TVCH FORUMS HOME . JOIN . FAN CLUBS . DONATE . CONTACT . CHAT  
 Wikia  Quick Links   TOPICS . TREE-VIEW . SEARCH . HELP! . NEWS . PROFILE
Autism

The TVClubHouse: General Discussions ARCHIVES: 2006 Jun. ~ 2006 Dec.: Health Center (ARCHIVES): Autism users admin

Author Message
Herckleperckle
Member

11-20-2003

Thursday, June 29, 2006 - 12:30 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported May 9, 2005


Alternative Advances: Brain Food for Autism

In-Depth Doctor's Interview


Lewis Mehl-Madrona, Ph.D., explains alternative treatments for autism, which include supplements, vitamins, nutritional therapy, relational therapy and more.

Ivanhoe Broadcast News Transcript with
Lewis Mehl-Madrona, Ph.D., Psychiatrist,
University of Arizona, Tucson, Arizona
TOPIC: Alternative Advances: Brain Food for Autism



Can you define autism for us?

Mehl-Madrona: Autism is a developmental disorder in which kids stop developing at the normal rate, and as they stop developing, they begin to lose interest in social relationships. They begin to become self-absorbed, sometimes to the point of being self-injurious and in other times, just oblivious to humans in their environment around them. They become lost in themselves.



Are you born with autism?

Mehl-Madrona: It usually seems to appear at around 15 months of age. Most kids are developing normally from 12 to 24 months, and then it begins to appear as delayed development.



What would parents see?

Mehl-Madrona: Typically, the child has been developing right along as expected, and it’s as if the child stalls, that new words are not being learned, and sometimes words are forgotten. It’s as if your child seems to be going backward in verbal expressiveness, and the child tends to become more self-absorbed and less connected with those people in the environment. So at the age when children are starting to play with each other, this particular child would be playing by itself, and ignoring the other children. There would not be a connection with the mother and father, children and other people.



How common is autism?

Mehl-Madrona: Well, it used to be one in 500, but now in some parts of the country, it’s one in 150 and one in 100. In California it’s usually one in 200, and in New Jersey it is one in 250, so it’s becoming more common.



Why is that?

Mehl-Madrona: People have a lot of ideas, but nobody knows. There’s a psychiatrist in New York City, Eric Hollander, who thinks it’s the result of epidural anesthesia and oxytocin being given to women in labor. He thinks having that surge of oxytocin, which is the hormone of social awareness, has something to do with the interfering of social awareness development. There are other theories that say it has to do with vaccines and mercury in the vaccines and the neurotoxicity of vaccines, but really nobody knows for sure. We just know it’s on the increase.



Are the oxytocin and vaccines being studied for their possible link with autism?

Mehl-Madrona: Yes, they are being studied. Hollander, who is the psychiatrist in New York, claims he has the data to support his idea. He’s doing a study of 50,000 children, so that should be available soon. The mercury studies or vaccine studies are a little more problematic because it’s not the case that all kids who get vaccines develop autism, obviously. So it has to be a vulnerable child, and we don’t know what leads to children being vulnerable. So if vaccines do play a role in autism, we don’t know how to prove it or demonstrate it because we don’t know who’s at risk. So on the one hand, there are vaccine proponents who argue everybody should be vaccinated and that these theories are hogwash. On the other hand, people are saying: "Well, we really don’t know. There is some correlation, and things do happen after vaccination." I think it’s unfortunate because it’s got to be the vulnerability of vaccines that play a role, and we don’t know what produces the vulnerability. Maybe it’s the epidural anesthesia and the oxytocin or other things that might adversely affect the brain in labor, such as components in the anesthesia. For all we know, it could be viruses in the environment. There are so many potential candidates, it’s mind-boggling.



You say you have seen children go from being very severely autistic to more or less becoming normal. How does that work?

Mehl-Madrona: The primary factor is time, time and more time. Spending enormous amounts of time with the children, enormous amounts of attention. It’s a huge undertaking, a huge effort, and I know families who spend upwards of $50,000 per year on extra services for autistic children. I think this is a very difficult area, where class plays a huge role because families of poverty just don’t have any possibility of doing what needs to be done to make that shift. It typically involves intensive nutritional programs, supplement programs, educational programs, and specific kinds of teachers who are trained for naturalistic behavior therapy. There’s not one common pathway. Sometimes massage, sometimes cranial-cycle, sometimes intravenous therapies, amino acids, there’s no one route. But all of the routes are time-intensive and labor-intensive, and sometimes I think that more than anything else, it’s the drive of the parents to create this wonderful, positive outcome that makes the difference. I’m sad to say that even that isn’t enough for some children, but it is for others. Because we don’t know what combinations of therapies will work, in a sense, we just try everything. It’s total trial and error, and we can hone that down a bit by picking the things the parents are most enthusiastic about. I tend to start with the things that are cheapest. For instance, eliminating wheat and dairy from the diet is reasonably cheap.



