Anniversary Interview 4: My Parents

Anniversary Interviews

Welcome to the last anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with: (link opens in new tab)

1) New friends: Anniversary Interview 1: New Friends

2) A high school friend: Anniversary Interview 2: High School Friend

3) My husband: Anniversary Interview 3: My Husband

4) My parents

Then, I will share my reflections on the experience. Enjoy!

Note: These are all people who have been actively trying to learn about Autistic people and how to better interact with and support us. Please be understanding and forgiving of anything like using person-first language (“person with autism”), using functioning labels, or anything of that nature.  All of those being interviewed are being gracious enough to agree to put themselves in a vulnerable situation, and I really appreciate that. Thanks!


Anniversary Interview: Mom and Dad

1) What were some of your initial thoughts when I came to you about the possibility that I might be Autistic?

Dad: Well, my first reaction to the notion was “Huh?”  My only personal experience was with children, and most of them were very “low-functioning” boys with “classic” (that is to say, stereotypical) behaviors.  The “highest functioning” high school boys I knew were still largely non-verbal, avoided eye contact, acted out if they didn’t get what they wanted. Not knowing how autism is often manifest in women, I’m afraid I was kind of dismissive because I didn’t see the stereotypical behaviors I had (wrongly) come to associate with autism.

Mom: My first reaction was, “What?”  I mean, Dad’s describing experiences with my students and children from church.  I know a lot about autism, but in retrospect, it’s mainly with autism that creates very diverse and multiple learning needs, including large communication challenges.  Autism is a spectrum, but I had predominantly studied the more challenging end of the spectrum.

2) Is there anything you would have done differently as a parent had you known?

Dad: This is a difficult question to answer.  I admire who you are as a young woman, your many insights and talents, ability to articulate your thoughts, your witty banter.  So, is this who you would be today if we had raised you differently? I think we went to bat for you at school when we knew about issues, but you kept your experiences of middle-school bullying so private that we didn’t know until you were in college.

Mom and Dad: Maybe we would have found a different way for your piano lessons so they would have engaged you more appropriately/deeply, or would have understood that horseback riding was more like therapeutic riding to you and not just considered it a hobby.

Mom: You always had such unique needs anyway, due to your dietary difficulties, that I think we pretty much dealt with whatever presented itself.  There may have been things that went on internally, but you rarely shared inklings of those things.

3) Looking back at me in my younger years, what kinds of things make more sense to you now?

Dad: You may have a different perspective on this than we do, but we tried to raise our children to lead their own best lives, to speak their minds, to develop their interests and talents as they emerged.  We took you to soccer as long as you were interested, not because we dreamed of you being a pro-soccer player.

We didn’t have plans for you to be a straight-A student, or grow up to be a doctor, or a lawyer, or a pastor, or a teacher.  So we always tried to engage the “you” that was presenting at the time, not some artificial expectation of a “you” we had in our own imaginations. For example, you were frequently around hundreds of people (at church, etc.) and we let you engage — or not — as you wished.

Mom: We’ve always raised our kids to be their individual selves, so any journey of self-discovery is great!

Mom and Dad: Since we were taking our cues from you, we’re not entirely sure that knowing about your diagnosis sheds any more light on things.  At least, we don’t have any memories of thinking, “Why is she doing that?!” that knowing about autism helps us understand in hindsight.

Dad: Maybe I wouldn’t have insisted so much on giving goodbye hugs and kisses to grandparents if I’d known how uncomfortable they made you.

Mom: I wouldn’t have insisted on those anyway.  I’m an introvert, so I understand personal space and value quiet or less chaotic environments.

4) What kind of positive changes have you seen in me in the last year? How have I grown or changed?

Dad: The more you learn about yourself (not only regarding autism but also ADD) the more comfortable you appear to be in your own skin, if I can put it that way.  You understand (and own) that your needs are valid and are perhaps your own best advocate for them, such as wearing noise cancelling headphones in noisy public settings regardless of what others might think.  That’s really great!

