Aspies For Freedom

Multidisciplinary teams of physicians and scientists at the University of California, Davis, M.I.N.D. Institute have launched the nation's most comprehensive assessment of children with autism to detect the biological and behavioral patterns that define subtypes of the disorder.

Called the Autism Phenome Project, the large-scale, longitudinal study will enroll 1,800 children -- 900 with autism, 450 with developmental delay and 450 who are typically developing -- who will undergo a thorough medical evaluation in addition to systematic analyses of their immune systems, brain structures and functions, genetics, environmental exposures and blood proteins. Children will be 2 to 4 years old when they begin participating in the study, and their development will continue to be evaluated over the course of several years. The first phase of the research is funded by the UC Davis M.I.N.D. Institute and philanthropic donations.

"Children with autism clearly are not all the same," said David G. Amaral, research director of the UC Davis M.I.N.D. Institute and co-director of the project. "The tremendous variation leads us to believe that autism is a group of disorders rather than a single disorder -- several autisms versus one autism. We are determined to provide the specific biomedical and behavioral criteria that accurately define distinct subtypes."

Autism has common hallmarks: difficulties initiating and sustaining social interactions, impaired communication skills and restricted, repetitive patterns of behavior. However, these hallmarks vary in severity. In addition, some children with autism can have co-existing conditions such as cognitive impairments, seizures, coordination issues or gastrointestinal difficulties, while others do not. This heterogeneity has been a major obstacle to progress in autism science.

Another obstacle involves access to reliable data. Autism science includes many quality studies on specific aspects of the disorder -- from genetics and immunology to behavior and imaging -- that can be difficult to combine and compare. With the Autism Phenome Project, UC Davis M.I.N.D. Institute researchers aim to overcome this limitation.

"We spent two years designing the project so that it would be both comprehensive in scope and fully capable of integrating data across disciplines," said Amaral, a neuroscientist who specializes in brain systems involved in memory, emotion and social behavior. "Our goal is to identify specific types of autism and develop a database of biomedical information that can be shared with the worldwide community of autism scientists. This is crucial to refining our understanding of autism and to developing targeted treatments for a specific 'type' of autism as early as possible so children can reach their fullest potential."

According to Thomas R. Insel, a physician who is director of the National Institute of Mental Health, the Autism Phenome Project is an important new direction in autism research.

"Multifaceted biomedical approaches are exactly what is needed right now," said Insel. "This is a monumental task, but one that needs to be undertaken if we are to accurately diagnose and treat people with autism."

While the Autism Phenome Project is ambitious, Amaral believes its successful completion will shorten by decades the road to discovering the causes and treatments of autism, a neurodevelopmental disorder that now affects 1 in 166 children in the United States. The unexplained rise in autism prevalence has frustrated parents and scientists trying to find answers.

"The extraordinary biomedical tools currently available at the M.I.N.D. Institute make it the ideal environment for launching this clinical research effort," he said. "The time is right for us to build a strong database of information that we can all share in order to speed the discovery process and clarify the variability that now plagues autism research. From there, we can more quickly identify causes and treatments, and by adding collaborative partners we will be able to gather as much information as quickly as possible."

The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators.

From medicalnewstoday.com

looking at it from a scientist prespetcitve, i think this is going to be a fasincating project to see where autistics and nt's differ in genetic structure, etc and answer how diffrent we are from the majority....like why do i look younger than my peers, there is probaly some genetic reasoning behind it.  it would also see the genetic vartation and eveloutionaly traits over time and more of that good stuff.

of course, we have the ethical ramifcations.  this research, first off, seems too cure focused.  it's like they are targeting all autism related genes as defective genes that need to be gutted from the human genome.  as you may or may not know, genetic assortment is one key for human surival.  related to that is the potental for gene thearpy in unfertlized egg and sperm to manipulate their genes to become nt instead of autistic, and evenutally, the minds will have it that autism is a life threating disease.  this may lead to genetic discrination in the future, problay by mid century (many of the older ones probaly would not be here to see that, but i'm likely to see this happen before i retire) which opens up a whole other can of worms.

although the wording is way off and discrimatory, the concept is accurate that not all autistics share the same traits and such...another mismoner to autism that all autistics are exactly the same.  i learned the hard way that we are not the same just like all nt's aren't the same.  if things are brought into a diffrent light, this can be postive.

