The Parents Autism Project is inviting people to participate in a global citizen science project called the International Autism Mapping Project.
People who take part will help in gathering information which will make for stronger research, allowing your voice to be heard.
The autism community has grown over the years so that parents around the world can find each other, support each other, and, find answers together. Whoever you are, if you have a child who has been diagnosed with an Autism Spectrum issue, the project would like to hear from you.
To get started, there’s a brief consent form to read. This survey is anonymous. No personal identifying information will be published or shared.
The International Autism Mapping Project has been approved by the Institutional Review Board of the Wright Institute. It’s being done to add to our understanding of how environmental pollutants and toxins in our everyday environments may be contributing to the rising incidence of autism.
The project believes that there are environmental factors in autism and is asking for people’s help in understanding this better.
Parents are being invited to take part in 2 questionnaires on the research website. There is plenty of room for parents to write in concerns that they’d like to be followed up.
About the questionnaires:
Questionnaire 1: this one focuses on environmental factors more broadly. It’s important because though we know something about environmental factors and autism, we have a long way to go.
Questionnaire 2: this one focuses on a common type of pesticide that is banned from use in agriculture in some places, but not everywhere. These pesticides are called neonics, and it’s critical to understand if things which work by harming the brains of insects, harm human development.
If you’re a parent of a child who has an Autism Spectrum diagnoses, born in the year 2000 or later, we hope you consider participating.
Participating will likely take about 15 minutes, it’s anonymous, and you can do it from wherever you have internet.
To consent, you must be 18 years old or older, and the biological parent of a child with a diagnosis of Autism, or Autism Spectrum Disorder. Mothers and fathers may both participate.
What type of questions will I be asked?
There will be some questions to understand where you lived during pregnancy, the type of employment you had, and the type of everyday household toxins that you may have been exposed to, and also questions to help us understand some of the health issues your child has. There are a few questions which ask about what kinds of employment related exposures your own parents may have had.
What are the benefits of participating?
There may be no personal benefit to you as a parent, but it may increase our collective knowledge about the environmental causes for the rising incidence of autism.
How will my privacy be protected?
Your name and email or address will not be part of the study data. It will be stored in a separate, physically secure location in order to protect your privacy. We will not share that information with any outside group, nor store it “in the cloud” or on an insecure or networked computer. You will not be identified in any reports or publications resulting from this study.
Once I start, do I have to complete the Survey?
You can stop and quit at any point. Taking part in the study is voluntary.
While there may be some positive feelings to participating, questionnaires can also make people tense and annoyed. Remember that you may stop your participation at any time. For some of the questions, you might have to jog your memory.
There may be questions you can’t answer. There will be an option to say you don’t know, and there will also be several opportunities to write comments.
To take part in the study go to: http://mappingautism.com/please-join-our-study/
Written by Rachel Harrison, speech and language therapist, on behalf of Integrated Treatment Services. www.integratedtreatmentservices.co.uk
