Wednesday, December 31, 2008
Friday, December 26, 2008
Alas, it doesn't, so here I will share a few tidbits I have learned, based mostly on my experience with Brad.
- Acquisition of speech - As indicated in my sidebar, Brad's speech was delayed; he became verbal at around 25 months. Also, Brad is acquiring language in what appears to be the "gestalt mode." See this graphic for a comparison between the gestalt and analytical modes of acquiring speech. In lay terms, he acquired speech in part by rote and repitition. Typical children do this too - indeed imitation is the building block of learning. But typical children go more quickly from rote to generalization, whereas Brad gets stuck on repetition.
- Dysfluency - As I blogged, Brad developed dysfluency at age 2.5. At the time, I called it a stutter, but it appears that it isn't a classic stutter. Rather, it's an offshoot of his dyspraxia and motor coordination issues. Simply put, his body doesn't comply with his brain. This plays out in his walk and his talk.
- Stimming - For the uninitiated, "stimming" refers to actions taken to self-stimulate. Common examples include flapping and spinning. I didn't observe Brad stim at all until...just last week (2 years 11 months). He's flapping more now, not just when he's excited. Sometimes, it's just when he's walking. Note that there's nothing wrong with stimming, and I don't intend to take any actions to reverse this trend. However, this marks a new stage of symbolic importance to us: People take notice of him when we're out.
Thursday, December 18, 2008
We met with the school district on Wednesday and received our very first IEP. We also received his evaluations. Lots of interesting observations, but the bottom line is that he's at the low end of the normal range for speech and gross motor, and below the normal range for fine motor.
The IEP result - all good news:
- He will attend an integrated preschool four 1/2 days per week. The integrated class is currently 11 children, at least half of whom are typical peers
- For specialty services, he will receive two half hour sessions of speech per week
- With his class, he gets access to an array of group activities geared to motor, physical and social development
To anyone afraid the "autism" label is a one way ticket to some sort of educational ghetto, I can only say: that's not my experience so far. Quite the opposite.
I should also add that while his diagnosis guaranteed placement at the special education preschool, given his social and communication function, in all likelihood, he would have nevertheless qualified. The children that I know of who have gone to the same school didn't have a diagnosis, including a neighbor of mine.
One final note. I considered sending Brad to Montessori or a regular preschool. While I appreciate that Montessori is regarded as cultivating free thinking in children who break the typical mold, at this age, Brad needs structure and routine, not broad freedom. As for regular preschool, I was reminded of this essay in which Kerry Cohen writes:
When I picked him up from our first stab at a regular preschool, one where special needs kids were supposed to be welcome, I always had to brace myself for their day's account. He didn't listen. He cried and cried and they didn't know why. He wouldn't sit with the other children during story time.I wonder if this isn't an inevitable result for SPD and PDD kids, the result of trying to fit a square peg into a round hole. Why subject Brad to that?
Friday, December 12, 2008
Every weekend since the Countdown began (about 6 weeks ago), we gave him two hours of underwear time. On Saturday, I would make sure he had a success, basically by keeping him on the potty at the right time. I figured out that he pees at around 8:45 AM. When he "succeeded", I gave him an M&M. On Sunday, I would give him underwear time, but just let him do his thing, which caused him to have an accident, in which case, no M&M. Also, during the week, we started doing potty time after breakfast.
For the first four weeks, his weekday potty time (after breakfast) consisted of him sitting on the potty for a few minutes and not peeing. By week 5, he must have figured out how to hold it in because he started peeing in the potty after breakfast.
So that's pretty much it. But every kid is different, and certainly spectrum kids have body awareness issues that typical kids don't - what worked for Brad might not be the answer for everyone.
There's also a normative parenting issue embedded here - some believe any form of potty pressure or self-imposed timeline is wrong. I see it the reverse. I feel as though independence is a great gift to Brad - indeed, he smiles ear to ear when he potties - and as a parent, I feel obligated to at least give him that chance.
Sunday, December 7, 2008
Thursday, December 4, 2008
Working memory is our brain’s ‘post-it note’. We make mental scribbles of bits of information we need to remember and also work with that information. For example, if you were baking a cake that fed only two people, but you had four people coming to dinner, you need working memory to remember the ingredients and to multiply them in your head so that everyone gets a slice. Without it we would be lost literally, we wouldn’t be able to juggle directions in our head to get to that important meeting at a new location and would forget important phone numbers and contacts. Working memory is just as critical for a variety of activities at school, from complex tasks like reading comprehension and mental math, to simple activities such as navigating around the school and taking the right books for homework.Anecdotally, I've heard that this is the reason why high functioning autistic individuals have difficulty with driving.
It appears there's a correlation between Developmental Coordination Disorder (DCD) (a term often used interchangeably with dyspraxia) and poor working memory. See, e.g.: Working Memory and Learning in Children with Developmental Coordination Disorder and Specific Language Impairment. It appears that there is also a correlation between DCD and specific language impairment. See, e.g.: Comparing Language Profiles: Children with Specific Language Impairment and Developmental Coordination Disorder. For more information, see Dyspraxia and Working Memory.
My sense is that, with Brad, his motor coordination issues are connected to his cognitive issues. Perhaps the link is working memory. Perhaps it's not. Just another piece of the puzzle to consider.
We're in a holding pattern on two other fronts:
- Potty - he's got bladder control, peeing in the potty about twice a day. Everything is going very smoothly in that department. Self-help is a different issue. Won't go there - TMI. Let's just say, we change his clothes even when we make it to potty on time. Next step is getting rid of the diapers completely. I plan on doing that in the next few weeks. btw, I'm the proud owner of two Piddle Pads (hat tip to Rainbowmummy and Patience). I haven't broken them in yet cause we're still using diapees in the car.
- School - we meet with the district on December 17, at which time they present the IEP. I think it's a foregone conclusion he'll qualify for something - what that will be, I don't know. I'm hoping for a seat in my town's integrated program, so that he'll have some typical peers.
Friday, November 28, 2008
Friday, November 21, 2008
"Ga-MEEN-as" - bananas
"Cozy" - Noun. The space between Mommy's back and the couch. E.g., "Let's play in the cozy!"
