Researching the relationship between Autism and cPTSD—Study Update & Timeline

About 4 days ago, I shared a post asking if anyone would be interested in participating in a research study that would investigate the potential causal relationship between autism and cPTSD.

Since then, nearly 3,000 of you have signed up to be notified when the study is launched.

Though I am still digesting the magnitude of this, I want to take a few minutes to answer some of the more frequently asked questions for those who are following along...

— Research credentials / team —

As of today, we are a 2-person research team. Myself and my research advisor, Dr. Robin Katz. Our team will likely grow as we move forward with the study.

— My background / credentials —

My formal background is in philosophy, psychology, and learning science. This includes formal training in research and survey design.

My first role in the study is founder and theory architect. Essentially, I'm the person who conceptualized the theory that the hypothesis was generated from.

I will also be an active member of the research team, conducting, collecting, and analyzing the data and will be co-authoring the results paper with Dr. Katz outlining our findings and recommendations.

(This will be in the format of a journal article, including our methodology, limitations, and discussion of impact)

— Dr. Katz's background / credentials —

Dr. Katz has over 40 years of expertise in autism, early childhood development, and research, and an occupational therapy doctorate degree (OTD).

She also has over 30 years of expertise as a pediatric occupational therapist working with autistic children and is neurodivergent herself.

Dr. Katz has been my occupational therapy advisor for over 6 years as I have developed content related to sensory processing disorder, sensory integration, and sensory integration support strategies.

She was also, and continues to be my advisor for my educational children's book series, Sensory Stories.

I will be creating a page on my website soon with a full CV of her background and credentials, which includes her being a college professor in various institutions, designing and teaching research courses.

I could not be more thrilled to have her as my partner and advisor in conducting this study.

— Study timeline —

We have not begun designing the study yet.

Right now, we are still in the very early stages of conceptualizing the study.

Our tentative timeline is as follows...

Now through October - Literature review (thorough and extensive review of existing research)

October through December - Study design

January through April - Study launch (Data collection from participants)

May and onward - Data analysis, synthesis, results, writing and publishing findings and recommendations

Note that these dates may change as we move through the stages.

— Participation restrictions —

We are currently not restricting participation.

It is important to us that we prioritize inclusion of groups that have historically been excluded from autism research.

This means starting with as wide a pool as possible and then accounting for variances in participant demographics and unique circumstances by the way we design the survey questions.

Additionally, for those familiar with research design, since we will be using a mixed design (which includes qualitative/narrative data), the design itself does not require participation restrictions.

So... for anyone interested in participating...

If you feel this topic is personally relevant for any reason, you are welcome to participate.

- If you suspect you are autistic but are unsure, you are not just allowed to participate, you are encouraged.

- If you are neurodivergent but not autistic, you too are encouraged to participate.

- If you suspect you have cPTSD, even with no formal diagnosis, you are encouraged to participate. This includes if you are not also diagnosed with a neurodevelopmental condition.

There are no restrictions based on location either.

— Response bias concerns —

Potential sources of bias are an expected consideration in research design and will be addressed during the study design process.

— Sign up for updates —

If you are interested in being notified when the study goes live, or are interested in following along as we move forward with this research, you can sign up at the link below (in comments)

— Help get the word out to marginalized communities —

If you are involved in autism advocacy in spaces with marginalized groups, please consider sharing this information with them. We are invested in creating as representative a study sample as possible.

We will be doing community work to get this into as many marginalized spaces as possible, but any and all help will be immensely appreciated. 🙏🏻

More updates to come soon. Stay tuned...

Editing to add for those who have asked...

Dr. Katz is my mom. I am incredibly proud of this for so many reasons.

She is the reason I am the advocate that I am today. From a very young age she taught me how to think critically, be the best human I know how to be, and advocate like heck for myself when people or institutions were mistreating me.

She is the mom I wish everyone could be lucky enough to have.

That said, she is also one of the most incredible minds I have ever known. And her breadth of knowledge and expertise spans fields that will bring immense value to this project.

She is not just a good person for this project, she an exceptional person for this project.

I could not be more thrilled to have her as my partner in this endeavor.

More soon. 🙏🏻About 4 days ago, I shared a post asking if anyone would be interested in participating in a research study that would investigate the potential causal relationship between autism and cPTSD.