Image by Photo by Me-Liss-A (flickr.com)

This question posted to the forums: “What’s the smartest thing anyone ever said to you about your autistic child?”

Said one respondent who’s 3-year-old daughter was diagnosed two years ago, “She is progessing well and although she still shows signs of autism on a daily basis, my wife and I sometimes question the early diagnoses.  With that said, someone once told us that whether it is autism or not, she still has some developemental issues which need to be addressed.  ‘Concentrate on those things as opposed to getting all hung up on the bigger autism diagnoses.’  This comment helped us do just that and feel as though it provided a bit more focuse on her treatment moving forward.”

“Once our now-17 year-old son was diagnosed with autism one of the doctors who saw him said that if he wanted to do something, he would do it,” said another. “The secret was in motivating him to want to do it. I never forgot that and it was so true. It may sound trite, however, I was coming from a place in my mind that said you can’t reach
people with autism (and I) learned that oh yes you can!”

Another was once at an autism conference with a fabulous keynote speaker.  “She was an ABA specialist and author and had worked with numerous kids over the years.  She said that every time we take our kids out in public we need to remember all the eyes that are watching us.  Not in a negative way, like we’d better be perfect in all we do or else.  But she said that sometimes it’s more important to consider the impact and impressions we leave on others than to work on every single behavior our kid is exhibiting.  As people see us, they see how we value our child; how we respect him
as an individual and his inherent worth to us and society.  As others see how we value him, that directly affects how they see people with autism and disabilities in general. I try to be more aware of my interactions with my son in public, not just for his benefit, but also to teach others around us. For example, if he’s noisy or having a hard time staying calm somewhere, I normally try to speak to him calmly to defuse things.  In public, I also try to narrate and
explain his feelings and the reasons for the behaviors, allowing others to overhear so they can understand.  Hopefully, the next time the other people near us see someone in a similar situation, they would remember and understand, say, that maybe he’s just tired today or he’s feeling a bit stressed.  It’s better than just seeing
someone that seems strange and maybe a bit scary and not knowing why.”

And the smartest thing said to this respondent: “‘So, now you know. Make the best of your knowledge.  It is a blessing if you treat it as such.’”

My own smart comment came from a doctor, said to Jill way back in the hospital when Alex was just a year old: “‘Life isn’t a matter of having a good hand. It’s a matter of playing well the cards you’re dealt.’”

***

LinkedIn’s groups are excellent places to pick up advice and contacts professional and otherwise. I’m a member of Autism Advocates, Linked to Autism, Autism Speaks, Parents With Patience, Autism Advocacy, Special Education Innovators, and Special Olympics, among others.

The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

The terrible two’s are really just another name for “regressive autism spectrum disorder”?????—-so suggests a professor of Communication Sciences and Disorders at Temple University. From yesterday’s UPI.com:

Gerry A. Stefanatos of Temple University in Philadelphia said regressive autistic spectrum disorder describes children who have been diagnosed with autism who demonstrate a history of a regression. The regression refers to a marked loss of previously acquired developmental skills such as language or social ability.

“Often children with regression aren’t being seen by professionals at the time of the loss of skills,” Stefanatos said in a statement. “The parents are aware of a problem, but not sure what it is so they don’t seek medical or psychological help until the symptoms persist for over a year.”

The source for Prof. Stefanatos’ statement is not mentioned in the UPI.com article. It makes sense, somewhat, to make a connection between the terrible two’s and the identification of autism, as two (or even younger) is around the age when autism is often first noted in a child. But saying that terrible two’s—which seem to be pretty common in most children—are, in and of themselves, signs of autism—-might lead to quite an upsurge in people seeking to have their toddlers evaluated for autism.