"Grandpa" - universal word for bald guy
"Robin" - universal word for brunette female with glasses
Friday, November 14, 2008
Look Me in the Eye is a great read from start to finish. Parts of it were informative, explaining how an Aspergian thinks. But the bulk of the subject matter is a compelling story having little to do with Aspergers itself, narrated with a strong Aspergian voice. So, more often than not, he shows the reader how he thinks, rather than tells us.
Robison was not diagnosed with Aspergers until he was in his 40s. He writes, of reading about Aspergers:
Just reading those pages was a tremendous relief. All my life, I had felt like I didn't fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.This passage left a strong impression on me. My journey has caused me to think a lot about what the label means. I've blogged about what I think the label means in the objective sense, and others have chimed in about how they perceive the label - some positive, others negative. Often overlooked in the debate is what the label means for the individual with the condition. What I gather from the account of Robison and others is that with the label comes a sense of understanding and a sense of community and pride.
And so while others concern themselves with the negative stigma associated with the label, I'm struck by the importance of the label with respect to identity. Imagine if you were ethnically diverse or racially diverse (in a nonapparent way), and your parents never told you to spare you negative judgement by ignorant people? This is, in part, why I think it's harmful to dodge the label.
I thank Robison for his emotional honesty.
Friday, November 7, 2008
Thursday, November 6, 2008
The best reference is Engaging Autism, by Stanley Greenspan and Serena Wieder, who pioneered the technique. The therapy is predicated on the theory that inside a person with autism is a social being, willing and able to engage. However, due to "biological challenges", engagement is elusive. Hence, the primary goal of Floortime is engagement.
We are fortunate in that three members of Brad's team are formally trained in Floortime. His speech language pathologist is taking a Floortime class currently, so Brad is among her first subjects. As I blogged, she's taping him for class. Brad's occupational therapist took Floortime classes taught by none other than Stanley Greenspan himself. And last is the specialty provider whose specialty is, yes, Floortime.
Here, I will share what I have learned.
It's pretty basic, really. To engage Brad, I get down on the floor and enter his play. Two techniques that are key to success:
1) Integrate with occupational therapy. Because Brad tends to persevate and zone out when he's inert, we start off play with some physical play. I recently retired our Thomas table so that our entire playroom is one big crash pad. I even bought an exercise mat. When we play, we often do so on uneven surfaces that give him procieptive input.
2) Hand jive, baby.
Every good Floortime therapist does hand jive. Well, they don't call it that, but I do. Hand jive refers to using your hand as a barrier to persevation, but also as an entry to your child's play. The first time I saw it, I didn't know what it was, and I thought it was obnoxious. Now, I know better.
Saturday, November 1, 2008
Friday, October 31, 2008
To disclose or not disclose?
We struggled with this question in the wake of Brad's diagnosis. So here’s my after-the-fact 2 cents. I honestly think there’s no one who you “must” tell right away, other than perhaps close family and your other children that are old enough to understand the situation. Maybe you wait a few weeks or months to tell the grandparents, particularly if they won’t be seeing your child in person for a while or if you’re in line to get a more thorough evaluation or second opinion. Their generation tends to be very out of touch with what an autism diagnosis means today. To them, autism most likely conjures up images and ideas that bear little semblance to Brad.
And then there's the issue of those who don't know. What to do when other parents go on and on to you about all their children’s developmental progress? Or complain that their child is nominally late doing x, y or z. We know bragging and complaining is just what parents naturally do, and there's no reason they shouldn't. We notice it because of our own heightened awareness. We try not to let it bother us. We try to be as happy for others as we are for ourselves and our own family. In a similar vein, we also make a point not to get jealous of other families who seem to have it easy compared to us. It’s hard not to fall into a trap where you think other people don’t have their own problems, but we realize that nearly every family has its issues (more so than ever in these economic times), even though some might not be as life affecting or day-to-day as a child on the spectrum. We adore Brad so much and we love our family just the way it is. Brad is a blessing.
Friday, October 24, 2008
Here's all we have left.
That's the status. 8 refills to go. The countdown starts.
Sunday, October 19, 2008
Saturday, October 18, 2008
But that doesn't stop Jenny McCarthy from hysterically claiming that vaccines caused her son's autism, most recently as part of a cover story in my beloved guilty obsession, Us Weekly. I shudder at the number of women of child-bearing age who will read this story and be terrified to vaccinate.
For anyone who puts stock in the subjective testimonial of Jenny McCarthy, consider the source. No, I'm not going to link to the crass Candy ad. Or the Playboy pictorial. I'm linking to a report that Jenny McCarthy runs a group called indigomoms.com. The group has since been deactivated, at the behest of her handlers.
Who are indigo moms? In short, they believe their blue-eyed kids are psychic. Watch this Good Morning America segment to learn more (or just to get a really good laugh, the good part is at 1:33 min.)
Abc News Segment About Indigo Children via 31337videos.com
Related: "Indigos", "Crystals" and Jenny McCarthy
Friday, October 17, 2008
From one Bostonian to another, I'm here to tell you that my autistic kid is wicked smahhht. This is him "reading" a book:
Also, you look like a lesbian.
Wednesday, October 15, 2008
Polly hypothesizes that conditions like autism and ADD are not disorders, but rather the manifestation of certain personality types under the Myers-Briggs Type Indicator. She writes:
Indeed, the blurring of the line is seeping into pop culture, as evidenced by this "Wired Wiki" entitled "How To Deal With Your Mild Autism." The Wiki reads:
What I've found is that in places like Wrong Planet, people are aware of MBTI and that many of them type INTJ or INTP, which are among your typical engineers, and tiny percentage of the overall population. Incidentally, Einstein is often anecdotally typed as INTP....
The people making the rules, who decide what acceptable behavior is, are usually SJ [ed. Sensing, Judging] types (most elementary school teachers are ESFJ, I read that
in People Types & Tiger Stripes), so SJ kids (who are wired to be cooperative and follow the rules, and generally are the kind of kids unimaginative teachers like to have in classrooms) get to have standard language disorders. There aren't all that many NF [ed. Intuition, Feeling] types, but I'd say they land in with the ADD or the ASD depending on their total personality mix.
