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I believe that Charlie was autistic at birth.
Whether or not a child is born with or develops autism in her or his early years is not the main focus of a special issue of the Journal of Autism and Developmental Disorders (January 2007) on “The Very Early Autism Phenotype,” but the question hovers over each of the articles. The journal’s entire contents (17 articles) can be accessed online as PDF files. An editorial preface by Nurit Yirmiya and Sally Ozonoff explains the historical roots of the topic and summarizes the papers, which focus on the following:
- Antecedents and very early signs of autism spectrum disorders (with a focus on the infant siblings of autistic children and on the youngest children diagnosed with ASD and their parents)
- Developmental milestones and trajectories of young siblings of children with ASD and their association with the broad autism phenotype (researchers looked at infant siblings of children with ASD in regard to such factors as affective displays, joint attention, and non-verbal communication skills)
- Methodological issues (each of the 14 studies in the special issue followed one of three methodological types: prospective studies of high risk samples, prospective follow-along studies of very young children just diagnosed with autism, and retrospective investigations using parents’ reports of the early characteristics of children with autism)
- Study of the broad autism phenotype (BAP) in infants (it is noted that previous studies reports features of the BAP in 15-45% of family members of autistic persons)
- Age of diagnosis (it is noted that detecting autism before a child is 2 years old “may be particularly difficult for prospective samples” (8); here the researchers weigh the ethics of early diagnosis in considering the usefulness of diagnosing a child at the earliest possible age with the inducement of “unnecessary worries, stress and anxiety” (9) in a family who already has an autistic child)
The question raised by the studies in this special issue of the Journal of Autism and Developmental Disorders that particularly intrigues me is, indeed, the question of whether or not autism is, or is not, “always present (or at least clinically evident) ‘at birth’ as once thought” (9). Here the authors raise the question of causation and suggest that
The magnitude of the genetic predisposition, as well as that of the responsiveness to environmental influences, may be associated with various variables such as the number of children already diagnosed with ASD in the family, gender of the child (and, where applicable, also of the older sibling with autism), level of functioning, and parent-child relations. (9)
In contrast to Leo Kanner‘s assertion in his 1943 study that autism is present “‘from the very beginning of life’”), Yirmiya and Ozonoff note that the papers in this issue of Journal of Autism and Developmental Disorders “contest that claim,” as signs of autism present in a child “‘far earlier than the diagnosis is currently made, yet they emerge over time and are not always evident even to the expert clinical eye before 12 months.” Is it that some children are born autistic (as is the case, I think, with my son Charlie, while others are “at risk” of developing it and may or may not, depending on circumstances (and I am not quite sure what is meant by the role of “parent-child relations” as one of the factors impinging on a child potentially developing autism)?
For myself, I would have been glad to have known even earlier than I did. Charlie was diagnosed when he was just over 2 years old in 1999, and we knew that “something was not right” when he was as young as 10 months old and had some gross motor delays. The pediatrician blamed me for catering too much to Charlie as the reason that he did not crawl, could barely sit up and could not pull himself up from a sitting to a standing position. “Let me get this right. This is what happens: He cries and you run and pick him up?” she asked me.
“Well, yes,” I said. What else was I supposed to do as the mother of my child?
It would be many months before Charlie could walk—15 months, after much encouragement and creativity on Jim’s and my part and some bad falls: Charlie had long legs like a grasshopper and a very large head, which he fell straight down on (he did not put out his hands to break his fall—this was a skill he only learned when he was 6 or 7 years old). Charlie’s daycare teachers thought it was autism and tried to communicate this at a meeting with Jim and me when he was 18 months and not talking (and exhibiting only repetitive play with the CD player). Jim took a deep breath and I proceeded to be in denial for three more months, during which I dropped off an increasingly upset Charlie at daycare and went to 9am Latin class with red eyes day after day until I finally called the St. Paul School District and had Charlie evaluated.
I am hopeful for the development of the “very early autism phenotype” such as the papers in the January 2007 issue of the Journal of Autism and Developmental Disorders describe. For yes, it would have helped if I could have known then that an autism diagnosis, especially one given to a young child, is no death sentence, but is the first step towards the beginning of a good life together with my son Charlie.
1256 days ago
[...] methods currently being developed to diagnose autism in very young (1 year and under) children involve studying babies’ eye movements and eye tracking; looking [...]