Why would you take milk and wheat out of the child’s diet?

Mehl-Madrona: There’s the theoretical basis for taking milk and wheat out of the child’s diet, which is there’s a defect in the enzyme that’s called dipeptidyl peptidase IV (DPP IV), which is the enzyme that metabolizes gluten in wheat and casein in dairy, which are surprisingly similar to each other. The idea is that there is a defective enzyme in the gut that has a genetic origin and that because of this defective enzyme, you can’t metabolize properly the gluten molecule and the casein molecule. The theory holds that when you have a defect in these enzymes, you produce opiate-like proteins, peptide proteins, that actually cross the blood barrier, and get into the blood and have the kinds of effects on the brain as if you were taking opiates. So when that goes to the brain, the idea is that it causes some of the behaviors of autism.

There are pros and cons to that theory. People have tried to block narcotics like peptides going to the brain, and that didn’t help. My own experience on it is that this diet is usually helpful. It helps probably 60 percent of kids. There’s another 20 percent where it’s equivocal and another 20 percent where it clearly doesn’t matter.



What specific changes would you see in a child who has changed his or her diet?

Mehl-Madrona: Frequently, you often see less-aggressive behavior. So if there’s head-banging or lashing out, that decreases. You often see less of what is called self-stimulation behavior, sort of repetitive behaviors that engages one or more sensory systems. You often see increased eye contact of the child with the parents, and sometimes you see development beginning to speed up. I work with two families in Singapore, where by getting rid of the wheat and the dairy and soy, their child began to talk again in both cases. I don’t know how to explain that, but it’s common when you eliminate these particular substances from the diet. The difficulty is that it’s very hard in America to stay away from anything with gluten, dairy and soy because they’re so ubiquitous.



So if you have a child who was severely autistic and now is healthy, will he be autistic throughout his life?

Mehl-Madrona: One mother just told me that her son has been doing fabulous, he’s in a mainstream class, and his teacher doesn’t know that he was ever autistic. However, they went to some amusement park, he tried a new food, and he got aggressive with this new food. It will take him three or four days to get back to baseline and wash that food out of his system. I think the tendency will always be there because there may be some genetic shifts, functional shifts in genetic expression that put blocks out, but I think the better way to proceed is to assume that it will always be there. I believe these treatments have to be ongoing, that the avoidance of these foods has to be ongoing, and just to be prepared for a total lifestyle change.



What natural therapies have you found to be beneficial?

Mehl-Madrona: There are not a lot of studies to support natural therapy. There’s not a lot of money to do these kinds of therapies because nobody stands to make a huge profit like you would with a drug. Consequently, those of us who want to do studies in this area have a lot of trouble finding the funding to do it because it doesn’t make profits. But people all over the world have been trying different combinations of vitamins and communicating on the Internet about what seems to be helpful and what doesn’t seem to be helpful. One of the most common things that come up as helpful are B vitamins, especially B6, B12, also folic acid, and omega-3 fatty acids, especially EPA, or it’s also called eicosapentaenoic acid. It’s interesting that this particular omega-3 fatty acid seems to benefit depression and mania, as in bipolar disorder, and also schizophrenia, so it seems to be a good omega-3 fatty acid for the brain.



Do all these vitamins you’re talking about have something in common?

Mehl-Madrona: No. The only thing they have in common is that they’re super-saturaing the brain, and probably when you super-saturate the brain with nutrition, you can override some defects. So what we’re doing is just loading up the brain with things that it needs. I use this product Equilib a lot, mostly because it has everything in it. I can’t put it together any cheaper than the company does, not because it’s magic in and of itself, but just because it’s cost-effective



Why are B12 and B6 important? What do they override?

Mehl-Madrona: These are important co-enzymes for metabolism, co-enzymes being factors that are needed for the reactions to work. You can’t make neuro-transmitters without B vitamins, you can’t make neuro-transmitters without zinc. So in a sense, it’s the same strategy as conventional psychiatry, when they give you a serotonin reuptake inhibitor like Prozac. What they’re doing is making you have serotonin. So our strategy would be to feed you a lot of 5 hydroxytryptophan (5-HTP), so you would make more serotonin. Tryptophan is the pre-cursor, it comes before serotonin, so what we would do is give a lot of the pre-cursors and co-factors, so that the enzyme reactions could work better. The idea would be that if you have a slow enzyme working at 5-percent efficiency, if we saturate you with these co-factors and with substrates, we can cause it to do a lot more with its 5-percent efficiency than if it’s working on the kind of concentration that’s in most people’s diet.