As for ADD, and I know I'm just spouting on this, I've been known to joke that the introverted SP [ed. Sensing, Perception] types get that label (extroverted ones get ADHD), the NT [ed. Intuition, Thinking] ... types get ASD. [Editorial notes and links added.]
Einstein likely had it. Mozart, too. Even BitTorrent creator Bram Cohen. No wonder Asperger's — a mild form of autism — is known as the geek syndrome. If you feel awkward in social situations, have obsessive-compulsive tendencies, and are overly sensitive, you may have it as well.The problem with this theory, in this blogger's opinion, is that it in effect reduces autism to just a social impairment and does not take into account communication impairment or other neurological symptoms, such as impairment of executive function, hypotonia, dyspraxia or ataxia, not to mention the host of other physical symptoms that correlate to autism, such as seizure disorder and gastro-intestinal problems. Personality doesn't tell the whole story. Plus, engineers and other math types often have the personality without the litany of neurological symptoms. In my opinion, it is more likely that autism impairs the subject's ability to intuit verbal and/or nonverbal social cues which, in turn, causes social impairment and results in social introversion and the other traits which characterize INTJ and INTP.
Added: Polly clarifies: "When I listed those personality types as corresponding to pathologies, I intended to tie the idea of an underlying brain glitch as manifesting in different ways depending on the underlying temperment, not to claim that there was no glitch."
Thursday, October 9, 2008
The finding has emerged from a study of autism among 378 Cambridge University students, which found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians....Correlation between autism and having a father in engineering is, in part, what drew me initially to the Einstein Syndrome when Brad was first flagged for autism, and I had a rather myopic view of what autism is. My husband went to MIT, my father in law is faculty there, and my grandfather was also an engineer - all signs that Brad had "einstein syndrome." This seemed like a suitable life-raft for me to cling to at the time.
Separate studies have shown that the fathers and grandfathers of children with autism are twice as likely to work in engineering.
I've since rejected the einstein syndrome hypothesis for several reasons which I have blogged about. The study excerpted above is further evidence that the genius/idiot paradigm upon which the Einstein Syndrome rests is false.
The London Times article quotes autism research luminary Simon Baron-Cohen:
Our understanding of autism is undergoing a transformation.
It certainly is. Certain present company excluded.
Friday, October 3, 2008
Have a nice weekend, everyone.
Added: Just to clarify, I'm not anti-ABA. If I'm anti-anything, it's the idea Patience alluded to in comments - that ABA is a panacea, without which all children on the spectrum are doomed to a life of low IQ. That having been said, I believe that ABA can make a significant difference in quality of life for many. Treatment decisions are highly personal, and they reflect clinical evidence, as well as the family's norms. And for that reason, I'm not doing anything other than saying "this is what worked for Brad."
Monday, September 29, 2008
Friday, September 26, 2008
Children on the spectrum have a wide variety of sensory challenges. A good OT can identify those challenges and provide the child the sensory input the child needs to feel centered. In Thinking in Pictures, Temple Grandin remarks that until she experienced the "squeeze machine" she invented, she wasn't able to experience a very simple emotion - pleasure. It's a powerful testimonial. In Engaging Autism, Greenspan and Wieder also write of the sensory challenges and advise parents to integrate OT principles with the "Floortime" routine. Last, there are studies that show positive correlation between eye contact and vestibular input among children with autism. It's like finding a sweet spot, and that sweet spot can unlock the door to emotions like pleasure, but also a higher level of engagement. A good OT can do that.
Who's a good OT? One who's worked extensively with children on the spectrum. One who's talented.
My practical advice for the newly diagnosed: if your child is under the age of 3, you're covered by your state's zero to three program, e.g. Early Intervention. What I learned through this process is that you may also qualify for an OT benefit through private insurance, if your child is covered by private insurance. We use a private OT, and my husband's insurance covers the benefit. So if the OT assigned to your child through Early Intervention (or other zero to three program) can't find that sweet spot, it might be time to interview some one new and you may have an untapped resource (private insurance) at your disposal.
We're fortunate in that Brad's OT not only has experience with children on the spectrum, she's certified in Floortime. As for what works for Brad, he benefits from procieptive and vestibular input. He works with the exercise ball and the sit and spin. Weather permitting, he works on our jungle gym - mostly the slide. She does all sorts of exercises with him. But what makes her extra effective is that she integrates the Floortime principles with the OT. She tries to engage him, using high emotional affect, following his lead to an extent and attempting eye contact when possible. She finds that sweet spot.
Compare and contrast to Brad's developmental therapy sessions, which are hit or miss. He goes through long stretches of persevating, zoning out and repetitive speech, in spite of the therapist's best efforts. Recently, we had the developmental therapist do a joint session with the OT, so she could learn how to get him to the top of his range. As a result, we've already seen an improvement in the quality of the developmental therapy sessions.
My two cents.
Tuesday, September 23, 2008
In an interview, the editors describe the purpose of the journal:
Too true, and amen to that.
There is so much noise out there about autism - much of it hyperbolic, stereotyped, biased, inaccurate, and hysterical. Our hope is to create an arena where we can get to some truths about what it really is to be autistic and to love people who are autistic.
FYI, the editors are soliciting essays. The deadline for submission is December 31, 2008. See the website for details.
Kerry Cohen, one of the editors, authored this story, which resonated with me. I feel as though Brad and I are on a similar journey as she and her son, and I share her values. I look forward to the journal's publication.
Friday, September 19, 2008
"Children with autism don't make eye contact."
This was an assumption I labored under before Brad was diagnosed. This is false. According to Medical News Today (a wire service), an individual with autism may present with:
...[m]uch less eye contact than a person without autism. However, many people with autism do make eye contact, but often in a way that is different when compared to an individual without autism.Typically developing children use gaze cognitively to read nonverbal social cues. They are said to use "gaze monitoring" or use gaze to "check in" periodically. I believe this is, in part, what distinguishes children on the spectrum from typically developing children. Speaking from our experience, at 24 months, Brad made eye contact but as I indicate in the margin of this blog, he didn't use gaze the way a typically developing child does.
