Infants and Autism and Education
It may someday (and someday soon) be possible to diagnose autism in infants: Will this be for the better?
I thought about calling this post “Infantile Autism,” as autism used more commonly to be referred to. The name always irked me due to the associations of the word “infantile”—which can simply mean “characteristic of an infant” but also “childish” and, even more, “babyish.” To my ear, “infantile autism” has (rightly or not) associations of someone who is not infant-age, but who acts or is said to have the “mental capacity” of one.
This less-often-now-heard way of referring to “autism” has been on my mind this week after reading a number of articles about how doctors are trying to diagnose autism earlier (as in, in babies; the same article appeared earlier as Doctors look for early autism signs); how a family welcomes the move to speed up the diagnosis of autism; and infant mental health (”Does your baby need a shrink?”). Research currently being undertaken is mentioned: Dr. Fred Volkmar of the Yale Child Study Center is studying the development of basic social skills in infants; Dr. Stephen Porges of the University of Illinois-Chicago is studying whether excessive crying after six months might be a sign of autism, ADD/ADHD, or other “behavior problem”; Dr. Stanley Greenspan of the George Washington University Medical School is described as “launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age five.” Dr. Greenspan’s study of “infant mental health” is not only in regard to autism, but to the development of the brains of infants more generally. An October 24, 2006, article in the Wall Street Journal was entitled Honey, I Shrunk The Kids; Parents Are Sharing Therapy With Their Babies As Field of Infant Mental Health Gains Popularity and described the “growing field” of “infant mental health.” Infants who are displaying “early signs of emotional problems”—due to difficulties in feeding, toileting, sleeping—are being scrutinized by infant mental-health professionals who practice “early childhood family-based therapy” and who look especially at the relationship between infant and caregiver. Autism is listed as something that these professionals, and that the parents of infants, are now on the lookout for.
One of the results, it seems, of increasing autism awareness has been to lower the age of autism diagnosis. The faster a child can be diagnosed—the earlier a parent can know a child has autism—-the sooner a parent can (in a practical sense) start Early Intervention for a child; and can (in a more abstract sense) know that a child has a disability, and start the process of understanding and accepting. If you are a parent of a child who (as you have just discovered) is disabled, Early Intervention can seem like a (excuse the expression) no-brainer, and objections to it puzzling: Why not do everything you can to help your child to learn? to get on the road to talking, if one’s child is non-verbal? to address difficult behaviors—tantrums with several decibel-loud yowling? to give one’s child the best chance possible?
I do think that “Early Intervention,” which my son Charlie received from the time he was just about to turn two years old, has been crucial for him. In the eight years since Charlie was a toddler and the tall and strong boy he is growing up to be, a few days after his 10th birthday, “Early Intervention” has become (here in New Jersey, at least) tantamount to ABA (Applied Behavior Analysis). When Charlie was two, “Early intervention” and ABA were often mentioned in regard to “recovering from autism” and a child “losing” his diagnosis, and these were sometimes made to seem the goal. It is now many years later, and Charlie is quite past the age of “Early Intervention,” and he is still doing ABA at school, and at home, and he is far “behind” his same-aged peers in academic, social, and communication skills and—watching him in his second playdate with an 11-year-old boy—not going to “catch up” anytime soon. Charlie is autistic, very clearly. Was, is, all that ABA then a big bust?—Here is a boy who is going to need special education for his years of schooling and assistance and support throughout his life. Charlie, a casual observer might note, still babbles and hums as much as he says words; still has “infantile” language.
If I could go back in time, I would say to my frantic self eight years ago, focus a little more—maybe a lot more—on the here and now. I would ask myself to really look at Charlie and see where he was and what he needed. Did he really need to make eye contact? Play with his barn toy and blocks only in an “appropriate” manner? Did he need to learn other ways of communicating than arching his back and howling seemingly as long as Alan Ginsberg’s poem? Did he need us to understand how his pacing, or jumping, or staring at one spot of red paint were the only ways he had to calm himself in a world of change and confusion?
