IACC Call for Nominations Announced – October 28, 2011

28 Oct

With the passing of the Combating Autism Reauthorization Act (CARA), the IACC will continue to meet and plan autism research strategy. The terms of the original members of the IACC ended with the sunset of the original Cobating Autism Act (CAA). Those members can serve again, but the nomination process is now open for the next installment of the IACC:

IACC Call for Nominations Announced – October 28, 2011

With the enactment of the Combating Autism Reauthorization Act of 2011, the Department of Health and Human Services (HHS) has been authorized to continue to support the Interagency Autism Coordinating Committee (IACC) until September 30, 2014 and is seeking nominations for public membership on this committee. The Secretary of Health and Human Services, who will make the final selections and appointments of public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, but current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted.

The call for nominations will be open from October 28, 2011 – November 30, 2011. Please see the announcement below for detailed information regarding the requirements and how to submit a nomination.

2011 IACC Call for Nominations Announcement
IACC October 28, 2011 News Update: Interagency Autism Coordinating Committee to Continue into 2014; HHS Seeks Nominations for Public Membership

Karen McCarron asks for new trial, claims she believed Katie would be resurrected without autism

27 Oct

Karen McCarron was the mother of a beautiful daughter. I don’t think I will ever forget the image of Katie playing with her teletubbie doll. In 2006, Karen McCarron was tried and convicted of the murder of Katie.

In Convicted child killer Karen McCarron wants new trial, we find that Karen McCarron wants a new trial. She claims her attorney was not doing his job properly and that she (Karen) was suffering from religious delusions at the time:

Fischer said McCarron believed she was “not killing her (daughter) forever and Jesus Christ would resurrect her,” similar to a passage McCarron read in the Bible, and also believed her daughter would be resurrected without autism. Only later when McCarron realized her daughter was not being resurrected did she “snap out of it,” Fischer later said.

Recall that Karen McCarron was a doctor. A pathologist. The unfortunate fact is that Karen McCarron like had ample experience with the fact that when people die, they don’t get resurrected.

Let’s recall what Karen McCarron had to say during her 2006 trial:

……..McCarron told her defense attorney that she felt responsible for Katie’s autism because she allowed her the child [sic] to get vaccinated.

Katie was suffocated with a garbage bag. A police technician examined a bag entered as evidence for DNA:

According to Midden, a DNA substance was retrieved after she noticed possible teeth marks on the inside of the bag.

Possible teeth marks on the inside of the bag. Katie fought to live. Karen McCarron must have fought to kill Katie.

Rereading these descriptions is extremely painful, and Katie isn’t even a relative. I’ve never met any of the McCarron family in real life. My heart goes out to them as this story gets dragged up again.

A Parent’s Guide to Autism Spectrum Disorder

27 Oct

The National Institute of Mental Health in the U.S. has put out a short book (27 pages) to inform parents about Autism. A Parent’s Guide to Autism Spectrum Disorder can be read online, downloaded as a pdf or purchased as a hard-copy.

The book is broken down into chapters:

What is autism spectrum disorder (ASD)?

What are the symptoms of ASD?

How is ASD diagnosed?

What are some other conditions that children with ASD may have?


How is ASD treated?

How common is ASD?

What causes ASD?

What efforts are under way to improve the detection and treatment of ASD?

How can I help a child who has ASD?

For More Information on Autism Spectrum Disorder

Here’s an example–the first chapter “What is autism spectrum disorder (ASD)?”:

What is autism spectrum disorder (ASD)?

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.

ASD is diagnosed according to guidelines listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition – Text Revision (DSM-IV-TR).1 The manual currently defines five disorders, sometimes called pervasive developmental disorders (PDDs), as ASD:

Autistic disorder (classic autism)
Asperger’s disorder (Asperger syndrome)
Pervasive developmental disorder not otherwise specified (PDD-NOS)
Rett’s disorder (Rett syndrome)
Childhood disintegrative disorder (CDD).

