New Study on Preventing Autism in Siblings
January 3, 2008 by Kristina Chew, PhD
Filed under Health
UW launches study to treat infants without symptoms, reports the January 2nd Seattle Post-Intelligencer in an article by Paul Nyhan:
The University of Washington launched one of the nation’s first studies on preventing autism in infants Wednesday and will spend the next four years exploring the benefit of intensive and early therapy on the mysterious disorder.
The university’s Autism Center is now looking for 200 local families to join the study of autism, which is diagnosed in 1 out of 150 children, according to the latest study by the federal Centers for Disease Control and Prevention.
The study is unusual because autism research and treatment has typically focused on treating or reversing but not preventing the neurological disorder. Autism often emerges when a child is around 2 years old.
“Other research has shown that the earlier the intervention, the better the outcome in treating children with autism. One of our goals is to be able to identify autism as early as possible before obvious symptoms show up so we can intervene while the connections in a child’s brain are still plastic,” Annette Estes, associate director of the Autism Center, said in a statement.
The hope is based on the fact that UW clinicians have generally been more successful the earlier they have treated children.
“This is the question we are trying to answer: ‘Can we do this?’ ” Estes said in an interview. “It is a bold question to try to ask.”
……The study will focus on newborns who have older siblings on the autism spectrum, since those babies are far more likely to develop the disorder. One out of 20 infants with an older brother or sister with autism will also fall on the spectrum, according to the university.”I think this is the only study I am aware of … to really identify autism this early, six months or younger,” said Estes, who will lead clinical assessments.
You can read a more extensive summary of the study here.
I’m not sure if “can autism be prevented?” is the right question to ask. The word presumes a lot about what early (very early, as we are talking about babies here) intervention can and should do; teaching a child to make eye contact and interact socially with others does not mean they are no longer autistic: What about sensory issues? What about different ways of seeing and perceiving the world, perhaps through synesthesia? (This last link is to an interview with psychology professor Simon Baron-Cohen, in which he also discusses a study involving babies who were some 24 hours old.) The particular techniques that will be used to “prevent” autism involve training mothers “to engage their infants in eye contact ……. each mother and child will be videotaped interacting once a week for nine weeks.” (That is, the treatments are educational rather than biomedical; such biomedical treatments are often referred to when one hears that autism is treatable and that it is reversible.) As Lisa Jo Rudy at About.com notes that “simply connecting infants more fully to their mothers (and only their mothers) through eye gaze and other techniques” suggests that “autism – with all its complex uniquenesses – is really just a lack of connection with mom” and senses echoes of the refrigerator mother theory of autism aetiology.
The UW study is specifically looking for infant siblings of autistic children as “about one of every 20 infants who have an older sibling with autism will develop the disorder” (according to Newswise Medical News). In comments on a recent post here on which we are not; Emily has also posted on this), we would definitely wonder if another child of ours would also, like Charlie, have autism, and we would prefer to know sooner, but not to try to “get the autism out” of another child—not to “prevent autism,” but to know “what he has” and to acknowledge his disability and difference (as I’m quoted in the article“>article about). And, too, to know that the reasons that Charlie had various delays—in his gross motor development, his play, and his communication— was not because we were doing “something wrong” as parents.
The Kennedy Krieger Institute is also conducting research on detecting autism in the younger siblings of autistic children.
It might help kids with milder cases of autism, especially in regards to social interactions and motor skills, but how will they prevent apraxia, anxiety, etc.
I’ll be interested in seeing what this study finds, and the details therein, as it goes along. On reflection, there were things that we might have started sooner or done differently if we had had the knowledge before some symptoms became well established. I don’t think that I caused the autism, but certainly through our experience with educational interventions we have learned that there are specific (and not necessarily intuitive) skills we have learned that have proved to be extremely useful in more successful interactions and progress in many areas. More information.
I was and am grateful that Charlie was diagnosed at a young age and I am more than certain that he would have been diagnosed even younger today. At 10 months old, he was not walking, or standing, or trying to move around too much—-though he did have some imitation skills: Jim used to raise his hand over his head and Charlie would do the same. Tellingly, that was the only imitative skill that Charlie had. If I raised my arm, he was less likely to raise his; if Jim raised both arms, Charlie still raised one.
I have a son with asthma. Colds could come close to killing the child when he was a baby. Now he sees an allergist regularly and is on about seven different medications.
