Development and Regression: Kennedy Krieger research and Donna Williams interviews Amanda Baggs
July 3, 2007 by Kristina Chew, PhD
Filed under Health
A July 2nd USA Today story reports on a study conducted by researchers at the Kennedy Krieger Institute in Baltimore on the early detection of autism. While some children can be identified as having autism at the age of 14 months, others seems to develop normally and only present with symptoms of autism when they are older. When I read this, my first thought is, Charlie could have been diagnosed at 14 months, if not younger.
Scientists know that “we can reliably diagnose autism at age 2, but only by real experts,” [lead author Rebecca] Landa says. “What’s different about this is we can show that we can stretch that down close to the first birthday, but the caveat is we can’t do it for all children.”
The study involved 107 children who were considered at high risk for autism because they had a sibling with the disorder and 18 low-risk children who had no family history of autism.
Behavior differences in those with and without ASD at 14 months can be seen in videos that show toddlers interacting with a researcher. In one, a normally developing boy reacts happily when given a toy penguin, gives it to the researcher and laughs when she hands it back. “He integrates looking, giving and smiling,” Landa says. “That is what I call the package, and the package is very seldom seen at 14 months of age in kids who have ASD.”
By contrast, a boy later diagnosed with autism shows only mild interest when a researcher uses a blanket to play peek-a-boo. He focuses briefly on the blanket, but he doesn’t interact with the researcher and soon loses interest.
Children in the “late-diagnosis group” behave at 14 months old very much like the children who didn’t end up with autism, Landa says. But from 14 to 24 months of age, there was a progressive decline in social development. “Whatever is happening, it’s affecting brain development in a way we can observe behaviorally,” she says. “We can’t watch the neurons making connections, but we can watch a child’s smile disappear.
Charlie’s gross motor development during his first year was delayed: He rolled over at nine months and never crawled, but scooted around with one leg tucked under the other and his hands propelling him (he was quite fast, too). He looked, he gave, he smiled, but not in the “package” that Landa describes. Or did Charlie seem to have some skills—four sounds that I liked to think were words which he lost; when he was two years old, he no longer said those sounds. Charlie did imitate a little: Jim would raise one hand up and Charlie would do the same, but when Jim raised both, Charlie kept raising one arm. After nursing (which he took to easily), Charlie used to throw himself back into a perfect arch. I remember the strain on my arm as I held a bent-over baby, eyes shut, features relaxed: I would move my arm and Charlie would still be in that arch position.
As Charlie has gotten older, I have been more and more thinking that to think of “development” as some kind of set narrative of skills that most children more or less acquire—-sitting, crawling, standing, talking, walking—-can be misleading. Maybe some textbook child develops that way; with Charlie, I’ve learned to focus on him acquiring various skills, and the timetable is a jumble.
I thought more of the “varieties of development” on reading an interview of Amanda Baggs by author and artist Donna Williams, in a post entitled Putting autism on trial: an interview with Amanda Baggs (July 3rd). Williams and Baggs talk about autism and the consequences of being “thrust into the limelight” and the “risk of becoming an ‘autism circus’”; Baggs’s In My Language video was, as Williams notes, seen by more than a quarter-million viewers and counting. A February 22nd CNN interview further brought Baggs into the media spotlight, and her reflections on her experience of being interviewed are essential commentary to the TV interview.
Particularly of interest to me was Baggs’s description of her development; she notes a regression in infancy and another regression in adolescence, when she “started having speech cut out on me.” Towards the end of the interview, she describes these regressions with metaphors of climbing and of hanging on.
DONNA WILLIAMS:
There have recently been some critics who have claimed that you had most functions in the ‘high functioning’ range till age 11-14. Most people with severe functioning issues haven’t had that same early development. Whilst the labels shouldn’t matter, there will be many who are very precious about their labels and would like to know how you think someone can appear to function at a high functioning level yet actually have significant challenges others either don’t see or choose not to.