"If their child was PDD, they know it in their gut..."
So writes a parent of a so-called "late talking" child. I'm here to dispel that myth. While many parents recognize their child's PDD before diagnosis, in my experience, it's quite the opposite for a majority of parents. In fact, most parents haven't even heard of PDD. Of all the barometers for autism, a parent's gut is perhaps the least reliable. And if your child receives the diagnosis and you cling to your gut, the lightbulb won't go on.
Now I'm not arguing against skepticism, nor am I suggesting that there's no value to a mother's intuition. However, acceptance laced with skepticism is quite different from denial.
But reading the sentence excerpted above was a revelation for me. I had always been puzzled by the late talker yahoo group's mission statement:
This list does not serve those discussing vaccinations, special diets, sensory therapies or knowingly accepted false diagnosis.How do you knowingly accept a false diagnosis? Does this idea presuppose that the doctor tells you it's a false diagnosis or a diagnosis for services? Does that even happen?
But now I get it. You know it's a false diagnosis, because: you know. In your gut. Your infallible gut, which isn't really infallible.
Update: Note - the late talker group changed its mission statement. The excerpt above was accurate as of the date the post was published.
Thursday, September 18, 2008
The New York Times reports that approximately 6% of school age children have some degree of this disorder. Like PDD and sensory processing disorder, DCD is hard to define.
The DSM-IV criteria follows:
A. Performance in daily activities that require motor coordination is substantially below that expected given the person's chronological age and measured Intelligence. This may be manifested by marked delays in achieving motor milestones (e.g., walking, crawling. sitting), dropping things, "clumsiness," poor performance in sports, or poor handwriting.In light of C (above), technically, Brad's PDD diagnosis should rule out DCD. (Or maybe it's the other way around?) Moving on.
B. The disturbance in Criterion A significantly interferes with academic achievement or activities of daily living.
C. The disturbance is not due to a general medical condition (e.g., cerebral palsy, hemiplegia. or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder.
D. If Mental Retardation is present, the motor difficulties are in excess of those usually associated with it.
Wiki describes the motor challenges associated with DCD as follows:
- Poor timing.
- Poor balance (sometimes even falling over in mid-step). Tripping over one's own feet is also not uncommon.
- Difficulty combining movements into a controlled sequence.
- Difficulty remembering the next movement in a sequence.
- Problems with spatial awareness, or proprioception.
- Some people with dyspraxia have trouble picking up and holding onto simple objects due to poor muscle tone.
- This disorder can cause an individual to be clumsy to the point of knocking things over and bumping into people accidentally.
- Some dyspraxics have difficulty in determining left from right.
- Cross-laterality, ambidexterity, and a shift in the preferred hand are also common in people with dyspraxia.
- Dyspraxics may also have trouble determining the distance between them and other objects.
- Some dyspraxics have difficulty achieving and maintaining continence either of bladder or bowel or both. Bedwetting or nocturnal enuresis is common.
- Difficulties controlling the speech organs.
- Difficulties making speech sounds
- Difficulty sequencing sounds within a word
- Forming words into sentences
- Difficulty controlling breathing and phonation.
- Slow language development.
- Difficulty with feeding
Update: The DCD label was included in Brad's "impression" report; it was part of his official diagnosis.
Saturday, September 13, 2008
Friday, September 12, 2008
It's hard to get funding for research because it's not in the DSM, but we can't get in the DSM without the research. It's a catch-22.
The Out of Sync Child sets forth the three general profiles of children with SPD:
- Sensory Overresponsivity: The Sensory Avoider - "Oh, no!"
- Sensory Seeking: The Sensory Craver - "More, more!"
- Sensory Underresponsivity: The Sensory Disregarder - "Ho, hum"
Brad fits the "ho, hum" profile (described in detail below), almost to a tee:
The child reacts less intensely to sensations than do typically developing children. This sensory disregarder needs a lot of stimulation just to achieve ordinary arousal or alertness. His response to the world is "Ho, hum."
The child may be withdrawn and difficult to engage. Or, he may be so gifted and creative that he does not notice sensory stimuli because he is self-absorbed and preoccupied with intellectual pursuits. Determining the underlying cause of a child's problem is essential, and a therapist's art and science are required to figure it out.
The sensory disregarder may apper to be a "space cadet" or "out to lunch." He may be passive, lack initiative and unable to get going. He may tire easily and seem sleepy, and as a baby, he may have slept and slept and slept.
Source: The Out of Sync Child, p. 72
Underresponders often have sensory-based postural disorder, described below:
Postural Disorder causes the child to have poor posture. She may have low musle tone and be "loose and floppy." She slouches while sitting or standing and slumps over the desk and dining room table. This droopy child is beseiged by the "gravity monster." The reason may be the inefficient sensory processing of vestibular and proprioceptive sensations about where her body is in space and what it is doing.
According to Dr. Ayres, "The major symptoms manifested by children with this type of dysfunction....are related to the fact that man is a bilateral and symmetrical being." When a child has not developed a sense of two-sidedness, Postural Disorder may interfere with nature's plan, which is to keep upright and ready to spring into action, using both sides of the body together or separately as needed.
The child may have a problem with bilateral integration, the neurological process of connecting sensations from both sides of the body. The result is poor bilateral coordination, the ability to use both sides of the body together. For instance, she may struggle to gallop, skip, or pedal a bicycle.
She may have difficulties positioning her body and maintaining her equilibrium. Getting into different positions, such as kneeling or stretching to her tiptoes, without tipping over may also be a challenge.
Often the child will have poor ocular (eye movement) control, affecting binocularity - the use of both eyes together as a team. This will hinder depth perception, body movement, motor planning, and reaching for objects.
Source: The Out of Sync Child (pgs. 75, 76).
Brad presents with the symptoms of postural disorder, although I did not notice them until a skilled occupational therapist brought them to my attention. He has weak trunk strength and he's floppy. However, these symptoms have decreased with therapy. (He receives occupational therapy three times per week, and we do daily exercises.) He still drools. No sign of pedaling, although he is only 2.5 years old, so that may not be significant. His bilateral coordination is weak, as evident when he completes a puzzle or the shape-sorter.
