The effect of Dad's diagnosis was profound and reverberated deeply down to the foundation of our family. The waves rippled out into not only our immediate relatives but to extended family and even the families of our in-laws. The ripples lightly splashed some and veritably drenched others.
It was a revelatory experience for multiple people, but as I said in the prelude each person's story is their own and I will let them share or not as they will. I will try to limit my own words regarding others to what they themselves have shared openly.
Externally speaking, the effects were most visible to me in my parents. For Mom it answered so many questions, so very many questions about their relationship and marriage. She looked back and was able to see things she had never seen before, including the unique ways Dad showed is deep, deep love for her that had previously been lost in translation. It has been amazing over the last two years to watch her fall in love with him all over again! Everything was seen in a new and refreshing light bringing far more answers than could ever have been had pre-diagnosis.
Dad was reeling from the experience of getting tested and was deeply impacted by the official diagnosis. As I mentioned in my last post he was examining and reexamining so many memories and habits, tendencies and preferences. Nothing had changed but everything was different. There were answers, yes, so many answers, and yet his frame of reference for processing everything had been fundamentally altered. The months prior to his diagnosis had been occupied a lot by discussion of autism and what his results would be, yet by the time his appointment approached he was done. He wanted nothing to do with it. During his test he thought that it was a waste of time, it was obvious that he wasn't autistic. "Really?" The hinted incredulity in the tester's response was the first indication he had that his perception of his answers were not nearly as "normal" as he thought.
The next few days, weeks and months had a profound impact on him and by extension me. On receiving word of his official diagnosis I spent some serious time reflecting on what it meant for him, on thinking back to my own experiences with and knowledge of him, and on my perceptions of his tendencies and 'pecadillos' that made him uniquely him. We went to lunch in those first few days and talked a lot about the whole thing. I was grateful for the chance to spend time with my dad and learn more about him, and he expressed gratitude for the chance to talk about everything and discuss it all, and that I was able to talk about how it had impacted me and discuss what I thought of the whole situation. We spent days and weeks talking about it, and I will forever be grateful for that time we spent together and for just how openly my father discussed his experiences and shared his thoughts.
So many people, the vast majority of people, when they hear that someone is autistic are inclined to immediately jump into stories of their own autistic relatives' or neighbors' children. Alternately they seem to lose the capacity to converse with that person altogether, not knowing what to say or feeling completely out of their depth. I want to say right now that you already know more autistic people than you think. While many of the statistics being touted today regarding autism refer to children, guess what! Those children grow to be adults. Those adults are still autistic, though some of us "pass" for "normal" more than others. We may have different social cues than others but we are still out there, and you already talk to us and work with us on a regular basis. About one in every 60 or so of the people you meet in Utah are autistic. People, not just children. Anyways, moving on.
During the time prior to my dad's diagnosis he was called once again as Gospel Doctrine teacher in our ward. While he is an amazing teacher, it left quite a few people in our ward puzzled and sometimes ... indignant? Is that the right word? He had been virtually inactive for several years prior to the calling, and so many people had no idea why or thought that it was inappropriate that he should be called to teach a class on doctrines that he hadn't been seen to be following by attending church, etc. I will say right now that he has one of the strongest testimonies of anyone I know, and he did not lose it during that time!
My dad finally saw fit to let the ward know about his diagnosis during a fast and testimony meeting, after which while it answered many questions in the ward it changed how people interacted with him. While it mostly seems to have resulted in greater patience, a good thing, it has had one disheartening effect--people don't really talk to him anymore. He used to gave amazing conversations with ward members after his Gospel Doctrine lessons when they'd discuss the lesson he'd taught, or when they'd seek his (amazingly insightful!!) perspective on struggles they were facing in their own lives or with various family members. He has such great love for the gospel and such a great perspective on the scriptures! I never see him more passionate and tuned in than when we discuss gospel principles and how we apply them in our lives.
Moving on to the rest of the family, as I said each person's story is their own. Within a year and a half of my dad's diagnosis the younger of my two brothers, three of my nephews and one of my nieces had also received official autism diagnoses, with another nephew likely. Several adults in our family are now self-diagnosed but have chosen for various reasons of their own to not seek official testing. As to the family-diagnosed part, it spreads up and down on both sides of the family and into the family of our in-laws. I will not mention names or relationships here, though, as that is not part of my story or any of my business to share. There is one exception, and that is to mention that in discussing whether or not one particular member of my family is autistic, Mom said "well if [they are], then Deborah definitely is".
While initially I could see why she had say that, I disagreed politely and moved on with my day. The thought would occasionally (and by occasionally I really mean all-consumingly) pop into my mind though, and I decided to pray about it the next day. The Lord very clearly said, paraphrasing here, 'why yes, yes you are'.
