Archived | Autism Speaks: Why does it take brains to understand autism? | Circa October 23, 2017 #NotAnAutisticAlly


Why does it take brains to understand autism?

October 23, 2017 

Guest post by Alycia Halladay, chief science officer for the Autism Science Foundation

Alycia Halladay, chief science officer for Autism Science Foundation.

You may have heard about Autism BrainNet and its mission to increase awareness about the need for postmortem brain tissue in autism research. I appreciate that few people want to talk about death – either their own or that of a loved one. At the same time, we know that we can help people with autism by better understanding where and how autism develops in the human brain.

Autism Speaks, in keeping with its mission to be a catalyst for research that improves the lives of people who have autism, played a crucial role in launching Autism BrainNet in 2013. Today, more than 2,000 people are registered as future brain donors, and close to 80 families have now taken the heroic action of donating a deceased loved one’s brain for autism research.

These donations have already helped produce discoveries that are answering crucial questions. For example:

What causes autism and when does it develop in the brain?

Autism Speaks, Autism Tissue Program (ATP). Autism Brain Net

We know that different types of autism develop in different ways from different genetic causes, sometimes in combination with environmental influences. At the same time, brain-tissue research has revealed important commonalities between most or all forms of autism.

For example, in 2014, an analysis of brain tissue by UCSD’s Eric Courchesne and his colleagues found that autism-associated brain changes consistently arise in certain layers of the cerebral cortex during a specific window of prenatal development.

(See “Direct Evidence that Autism Starts During Prenatal Development.”)

The brain tissue used in the research came from the Autism Speaks Autism Tissue Program, which became part of BrainNet.

Dan Geschwind

Other researchers, including UCLA’s Dan Geschwind, have used brain tissue to identify autism-associated gene changes and link them to changes in vital biochemical pathways illustrated on the right. These brain pathways:

  • direct the growth and location of brain cells during prenatal development,
  • enable brain cells to communicate with each other and
  • control inflammation and other immune functions in the brain.

In addition, research on brains from people who had autism have identified several brain regions as particularly involved in some of autism’s most-disabling symptoms, as illustrated below.

Still other studies using brain tissue have produced important clues on how environmental exposures – such as prenatal exposure to chemicals, stress and deficiencies in a mother’s diet – can affect brain development in ways that appear to increase the risk of autism.

For example, we now know that exposure to environmental stresses – including toxic chemicals – can produce changes in the epigenetic mechanisms that help control when genes turn on and off at crucial times during brain development. (See “What is epigenetics, and what does it have to do with autism?”)

Can we turn these findings into treatments?

Donated brain tissue allows scientists to look directly at the microscopic features of neurons (brain nerve cells) and the connections between them. For example, in brain tissue from people with autism, researchers have found an overabundance of dendritic spines – the projections on the neuron’s surface where it connects with other neurons.

This overconnectivity may lead to a range of autism challenges such as difficulty processing information, including sensory stimuli (sights, sounds and touch) and language (speech, written words, etc.).

Researchers at Columbia University took this information and, using lab animals, found that they could reduce abnormal numbers of dendritic spins on neurons with a drug called rapamycin. The results are promising, but much work remains to be done before we know whether this could be a safe and effective treatment for people.

I hope this brief overview answers some questions – and maybe raises some more for you. We invite you to learn more at, the outreach program of Autism BrainNet. You can also subscribe to a quarterly newsletter by signing up at

Remember: “It takes brains to understand autism.”

Screenshot of Autism BrainNet website


Autism BrainNet promotes innovative, high-quality research on postmortem brain tissue with the goal of improving the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions.

The brain is the main organ affected in ASD. Researchers can study the brain of living individuals by using methods such as magnetic resonance imaging (MRI) and electroencephalography (EEG), but these methods do not allow direct access to the brain tissue. Studies of brain tissue are necessary to understand the molecules and cells that make the brain develop and function, and to understand how genetic or other changes affect the brain at the microscopic level. The only way researchers can study these microscopic properties of the human brain is by examining the brain collected postmortem.

Postmortem brain tissue is an invaluable resource for advancing our knowledge of autism biology and for identifying targets for treatments that could improve the quality of life of individuals with ASD and their families. But, brain donations are rare and tissue for research is lacking. Autism BrainNet was created with the goal of facilitating and supporting autism research that uses the precious gift of donated brain tissue.

An initiative originally formed in 2014 by the Simons Foundation and Autism Speaks, Autism BrainNet is now entirely managed and supported by the Simons Foundation Autism Research Initiative (SFARI).

Autism Speaks, Autism Tissue Program (ATP). Autism Brain Net

As part of its prior collaboration with Autism Speaks, Autism BrainNet also manages tissue that was previously collected tissue through the Autism Tissue Program (ATP). All tissue donated to the ATP continues to be a valuable resource for autism research worldwide.

As a collaborative network of scientific institutions, Autism BrainNet includes three sites, also called nodes, in the United States and two international partnerships in Canada and the United Kingdom. Each node follows the high standards set by Autism BrainNet to collect, process, store and distribute the precious gift of donated brain tissue to qualified researchers worldwide. Applications to receive brain tissue for research are evaluated for scientific merit by the Autism BrainNet Scientific Review Committee, a group of highly respected physicians and scientists.

Our Mission

Autism BrainNet works with researchers and the communities affected by autism and other neurodevelopmental conditions to develop a sensitive and effective strategy for acquiring postmortem brain tissue. The donations will produce a resource that facilitates the highest quality research into the causes of these conditions. The data generated will be shared to enable the development of treatments that improve the quality of life of individuals who are affected by them.

Our Values

Autism BrainNet is committed to ensuring we are living up to our values of:

  • Transparency
  • Dedication to the highest quality research
  • Data sharing
  • Partnering with scientific, governmental and non-profit groups
  • Partnering with family-sponsored groups
  • Sensitivity to families touched by autism and other neurodevelopmental conditions
  • Ensuring a secure repository for the precious donations


Autism Speaks
An Autism Speaks Initiative
Interactive Autism Network (IAN)
Cure Autism Now
Autism Clinical Trials Network (ACTN)
Autism Genetic Resource Exchange (AGRE)
Autism TIssue Program (ATP)
National Alliance for Autism Research (NAAR)
Autism Treatment Network (ATN)
Autism Intervention Research Network on Physical Health (AIR-P)
Autism Care Network
Alpha Xi Delta
Parents As Partners

National Council for Severe Autism (NCSA)


UC Mind Institute
Interactive Autism Network


Autism Brain Net
Simons Foundation
Spark! For Autism

Simons Simplex Collection
Interactive Autism Network (IAN)


Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

Fact: Vaccines Do Not Cause Autism.

One Reply to “Archived | Autism Speaks: Why does it take brains to understand autism? | Circa October 23, 2017 #NotAnAutisticAlly”

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