This information packet will focus on autism, Asperger syndrome, and PDD-NOS, with brief descriptions of Rett syndrome and CDD in the section, “Related disorders.” Information can also be found on the Eunice Kennedy Shriver National Institute of Child Health and Human Development website and the Centers for Disease Control and Prevention website.

Since the litmus test for some groups will be how this document handles the question of vaccines, here is the section on ASD and Vaccines:

ASD and vaccines
Health experts recommend that children receive a number of vaccines early in life to protect against dangerous, infectious
diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number
of children getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Children in the United States receive several vaccines during their first 2 years of life, around the same age that ASD symptoms
often appear or become noticeable. A minority of parents suspect that vaccines are somehow related to their child’s
disorder. Some may be concerned about these vaccines due to the unproven theory that ASD may be caused by thimerosal.

Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However,
except for some flu vaccines, no vaccine routinely given to preschool aged children in the United States has contained
thimerosal since 2001. Despite this change, the rate of children diagnosed with ASD has continued to rise.
Other parents believe their child’s illness might be linked to vaccines designed to protect against more than one disease, such
as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the
studies has linked autism and vaccines.49, 50 Following extensive hearings, a special court of Federal judges
ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with
the MMR vaccine, caused autism. More information about these hearings is available on the U.S. Court of Federal Claims’ website
at http://www.uscfc.uscourts.gov/omnibus-autism-proceeding.

The latest information about research on autism and vaccines is available from the Centers for Disease Control and Prevention at
http://cdc.gov/ncbddd/autism/topics.html. This website provides information from the Federal Government and independent organizations.

I haven’t gone through it entirely yet, but this looks like a good document. Something relatively short but addressing many of the questions that parents, especially new parents may have. It directly targets parents. However, it does discuss the transition to adulthood and adult living options, but, again, from a parent’s perspective. For example:

Preparing for your child’s transition to adulthood

The public schools’ responsibility for providing services ends when a child with ASD reaches the age of 22. At that time,
some families may struggle to find jobs to match their adult child’s needs. If your family cannot continue caring for an
adult child at home, you may need to look for other living arrangements. For more information, see the section, “Living
arrangements for adults with ASD.”

Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If
you know other parents of adults with ASD, ask them about the services available in your community. Local support and
advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.
Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take
on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or
other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education,
in the community, and elsewhere.

Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults

27 Oct

ASAN have launched a project on navigating college. This includes a website, NavigatingCollege.org and a book “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults” (available for download from the website, and in print from the New Hampshire University Institute on Disability bookstore.

Leaving high school and going to college is complicated for everyone. But if you’re a student on the autism spectrum who is about to enter higher education for the first time, it might be a little bit more complicated for you.

Maybe you’re worried about getting accommodations, getting places on time, or dealing with sensory issues in a new environment. Maybe you could use some advice on how to stay healthy at school, handle dating and relationships, or talk to your friends and classmates about your disability. Maybe you want to talk to someone who’s already dealt with these issues. That’s where we come in.

Navigating College is an introduction to the college experience from those of us who’ve been there. The writers and contributors are Autistic adults, and we’re giving you the advice that we wish someone could have given us when we headed off to college. We wish we could sit down and have a chat with each of you, to share our experiences and answer your questions. But since we can’t teleport, and some of us have trouble meeting new people, this book is the next best thing.

ASAN was able to get you this book with the help of some other organizations. The Navigating College Handbook was developed in collaboration with Autism NOW, and with funding from the Administration on Developmental Disabilities. The University of New Hampshire Institute on Disability is helping us with distribution. We’re really grateful for all of their help in getting this book out.

Good luck, and happy reading! We hope it helps.

