Summary
On Tuesday, November 3, we hosted Why I Needed to Know – A Panel Discussion About Late Life and Self Diagnosis. Our panelists, Mary Byrnes of Harrison’s Hope, Barb Clark of FASD Mosaic, and Wendy Hayes of Never Too Late (NTL) discussed their individual journeys and impact of later-in-life and self-diagnoses. They helped our audience understand that being neuro-diverse, whether due to Fetal Alcohol Spectrum Disorder, Autism, or other brain-based conditions, can bring challenges that are easier to manage when understood. While many people – Humans, caregivers, Service Providers, and Lived Experts included – are often fearful of or may reject a diagnosis, our esteemed panel shared their insights about why knowing was critical.
Soundbites & Takeaways We Loved!
Having the diagnosis can often validate the experience of being neuro-diverse without bringing judgement or blame. Living with the experience but not the reason or helpful strategies can cause undo self-blame, harmful impacts from others, and impede self-actualization.
Diagnostic testing can also provide various brain domain assessments, leading to understanding strengths to build on and identifying effective supports and accommodations.
The diagnosis opens the door to improved relationships as those who care for you, work with you, or are in community with you better understand how to be an ally.
Those who are neurodiverse often “mask” to cover up what feels like a deficiency, which can be exhausting and self-defeating. The validation of a diagnosis leads to being one’s truest self.
Especially at younger ages, symptom overlap can be confusing for everyone. Many times people with FASD or Autism are given incorrect diagnoses which can lead to strategies or treatments that are either unhelpful, or, in some cases, harmful.
The diagnosis can lead to finally accessing treatment, support and strategies that work!
There is also a great deal of grief that can accompany getting the answers that a diagnosis brings. Grief for the younger you that didn’t get what they needed. Grief for the “what could have been.” Grief for the intergenerational impact on parents, self, and next generations. As one panelist said so eloquently, “I grieve not getting a diagnosis for me earlier in life, and could look back at earlier stages in my life with understanding.”
It allows those who love us, work with us, and are in our world understand, offer grace, and make sense of things that didn’t make sense before. It can be healing to relationships.
The knowledge allowed one panelist to be able to establish important boundaries.
Understanding the physiological impact of FASD made sense of the 18 surgeries and ongoing medical issues for another panelist who learned that FASD has an impact on physical health and wellbeing as well.
A question was asked about when to tell a young person about their diagnosis and all three panelists echoed RIGHT NOW! Having the knowledge can decrease shame and blame, give the young person the power and respect they deserve, and improve relationships. A follow up question was about push back from that young person who may be angry at getting one more label. The speakers shared that, for their Lived Experts, knowing gave them a better understanding of themselves and a reason and way to change things for the better.
Some of our favorite quotes that speak volumes:
“Think about labels as flowers in the garden – we can pull some like weeds and nurture others as flowers. Choice is in our control.”
“Try your labels on like a fashion show and see how it fits, for how long, and allow others to change their hoodies.”
“If [the strategies] work for us, they can work for everyone.”