As an aside, perhaps the apple doesn't fall far from the tree. I have terrible depth perception, and low muscle tone. (Of course, I haven't been to the gym in a decade but that's a different story.) However, what ever sensory issues I have never interfered with acquisition of language, as I believe Brad's issues are.
So I think the "ho-hum" label is a keeper for Brad. After all, I've never been one to avoid a label or the doctors/therapists that apply it.
Is your child "ho-hum"?
Thursday, September 11, 2008
Friday, September 5, 2008
Brad at 24 months
Per Early Intervention -
Receptive communication: 10 months
Expressive communication: 14 months
Brad at 31 months
Per Mullen Scales of Early Learning, administered by Brad's developmental pediatrician -
Receptive communication: 30 months
Expressive communication: 35 months
Receptive language: 20 months improvement over 7 months.
Expressive language: 21 months improvement over 7 months.
Sunday, August 31, 2008
Friday, August 29, 2008
1) True improvement based on maturation,
2) Intervention, or
3) Over-diagnosis at age 2.
The merits of these reasons is the source of much debate. In this regard, let's examine the public remarks of Professor Camarata, the controversial doctor whose research provides support to Einstein Syndrome author Thomas Sowell and shock jock Michael Savage. In a published article, he states:
The broader question is how one can tell if a child has mental retardation, autism or other pervasive developmental disorder, or language disorder-or will simply "grow out" of the problem. [Emphasis mine.]Camarata doesn't appear to allow for the possibility that an individual can have a pervasive developmental disorder and grow out of the diagnosis. He phrases it as an either/or proposition.
But when we consider these studies in the aggregate, is it even plausible to source all of this movement off the spectrum to "over-diagnosis at age 2" or misdiagnosis. After all, each of these children were formally diagnosed (probably videotaped), and the results of the research were peer-reviewed. Is it even plausible that the researchers conducting the studies were guilty of sloppy diagnostics?
This blogger believes that the first reason - true improvement based on maturation - is the likely source of movement off the spectrum. I believe that the subjects legitimately met the DSM-IV criteria for PDD-NOS at age 2, and later grew out of the diagnosis. This belief is corroberated by the research, as well as my anecdotal experience.
Wednesday, August 27, 2008
Diagnostic Stability in Very Young Children with Autism Spectrum Disorders.
1: J Autism Dev Disord. 2007 Oct 9; [Epub ahead of print]
Autism Spectrum Disorders (ASD) diagnosis in very young children may be delayed due to doubts about validity. In this study, 77 children received a diagnostic and developmental evaluation between 16 and 35 months and also between 42 and 82 months. Diagnoses based on clinical judgment, Childhood Autism Rating Scale, and the Autism Diagnostic Observation Schedule were stable over time. Diagnoses made using the Autism Diagnostic Interview were slightly less stable. According to clinical judgment, 15 children (19%) moved off the autism spectrum by the second evaluation; none moved onto the spectrum. Results indicate diagnostic stability at acceptable levels for diagnoses made at age 2. Movement off the spectrum may reflect true improvement based on maturation, intervention, or over-diagnosis at age 2.
Variability in outcome for children with an ASD diagnosis at age 2.
1: J Child Psychol Psychiatry. 2007 Aug;48(8):79
BACKGROUND: Few studies have examined the variability in outcomes of children diagnosed with autism spectrum disorder (ASD) at age 2. Research is needed to understand the children whose symptoms - or diagnoses - change over time. The objectives of this study were to examine the behavioral and diagnostic outcomes of a carefully defined sample of 2-year-old children with ASD, and to identify child and environmental factors that contribute to variability in outcomes at age 4. METHODS: Forty-eight children diagnosed with autism or pervasive developmental disorder not otherwise specified (PDDNOS) at age 2 were followed to age 4. Diagnostic measures included the Autism Diagnostic Observation Schedule - Generic (ADOS-G) and clinical diagnosis at ages 2 and 4, and the ADI-R at age 4. RESULTS: Diagnostic stability for an ASD diagnosis (autism or PDD-NOS) was 63%, and for an autism diagnosis was 68%. Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2. No differences between children with stable and unstable diagnoses were found for amount of intervention services received. Among the children with unstable diagnoses, all but one continued to have developmental disorders, most commonly in the area of language.
CONCLUSIONS: The stability of ASD was lower in the present study than has been reported previously, a finding largely attributable to children who were diagnosed at 30 months or younger. Implications for clinical practice are discussed.
Predictors of Optimal Outcome in Toddlers Diagnosed with Autism Spectrum Disorders Journal
Journal of Autism and Developmental Disorders
Received: 30 October 2006 Accepted: 14 November 2006 Published online: 6 January 2007
Abstract A diagnosis of autism spectrum disorder (ASD) is usually taken to be permanent. In this study, 13 two-year-old children with ASD lost the diagnosis by age 4, at which time they scored within the normal range on standardized measures of cognitive and adaptive functioning. No differences were found in symptom severity, socialization, or communication between children who lost the ASD diagnosis and children who did not, but children with PDD-NOS were significantly more likely than those with full autistic disorder to move off the spectrum. The clearest distinguishing factor was motor skills at age 2. Results support the idea that some toddlers with ASD can lose their diagnosis and suggest that this is difficult to predict.
Sunday, August 24, 2008
Sunday, August 17, 2008
1) "I always knew something was wrong." These parents are panicked and want a diagnosis ASAP.
2) "What????" These parents are caught totally off guard. They just want to know if their child is actually autistic, a seemingly modest goal.
This post is for parents in the second category. If you just want to know if your child is autistic, learn from my research and my mistakes:
a) Don't accept the opinion of an administrator, early intervention or any semi-professional.
b) Seek out a developmental pediatrician. If you live in the sticks, and there are none near you, fly or drive to your closest metropolis.
c) If you get an appointment with a developmental pediatrician, by all means, make sure it's for a FORMAL EVALUATION. Brad's first evaluation was informal; it lasted one hour and did not involve a formal test, e.g. ADOS or CARS. I got the appointment without a wait; literally, she saw Brad the first business day after I called her office. His second opinion, which I blogged about here, was the real deal, and left me feeling confident in the diagnosis. A formal evaluation may take months to obtain, but it's worth the wait.