ASAN have a Facebook page, Navigating College. They are looking for feedback. From the ASAN Facebook page:

ASAN is looking for high school and college students on the spectrum to give feedback on our new Navigating College handbook, now available for free download. If you’re interested, write us at info@autisticadvocacy.org or comment on this post. If we use your feedback as part of our NavigatingCollege.org website, we’ll mail you a free hard copy of the handbook for you to enjoy!

App May Help Nab Handicap Parking Violators

27 Oct

From Disability Scoop: App May Help Nab Handicap Parking Violators.

A smartphone app may soon be all that’s needed to crack down on illegal parking in handicap spots.

Officials in Austin, Texas are set to vote this week on a resolution that would allow residents to use an app to report handicap parking violators directly to law enforcement.

Under the plan, app users would take a photo of the offending vehicle and submit it to city officials who could send an officer to issue a ticket.

“The only way we’re going to be able to address the problem is if we enlist help from ordinary citizens,” Austin City Councilman Chris Riley told the Austin American-Statesman. To read more click here.

I bring this up because it is a bit of a pet peeve for me. There is a strip mall near where I live where I have often seen people parking in the handicap spot in violation of the law. The strange things I have noticed (in my small sampling, and totally anecdotal experience):

They are almost always SUV’s. Yes, those rugged outdoors people can’t walk the extra 10 feet from a different spot.

I see them in the early morning, when the parking lot is basically empty and other spots are, quite literally, only 10 feet away.

They are in front of the donut shop. Probably has something to do with the early morning times I spot them, but I always find the SUV/donut shop/not wanting to walk an extra 10 feet combination to be highly ironic.

Autism: Faces and lungs

27 Oct

Two stories out in the past couple of days point to physical differences in autistics: faces and lungs. One study found that facial features were quantitatively different in autistic children than in non-autistic children. In MU study links facial features to autism, Janese Silvey wrote:

A new University of Missouri study shows that children with autism have slight differences in facial characteristics — a finding that indicates the disorder develops in the womb.

Kristina Aldridge, assistant professor of pathology and anatomical sciences in MU’s School of Medicine, worked with other researchers at the Thompson Center for Autism and Neurodevelopmental Disorders to analyze 64 boys with autism and 41 typically developing boys ages 8 to 12.

They used a camera to capture 3-D images of each child’s head and then mapped 17 points on the faces. When Aldridge compared the two groups, she found statistically significant differences in facial features.

It is perhaps not surprising that facial differences could be detected. Head circumferences are known to be often larger in autistics, and follow a different trajectory after birth. However, the authors point to prenatal development as possibly at play:

“We can look at a point in time when facial features are being developed and genes that are shared at that time between the face and brain,” Aldridge said. “This narrows the window of time and the candidate genes we might look at.”

A story from WebMD points to Autism linked to unusual shapes in lungs. The study was presented at a conference of the Annual Meeting of the American College of Chest Physicians as Can Bronchoscopic Airway Anatomy Be an Indicator of Autism?

Here is the abstract:

Can Bronchoscopic Airway Anatomy Be an Indicator of Autism?
Barbara Stewart, MD*

Nemours Childrens Clinic, Pensacola, FL

PURPOSE: The purpose of this study is to investigate possible correlation between certain airway anamolies and a definitive diagnosis of autism and/or autistic spectrum disorder.

METHODS: IRB approval was obtained for a restrospective study to evaluate 49 patients with a diagnosis of autism or autistic spectrum disorder. These patients were seen in the pulmonary clinic with a diagnosis of cough that was unresponsive to therapy and who required further pulmonary work-up.Bronchoscopic evaluation of the airway was included as part of that work-up.

RESULTS: Bronchoscopic evaluations revealed the presence of initial normal anatomy followed by double take-offs in the lower airway (or “doublets”)in 100% of the autistic population studied.

CONCLUSIONS: There appears to be a correlation between autistic spectrum disorder and airway anatomy. This is a small study of 49 patients. More investigation is warranted.