1561 days ago
[...] able to understand more, do more, help us, try to be independent. For us, it was good to get an early diagnosis and start learning about autism and about how best to help Charlie, and to understand how being the [...]
Hi Pcoons, one thing that I (in retrospect) have realized that my son Charlie did not at all have is what is called “joint attention.” This is when a child sees something—a crumb on a table, a toy, a car in the street—-and seeks to get your attention, to notice what she or he has noticed. My son did not have show “joint attention,” but focus (and fixate, even) on one thing or a few toys (a set of stacking cups) for long periods of time. As he got bigger, he would get very upset if abruptly removed from what he was doing.
How does your nephew play with toys?
Hope this is helpful.
Hi Pcoons –
I know several autistic children who are entranced by fans.
Does your nephew point to anything? Does he look you, or his parents in the eye? Will he ask for help? (i.e., put some cheerios in a jar he cannot open, will he bring it to someone to get to the contents?) What about pretend play; i.e., making the car go vroom, dolls, stuff like that? Does he do that? Does he share experiences? If he finds something funny, will he look to other people to see if they are having the same experience? If you point to something, will he look?
If you would answer no to many or most of these questions, it wouldn’t hurt to get him evaluated.
As far as skin problems, my son had excema until we removed gluten from his diet. I’ll get flamed for saying so, but the distinction was simple to make. Ask your sister to remove wheat from his diet for two weeks and see if the excema clears up.
Take care.
- pD
What things would you look for as a constellation of symptoms for ultra-early diagnosis? My nephew loves fans (which struck me as wierd for some reason) and they taught him a sign for it (palm going in a circle). My sister-in-law had a physically difficult pregnancy. My nephew has some skin problems and had problems with reflux. He did not latch on well and she abandoned breast feeding early but pumped a long time. He seems animated and sweet, engaged and has a sense of humor. I don’t see him often enough to know his quirks but something has me on alert. I have 2 girls (8,15) so I consider myself an experienced mom. My nephew is 14 months old – should we watch more for regression or are there symptoms and conditions that accompany autism spectrum disorders? Opinions would be valued… particularly if there is some use in early diagnosis and treatment, I would want to alert them – but not unneccessarily. There must be something that is making my radar go off… you know what I mean?
1833 days ago
[...] the time of his second birthday, and my sense that now—due to increased understanding of the very early autism phenotype—-he might well have been diagnosed in his first [...]
1841 days ago
[...] so soon after they are born—-while children are being diagnosed with autism at far younger ages, we have yet to hear of autism in a newborn. ASD, Aspergers, autism, Brain, chemicals, children, [...]
1863 days ago
[...] have recently heard a lot about the very early diagnosis of autism; one sign of “developmental abnormality” is (as yesterday’s [...]
1864 days ago
[...] Charlie’s case, I would have appreciated a very early diagnosis of autism. Charlie started to sleep through the night at the age of two months and ate his first [...]
1890 days ago
[...] You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site. Related Posts: Autism Diagnosis in Children Two Years and UnderEarlyDiagnosis and Autism’s Unpredictable TrajectoryIn Memoriam Angellika Arndt, 7 years oldAdvocating for Autism: Why this blogAutism on NPR [...]
Kristina, I love your blog(s). It’s reassuring to hear from other parents in the trenches, especially those with older kids.
Anyway, I’d have to say that Bobby (now 3.5, mild autism, non-verbal, seriously sensory-seeking), has shown signs since at least 10 months old. He was spot-on or ahead of his milestones, especially the physical ones, until the day he started walking at 10 months and 1 day. At that point, it’s like all his other development stopped dead. He lost the dada and mama that he’s acquired, made no more verbalization except crying, and he started stimming like mad. Never developed pretend play and never had joint attention, either. I remember saying many times that except for me, my mom, a good family friend, and my husband, people were furniture for Bobby. In retrospect, that’s a very revealing statement, no? He just wanted to run around and bounce off people and whatever objects he could crash into. As long as you let him run, slam doors, and spin coasters, he was a very happy, disgustingly-healthy kid. Remove those options, and whoa! things got ugly fast.
To tag one more thing onto these other comments, Bobby was full-term and a surprise c-section. Delivery started normally with regular labor, and then Bobby “decided” at the last minute not to come the rest of the way out, stopping at 9.75 cm. Once the doc realized that Bobby was face-up, that was the end of normal(!) labor, and away to the surgery suite we went. Everything registered well after delivery and he nursed like a champ. Of course, anything physical has always been his forte. Maybe that’s why he didn’t sleep through the night until he was about a year old!
