Hope, Joy, Love

exploring autism spectrum disorder and asperger’s syndrome

No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.

Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.

Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.

When I shared this with Lilly on Messenger, she quickly replied:

“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”

I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.

Here is her 2010 TED talk:

This short CNN piece combines live interview with clips from the movie:

I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:

“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”

I also found this wonderful video:

There’s a great article on Asperger and creativity here, and another interesting TED talk called Asperger’s: Not Being Afraid Anymore here, and one on meds here. More on girls with autism spectrum disorder here.

People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.

Doing this research was helpful and enlightening for me. I hope it is for you too.

*Not her real name.



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Love, Memories, Videos

the paws that refreshes

December 28, 2009: Exactly when Mom acquired her little grey cat with the big yellow eyes is hard to say, but it was sometime after the spring of 2001 when Mom and I went to Rome on holiday for a week. We stayed at a little family-run hotel call the San Pio, saw amazing sights and created wonderful memories which Mom lost over time, but which I still have for the moment. Mom named Pia Roma for the little hotel and the trip.

I also don’t recall precisely how Pia found her way to Mom. She was either discovered  in the cedar hedge in front of Mom’s or given to her by a friend who lives on the East Road; I don’t remember which. It doesn’t really matter when or how they found each other. What does matter is that Pia became Mom’s best friend, her stalwart companion in the big red brick house on the hill.

Of all the cats Mom had over the years, Pia proved the oddest. In a strange and quirky way, she was the most endearing as well. She and Mom often had tea together in the morning, a ritual I captured on December 28, 2009, and entitled (tongue-in-cheek) The Paws that Refreshes, in which Pia has her share of tea from Mom’s new Christmas mug.

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Care Partnering, Hope, Life & Living

cracking wide open on the radio

Selfie in the Quebec AM, CBC Radio One studio September 26, 2014.

Flashback September 26, 2014: I write and share my experiences to give purpose to this Alzheimer’s journey of Mom’s and mine. There must be a reason (I reason) for our struggle and suffering. Perhaps you are part of the purpose! I hope My Alzheimer’s Story captivates, inspires and/or comforts you. If it does, please share the love like I am 🙂

In March 2014, I spoke about My Alzheimer’s Story  with Quebec AM, CBC Radio One and on-air host Susan Campbell on location at Lennoxville Elementary School. The interview is here. Campbell began following the blog and recently asked me to do a follow-up segment. We did the second interview the day before Mom’s 86th birthday. As we chatted, Campbell asked me about some of the special times I’ve had with Mom, in particular an exchange of “I love you’s” I captured in video in “the most important thing to do when you hit a rust patch.”

I told her the truth: those moments crack me open. Yet through them I’ve experienced a lot of healing. My hurts, disappointments, resentments and negative feelings have been washed away leaving behind a bundle of tenderness, intimacy and beauty in the relationship with my Mom. Getting there hasn’t been easy, but it’s been worth it.

At the end of the interview, which you may listen to here, I read an abbreviated version of “a daughter’s prayer to god,” a poem I wrote when Mom was very sick in May. I managed not to cry the whole way through as I did when I read it aloud for the first time. Several friends who had read the poem told me how powerful it was to hear it spoken. Campbell said her producer Alex, a bear of a man whom I had met at our initial on-location interview in March, had been moved to tears by it.

I’m so pleased people are being touched by our story (see purpose above). In a couple of weeks I’m “guesting” at a half-day college class; I intend to share and discuss some of the audio and video clips from the year I cared for Mom in her own home. I wonder how the students will respond? Will they react like Alex did? Will they feel the joys and sorrows?

Maybe all of us will crack wide open. Maybe that would be a good thing.


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