CLINICAL IMPLICATIONS: At present autism is diagnosed through subjective observation of “autistic behaviors.” Autistic children with cough may be diagnosed objectively.

DISCLOSURE: The following authors have nothing to disclose: Barbara Stewart, Barbara Stewart

Not surprisingly, it is a pretty small study. (49 patients). This isn’t a study which says, “all autistic kids have these lung differences”. Rather it is, “of the autistic kids we saw in our clinic for persistent coughs had this anomaly”. Even still, it is an interesting finding if real. On thing this points to, that the author notes in the interview is that for this subset of kids, development went on a different path very early:

“I think the whole thing occurs embryologically — when the cell and egg come together and the fetus is formed,” she says. “It’s important for parents to know that.”

As also discussed on CRACKING THE ENIGMA as The many faces of autism

Tough fiscal times in California

26 Oct

Two stories out recently point to the tightening budgets that the

This one isn’t caused by economy. This is mismanagement. In AUDIT: Inland Regional Center must repay $10 million, the Press Enterprise discusses the results of an audit of one of California’s Regional Centers. The Regional Centers are private non-profit organizations which administer funds for California’s developmentally disabled population. Inland Regional Center (IRC) has had problems for the past few years and been placed on probation.

From the Press Enterprise story:

As for the center’s ability to repay the $9.8 million in improper expenses cited in the audit, that would be all but impossible, she said.

“We’re going to have to get direction from the department on that. We don’t have $10 million,” Fitzgibbons said. “We’re really working hard to improve things and do the best job we can do.”

Well, they’ve been audited and IRC has to repay the state $10M. That’s a lot of money, and could mean a reduction in services for the clients of IRC. People who are not responsible for the mismanagement.

The nonprofit agency that serves developmentally disabled residents in Inland Southern California improperly spent almost $10 million and must repay the state, according to a highly critical audit released Friday that found continued widespread problems at the San Bernardino-based Inland Regional Center.

One example of misspent funds was when $1M allocated for services for people with hearing, speech and/or vision impairment was used for the operation expenses in their resource library.

Another recent story: San Diego Unified School District is facing insolvency and possible takeover by the state:

http://www.kqed.org/assets/flash/kqedplayer.swf

California required school districts to budget as though there would be no cuts in funding. However, California also has automatic cuts in place should revenues not meet specific “trigger” levels. If the state misses the revenue levels, they will cut funds to the districts. While special education is not specifically mentioned, Special Education tends to be a focus of budget minded administrators, with comments of “encroachment” commonly heard.

Disability History Museum: We Committed Our Child

25 Oct

This story was discussed online a few years ago. It has haunted me ever since. The story can be found online in Google Books (which carries The Rotarian) or at the Disability History Museum as “We Committed Our Child“.

The image says it all: a happy 1940’s family with a baby of their dreams:

At about 20 months, things changed:

By that time another baby was on the way, for we believed that she should have a companion. Those were happy months as we planned for the second child and tried to prepare Mary Lou for the newcomer, but then came a cloud. One evening when Mary Lou was 20 months old, she became violently ill, having shown signs of only a slight cold. Developing a high fever, she was lethargic and “loppy” for three days. We were frantic. The doctor prescribed rest, and Mary Lou, who loved her bed, cooperated nicely. Within a few days she was trotting about again.

It wasn’t like old times, however, for she tired quickly and was nervous and touchy. She seemed on occasion to be “out of this world” and was upset more and more often by the books that previously had brought hours of delight.

By the time our boy was born, three months later, we were deeply worried. Mary Lou’s nervousness increased; she went into screaming spells with no apparent cause, cast aside her books and toys, gradually stopped talking, became choosy about her foods, and refused to feed herself.

The parents faced 5 options:

1. Keep Mary Lou at home.
2. Place her with some relative or friend willing to assume the burden of her care.
3. Place her in a private institution.
4. Place her in a State institution.

Yes, that’s only 4. The fifth option they considered in theory (and rejected, thankfully): euthanasia.