A meme with a cityscape background and a white diamond in the middle. The text reads "The world is such a loud place and it seldom stops talking. Wearing noise-cancelling headphones allows me to filter out the assault of noise and focus on your voice. SeekingSara174.wordpress.com." There is a graphic of blue headphones in the middle with a tiny heart between the earphones.

Mom: It seems like you have fewer fibro[myalgia flare] days, and this may be because of paying attention to your sensory needs and knowing to take breaks when you need to.

Dad: Yeah.  You continue to push yourself, but now understand the importance of respecting your internal pacing rather than trying to please some external measure of success.

5) What do you think about Seeking Sara? What kinds of things are still unclear to you? What would you like me to write about in the future?

Mom and Dad: I think we’re both really proud of your blog.  It’s quite an ambitious undertaking, and it’s been great to see not only your personal growth in self-awareness but also the number of others who are gaining insights into their (or their children’s) lives.

Dad:  I’m probably biased, but many blogs seem to be rather shallow (“This is what I’m wearing/eating/doing today…”) but Seeking Sara has real depth to it.

Mom: We’re wondering if there are things you think we could have done differently for you in your childhood if we had known.

Dad: I would like to read more about how music affects you, and if there are ways you use music to accomplish certain tasks that you would find otherwise difficult.  For example, if you get anxious before a doctor’s visit, are there certain types of music you listen to that help you center and stay calm? If you become fearful on a long car ride, does music help you address the fear (not just help pass the time)?  I’m also curious about the observed connection between autism and the microbiome/GI issues, but I don’t know enough about this to frame any specific questions.

Mom: I’d also like to know more about how autism gets diagnosed outside of a school setting, because that’s all I’m familiar with.


A huge thanks to my parents for being so brave and open-minded when doing this interview. I love you guys!

A massive thanks to all the people who agreed to be in the spotlight. You guys rock!

And lastly, a big thanks to everyone who read the interviews!

[image description: A picture of blue flowers with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My Parents About My Autistic Self.” The words “Parents” are written in blue while the rest is written in white.]

24: Ritalin, My Life-raft

What started as a series of sleep and nap studies ended in me getting parts of my life back, some of which I hadn’t realized were missing.

In a similar fashion to my ASD diagnosis—where I described the road to diagnosis as “a journey of good luck, strange happenstance, and unexpectedly compassionate therapists“—serendipity, happenstance, and listening to my gut also led to my being diagnosed with ADD (Attention Deficit Disorder).

Confused? I don’t blame you. Here’s what happened:
(Feel free to skip this next section if you just want to read about my Ritalin experience.)


HOW A SLEEP DISORDER DIAGNOSIS LED TO AN ADD DIAGNOSIS

“Sleep disorder, unspecified. Hypersomnia.” I looked down at the sleep study report the doctor had just handed to me. Underneath a big block of medical lingo were those two lines that I squinted at with confusion.

“Hypersomnia?” I asked. “So… like the opposite of ‘insomnia’? You’d said I probably had narcolepsy. Why is the sleep disorder unspecified?”

“Yes, exactly,” she replied. “Based on your nap study, we can see that you clearly have extreme excessive daytime sleepiness and difficulty remaining awake. We suspected narcolepsy, but you didn’t enter REM sleep in your nap trials, despite falling asleep very rapidly in all of them. But regardless, the treatment will be the same as it would for narcolepsy. I’m going to prescribe you a drug called ‘Provigil.’ It’s commonly prescribed for shift workers and narcoleptics. I had a narcoleptic woman start taking it recently and she said it changed her life!”

As I held the first dose, I was anxious, but excited. This medicine had the potential to “fix” me—at least for a while at a time.

I finally worked up the courage to take it, then got busy while waiting the 30-60 minutes it would take to work. In about 30 minutes, I felt an extreme lethargy slowly washing over me. I became even more drowsy than usual, and began to enter a numb shutdown mode.

I felt like I had dived into a deep pool; everything was muffled and cold around me, but I slowly surfaced back up to alertness as the medicine wore off.