We would still have started Charlie in some sort of program (I use the word vaguely on purpose), and one that was highly structured, and that provided lots of physical exercise, sensory stimulation, and music: Over the past eight years, what I have learned is, call the educational/therapeutic program/treatment/setting/what-have-you by whatever letters of the alphabet you will, those three things have been the cornerstone of Charlie’s learning. Being in a structured setting seems to alleviate his anxiety and obsessive-compulsiveness tendencies. The exercise and the sensory stimulation calm and regulate, as does music, and Charlie takes more than a little pleasure and delight in these three things. It is possible to set up ABA—in a school program, in your home—so that it is based most of all on these things, all of which are closely tied into Charlie’s learning style. The goals are not “he will make eye contact” or “he will know ten different categories” or, even, “he will be mainstreamed with his same-age peers,” or “he will read at his grade level.” The goal is to teach Charlie by starting where he is, from his perspetive.
It has taken a good eight years to figure out what works in Charlie’s education and what does not (and we still have much to learn). I would have been glad to know about Charlie’s being autistic as early as might have been possible—via a prenatal genetic test (and such may well be likely some day)—so that I could learn about what to expect as the mother of an autistic child, and what to do. If the age of autism diagnosis is going to be lowered into infancy, it is my hope that, in the future, parents who learn that their yet-unborn baby has autism will hear words of, yes, hope and possibility, rather than dire pronouncements of a devastating disorder and of dreams undone; will hear about all the ways in which their child might be educated, and all the ways in which their child will learn, as Charlie has.
After eight years of “Early Intervention”/ABA/special education, Charlie can barely read or, more cynically, Charlie can’t read. He can recognize about 25 words on flash cards under controlled circumstances on a specially made board. He does not (not yet) recognize these words in other, “generalized,” settings. Charlie has yet to start learning basic arithmetic: He does not recognize all of the numbers that end in zero (20, 30, etc.) consistently. He can write his name semi-legibly; he is not yet able to write his ABC’s on his own. He babbles and hums at least as much as he says words, and not all of those words are clear. He is not mainstreamed in any subject in school. I can say he is one smart cookie and he would test as mentally retarded in the same breath. He is the best athlete in his class of six boys and can run in circles without panting. He can read music (treble and bass clef) and play chords and with both hands.
My big future long-range goals for Charlie as he approaches middle school and high school: Running (at least practicing) with the track team. Playing an instrument in the band or orchestra. (Does it sound like I am thinking about some kind of future mainstreaming possibilities, in the areas in which Charlie is more than able and accomplished?)
An autism diagnosis is not The End. It is the beginning of a whole new story.
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POSTED IN: Baby, Diagnosis, Education, Genetics, Health, Language, Psychiatry
10 opinions for Infants and Autism and Education
Laura Cottington
May 18, 2007 at 4:12 am
Kristina,
I completely agree with you and this post. And especially the last sentence as you well know. :)
I get excited though, thinking of diagnosing infants. What I mean is, I had the fortune of being a part of the infant brain research (no, they did not use my brain, but I was able to hear first hand from the researchers) in the early nineties revealing the importance of birth to three early interventions. At the time I trained under Greenspan and my favorite ped. Dr. T Berry Brazelton for some months in DC, as well as working with Dr. Alice Honig from Syracuse. I was an Early Intervention Specialist with the Early Head Start Programs which targets at-risk (I hate those words in describing families) children birth to three.
I just think to my own experience being a mother of an autistic child and the supports I did have through family and education, and then I think of the population I served, and how challenging it may be for a teen mom with no supports and little understanding of child development. That if there was an ADOS or something that doctors could use for even earlier detection, that some of those children who would typically be at risk for delays anyway, would have an earlier chance to learn modes of communication and other aides (ABA, Floortime, Speech, OT, PT, etc..) that would make their journey in life easier.
I completely agree with you on the idea of knowing ahead of time to make the best plans for our children as we prepared to birth them, to prepare ourselves on being and doing the best for them and who they are, and all on their own time and readiness. I love your view and the love that flows when you talk of Charlie. I am excited to hear of any mainstreaming possibilities you may have with him. The world needs a Charlie in every classroom, gym, orchestra or track team.
Joeymom
May 18, 2007 at 9:56 am
I still think the individualization of the program is absolutely necessary- as you have done for Charlie, and I have for Joey. When I read about early identification of kids with disabilities- any disability- my first question is, “How will this help? What will be done differently?”