I came across a discussion in _A Parent’s Guide to Asperger Syndrome and High Functioning Autism_ that I think is relevant to you conversation here. Specifically, Sally Ozonoff, Geraldine Dawson, and James McPartland argue:
“It has also been suggested that such complications [during pregnancy and delivery] are not causes of autism but consequences of it. This interesting hypothesis speculates that obstetric problems may occur in pregnancies in which something has already gone wrong with fetal development. [...] Some scientists have wondered if a similar scenario could account for the slightly elevated rate of prenatal and birth difficulties seen in individuals with autism spectrum disorders. [...] In other words, the complications follow, rather than lead to, the autism spectrum disorder” (71).
(Unfortunately, the authors do not provide the citations for these scientists or studies. A bibliography is provided at the back of the book; however, one would have to sort through the listings, in theory, to find the appropriate sources.)
1899 days ago
[...] When a parent notes that a toddler (even an infant) does not seem to be meeting developmental milestones, some kind of delays—developmental, gross motor, speech—may be suspected and the child brought to a doctor for an evaluation. Dr. Eileen Costello, a children’s physician at the Boston University School of Medicine, co-author of Quirky Kids (2003), and mother of a son with Asperger’s Syndrome, notes this interesting “tool” for diagnosing autism: Instead of checking for rashes and stiff necks, she now finds herself looking out for entirely different symptoms, including an infant’s ultra-sensitivity to his surroundings, she said. [...]
1906 days ago
[...] It has not even been two full months into 2007 (a year of great significance for me as, come May 15th, my son Charlie will be 10 years old) and—in the wake of new research studies—some new paths to understanding autism are emerging. On February 8th, the CDC announced new figures for the prevalence rate of autism in the US, which is now 1 in 150. While this was not news to many—a prevalence rate of 1 in 100 has been reported in such places as the UK and in Sweden—the widely publicized lower figure—and in particular New Jersey’s rate of 1 in 94—was a catalyst for many asking “why” and “what do we do” (in New Jersey, six autism bills are being presented to the State Assembly this week). It is possible that autism can be diagnosed even in very young children and that there is a “very early autism phenotype,” according to research in the January 2007 Journal of Autism and Developmental Disorders; early autism diagnosis was also the subject of 60 minutes last night (you can watch the video on the 60 minutes website). Yesterday saw the publication in Nature Genetics of a new study on the genetic causes of autism: As much as 90% of autism may have a genetic basis. [...]
I said yes, he is! But we’re kind of a Martian family. I’d say that what I noticed about my son as a baby was that he was intense. He studied things very carefully before picking them up and playing with them. Also, he did things like lining things up, spinning the wheels on toy cars, etc., that in retrospect are autistic baby things, but I didn’t know it then. I didn’t think it was odd.
1908 days ago
[...] The one reason that I am writing this, right here, right now, is because of Charlie. Before Charlie—before his diagnosis of autism, before we started to wonder what is going on, before I felt what I thought might be his tiny fist or foot moving inside me—before all that, I did not know what autism was. I had barely heard of the word and, if I did hear of “autism,” it was lumped together in my head with mental retardation and (I wince at the memory) the ancient Greek word that is the etymological root of “autism,” autos (which means (1) self, (2) same, (3) he, she, it—-see What is autism?). [...]
What did you say in response?
“Can’t quite put my finger on it, or on how to describe it, yet.”
Somebody at work said my baby was a Martian. That kind of describes it.
Great question, Shannon—one thought I have would be that it’s the occurence of some of the signs mentioned above in concert with other factors. I was a late walker myself……Charlie never had trouble sleeping (he slept through the night at 2 months) or nursing. He did not roll over until he was 9 months old. He did not have (I realize in retrospect) joint attention.
I was a first-time mother and yet……there was “something about Charlie” that was just a bit different. Can’t quite put my finger on it, or on how to describe it, yet.
These posts underscore the difficulty of early diagnosis. Every early sign of autism listed above (bottom-scooting instead of crawling, late walking, wanting to be held, hating tummy-time, poor sleeping, nursing troubles) are things done by neurotypical children all the time – things my friends would gripe about in playgroup. My question, then, is are these REALLY the early signs of autism? Can behaviors shared by many neurotypical children be used to make a case for autism? Is it just a question of quantity or degrees?