AMANDA:
What I find with things like that, is people think since I did what they calla regression in adolescence, they believe I was always totally normal before that, or close to it. They see it as I had always been on a hill, and then I fell off. In reality I have had two so-called regressions, one in infancy (before which I was also not “normal”) and one in adolescence. If you put me in ordinary terms, it would be as if I climbed a little bit up a hill (infancy), fell down (infancy), climbed the rest of the hill hanging on barely by my fingernails with all my strength (throughout childhood, getting especially higher in later childhood), and started falling off of that (puberty), while still clawing at the hill and trying to stay on top of it.But the place I fell into is not a bad place, just not what people expect of someone. What people don’t see is that the person is hanging on by their fingernails, rather than standing on their feet on solid ground at the same height like most people do. This denies the struggle of the person who had to climb to where other people were born.
My son Charlie has been having a good year, after a regression starting when he was about 6 1/2 and until he was about 9 1/2. It was a very difficult period, when Charlie’s academic learning came to a complete halt, attempts to place him in a mainstream classroom were unsuccessful and painful, and his self-injurious behaviors—-which had happened occasionally before—-became a daily occurrence. “Regression” may not be quite the right word as, all through this time Charlie was learning to do things that he now excels in: swimming (in the pool and in the ocean waves) and bike-riding. Amanda Baggs’s account of her own childhood, and Charlie’s own development, underscore for me that every story has its beginning, middle, and end, but not necessarily in that order—-and that there can be more than one beginning, too.
This suggests to me something I’ve always intuitively understood to be true: there is more than one type of autism (I’m not differentiating “functioning” levels or — without trying to medicalize, but I can’t think of other words right now –or severity of “symptoms,” but rather age of onset of symptoms), with (likely) more than one cause.
Which, of course, complicate the game considerably.
Please pardon the grammatical errors; I’m not usually so sloppy.
Lola would not have been diagnosed at 14 months – she was barely diagnosed at 2 3/4 years. Her limited speech is the biggest sign the diagnosticians mention, and of course that was not a factor at 14 months. I am not sure if Lola had “the package” at 14 months – I truly don’t remember, and I would have to go back to old videos to see. She was very smiley and had great eye contact then, but I don’t know if she had it in the combination described.
Neither of my kids at the 14 mo – 22 mo range were super communicative that way – they were far more interested in processes than people. But once big brother’s speech exploded just before age 2, that “package” happened, too. I remember reading similar things about hyperlexic kids, that once they figure out language, the socialization follows (rather than socialization instincts preceding or causing language development).
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=9811912
I came across this article in Pub-Med a long time ago. I’m not sure what it means. I think it in some ways shows autism as a developmental disability present from birth.
I remember trying to get Ben to sit up at age six months, and him falling right over without trying to catch himself.
Ben also arched when I fed him.
He also had a “palsy” in his hands. When given a cup to drink, he seemed to shake it. I was not surprised when he was dysgraphic in school, because of it.
What is amazing is that regardless of atypical development, autistic people survive and thrive in their chosen environments. It’s like they enjoy self-actualization when they find a place to fit that is comfortable because of, not despite, their autism.
We are all looking for a place to “fit”, because of, not despite, our mix of abilities and disabilities.
What the article means is that analysing the movements of babies can show up (some kinds of?) autism at an early age.
In the case of parents or doctors who believe in early treatment the baby could have a very good chance of becoming very close to normal. There could be some interesting quirks and abilities remaining to add spice to life?
I expect that this line of research will develop.
I think it’s the movements that are looked at and also “joint attention”—which my son (as I realize in retrospect) did not display. I think he could have been diagnosed at a very young age, now.
Patrick probably could have been diagnosed before age 1, but definately by 18 months. He was so different and, while I don’t think it was denial, we just didn’t see his differences as being a problem until it started interfearing with preschool at around age 3 1/2.
Very interesting to me, thank you. My son, Pete, does have “joint attention” and did when he was evaluated at 4 years old. That was one big reason why he didn’t get a PDD-NOS dx (or autisim). Yet, he is definitely on the spectrum. I’m grateful that his issues are mild and would never want him “mis-labeled,” but not having a dx is also frustrating.
Thank you again for sharing this important information…we, too, have had “difficult phases” where progress is hard to see. Pete’s usually last only a month or so, but it seems so much longer when it’s happening.
