Of No Import: Autism Bran Scan Study Excluded Subjects With Intellectual Disability

My Lords, view these letters full of bad mischance.
France is revolted from the English quite, 
Except some petty towns of no import

- The Second Messenger, The Fifth Part of King Henry VI, Act I, Scene I, William Shakespeare

The new MRI Bran Scan study   promises to be a major event with important consequences for diagnosis of autism disorders and  establishment of autism biomarkers. The results could affect our understanding of the nature of autism disorders, what causes them and ... who is, or is not, autistic.  Unfortunately the study, like so many other autism studies and discussions of autism disorders,  excluded those with intellectual disabilities.

It is common in public discussions of autism as reflected in Hollywood movies and major media institutions like CNN, CBC and the New Yorker, government institutions like the IACC, and autism advocacy groups like Autism Speaks and ASAN to talk about "autism" from the perspective of very high functioning persons with autism or Aspergers like Temple Grandin, Alex Plank, Ari Ne'eman, Jon Elder Robison, Amanda Baggs and Michelle Dawson.  Virtually no effort is made to discuss the realities of those very substantial number of persons with autism who are intellectually disabled,  those who constitute the "vast majority", as much as 75-80% of persons with Autistic Disorder.

Even in the  DSM-IV era with its broadly expanded definition of autism which includes all those with Aspergers who, by diagnostic definition, are not intellectually disabled, the total numbers of persons with intellectual disabilities  constitutes between 41-44% of all persons with Autism Spectrum Disorders of any type ... according to two recent CDC surveys. Yet many research projects purporting to study "autism" exclude from their subject pool persons with autism disorders and intellectual disabilities. The autism brain scan study by Ecker et al published in the August 11, 2010 edition of  the Journal of Neuroscience is no exception to this trend. It expressly excludes those persons with autistic disorder who are intellectually disabled:

"Participants. Twenty control adults were recruited locally by advertisement and 20 adults with ASD were recruited through a clinical research program at the Maudsley Hospital/Institute of Psychiatry (London). All volunteers (see Table 1) gave informed consent (as approved by the Institute of Psychiatry and Bethlem and Maudsley Hospital Trust research ethics committee), and had a full-scale intelligence quotient (FSIQ)>75 [WASI (Wechsler, 1999)]."

There may have been ethical and practical limitations which precluded the participation of  autistic subjects with intellectual disabilities. But it does not seem reasonable to this humble father of a 14 year old son with Autistic Disorder and intellectual disabilities to expressly exclude from a study of the brains of persons with "autism" such a large group of autistic persons distinguished in such an important way from those who are the subject participants in the study.  Notwithstanding the express exclusion of autistic participants with intellectual disabilities the study authors draw conclusions about persons with "Autism Spectrum Disorder":

"Discussion

Autism affects multiple aspects of the cerebral anatomy, which makes its neuroanatomical

correlates inherently difficult to describe. Here, we used a multiparameter classification approach to characterize the complex and subtle gray matter differences in adults with ASD.  SVM achieved good

separation between groups, and revealed spatially distributed and largely nonoverlapping patterns of regions with highest classification weights for each of five morphological features. Our results confirm that the neuroanatomy of ASD is truly multidimensional affecting multiple neural systems. The discriminating patterns detected using SVM may help further exploration of the genetic and neuropathological underpinnings of ASD."

It appears that Ecker et al, when drawing conclusions about the brains of persons with "Autism Spectrum Disorder" do not feel that the participation of subjects with "ASD" who are intellectually disabled is necessary, despite the large percentage of the Autism Spectrum that they comprise. It seems that when it comes to persons with autism disorders who are intellectually disabled Ecker et al are of the view that the fact of being autistic and intellectually disabled is of no import, that it is sufficient to categorize the various subtypes of autism spectrum disorder without actually looking at such a large and severely affected component of that spectrum.

Is the Ecker study a precursor of the New Autism Spectrum Disorder in the DSM5? Will those with Autism Spectrum Disorder and intellectual disabilities simply be excluded from autism diagnosis? It is obviously too early to draw such a conclusion but this study with its cavalier exclusion of intellectually disabled autistic subjects from an attempt to establish biomarkers for "autism" raises that possibility. Intellectually disabled autistic adults are largely hidden from society physically in institutions and from public awareness. as reflected in Hollywood and mainstream media portrayals of autism. They are now excluded from some important autism research. In the DSM5 exclusion from the "autism spectrum" itself may be the final result.