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

Those with savant syndrome have “quite remarkable, and sometimes spectacular, talents”—such as being able to recite prime number after prime number or to draw the city of Rome with photographic precision—while also having “serious mental or physical disability” (according to one website). Garrett Heaney in Wishtank describes an exchange two individuals who have been diagnosed with savant syndrome, Kim Peek (the model for Raymond in the movie Rain Man, though Raymond is referred to as “autistic” and as an “autistic savant”) and Daniel Tammet, the author of Born on a Blue Day). In particular, Heaney considers this exchange of words between Peek and Tammet:

Towards the end of their first encounter, Kim hugs Daniel and says to him “Someday you will be as great as I am.”

To which Tammet responds, “that was a wonderful compliment, what an aspiration to have.”

Not a bad aspiration for many of us to have, indeed.

There’s a new study by Molly Helt et al. out about recovery from autism in the December Neuropsychology Review. Kev at Left Brain/Right Brain has an overview; here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s discussion over the specifics of the study at Kev’s blog; I’d like to consider the ramifications of the whole notion of “recovery from autism” as it can affect parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.

Recovery can be distracting. It can lead you to make “curing” a child of autism completely and of making her or him “typical” and “normal,” over and above seeking to help a child develop, learn and grow as much as she or he is able. It can lead you to focus on a single long-term wish of “recovery,” so that those smaller gains, while remarked upon, seem like small steps on the path toward a bigger something else,”recovery.”

Further, the notion of “recovery from autism” suggests that autism is something to be recovered from; is a disease or illness. While some do prefer to view autism this way, such a view can be detrimental to an understanding of autism as a lifelong condition. And, it can be harmful not only to the perception of autism, but also simply to autistic persons themselves. Sure, you can’t catch autism, but the more that is heard about autism as “maddening” and devastating, debilitating, etc.,, etc., and the more that the “behavior problems” of autistic children are the main thing that is described, the more a seed is planted in people’s minds that doing away with autism, or at least “getting the autism out of one’s child,” is what has to be done. In the name of recovery, some have tried treatments (such as chelation, often of an “alternative” nature, that have no evidence beyond anecdotal reports to recommend them, and that have sometimes proven dangerous, if not fatal, to a child’s health.

The entire December issue of Neuropsychology Review is about autism, with the title of “Autism Spectrum Disorders: Complex, Controversial, and Confounding.” While the article on “Can Children with Autism Recover?” may get a great deal of attention, other studies to note are on the rising prevalence rate and the proliferation of theories; regression and autism; the “triad of impairments“—social interaction, communication, and flexible imaginative—used to diagnose autism; and bridging the gap between neuropsychological evaluations and educational planning.

I know there’s a lot of varying opinions about “recovery from autism.” When my son was first diagnosed, and in the wake of reading books like Catherine Maurice’s Let Me Hear Your Voice: A Family’s Triumph Over Autism, it seemed that we could not not try to “recover” Charlie. But then I started to realize that I was valuing “recovering” Charlie (whatever that meant) over cheering on, appreciating, celebrating the small gains Charlie made and, too, life with Charlie.

I hope I’m not so distracted anymore.

When Charlie was formally diagnosed with autism in July of 1999, “autism” seemed like something strange and puzzling and (to be very honest) unfathomable to me. I didn’t know anything about it, and I didn’t understand why it was necessary to apply such a “label” onto my toddler.

Nine years later, and not only do I know a great deal more about autism (with much more still to learn). It seems that people in general know a lot more autism, or are at least familiar with the word; it’s been some time since I said “autistic” and someone said back to me, “You mean he’s artistic?”.

At 10 months, Charlie’s then-pediatrician noticed that he had a “minor gross delay”: He’d just started rolling over at 9 months and, too, just started to sit independently. He had other gross motor delays and, taken on their own, these didn’t, and don’t, add up to an autism diagnosis. But Charlie, as I realize in thoughtful hindsight, did not display joint attention. He loved to be carried and held and smiled; he tended to stay put in one spot. Now, every time I read about some researcher’s latest new method for identifying autism in infants, I wonder, what would such a test have noted about Charlie? And I as often think, it’s likely they would have noted “something” about Charlie—-that, today, he might have been diagnosed at an even younger age; researchers are, indeed, evaluating the accuracy of autism screening tools for children 18–24 months of age.