Not every neurological difference is ASD. The way children are evaluated is not comprehensive and can caused people to be mis-diagnosed, and this can lead to the wrong treatments, resulting in frustration and ‘regression’.
What I mean to say, is, no matter what the dx, children and adults should be treated with respect and empathy. This, and humour, is the best way to achieve ‘joint attention’ in my opinion.
I think Jennifer makes a reasonable point (and I think this is something a number of well-informed people, including Amanda B., have suggested) that there are many different manifestations that have been conveniently (?) gathered under the label “autism”. Our child M did “regress” (though having read Amanda’s crucial discussions of “regression” on her blog, and following Kristina’s points above, the scare quotes are apropos) – at age two M knew several dozen words that xe used in two- and three-word combinations, used about a half dozen ASL signs and initiated requests, happily followed along with board-books and identified body parts, loved to draw and color with crayons etc., loved animals especially cats — and between two and two-and-a-half xe lost all xir verbal and signing ability (is slowly gaining some of it back, about a half dozen reliable words plus significant additional vocalization at age almost-7), lost interest in following along with books, became distressed and sensory-defensive in the presence of animals (still the case with rare exceptions), stopped coloring and to this day can only use crayons for a couple of minutes before putting them into xir mouth. (I have my own ideas about what may have precipitated this situation, but won’t go into it here.)
Yet there were also a number of signs (looking back) beween age 1 (when we adopted xir) and age 2 that M had significant sensory-integration issues, and also some signs of other elements missing (?) from “the package”. So there’s little doubt in my mind that M’s neurological wiring falls on the autistic spectrum, and I see that in neutral/positive, certainly not negative, terms (for example, M’s coloring/drawing skills before the “regression” were really spectacular, a level of creativity with color that I didn’t see in xir peers at the time; and there are other aspects of xir personality that are probably wonderful-because-autistic).
I do, however, believe it plausible that some environmental factor disrupted M’s ability to function, causing a variety of stress/distress symptoms that it took us a long time to understand and an even longer time for us to figure out how to help xem manage … with various types of therapy and — eek — even some non-extreme biomedical approaches, some combination of which appears to have increased M’s ability to self-regulate, communicate, etc. – though not (yet) to the levels that xe had at age 2. (in other ways, of course, xe is very much a 7-year-old, so the notion of “functional age” or “mental age” doesn’t hold much water with me; Amanda has also blogged very articulately about that issue – if I could code html properly, I’d link to one of her posts on the matter.)
In any case, the fact that some (though it would seem not all) people with autism do lose skill-sets at particular times during their lives does IMHO make plausible the theory that there is a combination of genetic and environmental factors at play. But it is indeed a valuable reminder that the autistic individual is the best judge of whether the “lost” skill-sets were as useful as others might have perceived, and if in the process other skill-sets were “gained” that may not be readily apparent to a non-autistic.
If you are interested in signs of autism from early on I have a youtube video featuring pictures of me from 3 months old.
http://www.youtube.com/watch?v=ekW3IfEMf9w
The one at 3 months shows one eye turned in, the legs banana shaped perhaps indicating vit D deficieicny (I was later dx’d with two primary immune deficiencies and had jaundice and chronic infections from 6 mths) then there a pic at 18 mths with my brother gripping my forearm which is very akin to the regressive pics of kids with autism. Later pics have me in the midst of Tourette’s tics (had tics from 2 and a half years old), stims and confused and defensive postures. The childhood pics end at age 8 and whilst the autism may be obvious I’ve aired the pics because they are just pics of my childhood and they happen to also be pics capturing autism. But the progression makes a good pictorial study in any case.
I was assessed as psychotic at age 2 and still tested for deafness at age 9 (by then labeled disturbed) and made good progress developing functional language (the one word-one meaning system) around age 9-11 (previously echolalic from 18 mths) after the meaning deafness was finally understood. But by puberty I regressed on and off and in a 6 mth emotional breakdown I went back to virtually no speech around age 12 (I’d have episodes of selective mutism since late childhood after developing functional language), peed all over my room, was starving myself, didn’t wash etc and had basically gone ‘feral’. Mentally I wasn’t ‘home’ and cognitively everything was drifty and rusted up, it was extremely hard to embrace my life or get back into my body, but by age 14 I had relatively done so and from there I tried to never again fall back into that state.