The next day, I was determined to try again. “A fluke,” I thought. “I was just too nervous when I took it.” But the same thing happened. It made me feel so strange, having the complete opposite reaction to something.

One text to a family friend (who’s a pharmacist) later, and I had my answer. “Paradoxical reaction/effect” was a real thing! I wasn’t imagining it. It was a rare side effect (2% kind of rare), but it was real and it had happened to others. My doctors told me to stop taking the medicine immediately.

The reaction led me to researching paradoxical reactions, reading about stimulants, and searching on forums for others with similar reactions. I found that some people with ADHD/ADD had had similar reactions. Many of the experiences they described sounded like lines written from my own life. I started to wonder if ADD could be one of the final pieces to understanding my brain. (Note: Anyone can experience a paradoxical effect, not just people with ADD/ADHD.)

My sleep doctor suggested we try Ritalin next. This made me pause. “Should I be talking to my therapist before I start Ritalin?” I wasn’t sure if I should be evaluated by a psychiatrist before starting it, just in case I did have ADHD/ADD.

I decided I should after talking with a fellow Autistic friend diagnosed with ADHD. We talked until 4 AM because things were just finally clicking into place. There were so many “Ah hah!” moments and I began to feel just like I did when I realized I might be Autistic: denial, excitement, dread, grief, anxiety, and finally—utter relief.

So, I brought it up to all 3 of my team: therapist, GP, and sleep doctor. My therapist assessed me and confirmed that I have ADD. My GP agreed to help with dosing for ADD, using the old “killing two birds with one stone” metaphor. My sleep doctor was all for it.

Holding that first dose felt like I was standing on a towering springboard at the edge of the pool. Would I sink to the bottom again? I worked up my courage and took the first dose… and started my new normal.

RITALIN, MY LIFE-RAFT

It turns out that Ritalin works for me. Like, really, really works. Not only does it banish at least 75% of my chronic fatigue while it’s active, it makes me alert and awake, and allows me to function an entire day without crippling sleepiness and an absolute need to nap. I had forgotten what it felt like to be fully awake. For the last decade, it was rare that I could make it through a single day without napping. Now I can do it with relative ease. I’m finding that the day has so many more hours than I remember it having!!

But what happens to my mind is equally as life-changing.

My whole life, I’ve been treading water. I’ve been fighting so many currents, trying to stay afloat. I’ve been fighting to stay afloat, feebly trying to snatch at tasks and getting bowled over by the tide.

A picture of teal waves with lots of foam. Text reads, "Ritalin is my life raft. It keeps me afloat so that I don't struggle to function at a very basic level. When I'm on it, I'm not flailing around aimlessly in the water. I move in a single current with direction and ease."

Ritalin is my life preserver, my life raft. It keeps me afloat so that I don’t have to struggle to function at a very basic level. When I’m on it, I’m not flailing around aimlessly in the water. I move in a single current with direction and ease.

Jumbled thoughts and impulses used to crowd in all around my mind, each demanding to be attended to all at once. My mind would flit from task to task, leaving half-finished projects in my wake. I struggled to begin, switch, and end tasks. Sometimes, I would get so hyper-focused on a single task that hours would pass me by. I labelled myself undisciplined, lacking self control, distracted, impulsive, and lazy.

Since starting Ritalin, I’ve felt my confidence soar, my anxiety levels plummet, and my outlook on life brighten. I’ve been able to look at myself through an even more accurate lens than with just my ASD diagnosis. I’m not lazy; I’ve been working hard just to function. I’m not undisciplined; my mind is moving too fast to focus on one thing for very long. I’m not unusually lacking in self control; I have ADD.

Now begins my quest to adapt to my new normal. For so long now, my life has been built around my excessive sleepiness and exhaustion. It’s been built around my need to hide my frantic, scatter-brained, hyperactive, 90 mph anxiety-inducing mind and my hyper-focused binges. But now that I have the life raft that is Ritalin to help keep me afloat, I can start focusing on things I haven’t dreamt of in a decade.

(…Yes, pun intended.)

 

[image description: A photograph of teal waves with lots of white foam swirled through them.]