Phew, that was a lot to take in and is a lot to synthesize and reflect upon in a few double-spaced pages!  I took forty-five pages of notes—yes, 45—so I was like: “How am I going to tie all of this together?”; “How do I articulate and reflect my thoughts on all of these different sources?”  Thankfully, there was a distinct theme that stood out above the rest and which was evident in every single source; it kept popping up throughout the one hundred, seventy-three minutes and ninety-five seconds of audio-video (yes, I counted), and I could see that it boiled down to one important fact: individuals with Fetal Alcohol Spectrum Disorder (F.A.S.D), Autism Spectrum Disorder (A.S.D.), and Down Syndrome are, first and foremost, P.E.O.P.L.E!!  

As such, we must think of, and treat, these individuals as people—not as a disorder; not as a disease; not as a victim “suffering from” or “living with” this or that; not as someone who is ill and in need of a “cure” or “fixing”—rather, as a wholly unique person with his/her/their own strengths, struggles, interests, and abilities…just like everyone else!  Only when we treat individuals with F.A.S.D, A.S.D, and Down Syndrome as people can we begin to successfully address the second critical theme within the sources—that is, providing adequate and appropriate support (without stigma) to individuals and families.  We need a strength-based approach, one that focuses on what individuals and families can do, not what they cannot do—on the positives, on what they bring to the table, and what we can learn from them!

Fetal Alcohol Spectrum Disorder – FASD

FASD is a lifelong disability that affects cognitive function (PreventionInstitute1, 2018).  All the disorders covered this week are lifelong disabilities that affect cognitive function; FASD, however, is the only one that is preventable (i.e. by mothers abstaining from drinking alcohol during pregnancy).  This brings with it a whole other set of judgements: not only do individuals with FASD battle to be seen as people first, but so do their mothers (who are often seen as addicts and users rather than as mothers).  This is where FASD education is critical: society needs to be educated and aware that there are many underlying factors facing mothers of individuals with FASD and judging them is not the least bit helpful—they already judge and blame themselves harshly (Calgary Herald, 2019).  Many women do not know they are pregnant until three months into their pregnancy and thus consume alcohol without knowing the risk to their unborn children (PreventionInstitute1, 2018 and 2020); many others are battling life’s challenges with little support from the people and community around them (Calgary Herald, 2019).  

If we continue to treat individuals with FASD and their mothers as “problems” (rather than as people), we make it harder for them to find support—leaving them too ashamed to seek and access the help and support they need to become the best people they can be.  We all deserve to be the best versions of ourselves; people with FASD and mothers of FASD children are no different!  Instead of judging and seeing individuals with FASD (and their mothers) as disruptions to society, we must educate ourselves, promote dignity and respect, and build understanding—into FASD campaigns (PreventionInstitute1, 2020); into our classrooms and approaches to teaching and learning (POPFASD, 2019); and into our language, attitudes, and behaviours (PreventionInstitute1, 2018 and 2020; POPFASD, 2019).  Adverse outcomes can be mitigated with positive supports and individuals and families can succeed!

Autism Spectrum Disorder – ASD

Autism is a lifelong neuro-developmental condition that affects cognitive function (POPARD, 2022).  As with FASD, the resources on ASD stress the importance of a strengths-based approach—one that does not make assumptions, but rather focuses on the uniqueness of each autistic individual and the strengths they bring to the world around them:

Autism is often described using a diagnostic-driven, deficit-based framework. However, autism is much more than a collection of impairments! When viewed from a strength-based perspective, autism can be understood as an essential part of an individual’s identity (POPARD, 2022).  

This concept is highlighted beautifully in Five Questions about Autism (Mass General Giving, 2018) and You Can’t Ask That: Autism (CBC News Network, n.d.), wherein autistic individuals answer questions and give their input on what it is like to have Autism.  The overall consensus was this: “yes, it is often hard being autistic, but I would not change it for the world!”  Those interviewed had the same wants and needs as everyone else: to be seen as a person; to be loved, included, and respected; to feel a sense of belonging; to do what they enjoy and have opportunities to shine; to have their own voices and not be judged; and, most of all, to be understood (Mass General Giving, 2018).  With the adequate support, autistic individuals can have all of this.  And, with all of this, they will learn and thrive!

Down Syndrome

Down Syndrome is a naturally occurring chromosomal condition associated with chromosome 21, with three different types identified: Trisomy 21, Translocation, and Mosaicism (Canadian Down Syndrome Society, 2022).  Like FASD and ASD, the resources on Down Syndrome stress that:

No matter which type of Down syndrome [a] child has, the effects of the extra genetic material will be unique to them. They will have their own strengths, likes, dislikes, talents, personality and temperament. Think of [them] first as a child. Down syndrome is just part of who they are (Canadian Down Syndrome Society, 2022).  

The Society stresses how important it is that we see the ability in individuals with Down Syndrome, rather than the disability.  They urge us to talk and learn from those who are different than ourselves; to be respectful and kind; to use person-first language; and, above all, to remember that a person is not “suffering” from Down syndrome—they like and do many of the same things as everyone else!

The message is clear and the evidence concrete: individuals with Fetal Alcohol Spectrum Disorder (F.A.S.D), Autism Spectrum Disorder (A.S.D.), and Down Syndrome are, first and foremost, P.E.O.P.L.E deserving of our support and respect, capable of living and thriving just like everyone else!

Together in education,

Ms. H

References

Amazing Things Project. (2017, Apr. 9). Amazing Things Happen! [Video]. YouTube. https://www.youtube.com/watch?v=Ezv85LMFx2E

Calgary Herald. (2019, Apr. 24). Frank talk on the stigma of FASD at a Vancouver shelter. [Video]. YouTube. https://www.youtube.com/watch?v=4hKwQQXj2lk

Canadian Down Syndrome Society. (2022). “About Down Syndrome.” [Website – Article]. Retrieved July 22, 2022 from https://cdss.ca/resources/general-information/

CBC News Network. (n.d.). You Can’t Ask That. Season 1, Episode 4: Autism. [Video]. CBC Gem. https://gem.cbc.ca/media/you-cant-ask-that/s01

POPARD. (2022). “Autism and Autistic Traits: A Strengths-Based Perspective.” [Handout]. https://autismoutreach.ca/wp-content/uploads/2022/06/Popard-Handout-Autism-and-Autistic-Traits.pdf

Mass General Giving. (2018, Apr. 9). “Five Questions about Autism.” [Video]. YouTube. 

POPFASD. (2019). FASD Through a Variety of Lenses – Episode 03 – James Reynolds. [Podcast]. https://www.fasdoutreach.ca/resources/all/f/fasd-through-variety-lenses-e03-reynolds?c=fasd-through-variety-lenses

PreventionInstitute1. (2018, Dec. 11). FASD Realities and Possibilities: The Myles Himmelreich Story. [Video]. YouTube https://www.youtube.com/watch?v=B81BNRyrHCg

PreventionInstitute1. (2020, Nov. 4).  FASD – Let’s Change the Conversation: Challenge the Stigma. [Video]. YouTube. https://www.youtube.com/watch?v=Zb5A6eR_0XU