When we changed primary care physicians, the doctor thought the child DID NOT HAVE asthma… why? Because he saw no symptoms. I told him that our allergist does an *excellent* job, and we follow *all* his advice, and I’m thankful for the medicines we have.
I think we all know he still has asthma, though. And a breakthrough for autism may result in fewer children with autism diagnosed if it prevents the symptoms. I’m ok with that so long as we all understand and have compassion for those still left struggling with autism in their lives, the ones for whom “prevention” or even “cure” came too late.
Wouldn’t it be hilarious if there were a vaccine against autism, but it had thimerosol in it?? OK, nevermind. LOL
“Wouldn’t it be hilarious if there were a vaccine against autism, but it had thimerosol in it?? OK, nevermind. LOL”
hehehehe. Very nice!
Frankly this is suspicious in the extreme.
I think I will treat all new borns for malaria, well you never know do you never mind the treatment may be toxic in itself?
Look at the logic or lack of it in this.
We will treat a research cohort, and if they don’t turn out autistic, we were successful weren’t we.
I have manufactured a very efficient elephant repellant.
Well have you seen any elephants in Coventry recently?
My son became “autistically human” immediately following 4 immunizations given to him.
I share some of Larry’s suspicion. When you take a large group of very young children with “autistic like tendencies”, many of those will not show any evidence of autism later, though they receive no treatment.
The only way to show that any “interventions” are working is to have the study properly controlled (with a group that is identified as having tendencies, but not receiving any interventions). I really don’t think that doing so would be ethical.
Joe
I agree with Joe!
On another related issue – the study seems to define autism ONLY as a social disorder (based on the notion that it can be “prevented” simply through social training).
Does anyone know whether there will be changes to the diagnostic criteria to include physiological symptoms often associated with autism?
Also wondering if anyone knows of any actual studies comparing earlier and later intervention with similar kids to see if the “early intervention at all cost” approach actually holds any water?
Let me know!
Lisa (autism.about.com)
As Lisa Jo Rudy at About.com notes that “simply connecting infants more fully to their mothers (and only their mothers) through eye gaze and other techniques” suggests that “autism – with all its complex uniquenesses – is really just a lack of connection with mom” and senses echoes of the refrigerator mother theory of autism aetiology.
Very sad that this is on such a respected site; however, it was encouraging that she came by and asked questions.
I have often wondered how much better my son would have been with early detection and intervention. And Lord knows I tried, but he was always “within normal parameters.” Which is good, of course, but I wonder if things could have been better.
He’s 11yo now.
I similarly get frustrated when autism, something I know to be far more extensive and noteworthy than the symptoms would ever tell you, is reduced to some of the most basic of those symptoms. It, to me, seems kind of silly, and creating a narrow archetype for what is considered a pervasive condition.
Cliff
I don’t have a lot of time…but this study is a loser. I know from personal experience. Forcing eye contact is not going to work, let’s just say because of the “holding therapy” that I accidentally heard of the first time I “got out of the house” when Ben was a baby. It was a pre-school seminar. I was a pre-school teacher.
Ben was about 4 months old, and I was sure he wasn’t bonding because he never looked at me.The doctor told me I was crazy because Ben clung to me physically…the way he has always bonded.After hearing a talk on the miraculous (?) “holding therapy” I tried it with Ben. It amounts to child abuse, my husband made me STOP.
I had no eye contact with Ben, until he freely gave it to me at 2.5 years.
I really, really, really don’t trust it. Somebody is using their mind instead of their heart.
@chrisd—-hope the new year has gotten off to a good start for him—
The NY Times Well blog has a post on the study. The title emphasizes the the potentially remediating effect of “social training” Hoping coos and eye contact can thwart autism:
How might one feel if one is in the group that does not receiving coaching in the “unique intervention,” and one’s child later receives an autism diagnosis? I’m wondering what is meant by “lilting” (recalling my tendency than and still to use particular intonations in addressing Charlie). The NYTimes also notes:
I’m wondering at that phrase “no options”???? If I were expecting, and detected delays in a second child such as Charlie had, I know who to call……
Just wanted to point out that Lisa, in her about.com article, was criticizing the study for seeming to support the “refrigerator mother” theory — she was not supporting this theory herself.