Feel free to share your stories below, and leave additional tips for parents seeking an evaluation.
A Little Bit Autistic is feeling a little bit less autistic today.
On Friday, Brad was evaluated for a second opinion on his PDD-NOS diagnosis. Bottom line: still PDD-NOS, but the prognosis and plan for treatment are significantly changed.
Brad's evaluation lasted three hours. The developmental pediatrician is conducting a study relating to autistic spectrum disorders, the observation for which would be concurrent with Brad's evaluation. (I consented to the study in advance.) She administered two tests: Mullens and ADOS. In lay terms, Mullens is intended to measure Brad developmentally, but is not an "autism test" per se. ADOS is a standard test used to evaluate autism.
Thirty minutes into Mullens, the doctor offered an unsolicited remark: "I don't think this is PDD."
My jaw dropped. I was stunned. I didn't press her for clarification. I just sat in stunned silence.
During the ADOS test, Brad did well, but demonstrated PDD traits, e.g. mild aloofness and repetitive speech.
When all was said and done, the doctor told me that Brad has PDD, but just barely. One might even say he has the much-derided "checklist PDD" that we discussed in this thread, i.e. he meets the diagnostic criteria but perhaps lacks the essence of PDD. She told me that she won't include Brad in her study out of concern that he will "mess up the data." She added that his prognosis is good. It's extremely unlikely that PDD will be part of Brad's life long-term.
She added a novel observation: his fine motor skills and coordination are lagging for his age. She gave him two new diagnoses: hypotonia and lack of coordination. This was not entirely surprising, since Brad is in occupational therapy and his therapist had informed me of these issues. I just figured that they were part and parcel of PDD. The doctor seemed to indicate that his fine motor and coordination deficits go beyond the norm. FYI: Brad never missed a motor milestone when he was an infant. And to clarify, he eats fine with a spoon, and can thread a bead, so it's not like he's obviously or severely impaired.
Because of the motor/coordination issues, we're going to explore two possible neurological causes:
1) Mitochondrial disorder. This is best known as the metabolic disorder suffered by Hannah Poling, the subject of a controversial and highly-publicized government settlement. Brad is going to have a series of blood and urine tests. If anything comes up positive, then we get a referral for another doc.
2) Jaundice. Brad developed jaundice a few days after he was born. I don't know the levels, but it required him to undergo phototherapy, i.e. the "billi-lights". Apparently, severe jaundice can cause brain damage. However, I doubt there will be a connection because I believe Brad's billliruben was never dangerously high.
As for treatment, the doctor was very happy with the present composition of services. Her only recommendation was to add physical therapy to the roster to address the low muscle tone (hypotonia).
Saturday, August 9, 2008
2) No proof of effectiveness for autism;
3) Some of the treatments (e.g. chelation) are predicated on the theory that vaccines cause autism, which theory is unsupported;
4) Some of the treatments haven't been proven safe (see, e.g. hyperbaric oxygen chambers and "oxidative stress relief"); and
5) The morbidity rate.
Part of the problem, of course, is that these treatments aren't regulated and are not prescribed and administered by mainstream physicians, hence the "alternative" label. If one of the treatments described in this post were actually proven effective (by hard science, not subjective testimonials) and move over to the mainstream, only then would I consider them for Brad.
Friday, August 8, 2008
And on that note, summarized below are three mainstream studies of alternative biomedical interventions. To my knowledge, these studies were just announced, and have yet to be conducted.
The "autism diet" (gluten free/casein free) [via AutismVox]:
For the double-blind study, funded in its initial phase by supplemental funds granted by the Department of Pediatrics, researchers will enroll 38 autistic children ages 3 to 9. They will look at the influence of gluten and milk proteins in the intestinal function. Gluten is a protein in wheat; casein and whey are proteins in milk. Casomorphin, a peptide in milk; and gliadomorphin, a peptide in gluten, are thought to be related to changes in behavior in these children. Children will be taken off gluten and dairy products before the four-week study and then half will be given gluten/milk powder and half will be given a placebo powder.
Researchers will study intestinal permeability (leaky gut) through urine collection and behavior through psychometric testing.
Fish oil (supplement) [via AutismSpeaks]:
Fatty acids are essential for the development and function of the brain. Evidence suggests that deficiencies in fatty acids may be related to a range of neurodevelopmental disabilities, including autism. Omega-3 fatty acid supplements have been widely marketed as a “treatment” for autism, but have not undergone controlled studies to rigorously evaluate their usefulness in treating the symptoms of autism.
This study will carry out a double blind placebo controlled trial to determine the efficacy of omega-3 fatty acid supplementation in treating symptoms of autism. Participants in the trial will be children diagnosed with autism, randomly assigned to treatment and placebo groups. The treatment will involve 12 weeks of daily omega-3 fatty acid supplementation. Behavioral outcomes will be assessed by parents, teachers, and blinded clinicians to examine changes in mood and behavior following supplementation.
This research will help support or disprove the usefulness of omega-3 fatty acids in the treatment of autism, and allow us to better understand the mechanisms by which fatty acids may exert their effects.
B-12 (injection) [via AutismSpeaks]:
Double-blind placebo controlled trial of subcutaneous methyl B12 on behavioral and metabolic measures in children with autism
Studies have shown that many children with autism exhibit signs of oxidative stress, which causes cellular damage by the presence of highly reactive free radicals. Antioxidants may protect against the damaging effects of oxidative stress, and low antioxidant levels have been observed in children with autism. Nutritional supplementation by injections of the antioxidant methyl B12 is a current alternative medicine treatment for children with autism which has anecdotal reports of clinical improvements. However, the efficacy of methyl B12 to treat symptoms of autism and reduce oxidative stress has not been tested in controlled clinical trials.
This study will carry out an 8 week, double blind, placebo controlled clinical trial in 50 autistic children aged 3 to 8 years. Researchers will evaluate the subjects' behavioral responses to methyl B12 treatment. Additionally, they will monitor the blood levels of antioxidant metabolites, to determine whether methyl B12 treatment can reverse the signs of oxidative stress observed in autism.