Would you use specific vitamins for specific problems?

Mehl-Madrona: It’s not that refined. Unfortunately, this is all trial and error. The conventional psychiatric treatment of autism is also all trial and error. It’s just that the trials are a little bit more risky, because the drugs have more side effects than the natural product, but all of us who work with autistic kids are struggling in a world in which we don’t know what to do. For instance, I don’t know how much is enough with vitamins, and what I tend to do is start with my most essential, which is a really good multiple vitamin and try and get it into the child, either in a smoothie or a fruit shake of some kind. If we can get that in, then we can say what we need to do next. For instance, we can say, "Well, there’s not fish oil, so now we need fish oil for the omega-3 so can we get that into the child." I like Nordic Natural because it has a nice lemon flavor that kids can relate to, it doesn’t taste fishy.



What does fish oil do?

Mehl-Madrona: Fish oil has those omega-3 fatty acids that we talked about, the eicosapentaenoic acid, and it seems to somehow stabilize the brain membrane. They are the building blocks of membranes, and membranes are everything in the body. That’s where all of the exchanges take place, where glucose comes into the brain and lets it go out of the brain. There are studies on omega-3 fatty acids showing that they’re useful for depression, bi-polar disorder and schizophrenia. I’m not aware of their being studied formally in autism, but clinically speaking, they seem to help.



We haven’t talked about vitamin A yet. What would that do for a child with autism?

Mehl-Madrona: There was a lot of popularity with vitamin A about three years ago. There was a doctor who was promoting it as the best autism cure in the world. With most treatments, it turns out there were a small group of kids who responded really well to vitamin A, and there were a lot of other kids who didn’t. Vitamin A is also an anti-oxidant; it stabilizes membranes. It really has a lot of beneficial effects. People know it helps the eyes to see better, but we don’t really know why it would be helpful to some autistic kids.

Really, the most frustrating thing about working with autism, is for the most part, we don’t have a clue what to do. We just have to try different things, and vitamin A is inexpensive. If it helps, that’s great, and a lot of times I just see how many pills a child will tolerate, and that’s my limit. So I’ve got to go with the most important vitamins that I think will help. Sometimes, I will have a little bit of luxury in that they’ll take more pills. I’ll try different things, like I’ll try to increase the tryptophan, I’ll try to increase another essential amino acid that makes neuro-transmitters, or I’ll try some other fatty acid like phosphatidylserine or phosphatidylcholine. Sometimes we just accidentally hit on something that really works, but we don’t know when we’re going to do that. So it’s very much trial and error. I also think there’s a strong sort of My Fair Lady Pygmalion component, that if you do things the parents believe will work, that they work a lot better than the things the parents don’t have a lot of feelings about. So in a sense, it’s sort of like a placebo response, but it’s really the parental belief that’s strong. We try and keep very careful data. I use something called the Achenbach Child Behavior Checklist, which is a computerized form that I give to teachers and caretakers and grandparents, mother and father for them to rate the child’s behaviors on a regular basis. We compare the ratings, and you can say, "Well, this child is clearly getting better, or this child is not getting better." If they’re not getting better, then you know everything we’re doing is suspect. We might as well just throw it all out and start over, and try some different combinations. If they’re getting better, and everybody’s happy, we’ll leave it alone. If the trend continues, that’s great.



So one child could be deficient in vitamin A, and the next child it could be folic acid, etc.?

Mehl-Madrona: Right. I think that’s because autism is a syndrome, and we have no clue what the biochemistry is. So all of us, conventional doctors and alternative doctors, are groping in the dark for something that has lots of different pathways to get to the same end point. So, we sort of have to work backwards to find which pathway we’re on without much to guide us in terms of figuring that out



Can you give me some examples of changes you have seen in children?

Mehl-Madrona: We’ll talk about a child in Pittsburgh. He began not really communicating with anyone and showed lots of self-stimulation behavior and some self-injury behavior. Through really intensive nutritional work we found he reacted adversely to not just wheat, dairy and soy, but also grapefruit and peanuts. So there were a number of things that would cause him to regress in terms of his behavior. Then we were doing lots of amino acids in a powder form in a smoothie, and the Equilib product, omega-3 fatty acids, and extra B vitamins above that. He was also getting lots of naturalistic behavior therapy. First, his family started with applied behavior analysis, which is popular, and then we all discovered that naturalistic behavior therapy seemed to work better and ultimately switched to that.



What is the difference between applied behavior analysis and naturalistic behavior therapy?