I think that this is (guardedly) a good thing.  I hope the research also dispels some of the myths about autism, for instance the belief that we have no theory of mind, no empathy, no imagination.  Those sorts of ideas annoy me, because I AM autistic, and I'm pretty sure I have the above, particularly the imagination part.  I couldn't be an award-winning writer without imagination.  

One thing I'd quibble over is the fact that they are researching autistics, delayed development children, and development-normal children as controls, but no intellectually-gifted children.  I'd be interested to see how many intellectually-gifted turned out to be at least borderline autistic.  The tone of the report seems to be focused mainly on the downside of autism, while ignoring the benefits, focused concentration being only one of those.

Alison

The imagination part is not strictly supposed to be defining creative ability though. It has been posted somewhere, can't remember where, but the imagination part of the criteria refers to children not using play such as creating a dolls tea party, and actually using the dolls to represent themselves.
Or creating a lego village and having conversations between characters.


For diagnosis in adults, the imagination impairment refers to not being able predict what will happen in certain circumstances, such as a social situation, not being able to imagine how to best organize possesions in your house.

It's not referring to creative ability as such.

just caught this quote....so children can't reach their full potental while being autistic?  seems kinda racist and discrimatory, pretty much saying autstic traits are useless and needs to be elimated from the human gene pool.  guess it is becoming true, if you're autistic, your rights become suddenly stripped from you, as you are now considered a diseased citizen instead of a human being.[/quote]

I think it's really the same thing.  Imagination is being able to put yourself into another situation and logically extrapolate what will happen from there.  I just write about it after I've imagined it!  I'm fairly certain there would be no creative ability without imagination, although of course there can be imagination without creative ability.  

With social situations, I second-guess myself into a tangle: am I doing this right, saying that right, etc.  Being unable to read NTs in a social situation is the problem, not a lack of imagination per se but an inability to see and understand social cues.  That could stem from the general face-blindness I have.  

Alison

Personally I see a big difference, maybe I'm not explaining it very well, but have seen an experiment of it on a documentary.

I found the following at the AS-IF website. I agree with it because I find it is very true at least in myself.  I get a lot of anxiety when faced with unknown situations.  Sometimes my imagination can go wild and I think of a thousand things that could go wrong.

I plan things using visual and spatial thinking, while the "correct" NT way of planning future activities is to do it in a sequential-verbal thinking way. I figured this out from reading an article about "executive dysfunction" in a science magazine the other day. The article described the supposed elements of planning (which can all individually fail), but the article failed to mention two major methods that I have always used for planning: compiling lists and imagining/placing things into their proper physical locations or categories. For dealing with time, I put this kind of information into a visual physical format such as calendars or diaries. Apparently NT style planning involves having some running commentary going in their minds "And now I do this, and now I do that ...." God knows how they get anything done.

With regard to the research project - what the heck is a "phenome"? I think these researchers are trying to be clever by making up words. I think the word "phenotype" is actually what they plan to research, but they want to use a word that sound like "genome" to make the whole caper sound more exciting and scientific.

Lili said "I have always used for planning: compiling lists and imagining/placing things into their proper physical locations or categories. For dealing with time, I put this kind of information into a visual physical format such as calendars or diaries. Apparently NT style planning involves having some running commentary going in their minds "And now I do this, and now I do that ...."

I find both methods impossible (apart from making a list), but that is not very helpful.

I find visualising things very difficult, so I don't know if it's related to that.