Early identification may help parents get started researching sooner. It may help in getting them over the shock of having a child with a disability, so they can move on to accepting the child and helping the child sooner. As infants, shouldn’t you be paying attention to the cues of the child, disabled or not? Shouldn’t you be introducing communication systems?
Would we have been able to recognize autism in Joey any sooner? Probably not. He was hitting milestones, he was happy, he made eye contact, he smiled and giggled with us. The signs of his autism were all outside the radar; they were oddities in behavior, eccentricities of preference. Joey did not cry much, unless he was very, very upset an in serious need- we still jump when either of our guys cry, even though Andy cried a lot. Joey threw his toys or spun them unstead of playing with them, but untilwe had Andy, we had no idea that very young child just naturally played with toys.
Early ID just to have an early ID isn’t very useful. It becomes the same problem we have with genetic and prenatal testing- why is it being done? What will this information actually be useful for?
Julie
May 18, 2007 at 10:58 am
I am not sure what the intent is behind testing. I think it may have been helpful in Rebekah’s case only because I was saying that there was a problem for years before we finally were able to have her tested. She was hitting her milestones and it was behavioral and social issues that were the problem finding out sooner may have helped us get her help before she was 5. I do think that you need to be careful not to diagnose just to lump everyone together, although there are similarities there are also a lot of differences with each child on the spectrum. Ulitmitly I think it could help identify a potential problem and help get the child the help that they need to be successful sooner and that is good.
livsparents
May 18, 2007 at 12:20 pm
But Charlie CAN read…the language of MUSIC! That’s great and telling of while communication may be an issue throughout his life, expression might just develop into something more than expected…
Niksmom
May 18, 2007 at 4:17 pm
I agree with Joeymom’s comment about knowing WHY and HOW the info would be used. I don’t know how it is in other areas but, when Nik was diagnosed, the doctors never gave us ANY contact information for our local parent resource/traing center or ASA chapter or a social worker to contact…NOTHING. Now, granted, that **may** have been b/c we were already connected into the 0-3 program in our area (due to Nik’s other disabilities). But, I kind of doubt it. Frankly, the diagnosing doc wasn’t much help at all beyond saying Nik should be in some sort of structured program for kids on the spectrum. DUH. No clue as to how to get it—Nik had already transitioned to school and they (school) thought we were off-base. Got all the “medical model v. educational model” crap. That’s finally changing (we have Nik’s ADOS on Monday). Still, I cannot help but wonder what gains Nik might have made over the last school year if he had had a more structured environment, more consistency of sensory input, etc.
Kristina Chew, PhD
May 18, 2007 at 5:11 pm
Charlie was in daycare when he was about 16-23 months old. He was clearly different from the other children and I think that is the main reason that he was diagnosed as young as he was—-had he been home, I think we would have taken the “wait and see” approach, and ended up with a lot of anxiety and wishes that we had found out earlier what was going on through all of his struggling (and there was a lot of it!).
AJ
May 19, 2007 at 12:15 am
JP was into his kindergarten year before we knew about his Asperger’s. He had been “kicked out” of three pre-schools prior to going into public school. His kindergarten teacher, who had been there for way too long, told us she was convinced he was ADHD (a much too-used excuse), but we did know something was different. He does, in fact, have that co-morbid diagnosis.
Eleanor was, in fact, much easier to identify. She was born two weeks before my grandson (my stepdaughter’s son) and, at around 18 months, HE was talking like a big dog and she was not. That was probably our first big clue. She made eye contact, but there was no co-play. At 18 months, she was diagnosed with “global developmental delay” by ECI (which I only was able to find out about by a friend of mine who was a school psychologist). After 8 months of weekly in-home therapy, she went into our Pre-School Program for Children with Disabilities. Her progress has been incredible. She’ll continue in the PPCD-K program this next year, and, probably, go back to our home campus the year after, into the Developmental Program. When I think of what she has accomplished in the last three years….how she crept out from behind the couch at 18 months to now be in a classroom with four others like her, calling them by name, participating, playing, interacting…..I think she’s the poster child for Early Intervention. Well, let me re-phrase that….she’s OUR poster child. What works for Ely doesn’t necessarily work for other kids with autism. They are each unto their own. Bless ‘em for that.
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