Mehl-Madrona: Applied behavior analysis rewards the child with M&Ms or something like that for doing it right, whereas naturalistic behavior therapy rewards them with things that are natural in their environment. So, it’s more generalized. It’s things that are in their environment already, that they find rewarding. Then there are touch therapies that are helpful. They specifically use cranial-cyclal and some other massage therapies like reflexology. The mother is also learning all of these things and doing them constantly. So having an autistic child and doing this kind of work is really a full time job for a mother, not to mention all of the other services that she pays for that’s around $60,000 a year.



How long did the mother do this before she saw improvement?

Mehl-Madrona: The improvement was steady, and for the child to become normalized from start to finish, to the point that the teacher now doesn’t know he was autistic, is eight years.



But you are never cured of autism, right?

Mehl-Madrona: If you think you’re cured, you might let down your guard and relapse, so I think it’s important to see it as a lifestyle that needs to continue. There are some people like Temple Grandon, who still is a little bit autistic and writes about it. I read her saying that it’s just who you are; you’re different. With this child I’m talking about from Pittsburgh, I would say he’s always going to have his challenges, but he has resources to meet those challenges, and he has resources to help.



You said you do acupressure and acupuncture. What would that do for a child?

Mehl-Madrona: I think it is just simply moving forward in the process of healing. Any one technique may not be all that helpful, but the combination is we’re trying to push. We’re trying to provide energy or information, so that they can reorganize in a more functional way. With acupuncture, I would like to see people get away from thinking of it as putting a needle in a point that does something. In traditional Chinese thinking, it’s changing the flow of energy in the body. What that does is allow the body to reorganize itself to change the relationships among the organs to shift information to different places, and so I wouldn’t say that acupuncture does anything. However, the process of care causes a reorganization of the family and the person so that improvement is more likely.



What is the traditional treatment for autism?

Mehl-Madrona: The primary treatments would be serotonin reuptake inhibitors like Prozac, Zoloft, Paxil, or anti-psychotic drugs. There’s some talk of using other classes of anti-depressants, and there’s some talk of using mood stabilizers or anticonvulsants.



Have you ever seen a child drastically change as a result of these traditional drug treatments?

Mehl-Madrona: I have seen some children make some big improvements on medications, for sure. I think it’s difficult to get to the point that the teacher can’t tell you’ve ever been autistic with just medication. I personally use medication in certain situations. I’ve used Topomax, which is an anticonvulsant, sometimes with kids that are so compulsive or obsessive that I couldn’t find anything else. I am not against using drugs when we can’t find any other alternative. I think that if we can find another way to do it that has no side effects, we ought to do that. That’s not the mainstream cultural point of view, but for some kids, in order to keep them functional, you end up using drugs. Also, unfortunately, not every family can afford $60,000 of treatment a year. There are poor families that can’t afford anything, and sometimes the only thing they can afford are drugs, because their insurance will cover drugs.



What would be the side effects of drugs in primary care or therapy?

Mehl-Madrona: With all psychiatric medications, the side effects can be the symptoms that the drug purports to treat. So sometimes you give a medication, people get worse, and you think you need to give a bigger dose. Then they get more worse, and you realize it’s a side effect to the medication. With the anti-psychotic medication, potentially diabetes is the side-effect. Also, impaired carbohydrate metabolism is possible with higher doses; abnormal involuntary movements can happen. There is a lot of talk now about the SSRI drugs and increasing the risk of suicide in children. So, I think we have to be cautious about that.



What other conditions can nutritional therapy help?

Mehl-Madrona: I think nutritional therapy is good for everything because it’s your basis. So for me, I treat everything first with nutrition. It’s cheap and often has huge benefits, and then I build on that.

One of my pharmacology colleagues, who theoretically would be very pro-drug, says, "If you’re not eating right, you don’t have enough building blocks for any of these drugs to work." So take an anorexic, nothing works for them because they don’t have any nutrition for it to work on. You can’t reuptake serotonin if you don’t have enough food to make serotonin, it just doesn’t happen. So I think first-line treatment for everything is eating well. Then, I tend to go from the least expensive to the most expensive. Once we’ve got food covered, I move on to vitamins and supplements. Once you’ve got that covered, then I move onto the relational therapy because people’s time is costly. I think in the end, relational therapists are very important. In fact, one of the landmark studies in naturalistic behavior therapies showed one of the best things you can do for autistic children is to find very popular girls about three or four years older than the child and pay them to teach the children how to act normally. Nobody has figured out yet how these girls can do it. We know that adults can’t make autistic kids act like regular kids, but the studies that have been done, which mostly come out of the University of California at Santa Barbara, show dramatic improvements when you just pay popular girls who are about three years older to take the kids under their wings, and make them act more normal.



How exciting is it for you to see a child with autism change and to see what a difference you can make in his life?