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Beef Kofta Kebobs

Who can resist eating things on a stick? It's such a fun way to serve and eat food... and you have to love the fact there are no utensils involved! I knew I had to throw in some kabobs on our Mediterranean Grill Party menu for the recent party we hosted. These Beef Kofta Kebobs were the perfect dish and were quite popular among guests. The secret was all in the seasoning...

At some of my favorite Mediterranean restaurants, I often order kofta kabobs which is generally seasoned ground meat (usually lamb or beef) formed into meatballs. They can be prepared in various ways such as fried, steamed, poached, baked or marinated, but my preference is grilled. For our party, I prepared the following recipe where I increased the measurements of spices and seasonings used for more flavor. The seasoning is key because it's a delicious blend of coriander, cumin, cinnamon, allspice, cayenne, ground ginger and ground pepper. Also included is grated onion, niced garlic and finely minced fresh parsley. I found this is best when prepared a day ahead and formed on the skewers and then grilled the next day.

My husband was in charge of grilling these kabobs and he suggested grilling these first on a piece of foil on the grill. Once the kofta have firmed up a bit from cooking, you can transfer them to the actual grill grate off the foil to get the charred, smoky flavor. Grilling this way prevents the meatballs from fallling through the grill grates and will help keep its shape as it cooks.

Beef Kofta Kebobs
recipe adapted from AllRecipes

4-6 cloves garlic, minced

2 teaspoons kosher salt

1 1/2 pounds ground beef

1/4 cup grated onion

1/4 cup chopped fresh parsley

2 tablespoons ground coriander

2 teaspoons ground cumin

1 tablespoon ground cinnamon

1 teaspoon ground allspice

1/2 teaspoon cayenne pepper

1/2 teaspoon ground ginger

1/2 teaspoon ground black pepper

28 bamboo skewers, soaked in water for 30 minutes

Mash the garlic into a paste with the salt using a mortar and pestle or the flat side of a chef's knife on your cutting board. Mix the garlic into the beef along with the onion, parsley, coriander, cumin, cinnamon, allspice, cayenne pepper, ginger, and pepper in a mixing bowl until well blended. Form the mixture into 28 balls. Form each ball around the tip of a skewer, flattening into a 2 inch oval; repeat with the remaining skewers. Place the kebabs onto a baking sheet, cover, and refrigerate at least 30 minutes, or overnight.

Preheat an outdoor grill for medium heat, and lightly oil grate.Place a piece of foil over the grate and place the skewers onto the foil.

Cook the skewers on the preheated grill on the foil turning occasionally, until the beef has firmed up. Once firm enough to hold it's shape on the skewer, continue cooking the skewers off the foil and on the grate to get a slight char and cooked to your desired degree of doneness.

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Autism Earthquake? The MRI Adult Autism Brain Scan Biomarker

Every day brings reports of new autism studies, most of which are of little or no obvious value, studies which show that a group of high functioning autism subjects are very intelligent, studies which show that some families of autistic children are relatively affluent, studies which purport to define an autistic "smile" and so on. 

News of a study which claims to have established, using MRI bran scans,  a biomarker for autism disorders is different.  An autism biomarker may  have profound and immediate impact on the very definition of autism as "Socrates" of the New Republic has already mentioned  in  Autism Diagnosis by MRI Brain Scan. Socrates gets right to the point while introducing a quote by one of the study authors Declan Murphy of King's College London:

"In an astonishing turn of events, the study due to be published later today, may throw into chaos the process for revising the DSM V definition of Autism.To date Autism has been defined solely on the basis of behaviour - a situation that is set to change radically.

I agree with Socrates. A reliable biomarker may throw the DSM5 autism revision process into chaos.  In my view the drafters of the New Autism Spectrum Disorder in the DSM5  would be wise to stay their autism revision efforts until it can be determined whether this study receives widespread acceptance in the autism research community. If the study results are deemed reliable as indicating biomarker(s) for autism disorders than the revision process should stop until the full implications of the study are determined. There seems to be little point in revising definitions of autism disorders based solely on behavioral characteristics just as reliable biomarkers are being established and defined.

There could be many significant impacts of a reliable autism biomarker.  The study authors speculate that the biomarker will help autistic people and their families by providing quicker, more cost effective diagnosis. I hope they are right.  Private and public treatment and service providers will undoubtedly move to incorporate the use of the biomarkers into their criteria for determining whether to provide treatment or services.  This could actually result in more waiting list delays for the scans which could  simply be added on to existing eligibility requirements for receipt of  services.

