Indiana Alliance is excited to share we have added Rebecca’s Spotlight to our website. We want to create a space where individuals living with an FASD can share their stories. This space is called Rebecca’s Spotlight to honor self-advocate Rebecca Tillou and her work to give other self-advocates voice.  If you’re inspired to share YOUR story, let us know! 

Discovering what the “professionals” were missing: how Dana’s research into autism helped her find herself on the spectrum of FASDs

I was finally diagnosed this year at the age of 53. I have had many problems over the years: mental health (depression, anxiety, trauma), and addiction, but always knew there was something else the “professionals” were missing. I started the process last year but had to spread it out due to the fact I had to pay and am on a fixed income. Although I had always known my Mom drank throughout the pregnancy, I had a stereotypical image of what a person with FASD was like. I have always done quite well academically (in most areas, more below) and thus did not consider I may be on the spectrum until a few years ago while researching autism. Then the penny dropped and it made sense. I decided it was worth the $4000 to get formally diagnosed.

In school I struggled the most socially. I have always had a lot of anxiety and that played a role in my inability to act like other kids, along with drinking and violence in the home. Some things like math and telling time, took me longer to grasp than my peers. I also got distracted easily, had trouble following directions and was a chatter box. I also struggled with physical education as I was always small and uncoordinated. Given all this, it is no surprised that I began drinking regularly at age 12 and it was a struggle for years-I am now free of all substances.

I have some great traits that I now connect to being on the spectrum. I am very kind and do not like to see anyone hurting, especially children, animals, or anyone who is disempowered. I can be quick witted and lots of fun if I am with people who “get me”. I am tenacious and have left no stone unturned to understand my challenges and to meet them head on.

The main point I would like to make is that people broaden their understanding of FASD, and see it truly as a spectrum. Even if someone appears to be at the “normal” range of “intelligence”, they still may struggle a lot. I believe there are so many of us older folks who never got diagnosed and who have fallen through the cracks, ended up in the addiction, mental health and criminal justice system.

“People with FASD have so much to give if we are treated kindly and focus is given to our strengths.” – Dana Christensen, Vancouver, BC, Canada

More about Rebecca Tilou

Rebecca hopes to spread her knowledge of what it is like to be diagnosed as an adult with FASD – which is often called an “invisible disability.” Read more about her own journey of self discovery here and watch a video she created for others hereRebeccas has also written a book called “Tenacity” about her struggles to understand not just her biological roots but herself.

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