Mehl-Madrona: It’s what keeps me going really. In this field, it’s so exciting to have kids who are improving and getting better. I think that’s what keeps all doctors going, is seeing people change and get better. I don’t claim to know why, but for the most part I know that if we persist and do everything possible and discard the things that aren't that we’ll make progress, and that things will get better.

END OF INTERVIEW

Procedures or medicines apply to different people and medical factors in different ways; always consult your physician on medical matters.

If you would like more information, please contact:

Lewis Mehl-Madrona, M.D., Ph.D.
University of Arizona
(520) 722-9787
mehlmadrona@aol.com
http://www.healing-arts.org

Herckleperckle
Member

11-20-2003

Thursday, June 29, 2006 - 12:45 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported February 4, 2005


Life-Changing Autism Intervention

In-Depth Doctor's Interview

Catherine Lord, Ph.D., explains a drug-free therapy to treat the behavioral symptoms of autism.


Ivanhoe Broadcast News Transcript with
Catherine Lord, Ph.D., Autism Expert and Psychologist,
University of Michigan Autism and Communication Disorder Center, Ann Arbor, Michigan,
TOPIC: Life-Changing Autism Intervention




What is the incidence of autism?

Lord: Autism was conceived as a very specific disorder almost always associated with mental retardation, but quite severe. The estimates there were four or five per 10,000 kids, so maybe one in 2,000 kids, had the disorder, but what has happened is that the conceptualization of the disorder has gotten quite a bit broader to encompass kids who have specific social deficits. It includes a general pattern, but is not necessarily mental retardation, and so there are more of those kids. We do not know if having a broader definition accounts completely for this rise in number, or whether there actually are more kids with autism or autism-spectrum disorders. Now, autism is seen much more as a spectrum rather than just one single disorder. Part of the confusion is who exactly is in that spectrum. Where do you draw the line? So, that has meant that their estimates are anywhere from one in 100 to one in 200, which I think is the most commonly accepted prevalence rate.



Is there the chance that some of these disorders were completely different disorders and not autism?

Lord: Yes, because autism is defined completely by behavior at this point. There are hints about the biological causes of it, and the assumption is that it is something biological, but there is no clear biological marker. The most consistent finding that has to do with biology is that kids with autism have big heads more often then you would expect, but a lot of other people have big heads. It is not a very specific finding. So it really may be that autism is like a fever, where you can have a fever for a lot of different reasons and is the final common pathway of a lot of different things.



Is fragile X considered to fit in the grouping of autism?

Lord: Fragile X is separate in the sense that in fragile X, we know exactly where the gene is that causes the disorder, but many kids with fragile X have symptoms that fall within the autistic spectrum. So if you were defining them purely by behavior, some of them would have autism. However, if you are defining autism as things that we do not know the cause of then fragile X would be excluded because we do know what it is that initiates it. We do not know how to treat it very well yet, but we know where that gene is.



Are children with autism tested for fragile X?

Lord: Almost always. I think that is one of the first things that most physicians do.



Why has the incidence of autism increased? Do you think vaccines relate to this?

Lord: There really is not a good hypothesis right now to explain that increase. I think many parents have been concerned that vaccines may cause autism. At this point there is not any good evidence that shows vaccines result in autism. That does not mean that there could not be children where that happened, but you can not explain the increase in autism by vaccine rates because, in fact, they have not occurred at the same time. So, it is not that when the numbers started to increase in autism was the same time when kids started getting vaccines. What is coincidental is that the timing of when autism begins to be noticed in children tends to be the beginning of that second year of life, and there are some kids with autism who really seem to lose skills during that time, and we do not know why. That does occur in the same period when kids get vaccinated, but as far as we can tell it is not causal. It is not that one causes the other, it is just that they both happen at about the same time.



Do you ever see a child younger than 2 diagnosed with autism?

Lord: More and more we are seeing kids who are referred at early ages. That is one of the things we study here, which is how early we can make a diagnosis. Sometimes in 1-year-olds, they really do look and act autistic. By that, I mean they have the same social behaviors, they have odd interests, they have unusual movements, but there are also kids whose parents are concerned early on even though they do not look autistic. Some of them look more autistic as they get older, and some of them do not. One of the big scientific questions right now in the United States and Europe is what are the signs that really mean something in those little kids, and what are the signs that there is no need to worry. Most of the kids I have met where parents have been worried if they might have autism at very early ages are the siblings of kids who have autism, and there have been a number of times where parents have said, "I think this is autism again when I saw the child at first." I could not see it, and then in fact, the parents were right. So, I think there is a lot to be learned about those earliest signs, and there are also a number of parents who have had other kids who will swear that their child really was quite normal in that first year of life, and I think we believe them, but we do not know how that becomes autism.



Do you have any idea what some of those early signs of autism are?

