-diagnosis that tends to go on. Sometimes there are good ulterior motives for over-applying the diagnosis, like the ones that I just described and sometimes because it’s kind of the diagnosis de jure and it’s so common. Well very often if you are not sure what is going on, it’s the easiest thing to slot people into.
MR. SHENGAOUT: I have kind of read quite a few articles where anyone with a bit of eccentricity would be described as autistic and I was thinking that it’s same as describing anyone with a good imagination as schizophrenic! Just because they imagine things doesn’t mean that they are out of touch with reality.
DR. NATHANSON-LIPPITT: Yeah, well on the edges of virtually any psychiatric diagnosis you have borders that are fuzzy and whether to lump them inside the border or outside the border when you are over in the milder area is very often a judgment call. There isn’t a blood test you can do that gives a definite answer of autism or no.
MR. SHENGAOUT: Talking about blood tests, could you tell me about some of the most promising, in your opinion, autism research that you know about? What University is leading the way? Which researchers of doctors are working on these questions? What are they doing? Where are they looking to find new treatments and diagnoses?
DR. NATHANSON-LIPPITT: The Child Mind Institute in California is certainly doing some very exciting research. They’re looking at functional EEG’s, functional MRI scans, looking at what parts of the brain are lighting up or not lighting up with different kinds of function, trying to see whether we can use some of this data to be more refined in picking medications or supplements to help rather than using the trial and error method that we really still use as we select treatment.
At the University of Arizona, Jill James is doing some very exciting basic research (see Jill James video here). A lot of her work is looking at issues of methylation and sulfation. Jim Adams who is a very bright, interesting guy, also out in Arizona/Colorado area does a lot of work with Jill. He started out as many people do: he was in the field because he has a daughter who is severely autistic. He wasn’t a scientist but he believed that we need to do some good research and not just have anecdotal information. Jim is the author of the few really good papers documenting heavy metal toxicity and improvements in the kids with using DMSA Chelation (expelling heavy metals and other toxic elements). John Hopkins is doing some interesting work on methylation. Martha Herbert is a neurologist up at Massachussetts General at Harvard who has been doing some very interesting and exciting work looking at brain inflammation. She is a crusader for the fact that our environmental deterioration is a major factor in the poisoning of a lot of our most genetically vulnerable kids. There is a map of mercury pollution in the air in Texas, and when you overlap incidence of case of autism, it virtually overlaps exactly with where the mercury, the air pollution with mercury is.
MR. SHENGAOUT: That I didn’t know.
DR. NATHANSON-LIPPITT: Oh yeah. Oh yeah and so Martha has been doing some fabulous work. It is such a pervasive problem that the work is going on all over the country. Clearly a great deal and there is still a divide between the people interested in toxins and the really smart, dedicated, honest people who are insisting that this is a brain disease as opposed to a biologic intruder affecting the brain and other parts of the body. So you do have honest disagreement with people who feel that the biologic approach is not necessary, that all you really need to do is lots and lots of ABA therapy or Floor Time Therapy or incidental learning. Those are terribly important because reprogramming the brain is absolutely important, but if you don’t take care of the biologic underpinnings, even those who are insisting that this is still a brain disease (which obviously is not me), do admit that the incidence for example of intestinal problems, whether it’s chronic diarrhea, or constipation alternating with diarrhea, or highly self-restricted diets is far more common in the autistic population than the general population. So the behavioral stuff terribly important and the use of medication to help with some of the symptoms – absolutely! But looking at the biologic underpinnings is absolutely mandatory if we are going to recover these kids and help them do as best as they can.
MR. SHENGAOUT: Basically what you are saying is that you need to look not only into fixing the software, but also fixing underlying hardware.
DR. NATHANSON-LIPPITT: Well put.
MR. SHENGAOUT: Well, I think we have covered basically everything that I wanted to ask. Is there anything else that you would like to add or any message of hope to people who woke up today realizing that they have a child who afflicted with this?
DR. NATHANSON-LIPPITT: The first thing is to recognize that that the child has a challenge with autism. That is a huge challenge for the child and for the family. I have given this lecture multiple times to my colleagues – any kid in the spectrum deserves a therapeutic trial on methylated Vitamin B12 and you can’t give this orally. The gold standard is giving it as a small injection every three days and giving it a five week trial. I would urge everyone who has a child in the spectrum to try this, because, as I was saying, most of these kids don’t methylate well. If you can’t methylate Vitamin B-12, it doesn’t matter how high your blood level of Vitamin B-12 is, it’s not going to help and, frankly, 80% of the kids I put on methylated B-12 show improvement in eye contact, language and attention. The down sides are so minor: a little bit of hyperactivity in a small number of kids, the possibility of some sleep problems. For me any kid in the spectrum deserves a five week trial.
MR. SHENGAOUT: So there is a silver bullet you should try before you go anywhere else.
DR. NATHANSON-LIPPITT: Yeah. You know you are still going to have to do the ABA or the Floor Time, but this may give you a much more accessible child’s brain to work with.
The second thing that I think is so important is to remember as parents: don’t lose your humanity and your needs, because you have a special needs child. Your children who are not affected still have all of the needs that any child has for support, attention, play, fun with their parents, so it is so important to make sure that you, parents, give yourselves time to play, to have R & R, to have time together, to have time for yourself. There is a tremendous pull to say, “Well I am okay and my child isn’t, so all of my needs have to go on the back burner”.
If you don’t take care of yourself, you’re not going to be as effective in taking care of your more needy child and the neurotypical children in your family will start having issues because they don’t lose their needs for the wonderful support of the family, because they have a sibling is more needy. I think an incredibly important thing for every family who is battling autism is to take to heart.
MR. SHENGAOUT: What are the best ways of supporting Autism related research?
DR. NATHANSON-LIPPITT: I think there are two very good organizations. #1 is the Autism Research Institute, ARI, which is based out in California and this is one of the oldest organizations that Doctor Bernie Rimland started almost fifty years ago. Sadly, we lost Doctor Rimland a couple of years ago. He was one of the first people who corrected the ideas of the fifties when we had people like Bruno Bettelheim, saying that autism is the “result of refrigerator mothers”, and God knows how many wonderful caring women carried this incredible burden of guilt, that they were not loving enough to their child and that’s why their child had autism until this went by the wayside. But, in the context of that and the initial thing, that autism was just a brain disease and the rest of the body didn’t have any issues — all you could do is treat the symptoms, and you couldn’t cure the condition. Bernie who was a Ph.D. was a voice in the wilderness saying there has got to be something more here and gathered scientists and people around him, and started the Autism Research Institute. Some of the first things, like using Vitamin B-6 and magnesium which does help many of the kids, were started by Bernie back then and the Autism Research Institute still sponsors them. Jill James research, Jim Adams research is sponsored by them and so that is a huge good organization. Autism One O-N-E is another wonderful organization so those are two places I would definitely be looking at to support.
MR. SHENGAOUT: I mean if you have funds to support?
DR. NATHANSON-LIPPITT: If you have funds to support, those would be two wonderful places to endow.
MR. SHENGAOUT: Linda, thank you very much for your time and for such an informative lecture and overview of Autism and what is going on with it.
DR. NATHANSON-LIPPITT: My pleasure.