I find this study interesting because I have a 4.5 year old autistic son, and a daughter on the way (due in May). Of course I have thought about what I would do differently with our forthcoming child – and more eye contact was one of the things I’m considering. Not to “cure” but more as a way to gauge the baby’s response, to try to pick up signs of autism earlier than I did with my son. This is a very tough issue, because although I believe intellectually that autism is a neurological issue, there are still times when I think, “If I only I had done ‘x’ differently…” Self-blame is a waste of time, counterproductive — but oh-so-easy to slide into on those difficult days.
Prevention of autism is a hot topic right now among mothers, even those with no autistic kids. I know 3 mothers personally who went GFCF during their pregnancies and while nursing because other mothers on an asd site told them it was the best way to reduce the risk. They are also avoiding tv like the plague and forcing eye contact very early. They try to do a version of Floortime every day and never leave their babies “unengaged.”
I think that the idea that autism can be prevented has caught on with many people, perhaps the study is in response to that.
I agree with Larry and Club166 about some kids showing asd tendencies early on but growing out of them. I have one of those kids–he was red flags all over the place at one point, but now he appears pretty much typical. He got some PT for his hypotonia and I did lots of structured play with him at home, but I find that I truly cannot say whether or not it made a difference in the disappearance of his issues. It made our bond very, very strong, but I cannot say that he was going down a path toward asd and I veered him off of it. How could anyone tell?
I imagine that he would have been judged as “cured” or “prevented” in a study like this.
I saw Dr. Greenspan with my child and I did find that he edged waaaaay too close to Bettelheim for my taste. My take-away message from him was something like: If you do these things and he gets better, you have done the bare minimum that any good mother would do. If he still ends up with asd, you didn’t do enough.
Sorry to ramble on… I am a little intimidated commenting on here.
I’m wondering what Human Research Ethics Committee gave the nod of approval to this.
Rose, I’m with you (and everyone else). Our baby shows many signs of being on the spectrum, and I’m so much more knowledgeable now that I do all kinds of things, Floortime-type stuff, to encourage him to complete circles of communication, make at least fleeting eye contact, etc. I don’t expect that it will be a “cure” for him, and that’s not my goal. I’m just hoping that he might become a bit more comfortable with these kinds of interactions. That doesn’t mean I expect his motor and speech delays, his sensory issues, or his other non-socially related issues suddenly to resolve.
Anyone else sick of reading these ridiculous and telegraphic descriptions of autism? One I read yesterday just about made me tear my hair out, something like, “A disorder in which the affected person does not feel or express emotion or understand it in others.” Grrrrrrrrrrrr. Bam bam bam (sound of head banging on desk). But it’s so common to see exactly that kind of description. It’s so…1970s of them.
@grenouille, your comment says a lot!
Charlie started intensive ABA when he was 2 years old and they did not insist on eye contact. I am not sure why; it developed over time.
I got the same message from reading Dr. Greenspan’s Engaging Autism and his other books—-I posted on Greenspan on how autism develops.
Thanks for writing about all of this—-
The idea of autism as a “lack of bonding” is such a widespread myth, it actually contributed to my not realizing my son was autistic earlier, because he was such an affectionate child with many different people. He was very clingy and lovey-dovey with his parents and relatives and daycare people from the beginning, and his eye contact only started to decrease at about 18 months old, when he started to perseverate on some repetitive play and on Wiggles videos.
Anyway, as previous posters said, autism is very complex and appears differently in each person. All I know is that in my son’s case, there was NO problem with bonding. However, I do think that preparing for the possibility that your second child may be also autistic, and changing a bit the way you talk, play and communicate with this infant/toddler is a good idea, because it may boost this child’s social and language skills. It won’t “prevent autism”, but it may lessen the communication deficits.
In regards to Floortime/Greenspan, I don’t think he is blaming parents, but rather giving them a new tool to better relate to their autistic child through play, by following the kid’s lead even when their play might seem aimless, weird or inappropriate. The key is to keep the child’s joint attention for as long as possible. This is an excellent exercise that will improve the social skills of the child and also the quality of interactions for the whole family.
Charlie was very affectionate too—-definitely attached to us: “Clingy” and “lovey dovey” also describe him.
Iam a PG student in Nursing, interested to know further about the relevant, real problems faced by children with autism and their parents.
Please provide me with your valuable comments.
Leila said:
In regards to Floortime/Greenspan, I don’t think he is blaming parents, but rather giving them a new tool to better relate to their autistic child through play, by following the kid’s lead even when their play might seem aimless, weird or inappropriate.
I would have said the same thing before meeting the man himself. The two appointments we had with him were shocking to us. I loved his books before (and still use them for reference) but I find that I cannot see them as I used to.