Lord: Yes. Probably one of the earliest signs is a child who seems to understand some language, but does not respond to his or her name. They just do not seem to understand when you are calling them that that is why you are making that sound. Also, kids with autism when they are young do not seem to respond as well to the idea of shared attention. So if I started looking off to the corner over here, you would probably start looking there too wondering why am I looking over there, and that is something that is much harder for kids with autism to do. That is something that typical babies can do usually in the beginning of the second year of life. Also, many kids with autism do not point to draw people’s attention to things. They do not point out things like a cow or a fire engine or the moon, and they do not take that social initiative even though they may go to their parents for help. Those are the predominant things that you look for, but I do think if families are worried it is really important for them to find someone who knows a lot about autism in very young kids and then work with them to try to figure out what you could be doing about it to get the child started on therapy.

Also, I think it is hard that kids at that age are so cute and so engaging, and people have this conception of autism as this horrible disorder that means you are totally aloof and are in a corner banging your head. When in reality, the little kids may be very happy and smile a lot and are just as cute as can be, but they do not participate in social interaction the same way.



Why did you see a need to create a center like this?

Lord: We are interested in trying to merge clinical work research and training. Our primary research has been looking at how kids change over time. So, we are both going forwards and backwards looking at younger and younger kids, and then we also have kids who we have followed since they were 2 who are now teenagers. We have also been very interested in diagnostic assessment. How do you help someone learn how to diagnose autism? We are looking at how you use information parents are giving you as well as what you see yourself as an experienced clinician. To do that we had to move back and forth between research and clinical work. We literally get an idea and then ask parents to let us try it out, see how it works, and then feed that back into the next step. We felt like for the kind of work we do it is very important to be able to have families that we know well and to learn from our clinical experience, but then also to be able to have a research core that is part of a major university. Then, the other thing we gained coming here was access to students. We have graduate students, post docs, and undergraduates who can have this be a part of their education.



What are some of the popular fears surrounding autism?

Lord: I think we used to think that most kids with autism could not talk and would never learn to talk, and that is something that has really changed. Some of it has changed because we are including a broader group under what we call autism, but also I think that having families understand that just because their child may rather line up toys, they still need to figure out ways to engage them and play with them and work on their language. This has made a huge difference in the proportion of kids who can talk, so I think that that has been a major change. I think many people feel that it is such an unusual disorder that their child is kind of taken over by this disorder when they are not. Each child is still an individual child, and they have their own likes and dislikes and idiosyncrasies and real strengths. I think most families understand that this is their child and one aspect of their child has to do with autism, but there are a lot of other things about that child. I think people worry because some kids with autism do bang their heads or hurt themselves. They worry that this is going to be an all encompassing issue, and it really is not something that effects everybody, and kids tend to grow out of it. So, that is a relatively minor part of the disorder, but I think it is scary for other people.



What have your studies shown regarding some of that information?

Lord: I think one of the first things we did which goes back to what we were talking about before is we have established that you really can diagnose autism in 2-year-olds. People used to think you have to wait until kids are 4 or 5 and then do a diagnosis. We really have figured out that we can reliably diagnose autism in kids as young as 2, and that that diagnosis is fairly stable so that most kids who receive diagnoses of autism at 2 still have autism as teenagers. However, there is a proportion of kids who had very mild autism who really do get a whole lot better and where if you met them today at 14 you might really wonder how could anybody have ever said that this person had autism. So it does not mean that there is no hope, but it is not something that is just fleeting and goes away. I think we have also discovered that with education, many more kids with autism can read, do arithmetic, and carry out academic tasks. I think that has been a real change. I think we also are looking for behaviors in the very young kids which have implications for later. For example, one of the things we have discovered in our group was literally how well a baby followed a point and did things like brought objects to people actually predicts how well they get along with other kids when they are 9 and 10 years of age. I think we have a better sense of what the trajectory and patterns are. It is not so mysterious about how kids get there when they are older.



What were some of the statistics you found in your study about the autistic children's abilities at certain ages?

Lord: By age 9 in the two groups of kids we studied, only 14 percent of the kids in each of the groups did not use language as their primary method of communicating. We used to think this statistic was 50 percent. We also found that about 40 percent of both of those groups could really carry on fluent conversations. I think we have always thought these kids could just say a few words here and there, and there are kids like that, but there are also close to half of the kids who really can sit and talk about things that are not present, use multiple clauses in a sentence, and really have quite complex speech.



Was this an observational study or an intervention study?

Lord: It was an observational study. So many of the kids were involved in different interventions, but we did not randomly assign them to interventions.



How significant is it as a researcher that for such a long time people thought so many of the kids would not speak and now it turns out only 14 percent will not speak?