They discuss the life they expected for their child at home, impact they felt their child had on them and their community:

Also, having witnessed the ridicule and ill treatment which residents of our home town turned on the “village half-wit” and his family, we understood what keeping her with us would mean to our family.

We decided we must look further, in justice to Mary Lou, her brother, ourselves, and the community.

And chose an institution:

So it was that we decided in favor of a State hospital. Taking Mary Lou to it was a heartbreaking experience, but we were fortified with the conviction that in this move lay the sole hope for happiness for all four of us. And we were greatly heartened by the appearance of the place. It resembled a college campus, with pretty brick buildings set amid sweeping grounds. There were no walls, no guards. Patients strolled, played, or rested outside their homelike cottages. In this community, we saw also, there were no thoughtless neighbors gossiping about the unfortunates and jeering at them and their families.

They kept contact with their child, and kept questioning their decision:

More than a year has passed since that day. We have kept in close touch with the hospital by mail and telephone and have made the 100-mile trip to visit our daughter at least once a month. The simple routine of good food, sunshine, and fresh air have done wonders for Mary Lou’s physical health. She is calmer and again is feeding herself. We still do not know what potentialities Mary Lou possesses, but we feel confident that whatever they are, the skilled, hard-working staff will labor earnestly to develop them.

And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely.

The full story can be found at the Disability History Museum. It isn’t very long.

That story was written 66 years ago.

Verbal and non-verbal intelligence changes in the teenage brain

24 Oct

A recent Letter in the Journal Nature takes on the question of how stable is intelligence in teenagers. The title is pretty self explanatory: Verbal and non-verbal intelligence changes in the teenage brain.

Consider teenagers. Is their IQ “set in stone”? By the time a kid is, say, 13, isn’t his/her intelligence pretty well demonstrated? What if you heard that IQ changes can change, up or down, by as much as 20 points during the teenage years? Would you be surprised? I was.

The article attracted my attention on its own merits, but also given the nature of the discussion that forms around early intervention and autism. Statements about “windows of opportunity” and times when the brain is “plastic” are common in discussions of autism focused educational therapies. For example, a study entitled “Early intervention and brain plasticity in autism” or “Autism: a “critical period” disorder?“. Certainly early childhood is a period of great learning and growth, but does the “window” of plasticity “close”?

Here is the abstract:

Intelligence quotient (IQ) is a standardized measure of human intellectual capacity that takes into account a wide range of cognitive skills1. IQ is generally considered to be stable across the lifespan, with scores at one time point used to predict educational achievement and employment prospects in later years1. Neuroimaging allows us to test whether unexpected longitudinal fluctuations in measured IQ are related to brain development. Here we show that verbal and non-verbal IQ can rise or fall in the teenage years, with these changes in performance validated by their close correlation with changes in local brain structure. A combination of structural and functional imaging showed that verbal IQ changed with grey matter in a region that was activated by speech, whereas non-verbal IQ changed with grey matter in a region that was activated by finger movements. By using longitudinal assessments of the same individuals, we obviated the many sources of variation in brain structure that confound cross-sectional studies. This allowed us to dissociate neural markers for the two types of IQ and to show that general verbal and non-verbal abilities are closely linked to the sensorimotor skills involved in learning. More generally, our results emphasize the possibility that an individual’s intellectual capacity relative to their peers can decrease or increase in the teenage years. This would be encouraging to those whose intellectual potential may improve, and would be a warning that early achievers may not maintain their potential.

” More generally, our results emphasize the possibility that an individual’s intellectual capacity relative to their peers can decrease or increase in the teenage years.” Those are quite powerful words.

The authors tested 33 subjects at two time periods:

They were first tested in 2004 (‘time 1’) when they were 12–16?yr old (mean, 14.1?yr). Testing was repeated in 2007/2008 (‘time 2’) when the same individuals were 15–20?yr old (mean, 17.7?yr).