Next Installment: Finding Me - Finding Out
Previous Installment: Finding Me - Nothing's Changed but Everything's Different
Sunday, June 19, 2016
Saturday, June 18, 2016
Finding Me - Nothing's Changed but Everything's Different
These words were first uttered by my Father in 2014 after he became the second person in my immediate family to be diagnosed as autistic. May 20th is now known as "A-Day" and marks the anniversary of his diagnosis, which launched the official diagnosis of 5 immediate and extended family members as well as the self-diagnosis or "most likely" family-diagnosis of several generations of others.
Our family's history of autism diagnoses actually started about six years ago. While driving down the freeway, my dad found himself listening to a talk show discussion of Asperger's/Autism and realizing that the characteristics being described fit one of my brothers, the older of the two, quite perfectly. As he was struggling at college at the time, my parents ended up with him at his University's Autism Clinic. Once he received his official diagnosis he was able to request and receive accommodation at the University in order to continue his education. While it would be reasonable to think that this event would have been the catalyst in our family, it was not the catalyst that it might have been. Our brother had always been unique, different in multiple ways to the point that when the word of his diagnosis spread it was more of an "oh, that makes sense!" moment rather than a shocking "if he's autistic, I wonder..." moment. While there was some discussion of which side of the family his autism would have come from, it didn't ever go very far though I did agree that it was more obviously through Dad. Yes, Dad, this is the first time I thought you might be autistic, not in 2014. It just never really went anywhere. As far as my brother, he seemed to more or less shrug his shoulders, saying something to the effect of "I always knew I was different, now I know why".
Fast forward to early 2014. My parents were on a date, having gone to dinner together. While talking about my other brother, the younger of the two, as possibly being autistic my mom made a comment that absolutely stunned my father. After referencing several things my brother struggled with, she made the comment to my Dad of "that's like you with school". I kind of get a jaw dropped, deer in the headlights mental visual of my dad's mental state when he tells the story and of the impact that line had on him. It began a cascade of thoughts, emotions and revelations in him that lasted for at least two years, only beginning to really taper off about half a year ago. He was on veritable pins and needles mentally, emotionally and even physically for months until he was officially diagnosed, and even then it did not abate as the diagnosis was reviewed, evaluated, inspected, denied, accepted, rejected, denied, denied, accepted, denied...accepted... ... ...
I admit I'm glad I found out at 31 years old and not at 56, as he was at the time. I have 25 years of memories fewer than he did to examine in a whole new light. I do consider myself blessed that I was able to spend a lot of time talking and, more importantly, listening to Dad through this whole experience. I realized then that I knew a lot more about autism than I thought (heh, little did I know then how intimately I know it!) and it brought me even closer to truly understanding the real him, not just my perception of him formed while growing up as his daughter. He talked a lot about his experiences of looking back through his life and seeing his past in an entirely different way. Nothing had actually happened to change those experiences except how he saw them, yet oh how differently he saw them! Two months later my Mom even created a facebook post centered around the whole concept, heading it the same way I did this post. Nothing's changed but everything's different. We all began to look back at our pasts, seeing just how immense an impact my Dad's previously undiagnosed autism truly had in our parent's marriage and in our own lives.
Next Installment: Finding Me - The Ripple Effect
Previous Installment: Finding Me - Prelude
Our family's history of autism diagnoses actually started about six years ago. While driving down the freeway, my dad found himself listening to a talk show discussion of Asperger's/Autism and realizing that the characteristics being described fit one of my brothers, the older of the two, quite perfectly. As he was struggling at college at the time, my parents ended up with him at his University's Autism Clinic. Once he received his official diagnosis he was able to request and receive accommodation at the University in order to continue his education. While it would be reasonable to think that this event would have been the catalyst in our family, it was not the catalyst that it might have been. Our brother had always been unique, different in multiple ways to the point that when the word of his diagnosis spread it was more of an "oh, that makes sense!" moment rather than a shocking "if he's autistic, I wonder..." moment. While there was some discussion of which side of the family his autism would have come from, it didn't ever go very far though I did agree that it was more obviously through Dad. Yes, Dad, this is the first time I thought you might be autistic, not in 2014. It just never really went anywhere. As far as my brother, he seemed to more or less shrug his shoulders, saying something to the effect of "I always knew I was different, now I know why".
Fast forward to early 2014. My parents were on a date, having gone to dinner together. While talking about my other brother, the younger of the two, as possibly being autistic my mom made a comment that absolutely stunned my father. After referencing several things my brother struggled with, she made the comment to my Dad of "that's like you with school". I kind of get a jaw dropped, deer in the headlights mental visual of my dad's mental state when he tells the story and of the impact that line had on him. It began a cascade of thoughts, emotions and revelations in him that lasted for at least two years, only beginning to really taper off about half a year ago. He was on veritable pins and needles mentally, emotionally and even physically for months until he was officially diagnosed, and even then it did not abate as the diagnosis was reviewed, evaluated, inspected, denied, accepted, rejected, denied, denied, accepted, denied...accepted... ... ...