Lord: I think it very encouraging. It is a sense of the ability to change. Sometimes it feels like the interventions we do are just little steps one at a time, but I think having those statistics makes you feel like this does add up to something that is very important. It is not just what you have done in a day, but that you know it leads into something that is really going to change children’s lives.



What exactly is early intervention? What are you doing here at this clinic?

Lord: We do a lot of different things. I think an important issue is that it is different for different kids and for different parents. I think that all primary goals are to help parents figure out how they can use resources that are free, for example the public schools and early intervention programs through the counties, and also to recognize the child as an individual. We then work with families to accomplish what their particular goals are, and it really ranges enormously from child to child. For example, with one little girl, she has a lot of language problems and very strong sensory reactions to things. She really is a very picky eater. She used to be very concerned about how things smelled, and she has very strong opinions about what she should be doing and what she should not be doing, which means that it takes a huge amount of energy and creativity on the part of her parents to get her into a new situation to help her relax, to help her talk to someone she does not know, or play with other children where she can not predict what they are going to do. I think in that case our goals were to try to help her mom organize things so that they were not having conflicts, but where she could predict in advance what was going to happen and then be able to pull herself together to get through waiting in line or going to the store. We helped her get toilet trained because she was very concerned about the toilet and that it is noisy, scary, and has a physical sensation. Trying to get her to be willing to try different foods so that she has a little bit of variety in her diet and trying to help her play with her little sister. She has a little sister who is very impressed with her and wants to do things with her, but she did not know quite what to do so those are the kinds of issues in that family. In another family you might be working on coming up with activities for a child while the parents cook dinner, or you might be trying to help the child respond to his or her name or work on very basic aspects of language. For kids who are very delayed you might be working on just giving them the idea that, "I am going to take all of this stuff in this container, I am going to make noises with it, fill out another container, and I am done." It is teaching the idea of carrying a task out through completion and the idea of doing it with someone and that it is fun.



How often do kids come in here for this program?

Lord: It really varies. Again, there are families that come once a week. There are families that come every two weeks. There are families that come once a month. Other families have other resources working with the kids at home or in schools, and we may see them only every three months or even eventually once a year, but I think our goal is just to recognize that people have different needs and different services available and to work around that.



How early is early intervention, and is it ever too late?

Lord: I do not think it is ever too late. I think that sometimes parents feel like there is this critical period, and if they did not start doing specific things then they would never be the same. There really is not evidence that there is just one time in your child’s life where he is available for doctors to work with him and then all is lost. Instead, it is an incremental process, and one of the things we recommended when I was the head of a committee of in the National Academy of Sciences about early intervention was that kids should from the time they are identified as having autism or even at high risk for autism participate in some kind of intervention program of about 25 hours a week. Now, that is a lot time, and we are not talking about taking an 18-month-old and having him go to school for full days, but one of the things we want families to do, even with very young kids, is to think through, "OK, what is my child getting out of his day? And how can I make sure that someone is playing with him, that he is paying attention to what other people are doing? To make sure he is not just totally spacing out in front of a video he has seen 5,000 times." Parents should have a sense of what their goals are for an 18-month-old. Their goal may be for their child to just play at a playground, to watch other kids, to play with the family dog, or to learn how to use simple toys in a way that would make sense to other kids. So, parents would have very down-to-earth goals, and then you might say, "Well, what is the child’s life like?" You may think, "We will get up, and I am going to do an activity with him, then we will go to the playground, then we will come back to lunch, and while we are eating lunch I will work with him on learning two or three words that I am trying to teach, then his brother comes home, and they will play." It really can be organized very much around individual kids, and for some kids, they are ready to learn from other kids. To have them in a preschool or a regular kindergarten is wonderful for other kids, especially when language does not make a lot of sense. It may make more sense to have them taught by an adult for a significant amount of time in an one-to-one setting and then prepare them to be in regular circumstances.



So, these recommendations are for parents to carry out when they are at home? It is not something to follow just for therapists, right?

Lord: Absolutely. I think the questions is, what do parents want to do? How do they want to spend their time? What are their other responsibilities? It is a combination, but I think it is the parents who are really the critical element in any intervention, even if we are having the child go to school all day. The reality is they are going to come home to their families and do things that probably makes more difference than anything else.



How exciting is it for you to see the impact of the early intervention?

Lord: It has been amazing. I think it has been truly wonderful to see how many things people with autism can do. These are things that we would not have probably dreamed about 20 or 30 years ago.



What is the most important thing you think you can do for a child with autism?

Lord: That is a good question. I think the answer is to communicate, help figure out ways the child can communicate to you so that he can express both what he likes and does not like, what he is interested in, and how he can understand the things that you want to communicate. Then, obviously you want to communicate how much you care for him, but you also want to communicate things about the world. So, figuring that out I think is probably the most important thing.



