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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Care Partnering, Family, Memories, Videos

will the real me please stand up?


November 30, 2011: “You’re not my daughter Sue!” Mom is exasperated. “My daughter is a young person, you’re an older person. You could be my sister, but you’re certainly not my daughter.”

It’s early evening, several weeks after I arrived back to live with and care for Mom in her own home. We’re sitting in the den by the fire discussing who I am. The conversation has been going on for a good forty-five minutes. Mom has just finished telling me her name is Patty Macaulay and she’s married to Don Macaulay.

“Do you have a birth certificate Sue? You should have a birth certificate you know.” She’s trying to be helpful.

“I do,” I reply.

“What does it say?”

“It says Mary Patricia Eustace Macaulay and Donald Robert Macaulay are my parents.” I don’t yet understand that I should just go with the flow and not contradict her.

“I find that strange Sue,” she says, incredulous. “I have two children and you’re not one of them. And I don’t think my parents were your parents. I don’t think you were in my family.” The whole thing is terribly mixed up, and Mom can’t believe her ears as I assert that yes indeed, I am her daughter.

I will learn down the line that trying to use logic is a complete waste of time. Worse, it’s counterproductive. It only causes Mom to become more anxious, more “combative” and more confused. But I haven’t experienced enough of the disease or the way it manifests in Mom to know the futility of common sense on this early winter night in 2011. At this point, I’m still a novice. And I’m too busy being fascinated by what she says to be hurt by it. I grab a 2007 picture of myself from the mantelpiece and hand it to her. It takes her less than a second to know it’s me. But not the me in the room with her.

“That’s her,” she says, as she looks at the picture. “She’s got sorta white hair. She’s got hair a little bit the same as yours. She’s whiter than you though. She’s got blue eyes.” She looks at the picture more closely. “Yeah, they’re blue eyes. She’s got a big smile. That’s her, that’s my daughter,” she says with complete assurance. She recognizes the me in the picture, but she doesn’t recognize the me standing two feet away.

“She’s gorgeous I have to say,” I laugh at my own joke. Finding humour is critical to staying sane. I will learn that too, down the line.

“She is a nice looking girl,” Mom agrees, serious. Later on, when we’re both tucked in, she calls across the hall from her bedroom to mine:

“’Night Punkie,” she says, like my nickname is one she will always know, “sleep tight.”

“You too Mom,” I call back. “See you in the morning.”

“Yeah. See you in the morning Punk.” Then she turns off her light, having completely forgotten about forgetting about me. At least today.

If you are upset because a person you love who lives with dementia doesn’t recognize you anymore, you might find these 20 questions helpful,  and you may want to have a look at this link too.

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Family, Love, Tips, tools & skills

50 ways to love your mother

Mom and I November 11, 2014.

I’d been a daughter for 60 years when I wrote the list below with the help of friends and followers. You’d think I would have been and expert at it. Nope. I was still learning. Still exploring. Still discovering what it meant to me. The previous 10 years had changed the way I thought about daughterhood.

I asked friends and followers to share what it meant to them to be a “good daughter.” The diversity of their responses reminded me how individual our paths and relationships are. Inspired by their thoughts and Paul Simon’s tune 50 Ways to Leave Your Lover, I created a list of 50 Ways to Love Your Mother.

It would seem there is no one right way to be a good daughter. Only we can be the judge of our relationships.

50 Ways to Love Your Mother

  1. be caring, sensitive, and aware
  2. do well in school, don’t get into trouble with the law, stay clean and sober, don’t “sleep around” or have children out of wedlock
  3. know your daughterly duties and responsibilities
  4. question everything and be a rebel; question nothing and be a conformist
  5. keep in contact when you’re away
  6. do all you reasonably can lovingly
  7. take care of her when she’s sick
  8. understand her humanity and your own
  9. respect her wishes
  10. respect yourself
  11. advocate for her if she can’t advocate for herself
  12. do little things for her
  13. ensure she has good food, good shelter and good clothing
  14. care for her out of love, even when it’s not easy
  15. take what she taught you and build on it to become an extension of her with your own dreams, aspirations, and desires
  16. become a beautiful friend as well as a daughter
  17. stay close by her side to help her as much as you can
  18. travel far and wide to seek and find your own fortune
  19. be a good person
  20. understand neither of you is perfect
  21. forgive her and yourself
  22. grow into the person God meant you to be
  23. follow your heart’s desire and your dreams, and never forget who birthed you
  24. make her proud
  25. stick up for yourself and defend your rights
  26. stick up for her and defend her rights
  27. follow in her footsteps, replicate her life
  28. avoid making the same mistakes she did, lead a life unlike any she would have dreamed possible
  29. do stuff with her that brings her joy and pleasure
  30. protect yourself, even from her if need be
  31. know when to walk to away and know when to stay
  32. practice patience; practice more patience
  33. give her love and support when she needs it
  34. visit her regularly and spend quality time with her
  35. conquer your  fears
  36. share your joys and sorrows, laugh and cry with her
  37. speak your mind
  38. heal your wounds
  39. listen, listen, listen to her
  40. think, think, think for yourself
  41. see and appreciate her for who she is
  42. love yourself because of yourself and despite yourself
  43. be loyal and compassionate
  44. eat sensibly, call home and drive carefully
  45. be your own person; have your own life
  46. be a good girl; be a bad girl
  47. live purposefully and do your best
  48. get up and keep going after you fall or fail
  49. hold her hand when you cross the road
  50. tell great, funny and touching stories at her funeral

This is by no means an exhaustive list. What would your mother’s list for you look like? What would your list for your daughter(s) look like?

Thanks to these daughters who collectively have about 1,000 years’ experience as such for sharing their thoughts with me:

Sally M, Belinda B., Joan L., Tami Beth L., Alice J.D.Y., Mona N. Rosario V.B. Wyld H., Kathleen M., Sheila S., Helen J. M., Mary M., Joan L., Kathy B., Glenna C., Suzette S., Edith R., British D.S., Alice J. D. Y., Jan R., Kim A. S., Denise A., Siempre M., Stephanie R. J., Alison R., Rebecca B., Beverly D., Suzette S., Sally M., Kathy B., Debie O., Carolyn T., Molly C-K.

Thanks to Tami Beth L. for this particularly touching story. And oh yeah, thanks also to Paul Simon for helping us in our struggle to be free 🙂



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Life & Living, Love, Memories, Videos

we saw love. what do you see?

IMG_6342 copy
September 2013: Mom and I won second prize in the What I See Project‘s worldwide video contest about seeing what you see in the mirror. I’m so grateful we chose to participate in the contest and to preserve the special connection we have. I encourage everyone to be in the moment and to document shared times like these.

Here’s the video, called (descriptively yet somewhat unimaginatively LOL) “I See You and Me:”



What do YOU see in the mirror? Maybe you will find out before I did that in the end we are one.

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