This study will help determine whether methyl B12 is an effective treatment for core features of autism, and may identify novel diagnostic markers for treatment responses in autistic subjects.
I'm skeptical of each of the treatments listed above. Nevertheless, like a good autism mama, I'll keep my ear to the ground. The more information, the better. What to do with that information is a whole different story.
Saturday, August 2, 2008
Friday, August 1, 2008
Autistic persons take offense at this slogan, justifiably so. I submit, for TACA's consideration, a new slogan:
"TACA: We Make Stuff Up"
See, TACA states on its website:
One in every 150 children born in the U.S. have been diagnosed with autism.(NOTE: This number does NOT include: PDD, Aspergers and other spectrum disorders. These statistics are endorsed by the CDC, American Academy of Pediatrics, and other federal organizations.)
The CDC, by contrast, indicates:
CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an ASD.... ASDs include autistic disorder, pervasive developmental disorder - not otherwise specified (PDD-NOS, including atypical autism), and Asperger syndrome.
Hat tip to Darwin. Accepting nominations - if you have one, submit your own alternative slogan in comments below.
I have no idea if it's temporary or permanent, or typical or related to autism.
To be continued...
Saturday, July 26, 2008
Friday, July 18, 2008
An Anthropologist on Mars is not a book about autism. Rather, it's a series of case studies which examine the brain's ability to reconstitute "self" or identity when it is injured or diseased. For example, one chapter examines an individual who suffered a severe brain tumor in his 20s. Another chapter examines Temple Grandin, the subject of Thinking in Pictures.
It's a fascinating read, with remarkable subjects. The common theme throughout the book is the nature of the injury or disease, and its relation to self. Of Tourette's, Sacks writes:
Any disease introduces doubleness into life - an "it," with its own needs, demands, limitations. With Tourrette's the "it" takes the form of explicit compulsion, a multitude of explicit impulsions and compulsions: one is driven to do this, to do that, against one's own will, or in deference to the alien will of the "it." There may be a conflict, a compromise, a colusion between these wills....
But the relation of disease and self, "it" and "I," can be particularly complex in Tourette's, especially if it has been present from early childhood, growin up with the self, intertwining itself in every possible way. The Tourette's and self shape themselves each to the other, come more and more to complement each other, until finally, like a long-married couple, they become a single, compound being. This relation is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and sometimes startling performance. For all its intrusiveness, Tourette's may be used creatively, too.
This concept of self echoes statements I've read from neurodiversity advocates. For example, autistic advocate Jim Sinclair states:
Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person.
Moreover, Sinclair rejects the designation "person with autism", preferring "autistic person". Sinclair compares describing an individual as a "person with autism" to describing a man as a "person with maleness."
As illustrated in Sacks' case studies, this concept of self is not unique to autism. In my opinion, while the "I" often fuses with the "it" in a theory of mind sense, the "I" does not negate the "it" in the biological sense. Autism - the "it" - exists independent of individual as a genetic condition. (Of course, the genetics are yet to be fully explicated.)
The analytic framework set forth above sheds light on the differences between the pro-cure and neurodiversity camps. In basic terms, neurodiversity advocates reject the separateness of the "it", while "curebies" refuse to acknowledge, or value, the impact of the "it" on identity.
Sunday, July 13, 2008
Friday, July 4, 2008
Saturday, June 28, 2008
Sunday, June 22, 2008
Friday, June 20, 2008
Brad adores Jeremy, who in Brad’s eyes can do no wrong. Brad takes cues from Jeremy when they play together, shadowing Jeremy and having a great time doing so. Lately, Brad will walk up to Jeremy and gently (or not so gently – Brad’s getting to be almost as big as Jeremy, and both are at or above the 90th percentiles for height and weight, so you do the math) push Jeremy, or grab his hair, or just tackle him. It’s very clear that Brad means it in a playful way, and does it to interact with Jeremy. Laura said - I think correctly - that it’s Brad acting socially like a kid about a year younger than him would. If you could see it, you’d realize that completely makes sense.
Jeremy loves Brad too, and usually will involve Brad in his play. Clearly Jeremy does not understand Brad’s condition, which is not surprising given that Jeremy is only 4. I figure that kids can begin to grasp the concept of autism around the time they can understand something like death or the value of money – does that sound about right? For now, Jeremy still sees Brad as a “baby”, which is how Jeremy pretty much views all kids who he can tell are younger than he is, and which is probably the way most kids Jeremy’s age would characterize a younger sibling whether on the spectrum or not. When Jeremy gets frustrated with Brad, it’s usually because he wants Brad to do or stop doing something right away, since trying convey a non-basic, time-sensitive message to Brad (like “don’t skip that song on the CD”) rarely meets with success. Usually when this happens, Laura, myself or our nanny (have we discussed her before? She’s beyond amazing BTW, and that might be an understatement) intervenes and we handle the situation. It’s nice that Jeremy is still young enough that he almost never dwells on anything negative; that has got to be one of the best things about kids his age. But I digress.
So as usual, this has led me to wonder about some things. We’ve all heard about how autism can affect parents and marriages, but have there been studies of the effects of having an autistic sibling? Can something like that even be meaningfully, let alone reliably, gauged? Do they tend to be more likely to have behavioral issues than other similarly situated kids who don’t have siblings on the spectrum, or is just the opposite – are they more tolerant and well behaved due to the increased patience they must learn in dealing with their autistic sibling(s)? Does it vary depending on the severity of the sibling’s autism? These questions can segue into the flip side – do autistic children benefit behaviorally from having a non-autistic sibling? How can that be measured? Is the benefit more pronounced when it’s an older sibling, or does that largely not matter?
Just a few more not so burning questions from Brad’s dad. Until next time…..
Wednesday, June 18, 2008
I see a pattern:
- The Branch Davidian compound in Waco, TX, lead by cult leader David Koresh, famously raided in 1993.
- The Yearning for Zion Ranch in Eldorado, TX, lead by FLDS cult leader Warren Jessup, famously raided in April of this year.
- The Thoughtful House Center for Children in Austin, TX, founded and directed by Andrew Wakefield, known for attempting to "recover" autistic children with biomedical treatment.