Current autism research conclusions including, possibly, epidemiological based vaccine research conducted during periods of changing definitions of autism in the DSM-IIII and IV, may have to be revisited using the new biomarkers. And of course some of the very high functioning persons currently diagnosed with Autism and Aspergers may lose their diagnostic labels ... and their careers as unelected,  self appointed spokespersons for  all "autistics". Debates about the use of functioning labels and differences of autism severity could become obsolete if clear biological/neurological distinctions are identified by MRI Brain Scans.


If  the study results are confirmed and accepted by the autism research community the autism world may have just felt the first preshock of an autism earthquake that will reshape the autism world. 

Information about the new MRI brain scan autism biomarker from the Medical Research Council:

Autism in adults diagnosed by quick, new brain scan

Tuesday 10 August, 2010

Scientists funded by the Medical Research Council (MRC) have  developed  a pioneering new method of diagnosing autism in adults. For the first time, a quick brain scan that takes just 15 minutes can identify adults with autism with over 90% accuracy. The method could lead to the screening for autism spectrum disorders in children in the future.

In the MRC-funded study, scientists at the Institute of Psychiatry (IoP), King’s College London, used an MRI scanner to take pictures of the brain’s grey matter. A separate imaging technique was then used to reconstruct these scans into 3D images that a computer algorithm can assess for structure, shape and thickness – all intricate measurements that reveal Autism Spectrum Disorder (ASD) at its root. Having developed this process, the computer can quickly pinpoint biological markers, rather than personality traits, to assess whether or not a person has ASD.

ASD is a lifelong and disabling condition caused by abnormalities in brain development. It affects about 1% of the UK population (over half a million people), the majority of these being men (4:1 male to female). Until now, diagnosis has mainly relied on personal accounts from friends or relatives close to the patient – a long and drawn-out process hinged on the reliability of this account and requiring a team of experts to interpret the information.

Dr Christine Ecker, a Lecturer in the Department of Forensic and Neurodevelopmental Sciences from the IoP, who carried out the study said:

“The value of this rapid and accurate tool to diagnose ASD is immense. It could help to alleviate the need for the emotional, time consuming and expensive diagnosis process which ASD patients and families currently have to endure. We now look forward to testing if our methods can also help children.”

Professor Declan Murphy, Professor of Psychiatry and Brain Maturation at the IoP, who led the research said:

“We think that our new method will help people with ASD to be diagnosed more quickly and cost effectively. Most importantly their diagnosis will be based on an objective ‘biomarker’ and not simply on the opinion of a clinician which is formed after an interview. Simply being diagnosed means patients can take the next steps to get help and improve their quality of life. People with autism are affected in different ways; some can lead relatively independent lives while others need specialist support or are so severely affected they cannot communicate their feelings and frustrations at all. Clearly the ethical implications of scanning people who may not suspect they have autism needs to be handled carefully and sensitively as this technique becomes part of clinical practice.”

 

Professor Christopher Kennard, Chair of the MRC’s Neuroscience and Mental Health funding board said:

“Bringing together the knowledge gained from neuroscience in the laboratory and careful clinical and neuropsychological evaluation in the clinic has been key to the success of this new diagnostic tool. In fact, this approach to research is a crucial theme throughout the MRC’s strategy. We know that an investment like this can dramatically affect the quality of life for patients and their families. The more we understand about the biological basis of autism, the better equipped we will be to find new ways of treating those affected in the future.”

The research studied 20 healthy adults, 20 adults with ASD, and 19 adults with ADHD. All participants were males aged between 20 and 68 years. After first being diagnosed by traditional methods (an IQ test, psychiatric interview, physical examination and blood test), scientists used the newly-developed brain scanning technique as a comparison. The brain scan was highly effective in identifying individuals with autism and may therefore provide a rapid diagnostic instrument, using biological signposts, to detect autism in the future.

The research was undertaken using the A.I.M.S. Consortium (Autism Imaging Multicentre Study), which is funded by the MRC. Support funding was also provided by the Wellcome Trust and National Institute for Health Research.

The paper, ‘Describing The Brain In Autism In Five Dimensions - MRI-Assisted Diagnosis Using A Multi-Parameter Classification Approach’ is published in the Journal of Neuroscience on Wednesday 11 August.