In my 20s I developed severe CFS and the gut/immune/metabolic issues were finally dealt with fully.
As an autism consultant who’s worked with over 600 people on the spectrum I often came across children and adults who had marked regressions not just in infancy but in mid and late childhood and also adolescence. I also came across a handful who had regressions in adulthood after physical, emotional, mental breakdowns and in 2 cases substance abuse.
Consulting work taught me we can’t live in a world of precious stereotypes if we are to understand diversity in ASD and help those with it. Vested interests in packaging autism neatly for costly one sized fits all programs or fundraising charities costs the research field precious time by diverting them away from what can be learned not just from the similarities but from the vast differences.
… Donna Williams
autistic author, artist, composer, screenwriter
http://www.donnawilliams.net
M’s Dad, I’m very struck especially by what you say about M’s coloring. Charlie was taught to color when he was 2 1/2 and he has never colored with such precision and with so many varied colors since—-coloring tends to be take crayong and scrawl lots of zigzags. With someone sitting with him, he will color a whole sheet completely, in one color.
He was initially taught to color in an ABA program, in which we colored a picture and he learned to imitate us. He really loved doing this and would sit with a box of markers and color with minimal guidance with us, but gradually he only wanted to color certain pictures (of fish in particular). And the when he was 4, he stopped and has not cared to do anything with paints or crayons or markers.
Thanks to Donna Williams for the video link–I guess I would say Charlie’s regression, or a certain turn in his development, occurred in mid-childhood and it could be said to start slow, then happened all at once. “Drifty and rusted up”—-that phrase makes me think of how so many of his days when 6 and 7 seemed to pass one and the same; we did feel “stuck.”
Donna Williams! What a gifted talented lady you are.
I was enthralled by your you tube video.
Such exquisite artwork, that conveyed so much meaning and depth of feeling, touched me greatly.
And to top it of, the voice of an Angel….
Interesting that Donna can see that somebody like Temple Grandin did not need dietary changes to become successful in her life, but that some of us do. While Temple seems to lean towards drugs when necessary for treatments.
Both of them have done very well. Diversity…
I have required GF/CF/low salicylate/low sugar diet, supplements, treatment for immune deficiencies, gestural signing and use of representational objects, tinted lenses, strategies for meaning blindness and face blindness, a small amount of an atypical antipsychotic AFTER all other interventions, to treat co-morbid rapid cycling bipolar, OCD, tourette’s tics and social anxiety disorders and lots of ARTism to divert chronic agitation… so no walk in the park really.
There’s a lot in the culturalist movement who are anti medication or feel antidepressants are used to manage societies mistreatment of auties and that antipsychotics are not appropriate to autism, but I was self injurious since 2 years old and my co-morbid stuff is now found in kids from 18 mths and around 30% of kids with autism, so I’m hardly the ‘odd case’ these days.
What’s more, when the co-morbid stuff got managed the life long immune deficiencies disappeared for the first time without expensive immune boosters I’d been on for years. The health issues were likely gonna kill me fairly young, so the immune specialist thought, so if taking the massive burden off got me healthy, so be it.
But, sure, there’s a world of difference between someone with my stuff and someone with Temple’s (I was biting, punching and slapping myself all my life and struggling with extreme self directed rage episodes and life threatening behaviours – walking in front of cars ambivalent if they would hit me). Medication can save some people’s lives and it has certainly held some families together. I often think many culturalists have no idea how hard it is to watch an autie self injure year after year. I would tear my nails down my face and punch myself in the face and stomach. I had never seen other kids do this till I was an autism consultant and it was so horrible to watch. But when one lacks any simultaneous processing of self and other, its so hard to fathom that when doing it.
And many culturalists think this is because the kid is upset etc but for me it would happen when I was too happy, too sad, too excited, too shy… even when having any uncomfortable thought or feeling. In the end it was a hair trigger and an addiction, so very hard to turn around. My brain had an answer to everything – bash myself. And if I hated my own addiction there was self hypnosis… what a choice. Celebrate that? Nuh. Lots of autism stuff may be just fine or adaptable, but some is just a tiresome, claustrophobic loop. But most auties aren’t in that loop and now its managed and low key in me. But I can’t conveniently forget it and say all was rosy in the garden.
