Tag Archives: Autism Speaks

How Are You Speaking Out?

There are a ton of groups out there today who are in support of finding ways to help individuals with disabilities, and they’re working hard to make sure their voices are heard. From finding ways of detecting Autism in children as early as possible, to raising awareness, it doesn’t seem possible for there to be a negative way to support Autism. One group is stirring a bit of a rift in the community for their questionable methods of supporting Autism. You may have heard of them, especially if you or someone you are close to has a developmental disability. Recognized as a major nonprofit in both the national and international Autism advocacy community, Autism Speaks is an organization that many believe to be an important player when it comes to Autism awareness.

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Autism Research Setback: Brain Tissue Shortage Complicated by Freezer Thaw Out

Courtesy of McLean Hospital
Courtesy of McLean Hospital

Autism research received a recent setback. Last year in May 2012, a freezer failure at the Harvard Brain Tissue Resource Center, McLean Hospital, caused 147 frozen specimens to thaw over a period of a few days, with 54 of them dedicated to autism research. Brain tissue is extremely fragile and degrades quickly. This will have an impact on autism research because the tissue cannot be used as intended, which was to study proteins produced by genes and other molecules.

The defrosted tissue can still be used for genetic research but it is unclear what current experiments can yield. Of the 54 autistic brains, 32 of them had been divided, with half put into the freezers and the other half preserved in formalin. The samples preserved; however, yield different information than the frozen samples.

Only a small number brains are donated to science every year as evident by the low amount of brain tissue at the Harvard-affiliated McLean Hospital. This particular bank has been accepting donations of people with autism for about 20 years. Researchers are trying to identify how autism is affecting the brain in earlier stages of childhood; therefore, the greatest demand is for tissue from children.

In a study published in 2011 by the Journal of the American Medical Association, it has been discovered that brains of autistic children grow at an accelerated rate during the first year of life compared to brains of typical children. The autistic brain samples had an abnormally large number of brain cells, 67% more brain cells in the frontal region than the controls. Another study, published by PLOS Genetics, found that autistic children had abnormalities in genes that controlled the number of brain cells. It is with research like this that may lead to treatment that is able to correct an abnormal growth pattern.

Courtesy of Google Images
Courtesy of Google Images

Autism Speaks is an advocacy and research organization which runs the Autism Tissue Program (ATP). This program is partially responsible for collection at McLean Hospital where the freezers failed. The program only supports tissue donation within the US, Canada, and the UK.

If you would like to consider becoming a registered brain donor or want more information, visit the Autism Tissue Program site. When you register with the program, they will provide you with a wallet card that indicates your wishes to be a brain tissue donor and it provides important contact information at the time of need. The Brain and Tissue Bank at University of Maryland also has a website for families interested in donation. Also visit the Harvard Brain Tissue Resource Center which serves as the tissue repository for the Autism Tissue Program.

Study From University of Connecticut Suggests Some Children Can Outgrow Autism

A fascinating study that will surely be debated and undoubtedly provoke more study suggests that a minority of toddlers diagnosed with autism-spectrum disorder no longer qualify as autistic years after diagnosis.  The investigator, Dr. Deborah Fein estimates that 10%-20% of children can outgrow or otherwise “recover” from autism; the study uses the phrase “achieve(s) optimal outcomes.”

Dr. Fein led a team from the University of Connecticut and reported last week in the Journal of Child Psychology that they had identified 34 people who had all been diagnosed with autism by age 5 but years later were indistinguishable from their peers.

The findings reinforce observations made by parents and clinicians that symptoms of autism can disappear over time in some individuals.  However, it does not appear that doctors know how to identify the group that experiences “recovery”.

 

The full abstract from the Journal of Child Psychology (courtesy of PubMed) is re-printed here:

J Child Psychol Psychiatry. 2013 Feb;54(2):195-205. doi: 10.1111/jcpp.12037.

Optimal outcome in individuals with a history of autism.

Fein D, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K.

Source

Department of Psychology, University of Connecticut, Storrs, CT, USA;              Department of Psychology, Queens University, Kingston, ON, Canada; Center for Autism Research, Children’s Hospital of Philadelphia, PA, USA; Institute of Living, Hartford Hospital, Hartford, CT, USA;  Child Mind Institute, NY, USA;              Department of Pediatrics, University of Connecticut, Farmington, CT, USA.

Abstract

Background:  Although autism spectrum disorders (ASDs) are generally considered lifelong disabilities, literature suggests that a minority of individuals with an ASD will lose the diagnosis. However, the existence of this phenomenon, as well as its frequency and interpretation, is still controversial: were they misdiagnosed initially, is this a rare event, did they lose the full diagnosis, but still suffer significant social and communication impairments or did they lose all symptoms of ASD and function socially within the normal range?

Methods:  The present study documents a group of these optimal outcome individuals (OO group, n = 34) by comparing their functioning on standardized measures to age, sex, and nonverbal IQ matched individuals with high-functioning autism (HFA group, n = 44) or typical development (TD group, n = 34). For this study, ‘optimal outcome’ requires losing all symptoms of ASD in addition to the diagnosis, and functioning within the nonautistic range of social interaction and communication. Domains explored include language, face recognition, socialization, communication, and autism symptoms. Results:  Optimal outcome and TD groups’ mean scores did not differ on socialization, communication, face recognition, or most language subscales, although three OO individuals showed below-average scores on face recognition. Early in their development, the OO group displayed milder symptoms than the HFA group in the social domain, but had equally severe difficulties with communication and repetitive behaviors. Conclusions:  Although possible deficits in more subtle aspects of social interaction or cognition are not ruled out, the results substantiate the possibility of OO from autism spectrum disorders and demonstrate an overall level of functioning within normal limits for this group.

© 2013 The Authors. Journal of Child Psychology and Psychiatry © 2013 Association for Child and Adolescent Mental Health.

 

Please see these other links that reported on the study:

“Who Can Outgrow Autism” by Shirley S. Wang, Wall Street Journal
http://online.wsj.com/article/SB10001424127887323301104578255721887372386.html?KEYWORDS=Who+Can+Outgrow+or+Recover+from+Autism

“New Study Suggests Autism Can Be ‘Outgrown'” by Mia Szalavitz, Time Magazine http://healthland.time.com/2013/01/22/new-study-suggests-autism-can-be-outgrown/