It was heartbreaking for me when he said that our older child, who is extremely verbal and socially sparkling, had turned out that way “despite her parents.” That statement is not open to much interpretation and I cried for days afterwards.
I absolutely think that Floortime is a good idea for pretty much every parent. It’s generally fun and makes you a more engaged parent. I agree that it can lessen communication defecits.
I just wish I had stuck to the books.
Greenspan’s books are definitely full of ideas for playing/engaging with a child—-but his chapters on “what causes autism” troubled me.
@grenouille, I would have felt queasy after hearing that statement. And then some.
@vidya, thank you for writing here—I’ve written out some specific problems we’ve faced under Teaching Strategies. I will write more on this after I think on it……anyone else, please add!
Sounds like Greenspan himself might suffer from some deficits in intraspecies bonding and interaction.
grenouille said:
“…It was heartbreaking for me when he” (Dr. Greenspan) “said that our older child, who is extremely verbal and socially sparkling, had turned out that way “despite her parents…”
Ouch and yikes. Insensitive with some assumptions of omnipotence. I can understand wanting to have stayed with the books.
My youngest brother got just about as much eye-contact and people speaking to him intensively and older siblings mimicking all and sundry all day long, as any baby could stand, yet ironically he was the only one of us 3 (2 diagnosed, one suspected autistic) with a speech delay.
He did indeed learn to do all kinds of things faster than us (eating with knife and fork, for instance) because he had older siblings and my mom did indeed do all kinds of things differently with him since he was her third child and you learn some things from raising the fist two. But it was not the things they seem to want children to learn early on (and call it preventing autism).
I got a similar sense from Greenspan. In essence – “well, if you choose not to dedicate 10 hours a day to floortime – I guess that’s your choice… But don’t be surprised if your child doesn’t thrive!”
Imagine any other kind of therapist telling his patients “well, if you can’t dedicate 10 hours a day to working with your child on his illness, I guess that’s your choice…” It’s absolutely insane: the assumption is that mom can and should suddenly – with no training or particular talent – become a more-than-fulltime therapist to her child!
Oh yeah – and of course she should quit her career, dump her home (no money), ignore her husband and other kids, forget about her home, nutrition for the family… because Dr. G. said so!
Burns me up. You can pretty much guess that Dr. G’s wife is a fulltime homemaker without any other “therapy” obligations!! (NB – one of his sons, I forget his name, works with him – a real cutie pie, too!)
Oh yea – and I also LOVE floortime, did it for years, attended two conferences, read all the books… guess you really have to separate out the man from the product!
Lisa
autism.about.com
I’ve never met Dr. Greenspan or seen him in person, just read the books—I really did not know what to make of a lot of his comments about parents. In Engaging Autism he was often rather specific about “floortime for parents—-as noted here.
Lisa said,
“Imagine any other kind of therapist telling his patients “well, if you can’t dedicate 10 hours a day to working with your child on his illness”
Actually I can. It was a while back, but I attended a PRT workshop and Rob Koegel said something about 70 hours a week. Our district personnel blanched–they had thought that they could be effective interveners on an hour a day.
I think the point was that it was a 24/7=lifestyle alteration.
Kristina,
Thanks for pointing out the old post.
Someone there suggested that folks were unjustifiably defensive…I don’t know ’bout that. We have 2 kids who were brought up the same/similarly in infancy, and only one has autism. From what I know, that is not a particularly unique situation.
To bring it back to the very early diagnosis and therapy question–to me, until verifiable diagnostic criteria/screening is established for infants/very young toddlers–leveling blame at parents for not being diagnosticians and expert therapists seems to be unreasonable and can only be ad hoc.
Regan,
You are correct in your point about the 24/7 lifestyle alteration related to PRT. It’s different in that you try to capture “teachable moments” in your everyday life as opposed to getting down on the floor 10 hours a day. Dr. Chew has given some great examples of tihs recently talking about how Charlie has helped with cooking and putting away groceries, etc. In their PRT methods, the Koegels really try to take into consideraiton that we all have crazy lives, other children, etc. I highly recommend Dr. Koegel’s book Overcoming Autism, which discusses the practicalities of PRT. It’s been very helpful for me in dealing with helping Jack here at home while we still function as a happy family…
For more info about PRT you can visit their web site at http://education.ucsb.edu/autism/help.html
Wow .. I sound like an infomercial for PRT!