Each group is located in TX. The philosophy of each group is tinged with anti-government conspiracy theories. Each is led by a charismatic leader who inspires near blind faith in their respective followers. Is the biomed movement a cult? Draw your own conclusions.
Monday, June 16, 2008
Friday, June 13, 2008
Friday, June 6, 2008
- Brad is identifying colors consistently.
- He's mastered the shape sorter, although he does it entirely with his left hand.
- We've added 2 more hours per week of OT, bringing his total service hours to 14.5 per week.
- In the last week, his play has become more rigid. Also: he's flapping his arms and toe walking a little.
Wednesday, May 28, 2008
Saturday, May 17, 2008
List ten great things about your child with autism. If you think your child would like to participate, let them express themselves. Maybe ask him or her to list a few things about themselves they would like to share. They do not have to answer in words, feel free to share photos, artwork, or upload video or audio. Anything goes, in the name of self-expression!
2. His enthusiasm for playing rough-house with his brother.
3. His appreciation for the group I call his harem, consisting of his various female therapists. (Brad loves his girlfriends.)
4. His love of sweet potato and squash.
5. He's a bruiser, in the 97% for height and 90% for weight. (Take that, would-be high school tormenters.)
6. He follows directions like a champ.
7. He blows kisses.
8. His booty shake.
9. He likes to pretend he's a kitty cat.
10. His cheeks.
There appear to be two basic types of thinking in intellectually gifted people who have Asperger's or high functioning autism...The two types are totally visual thinkers like me; and the music, math and memory thinkers which are described in Thomas Sowell's book, Late Talking Children. I have interviewed several of these people, and their thoughts work in patterns in which there are no pictures. Sowell reports that in the family histories of late talking, music math and memory children, 74 percent of the families will have an engineer or a relative in a highly technical field such as physics, accounting, or mathematics. Most of these children also had a relative that played a musical instrument.
As I've blogged about here, Sowell asserts that the subjects of his book, including Albert Einstein, are not autistic. While Grandin disagrees with this point, she appears to acknowledge that there is a fundamental difference in the way a Sowell late talker thinks versus the way she thinks. Which begs the question: is "music, math and memory" thinking a third category of thought process, or is it really just neurotypical thought? Or maybe late talkers are just A Little Bit Autistic, thus the distinction in thinking process?
Thinking in Pictures provides insight in this regard because it was written by an insider. As the title denotes, Grandin thinks in pictures. She writes:
My imagination works like the computer graphics programs that created the lifelike dinosaurs in Jurassic Park. When I do an equipment simulation in my imagination or work on an engineering problem, it is like seeing it on a videotape in my mind. I can view it from any angle, placing myself above or below the equipment and rotating it at the same time. I don't need a fancy graphics program that can produce three-dimensional design simulations. I can do it better and faster in my head.
I create new images all the time by taking many little parts of images I have in the video library in my imagination and piecing them together. I have video memories of every item I've ever worked with -- steel gates, fences, latches, concrete walls, and so forth. To create new designs, I retrieve bits and pieces from my memory and combine them into a new whole. My design ability keeps improving as I add more visual images to my library. I add video-like images from either actual experiences or translations of written information into pictures.
Further, Grandin recalls that she did poorly in math as a student. Math is pure abstraction. Without a visual association, she appears to be at a loss.
Before I read Thinking in Pictures, I watched this video of Grandin, in which she displays modest wit, charm and humor. So I was surprised to learn that, by her admission, she has almost zero social intuition. That is, she doesn't intuit social cues. She studies them, like a scientist, and has learned to mimick them.
While Temple Grandin's accomplishments are extraordinary, I'm not certain that her mind isn't ordinary in the autistic sense, or generally representative of the way many autistics think. Research seems to suggest that her thinking is rather, for lack of a better word, typical. For an atypical thinker.
Well of course that didn't happen. The focus of the visit was on the services he's receiving, rather than his progress. The developmental pediatrician wasn't happy that he was just at 12.5 hours. (Of course, I think 12.5 hours is a lot, but I'm new to the game.) She suggested that I lobby for more hours with my specialty provider - the one who admininsters Floortime, except that it's really not Floortime.
I'm not going to do that, but I am going to take a different suggestion of hers - milking my insurance. Brad's covered by Blue Cross, and as luck would have it, the coverage is pretty good. He qualifies for 60 OT and SLP (combined) visits per calendar year. So I have added another hour of OT to Brad's schedule, starting on Monday. I'd like to add another hour of private SLP, although those services are in high demand, so there's a wait.
Friday, May 16, 2008
Tuesday, May 6, 2008
- We retested Brad's hearing. The verdict: no hearing loss. The fluid in his ears is gone.
- Brad's speech continues to improve. He's labelling everything now, and putting two words together. But a new symptom is emerging: scripting. Brad has block letters that spell his full name "BRADLEY". I was holding the E, and it landed on his face. I said "I'm sorry" in a sing-songy voice. Now, every time he sees a capital E, he says "I'm sorry."
- Brad's SLP called in sick last week. The smackdown has been rescheduled to this Wednesday.
Update: The BE and the SLP had their tete a tete; no blood was drawn. The SLP remarked that the BE isn't administering Floortime, in the true sense. No surprise here. Status quo will continue because I'm not going to complain.
Monday, April 28, 2008
Brad's SLP, my most trusted advisor in all things Brad, is going to sit in for one of Brad's Floortime sessions, administered by the "specialty provider", who is really an ABA provider (also referred to as a "BE"). The SLP is going to try to give the BE some gentle guidance on Floortime.
Who will be the victor?
Monday, April 21, 2008
When...behaviors are falsely characterized as unique symptoms of a tragic disorder, "severe autism," the repercussions are harmful to all autistics. Those with the Asperger's diagnosis may be denied access to services because of the mistaken view that they can have only mild problems.
Conversely, autistics who fall into other diagnostic categories are at risk of being written off as worthless burdens to society. And the prevalence of "severe autism" stereotypes, often perpetuated by nonprofit groups that drum up publicity for their fundraising activities by depicting autism in the most pathetic light imaginable, has caused many people to support eugenics research to eliminate the entire autistic population by means of prenatal testing and abortion.