Representative’s statement on International FASD Awareness Day

Press Release

Sept. 9, 2021

International FASD Awareness Day is an important time for us to recognize the strengths of children with fetal alcohol spectrum disorder (FASD) and their families and the challenges they face in our society. FASD is a life-long disability that is often misunderstood and accompanied by significant stigma for those affected by it. Today, we have an opportunity to highlight the experiences of children and youth with FASD and their families and help change the perception of what it means to live with this disorder.

One of the great challenges surrounding FASD involves the misconception and stereotype that FASD is an “Indigenous problem.” FASD is, in fact, not a diagnosis that is specific to a particular population or group of people. The false framing of this racist stereotype often results in a lack of empathy and understanding, as well as a lack of supports and services available to children and families. This also leads to structural and institutional racism toward First Nations, Métis, Inuit and Urban Indigenous peoples in accessing those supports.

Raising awareness around FASD as a disorder that can affect anyone from any culture, society or background is an important step in removing the shame and stigma faced by children with FASD and their families. Lack of awareness around FASD has harmful effects on the well-being of these children and their families – particularly mothers – who are often blamed for this so-called “preventable” disorder, without considering the multiple factors that can contribute to fetal exposure to alcohol, which is what actually leads to a person being born with FASD.

Over the past two years, we have had the privilege of working alongside some incredible children and families living with FASD, as well as Myles Himmelreich – an adult with FASD who was a co-researcher on our FASD project. Their perspectives have been vital to our work at RCY, showing us the value of inclusiveness and helping us to gain further understanding of FASD. I was amazed by the strengths, resourcefulness, creativity, kindness and love that the children and youth that we worked with and their families embody. Their voices also provided perspective on the feelings of isolation that they experience caused by the shame, stigma and profound lack of support for FASD.

In April 2021, my Office released the report Excluded: Increasing Understanding, Support and Inclusion for Children with FASD and their Families, which highlighted the significant inequities in services available to children with FASD and the general lack of understanding about this ‘invisible disorder’. In this report, I made recommendations to government for improved, equitable supports to children with FASD and their families. The full report is available on the RCY website.

I am deeply committed to the children, youth and families living with FASD and to advocating for enhanced awareness and equitable access to non-stigmatizing, culturally relevant and strengths-based supports and resources. Over the coming months, the RCY will contribute to greater awareness through the creation and distribution of knowledge, resources and tools for service providers, educators and others. We invite you to expand your understanding and join with us in shifting from stigma, shame and isolation to inclusion, support and thriving for children and youth with FASD and their families.

Today, I hope you will join us in helping to create a better understanding of FASD and bring about positive change on the perceptions of the disorder. It is through understanding and awareness that we can begin to move forward in forming a more inclusive society for all children with FASD and their families.

Sincerely,

Jennifer Charlesworth

Representative of Children and Youth

IHT5