Some auties who’ve had things like rapid cycling bipolar all their lives may not even know this is what it is, they’re just seen as having severe autism, especially if they additionally don’t have functional speech.
… Donna Williams
http://www.donnawilliams.net
when one is stuck and rusted, its time for pillow fights, rib tickling, surrealism and sensory buzzing. Depression can become an addiction, its very stilling and deep and hypnotic and before one knows it the body is 1000 miles away and so is meaning.
We need to stop labeling severe mood disorders as regression or ’severe’ autism and say what they are – severe mood disorders exacerbating the severity of one’s autism – and address these one a variety of levels. Social change isn’t the whole deal for everyone. In my case a neurotoxin – quinolinic acid – had been set off by bacteria and undigested proteins crossing the blood brain barrier (shown to me in test results and explained by the immune specialist) and it was robbing neurotransmitters and messing with brain chemistry. That requires more than social change.
The answers and the treatments will differ from person to person.
.. Donna Williams
http://www.donnawilliams.net
mania is also an addiction, the endorphins, and I was a major buzz junkie, but mania crashes and that’s acute when it does. Scary rollercoaster.
Adrenaline is another addiction, and one gets no conscious choice in the progressive physical addiction to rage or anxiety.
in the end one finds its sources everywhere, a big 5 ring circus and no exit sign.
perhaps some folks have a problem with the part of the brain that manages addiction, maybe some folks haven’t got an off switch up there.
I have worked SOOOOOOOOOOOOOOOOO hard on addiction to my own chemistry highs. It’s been the Zen Buddhists balancing act.
a very spiritual journey indeed.
… Donna Williams
http://www.donnawilliams.net
I urge you all to check out Donna Williams website..It is awesome..
Donna’s art is unbelievable..
The moment I laid eyes on her paintings I was hooked.
So much so, that today I purchased 6 pieces of her exquisite art!.
I only wish I could have afforded to buy more.
.
She has a deep soul connection!
And I don’t think that I have EVER connected with works of art such as hers before ,in such a manner.
A picture paints a thousand words!
Certainly is true with Donna’s paintings!
oooo
wow, Kathy
you should be in the ‘compliment olympics’
all I know is I love to play with color and form and movement. I paint like a sculptor (but I am also a sculptor) so you’ll see from your works they are highly textural. For me painting isn’t visual, its physical, and about movement (you can see that).
I’m face blind and still relatively meaning deaf and relatively visually agnosic (I know the meaning of visual things by movement and placement rather than vision), so this is why I learned to map movement very acutely and this is why the characters in the pictures seem ‘alive’.
I don’t find the meaning blindness too much of an issue as it created quite a strength in mapping pattern.
The meaning deafness got me down a lot for a long time but now I’m not ashamed to sign or use representational objects (I used to only do this with my father and more recently with Chris and try and hide it with everyone else) I feel happier. I spend almost all my time arting (I’m like a monk when I’m ARTing, its like the art uses me to create itself) but you can see through my art and music that I’m VERY connected to people, even though I’m so solitary.
I used to wish people could see see past everything to people’s patterns, movements and systems, then they would see the person inside no matter what. I was told this skill to see the person inside is ’seeing ghosts’ and considering the German word for ghost is ‘geist’ which means ’soul’, maybe I do see geists perhaps because I can’t hold onto faces.
When I was 3 I couldn’t ever find my mother in the supermarket because I only knew her by the color clothing of that day. By age 5 I had learned to hear the music of people’s movements and voice patterns.
“I’m face blind and still relatively meaning deaf and relatively visually agnosic.”
That’s very interesting Donna..
I saw (your art)the group of people gathered round a birthday cake.. Their faces blank..
But the emotion and feeling that image conveyed…
I was certainly taken by it..
And would have purchased it if it had not already been sold.
That is what is so fascinating about your works…. You can convey so much even without facial features and expressions!. It’s a feeling.. hard to explain.
