Archived | Autism Speaks: Parents As Partners In Research | Circa 2007 #NotAnAutisticAlly

How to Participate

In 2005, Autism Speaks established the Parents as Partners program.

Parents as Partners in Research connects parents and families of individuals with autism spectrum disorders with investigators conducting clinical autism research studies aimed at diagnosing autism earlier, developing and evaluating treatments and, eventually, finding a cure. 

Parents as Partners in Research provides an opportunity for families directly affected by autism to take a more active role in accelerating the pace of research. The program is designed to better enable families interested in taking part in research studies to locate investigators in need of children, adolescents and adults with autism spectrum disorders to participate in their studies.

Our goal is to match a researcher’s specific criteria with a family’s interest in a particular study and ensure that all eligibility requirements are met. 

Projects which study children at risk for developing autism may be found on the Parents as Partners web site. To see a complete list of projects which are actively seeking participants, (not available).


Parents As Partners


Parents as Partners in Research

Parents as Partners in Research (Parents as Partners) connects parents and families of individuals with autism spectrum disorders with investigators conducting clinical autism research studies aimed at diagnosing autism earlier, developing and evaluating treatments and eventually, finding a cure.

 Read more about the Parents as Partners program below


Search Programs:

Search by Keyword in the Search Programs box provided. You may search by spectrum disorder type, (i.e., Asperger’s Syndrome or PDD-NOS), or by state name or abbreviation. You may also search for international studies by typing in keyword “international”. If you are interested in participating in research surveys from the comfort of your own home, type in the keyword, Survey.

Other Keyword examples:
Investigator Name
Facility or University Name
Age by Number (3,12,16)
Age by Categories (Infant, Adult)
Study Type (Infant Sibling, AGP)

Refine your Search
You may also refine your search by searching with the interest catagories provided.


Click on these links to learn more:

Benefits and Risks of Participation

What is Clinical Research

Photo caption: Bob South, husband to Val South, Co-chair of Walk for Autism Research, Toronto, with their son Cam.  


What is Parents as Partners in Research?

Parents as Partners in Research connects parents and families of individuals with autism spectrum disorders with investigators conducting clinical autism research studies aimed at diagnosing autism earlier, developing and evaluating treatments and eventually, finding a cure

Parents as Partners in Research provides an opportunity for families directly affected by autism to take a more active role in accelerating the pace of research. The program is designed to better enable families interested in taking part in research studies to locate investigators in need of children, adolescents and adults with autism spectrum disorders to participate in their studies. Our goal is to match a researcher’s specific criteria with a family’s interest in a particular study and ensure that all eligibility requirements are met. 

If love could cure autism, the devastating disorder would not exist. But autism does exist and research is the only way we will ever learn what causes the disorder, develop methods to diagnose autism earlier, develop more targeted interventions and someday, find a cure. Parents as Partners in Research is driven by parents and family members affected by autism. Therefore, we are asking parents and other family members to consider becoming an active participant in autism research projects. 


What is Clinical Research?

Clinical research is the study of drug, biologic or device in human subjects with the intent to discover potential beneficial effects and/or to determine its safety and efficacy.

Clinical investigations are systematic studies designed to evaluate a product (drug, device, or biologic) using human subjects, in the treatment, prevention, or diagnosis of a disease or condition, as determined by the product’s benefits relative to its risks.

Clinical investigations can only be conducted with the approval of the Food and Drug Administration (FDA).

Clinical trials refer to any investigation in human subjects intended to determine the clinical pharmacological, pharmacokinetic, and/or other pharmacodynamic effects of an investigational agent, and/or to identify any adverse reactions to an investigational agent to assess the agent’s safety and efficacy. 


What Are the Benefits and Potential Risks of Participation?

There are a number of benefits to families participating in the Parents as Partners in Research program.

An extensive evaluation is offered by the research center that typically includes comprehensive psychiatric and diagnostic evaluations as well as extensive neuropsychological and neuropsychiatric assessments and a medical screening. This screening and evaluation is a necessary step to confirm the diagnosis and participate in research studies. In most cases, the principle investigator of the study will also arrange personal one-on-one synopsis of the research results to discuss with you.

Additionally, all services provided in research studies are free of cost to eligible participants.

There may be risks associated with taking part in clinical research, such as an adverse drug reaction, which is an unintended reaction to a drug taken at doses normally used in man for prophylaxis, diagnosis, or therapy of disease, or for the modification of physiological function; or an adverse event, which is a negative experience encountered by an individual during the course of a clinical trial typically associated with a drug or medical procedure, such as a MRI scan.

Parents considering enrolling their children in a clinical research project, and adults with autism considering participating in clinical research should discuss the issue with their physicians, medical caregivers, family members and the principal investigator involved in the study. The rights and safety of anyone taking part in clinical research are protected in two important ways.

First, all investigators funded by Autism Speaks or the National Institutes of Health must obtain approval to conduct the study from an Institutional Review Board.

The review board, which is usually composed of physicians and lay people, is charged with examining the study’s protocol to ensure that the patient’s rights are protected, and that the study does not present an undue or unnecessary risk to the patient.

Second, anyone participating in a clinical trial in the United States is required to sign an “informed consent” form.

This form details the nature of the study, the risks involved, and what may happen to a patient in the study.

The informed consent tells patients that they have a right to leave the study at any time.


Benefits and Risks

There are a number of benefits to families participating in the Parents as Partners program. An extensive evaluation may be provided by the research center.  An extensive evaluation can include comprehensive psychiatric and diagnostic evaluations as well as extensive neuropsychological and neuropsychiatric assessments and a medical screening.

This screening and evaluation is a necessary step to confirm the diagnosis and participate in research studies. In most cases, the principal investigator of the study will also arrange personal one-on-one synopsis of the research results to discuss with you. All services provided in research studies are free of cost to eligible participants.

There may be risks associated with taking part in clinical research.  Parents who consider enrolling their children in a clinical research project, and adults with autism considering their own participation in clinical research, should discuss any and all associated risks with their physicians, medical caregivers, family members and the principal investigator involved in the study beforehand.

The rights and safety of anyone taking part in clinical research are protected in two important ways.

First, all investigators funded by NAAR or the National Institutes of Health must obtain approval to conduct the study from an Institutional Review Board. The review board, which is usually composed of physicians and lay people, is charged with examining the study’s protocol to ensure that the patient’s rights are protected, and that the study does not present an undue or unnecessary risk to the patient.

Second, anyone participating in a clinical trial in the United States is required to sign an “informed consent” form. This form details the nature of the study, the risks involved, and what may happen to a patient in the study. The informed consent tells patients that they have a right to leave the study at any time. 

All active news articles


What is Clinical Research?


Clinical research is the study of drug, biologic or device in human subjects with the intent to discover potential beneficial effects and/or to determine its safety and efficacy.

Clinical investigations are systematic studies designed to evaluate a product (drug, device, or biologic) using human subjects, in the treatment, prevention, or diagnosis of a disease or condition, as determined by the product’s benefits relative to its risks. Clinical investigations can only be conducted with the approval of the Food and Drug Administration (FDA).

Clinical trials refer to any investigation in human subjects intended to determine the clinical pharmacological, pharmacokinetic, and/or other pharmacodynamic effects of an investigational agent, and/or to identify any adverse reactions to an investigational agent to assess the agent’s safety and efficacy.


Autism Speaks

#NotAnAutisticAlly

An Autism Speaks Initiative
Interactive Autism Network (IAN)
MSSNG
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


  


Note/Warning:

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.


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