And they found that the while the IQ scores were relatively stable, on average, individuals showed large changes:

The wide range of abilities in our sample was confirmed as follows: FSIQ ranged from 77 to 135 at time 1 and from 87 to 143 at time 2, with averages of 112 and 113 at times 1 and 2, respectively, and a tight correlation across testing points (r = 0.79; P<0.001). Our interest was in the considerable variation observed between testing points at the individual level, which ranged from -20 to +23 for VIQ, -18 to +17 for PIQ and -18 to +21 for FSIQ.

Individuals had changes in verbal IQ of -20 to +23 points, with large changes seen in performance IQ (PIQ) and full-scale IQ (FSIQ) as well. Twenty point swings in IQ, up or down? That’s a lot. As noted before, the study is rather small (33 subjects), but what makes this an impressive study is that they have physical data–brain structure data–to correlate with the changes in IQ. The authors performed MRI scans on the subject. These are shown in a Figure from the paper (click to enlarge):

The authors found that grey matter changed in specific areas of the brain and that these changes correlated with the changes in VIQ and PIQ.

The brain is not just “plastic” in terms of IQ scores, it is still able to physically change during teenage years.

Our findings demonstrate considerable effects of brain plasticity in our sample during the teenage years, over and above normal development.

If an early intervention program were to claim that some kids gained 20 IQ points, it would be huge. (Of course, if they had to admit that some kids lost 20 IQ points, it would also be huge, but in a different way)

But if non-autistic kids can see such large swings in IQ during the teenage years, why not autistic kids? Why not kids with intellectual disability and autism? Just as important as the potential for swings up in IQ are the losses in IQ. What if a kid ends up in a placement that is inappropriate to the level that IQ is lost?

I would love to see a study such as this one on autistic kids, especially those with intellectual disabilities, to track IQ and brain structure during age ranges outside of early childhood.

Autism and diabetes…not ready for prime time

21 Oct

A recent news story on autism discussed: Common Link Suggested Between Autism and Diabetes: Study Implicates Hyperinsulinemia in Increased Incidence of Autism. I figured I’d take a day or two to read up on this and try to write about it. I didn’t figure on Emily Willingham. If you aren’t following her articles and you are into autism and science, you might want to consider doing so now. She’s already covered the story and in much better detail and expertise than I ever could in: Autism and type 2 diabetes linked because “both are increasing”?

Which tells you a lot right there. This is another “there is a temporal correlation, maybe there’s a link” type of story. The journal article is an opinion piece, not a research study. The Opinion Article, Insulin signaling and autism, is by Michael Stern of Rice University and appears in Frontiers In Cellular Endocrinology. In it he makes it clear it is a hypothesis. Unfortunately, Rice University has promoted this far beyond it’s current importance. A press release, including a YouTube video are out.

As Ms. Willingham points out, the language of the press release could be much better. Starting with the title:

Research proposes common link between autism, diabetes
Study implicates hyperinsulinemia in increased incidence of autism

This isn’t a study. It is an opinion piece. It’s great to have new ideas thrown out. I’ve seen many come and go in just the past few years. But let’s consider the opinions calmly and on their merits.

The YouTube video, in my opinion, goes further into overplaying this story:

Well, I think the key point of the hypothesis is that both autism and type 2 diabetes or obesity have the same common underlying cause, which is hyperinsulinemia.

It then goes on into the discussion of the proposed link. It goes on long enough, in my opinion, that the key word, “Hypothesis”, is pretty much forgotten (I had to go back and listen again to hear it).

Stories on this hypothesis carry titles like
Research proposes common link between autism, diabetes
Common link between autism, diabetes identified
and
Potential Link Found Between Type 2 Diabetes and Autism

So far this hasn’t really taken off. It would be good to put the idea in front of some researchers who could actually address it. I don’t think that press releases are the way to do that.

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