Where do you think the autism research is headed?

Lord: Well, that is another good question. There is a huge emphasis on genetics in the last 10 or 15 years, and what we found out to date is it is not simple. There have been various places on genes that have been identified as potentially associated with autism, but so far it has not had any practical implications. I think the hope there was that someone would find a gene or many genes, and then they would know what those genes did and would be able to work backwards to saying, "OK, this protein is not produced enough. So, what can we do with the baby that would help their system produce this protein so we would not have autism?" However, that has not happened yet. I think as we have better techniques for neural imaging. We can really look at how people’s brains work, especially without having to have kids asleep or not move in any way. I think we will be able to learn more about people, how the brain functions, what the kids are getting and not getting, and what are ways to help. Then, I think we still need to come down to practical questions like if you are making a choice between an adult working with your child in applied behavioral analysis program one-on-one or having the child in a group. When is it better to be in a group? When is it better to be one-on-one, and are there ways we can adjust those programs around the child’s individual needs?



What is your advice to parents? What is the best way for them to cope?

Lord: Again, I think it is very individual. There are people who are perpetual optimists and there are people who have to figure out what is the worst case scenario and figure out how to accept it and then move from there. I think it is important to remember that autism is just a part of what is going on and that your child is a real person and that in the long run how well you get along is going to have as big an effect as any particular intervention. I also think parents need to just take it one step at a time, especially parents who have children who are getting diagnoses. It is a huge change to consider your life and your child’s life with autism no matter how mild it is. I think giving yourself the benefit of the doubt and seeking support wherever it helps you is very important.



Have you ever seen a child with autism who at ages 12, 13, 14 never said a word, but then started talking?

Lord: I have heard of a couple of kids who starting talking very late. In most cases, where someone has talked about that, when we went back and looked, the child probably was talking all along but it was just that his articulation was so poor that nobody understood.

END OF INTERVIEW

Procedures or medicines apply to different people and medical factors in different ways; always consult your physician on medical matters.

If you would like more information, please contact:

University of Michigan
Autism and Communications Disorder Center
(734) 936-8600
umacc@umich.edu
http://www.umaccweb.com

Jan
Moderator

08-01-2000

Tuesday, September 05, 2006 - 12:29 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
Autism risk linked to age of father
ANDRÉ PICARD
From Tuesday's Globe and Mail

Men who wait until after the age of 40 to father children are far more likely to have offspring with autism than those who have kids before the age of 30, according to a new study.

The older dads are six times more likely to have autistic children than the younger ones, researchers found.

The mother's age does not appear to have an influence on the likelihood of autism.

"We believe that our study provides the first convincing evidence that advanced paternal age is a risk factor for autism spectrum disorder," said Abraham Reichenberg, a researcher in psychiatry at the Mount Sinai School of Medicine in New York.

While the biological mechanism is not entirely clear, he said, the phenomenon could be due to genetic mutations in sperm-producing cells "associated with advancing age" or changes in genetic imprinting in older men.

(A child has two copies of every gene, a maternal one and a paternal one, and it is believed that the gene's "memory" is more likely to falter in older fathers.)

It is also possible that the increase in autism among offspring of older men may be due to socio-cultural factors, Dr. Reichenberg said.

Autism and related conditions, known under the catch-all term autism spectrum disorders, have become increasingly common in recent years.

The soaring numbers are due to a combination of factors, including greater awareness, changes in diagnostic criteria and, perhaps, an increase in children born with the disorder.

The Autism Society of Canada estimates the incidence rate in this country is one in every 286 births. The condition is about four times more likely in boys than girls.

It is not clear what causes autism spectrum disorders, but there are many theories, including exposure to environmental toxins, diet, a malfunctioning immune system and now paternal age. (There are those who also believe that autism can be caused by a mercury derivative that used to be found in childhood vaccines, but that theory has repeatedly been debunked.)

The new study, published in today's edition of the Archives of General Psychiatry, is based on medical records collected as part of the testing done by the draft board in Israel.

Researchers had access to the medical records of almost 320,000 would-be soldiers who were born in the 1980s. They had detailed information on the age of both parents for 132,000 of them.

A total of 208 of the recruits had a diagnosis of autism spectrum disorder, including 110 for whom there was complete information -- an incidence rate of 8.3 per 10,000.

Dr. Reichenberg and his team found a close association between the father's age and the likelihood of a child having autism.

Of the 110 cases, 34 were in the 15-29 paternal age group, 62 in the 30-39 group, 13 in the 40-49 bracket, and one case with a father over 50. (Only 5 per cent of the recruits were born of fathers over the age of 40.)

Currently, there are no medical treatments for autism. Rather, children are treated with intense cognitive therapies, but this approach is expensive and controversial.

Globe & Mail