I admit I'm glad I found out at 31 years old and not at 56, as he was at the time. I have 25 years of memories fewer than he did to examine in a whole new light. I do consider myself blessed that I was able to spend a lot of time talking and, more importantly, listening to Dad through this whole experience. I realized then that I knew a lot more about autism than I thought (heh, little did I know then how intimately I know it!) and it brought me even closer to truly understanding the real him, not just my perception of him formed while growing up as his daughter. He talked a lot about his experiences of looking back through his life and seeing his past in an entirely different way. Nothing had actually happened to change those experiences except how he saw them, yet oh how differently he saw them! Two months later my Mom even created a facebook post centered around the whole concept, heading it the same way I did this post. Nothing's changed but everything's different. We all began to look back at our pasts, seeing just how immense an impact my Dad's previously undiagnosed autism truly had in our parent's marriage and in our own lives.
Next Installment: Finding Me - The Ripple Effect
Previous Installment: Finding Me - Prelude
Friday, June 17, 2016
Finding Me - Prelude
Today I went with a friend to see the movie "Finding Dory", a beautifully made movie about an amazing character with great gifts and one particular big challenge. Seeing Dory go through her challenges reminded me of a few things I want to talk about. While I do not personally struggle with short-term memory loss, there are a few other things I've experienced that I have been coming to understand in much greater depth this last year or so, particularly over the last few months. These experiences have actually led to me not being able to remember most of my childhood; only as I've been seeking to understand myself over the last little while have I been okay delving into the depths of me.
I've made it sound so ominous--I will say right here and right now that I did not have a bad childhood! I am in a loving family with incredible parents and awesome sisters and brothers. I had no major traumatic events in my personal history. I am grateful for my entire family and have lots of good memories of fun times, and have a lot of love for each and every person I am privileged to call a part of my family! If you feel that any particular experience in this blog series refers to you, please know that I am not saying anything from a position of bitterness or out of a desire for revenge or to call anyone out. I simply want you to know me a bit better, since no one ever wants to actually talk about the "A" word except for Dad and occasionally Mom, yet it has impacted so, so many parts of our lives individually and as a family. Positively and negatively. Know that I love you more than you can imagine.
For those of you who are not "in the know", the "A" word to which I am referring is Autism. Yes, I am autistic. Yes, I know that many of you already know that. No, I do not expect anyone to do anything about it. Yes, finding out has had an absolutely paradigm-shifting effect on my perception of myself and my entire life, much as it has had on others in our family. No, no two experiences are alike, as no two people are alike. This is my story, yours is your own.
I've titled this series of posts "Finding Me" because of the surprising accuracy of that statement in what has been going on this last year. I am increasingly awed at just how much weight that statement has, and at how extremely appropriate a title it is for the movie Finding Dory. It is exceptionally insightful in hindsight. I can finally look at my own life in hindsight, and find myself relating so much to the entire concept.
Stay tuned for the next installment: "Finding Me - Nothing's Change but Everything's Different"
I've made it sound so ominous--I will say right here and right now that I did not have a bad childhood! I am in a loving family with incredible parents and awesome sisters and brothers. I had no major traumatic events in my personal history. I am grateful for my entire family and have lots of good memories of fun times, and have a lot of love for each and every person I am privileged to call a part of my family! If you feel that any particular experience in this blog series refers to you, please know that I am not saying anything from a position of bitterness or out of a desire for revenge or to call anyone out. I simply want you to know me a bit better, since no one ever wants to actually talk about the "A" word except for Dad and occasionally Mom, yet it has impacted so, so many parts of our lives individually and as a family. Positively and negatively. Know that I love you more than you can imagine.
For those of you who are not "in the know", the "A" word to which I am referring is Autism. Yes, I am autistic. Yes, I know that many of you already know that. No, I do not expect anyone to do anything about it. Yes, finding out has had an absolutely paradigm-shifting effect on my perception of myself and my entire life, much as it has had on others in our family. No, no two experiences are alike, as no two people are alike. This is my story, yours is your own.
I've titled this series of posts "Finding Me" because of the surprising accuracy of that statement in what has been going on this last year. I am increasingly awed at just how much weight that statement has, and at how extremely appropriate a title it is for the movie Finding Dory. It is exceptionally insightful in hindsight. I can finally look at my own life in hindsight, and find myself relating so much to the entire concept.
Stay tuned for the next installment: "Finding Me - Nothing's Change but Everything's Different"
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