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Orzo with Roasted Vegetables

Sometimes it can be frustrating to have a picky eater in the household. Well, maybe not really picky, but a person who refuses to eat certain foods that you happen to like. Enter my loving husband. He *hates* eggplant because of it's texture and won't go near any dish that involves it. The only way I can get away with making a dish with eggplant is if we have company who would eat it along with me. When we threw our Mediterranean Grill Party recently, it was the perfect opportunity for me to make this Orzo with Roasted Vegetables since it's chock full of vegetables including eggplant, bell peppers, mushrooms, onions and it's a delicious and colorful side dish to compliment Mediterranean flavors...

Ina does it again with her recipe. I did adapt it a bit by adding some additional vegetables and omitting a few ingredients in the assembly of the dish. But overall, the key part of this recipe is the flavor that comes out when roasting vegetables. There's a slight smokiness that really adds a depth of flavor from roasting diced eggplant, bell peppers, mushrooms and onions... but yet, a subtle sweetness comes through since these vegetables are roasted until caramelized. These vegetables are then tossed with perfectly cooked orzo pasta and dressed with a simple dressing of olive oil, lemon juice, salt and pepper. To finish off the dish, I added some black olives, freshly diced tomatoes, a sprinkling of Italian parsley for color and crumbled feta cheese for a bit of salty tang.

Orzo with Roasted Vegetables
recipe adapted from Ina Garten

1 small eggplant, peeled and 3/4-inch diced
1 red bell pepper, 1-inch diced
1 yellow bell pepper, 1-inch diced
1 red onion, peeled and 1-inch diced
1 cup white button mushrooms, sliced
2 garlic cloves, minced
1/3 cup good olive oil
1 1/2 teaspoons kosher salt
1/2 teaspoon freshly ground black pepper
1/2 pound orzo or rice-shaped pasta
1/4 cup pitted black olives
1/4 cup chopped tomatoes
fresh parsley, chopped for garnish
3/4 pound good feta, 1/2-inch diced (not crumbled)

Dressing:
nocoupons1/3 cup freshly squeezed lemon juice (2 lemons)
1/3 cup good olive oil
1 teaspoon kosher salt
1/2 teaspoon freshly ground black pepper

Preheat the oven to 425 degrees F.

Toss the eggplant, bell peppers, onion, and garlic with the olive oil, salt, and pepper on a large sheet pan. Roast for 40 minutes, until browned, turning once with a spatula.

Meanwhile, cook the orzo in boiling salted water for 7 to 9 minutes, until tender. Drain and transfer to a large serving bowl. Add the roasted vegetables to the pasta, scraping all the liquid and seasonings from the roasting pan into the pasta bowl.

For the dressing, combine the lemon juice, olive oil, salt, and pepper and pour on the pasta and vegetables.

Let cool to room temperature, then garnish with olives, tomatoes, parsley and feta cheese. Check the seasonings, and serve at room temperature.

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Mother Kills Her Autistic Child and Herself and Throwing Stones Will Not Bring Them Back

I didn't know Tracy Hawks, 47, of Howard County, Maryland who police say killed her  autistic and mildly  intellectually disabled son Christopher Melton on June 4 using a gas generator. ExploreHoward.com  says the mother suffered from depression and there had been a family breakup. The mother was described as being close to her son  Christopher who was described by several persons interviewed at the school he attended as a great kid, well behaved, caring and welcoming with a smile for anyone who looked at him.  

People will judge the mother and many, perhaps most,  will judge her harshly, very harshly.  I do not quarrel with those judgments. Those judgments though will not change the facts ... that the mother and her son are both gone.  The study has enough details to suggest that the son's disabilities may have had little to do with the mother's desperation. Readers like me have no way of knowing that with any certainty. 

What is certain though is that with better assistance from communities and governments,   with real  support and services, with the knowledge  that an autistic child will live a decent life after a parent has passed on,   some ... some ...  of these cases would turn out differently.  In some, not all, but some of these cases, a child with autism would live and perhaps enjoy life to the fullest.  Throwing stones at the dead parents will not, however, change a thing.

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Spanakopita Rolls

One of my absolute favorite Greek dishes is spanakopita, which is a mixture of spinach, onions, cottage cheese and feta cheese wrapped with buttery, crispy phylllo dough. Most often, this dish is served as a pastry covered casserole. I added spanakopita to our Mediterranean Grill Party menu but to make it more party friendly to enjoy, I formed them into Spanakopita Rolls instead. They were a hit and were eaten all up well before the end of the party!...