Certainly a rare gift, I think.
You see there are actually two physical languages of the body. sometimes they resonate, too often they don’t. One is the language of appearance, a learned language that arises from people able to juggle a simultaneous sense of self and other – so they put on appearances. This is what people call facial expression and body language. But the other language is the language of being. I call it The Music Of Beingness. This one people have regardless of whether they can process any simultaneous sense of self and other. And rather than it being an interactive language, its far more a sort of physical self-speak and its how the personality naturally speaks directly in the small muscles and nuances of the body on a preconscious level.
As an autie who lacked most capacity to process or hold a simultaneous sense of self and other, I found the ‘appear’ language quite ‘cluttering’ and non-sensical. In my perception, why would people overlay their own natural music of beingness? I came to grasp that in my 30s when I finally held enough simultaneous sense of self and other (for 45 mins) to consciously realise, woah, so THATS why they do that. But otherwise, I felt all my life we weren’t really seeing each other, because people had cluttered this natural first expression.
That’s why you feel it captures souls, because it strips away the overlay, yet, beneath it is a far greater richness, naturalness and fullness of selfhood.
As for gifts, I’m a Taoist (that shows in my art too). All gifts are deficits and vice versa. My ARTism is the result of many challenges but ARTism itself can so consume that one forgets to eat, wash, drink, pee, because being one with the art process is very comforting.
Art and Taoism go together because through my art I’m also expressing the sacred nature of balance. In my paintings there are always opposites. Great power and subtlety, together, the dynamic and the still, great aloneness yet foundness in the one place.
I was ill about every 6 weeks most of my life, because of primary immune deficiencies (spent my first 26 years on fairly regular antibiotics) and that both led to damaging detachment from body and inability to identify with it, but also this has given me great appreciation of how hard won it is to re-own one’s body and how lucky a living person is to have one and to see people beyond their bodies to the personhood expressed in any part of it. Similarly, things like Tourette’s tics challenged me to know self from impulse control disorders, yet this gave me greater insight into all people and how they struggle to know self from compulsion, for example. And rapid cycling bipolar stuff took me to the edge, exhausted me, scared me, took me to manic bliss and extreme rage and terror most people will never know, but also taught me to value my life in whatever snapshots I could and that one can let a condition direct one’s life or seize the reigns, tame the horse. The meaning deafness has ironically given me great passion to be clear in my communication. The meaning blindness has taught me that the words or mental ideas we have of things associated with their sight, does not define the whole of any experience. A microwave oven could be a TV, a doll’s house roof could be a musical instrument. A piece of string can be a toy.
I’m looking forward to sending your paintings today. The post office has nice people and I love the whole post box world. The red box connects up the world you know. Yet most people barely notice this ‘Tardis’. Things, objects with no legs or eyes or hands to control their journey, go into it and travel in time and space. This is such an awesome thing.
I’m thinking on your phrase now, Donna, “the music of beingness”……
That’s really interesting. I called it something different, but have often written about the difference between the sort of conscious-intentional-surface body language people use, and the unintentional-unconscious-natural body language they use. I can often read the second, but have real trouble with the first, although sometimes I can see there’s a glaring discrepancy between the two. I’ve talked to other auties that this is the case for as well.
The music of beingness is because I see MUSICALLY. Movement often looks like symphonies to me, sometimes playing solos, sometimes in big accompaniments.
The music was slightly different to each person even when they thought they were playing the same tune.
Sometimes I’d meet someone with a similar soul feel to me and say or think, you have my same music.
Some people’s music of beingness resonates wonderfully or is very complimentary.
My account of my husband’s music of beingness upon meeting him is in Everyday Heaven. I wrote about what it was like for my body to be so struck by such a compatible music.
I think its a cross between musical and kinesthetic thought in someone relatively meaning blind, meaning deaf and face blind, if that helps.
I have a painting on my website (sold though) called Music of Beingness.
It was the music of beingness that helped me to SEE people when my eyes couldn’t register.
Its is something in my body rather than my eyes.
I saw the best translation once when a string plucked on one guitar set off resonance in another.
http://www.donnawilliams.net