A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.” A cohort of more than 400,000 children—all children born in Denmark from January 1, 1994, through December 31, 1999—were studied. From the abstract:

Results Statistically significant shifts in age at diagnosis were observed for autism spectrum disorder; children diagnosed before age 9 years in the cohorts born between January 1, 1994, and December 31, 1995, between January 1, 1996, and December 31, 1997, and between January 1, 1998, and December 31, 1999, were on average diagnosed at ages 5.9 (95% confidence interval [CI], 5.8-6.0), 5.8 (95% CI, 5.7-5.9), and 5.3 (95% CI, 5.2-5.4) years, respectively. The relative risk comparing the 1996-1997 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.20 (95% CI, 0.86-1.67), which decreased to 1.10 (95% CI, 1.00-1.20) at age 11 years. Similarly, the relative risk comparing the 1998-1999 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.69 (95% CI, 1.24-2.31), which decreased to 1.23 (95% CI, 1.11-1.37) at age 11 years. Similar results were observed for childhood autism.

Conclusions Shifts in age at diagnosis inflated the observed prevalence of autism in young children in the more recent cohorts compared with the oldest cohort. This study supports the argument that the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.

When Charlie was just diagnosed and shortly after (in 1999-2000), we were often told that he—he was 2-3 years old then—was “very young” to be diagnosed. Now, it seems standard for children to be diagnosed by the time they’re the age Charlie was when he was diagnosed with autism back in 1999. It seems more than obvious to me that we would have been told that they were seeing “red flags” about, who knows, 6-month-old Charlie’s development, and we would have started out on the road to a diagnosis even earlier than we did. A summary of the articles in the December Archives of Pediatrics and General Medicine displays two graphs, which show that, between the two birth cohorts studied (one from 1994-1995 and the other from 1998-1999), the age of a child at the time of autism diagnosis decreased, even as the prevalence rate has been increasing.

Again, the authors of the study note that it’s possible that “the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.” Thus, early detection and diagnosis of autism—-and increasingly earlier detection and diagnosis, at that—are, it can be argued, contributing to the increase in the prevalence rate of autism. Our ability to better diagnosis autism isenabling us to identify autism earlier in younger children and this is a contributing factor to the rise in autism cases. There’s not so much an “autism epidemic” occurring, as that our knowledge about autism is growing and will, it seems and I hope, continue to.

Autistic children responded to sounds one-fiftieth of a second slower than a group of non-autistic children in research conducted at Children’s Hospital of Philadelphia. 64 autistic children aged 6 to 15 listened to a series of rapid beeps through headphones while wearing a helmet-like device. The device recorded their brain’s response to the sounds and their brain waves were then compared with responses in a group of non-autistic children. From the Associated Press via First Coast News:

“We tend to speak at four syllables per second,” said Timothy Roberts, the study’s lead author and the hospital’s vice chairman of research. If an autistic brain “is slow in processing a change in a syllable … it could easily get to the point of being overloaded.”

Researchers now need to test these preliminary findings on younger children, and hope that their technique—-which use noninvasive technology called magnetoencephalography (MEG)—might be used to diagnosed children as young as 1 with autism. The results of the study will be reported tomorrow at the Radiological Society of North America meeting in Chicago.

Other methods currently being developed to diagnose autism in very young (1 year and under) children involve studying babies’ eye movements and eye tracking; looking at whether a toddler focuses on another person’s mouth and eyes, and assymetry in infants.

Auditory processing delay is something that Charlie has had all along. When he was a year and two years old, I wasn’t yet able to understand how not being able to “process” sounds did not mean that he had a hearing disability. While he seems to hear everything, his responses are different and, indeed, often delayed.  How might the new method being developed distinguish between a child who might be autistic and a child with a hearing problem?