Who can resist anything wrapped in buttery, crispy phyllo dough? It's one dough that may be finicky to work with, but it surely is well worth the effort. But before we even talk about the phyllo dough, the filling is really the star of this dish. A combination of softened white and green onions are added to cottage cheese, feta cheese, and egg. Together it forms the classic spanakopita filling. Once the filling is made, it's time to prepare the phyllo dough.

The thing about phyllo dough that may be intimidating to work with is that it dries out quickly and requires lots of butter or oil to keep moist. However the butter butter and oil also helps the phyllo dough to bake up nice and golden with that unmistakable crispy texture. Using a similar technique in making burritos or eggrolls, the filling is placed on buttered phyllo dough sheets and rolled up tightly to form a roll. These are then kissed with more butter and oil before baking to a crispy golden brown. One roll is quite filling as it is and you can even cut these rolls into smaller bites before serving.

Spanakopita Rolls
recipe adapted from CBS

1 Tablespoon vegetable oil
1 small onion, chopped
3 green onions, chopped
10 ounces frozen chopped spinach. thawed and squeezed dry
4 to 6 ounces domestic feta cheese, crumbled
1 cup cottage cheese
1 egg
Salt and pepper to taste
1 pound phyllo, thawed
8 tablespoons butter (1 stick), melted
2 tablespoons vegetable oil


Preheat oven to 375 degrees

Heat 1 tablespoon of oil in medium skillet over medium heat. Add white and green chopped onions; cook until softened, 3 to 4 minutes.

Meanwhile, mix spinach, feta, cottage cheese and egg in medium bowl. Add cooked onions and season with salt, and pepper. Cover and refrigerate until ready to use.

Combine the remaining butter and oil and set aside until ready to use.

Remove one phyllo sheet. With the shortest end of the phyllo sheet nearest you, brush phyllo with butter and oil mixture; top with second sheet and brush again. Fold the buttered phyllo sheets in half, like a book and brush the top layer with butter and oil mixture.

Place a heaping 1-1/2 tablespoons of filling in the center of the bottom nearest you. Fold up the phyllo once and then fold over the right side and then the left side of the phyllo. Brush with butter and oil mixture and then continue rolling up like a burrito.

Place seam side down on a greased baking sheet and brush rolls with butter/oil mixture. Bake until golden, about 30 to 35 minutes.

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Lemon Artichoke Hummus

When I think of Mediterranean cuisine, one of the first things that come to mind is hummus. Hummus is generally chickpeas and tahini processed together with a few seasonings and herbs. Rather than making the usual traditional version, I wanted a more refreshing flavor to add to our Mediterranean Grill Party menu. As I was searching for possible menu items, I came across this recipe for Lemon Artichoke Hummus. It's exactly what I hoped for - bright, refreshing and so easy to make!...


This recipe is wonderfully light and a perfect accompaniment to other Mediterranean inspired dishes. The bright notes of lemon shines through with lemon juice and lemon zest used while the flavor of artichoke lies in the background. Served with various vegetable crudite or pita bread, this makes for a healthy snack.

Lemon Artichoke Hummus

recipe adapted from RecipeThing

1 cup artichoke hearts, packed in water, rinsed, patted dry& chopped
1/4 cup fresh lemon juice
1/4 cup water
6 tablespoons tahini , stirred well
2 tablespoons extra-virgin olive oil
1 14 oz-can chickpeas , drained and rinsed
1-2 garlic cloves, minced or pressed through garlic press
zest of 1 lemon
1/2 teaspoon table salt
1/4 teaspoon cumin
pinch cayenne
1 tablespoon fresh parsley
pinch of paprika for garnish



Whisk together tahini and 2 tablespoons oil in second small bowl or measuring cup.

Process chickpeas, 3/4 cup chopped artichokes, garlic, lemon zest, salt, cumin, cayenne, and parsley in food processor until almost fully ground, about 15 seconds. Scrape down bowl with rubber spatula and add the lemon juice and water. Continue processing for another minute.  With machine running, add oil-tahini mixture in steady stream through feed tube; continue to process until hummus is smooth and creamy, about 15 seconds, scraping down bowl as needed.

Transfer hummus to serving bowl. Sprinkle reserved artichokes and paprika over surface, cover with plastic wrap, and let stand until flavors meld, at least 30 minutes. Drizzle with olive oil and serve.

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