On Neurodiversity Training

In the efforts to educate the workforce and schools in our culture, I have personally heard anecdotes and read articles on places having experts come in to do inclusion training. While a worthy intention is there: to establish an environment of understanding and compassion, it misses the mark when sweeping statements are used without care. Man, I take issue with the way some experts going about these trainings.

I have been processing this thought in my mind for years now. It grates on me particularly at this time of year as we approach April and "Autism Awareness Month." So, I'm taking to writing about it to head off some of these well-meaning trainings before they occur. I'm sure many are already in the planning stages as April is only two months away.

One expert explained "everyone has a little autism" in them during one of these trainings. "Do you notice the buzzing of the light sometimes and it annoys you?" she asked. "Have an itchy sweater on that distracts you? That's your own little bit of autism."

Whoa. This is where Neurodiversity training goes off the rails for me. It is as simple as this: autism is a complex medical diagnosis that not everyone qualifies for; similarly, everyone does not find themselves under the treatment for chronic illness or autoimmune disorders because they experienced a single moment of discomfort that is similar to the larger, more exhaustive diagnosis.

Simply said, everyone does not "have a little bit of autism in them." That would be like me saying, "everyone has a little bit of psoriasis" when you have dry skin or "that's your little bit of rheumatoid arthritis" referring to your achy joints after a workout. It is...just...Not. True.

Autism is a spectrum disorder. Yes, the neurotypical (aka: person without autism) falls on that spectrum, but at the stark end of having none of the insistent symptoms that most of the time occurs within an autism diagnosis. Sure, people may find certain sensory or social situations uncomfortable, but that does not make them autistic. Not even a little bit. They may have special interests or hobbies that rock their world. Nor does this qualify them for such a statement.

Going back to those medical diagnosis's- chronic or autoimmune disease are the extreme, rare cases of a collection of specific symptoms that may include itchy or dry skin. May include moments of sore joints and discomfort. But, there are spectrums that exist within the specialties of dermatology and rheumatology, or any medical area for that matter.

That awareness of those slight agitations (the noisy lights or the itchy sweater) that most are able to pull their attention away from and place it back to the more important and pressing matters of oh, working or learning, allows them to EMPATHIZE with the person who is on the spectrum because they are experiencing a small piece of the daily deluge of symptoms that impose themselves on an autistic individual daily. It allows them to see into my world a little bit. But by no means does it qualify them to be "a little autistic."

The trainer should tweak the presentation. Present an audience of autistic individuals their material first and ask for feedback. And listen. Explain that we can all experience things within our environment that make us uncomfortable and we can use those moments to remember that a person with autism is experiencing those things on exponential levels all of the moments that they are awake.

Research can only do so much when it is presented without the voice of those that it is representing. And, trainers need to focus on the point of what to do in response to the recognition of workplace or school environments that are not neurodiverse. What you do with the information after the fact is just as, if not more, important of the awareness.

On the Stigma of Medication

There was a time years ago that I believed that taking medication was a sign of weakness. That it proved that there was something "wrong" with me. That is was a tangible way to prove my brokenness to the world- especially when I had to go to the pharmacy and they would discuss my medications with other patients too close. At those times, it was a head-hanging, don't-make-eye-contact type of moment. I would think "Shhhhhhsh. They'll all hear you."

I battled with my sleep doctor for almost a year over the fact that I did not want to take medications to control my sleep disorder. Even after Brent and I discussed with her my "taking care of the babies" years ago when Brent would wake me and bring me back to bed. Even when we explained the multiple incidents of me punching and kicking Brent as I tried to escape dangers in my dreams. I tried melatonin- but it didn't help completely. She explained the best way to keep me in bed, to keep myself and my husband safe while I was sleeping, was to take a particular medication that is proven to help this disorder. I said "no" and continued to do so after multiple sleep studies and anecdotal evidence that supported the diagnosis of REM Behavior Disorder.

Easiest way to explain this: people with this sleep disorder act out what they are dreaming. Most people's bodies go into a state of paralysis during REM sleep- it's a built in protection that keep our bodies from doing what are brains are dreaming about. A fellow REM Sleep Behavior Disorder sufferer went through the similar process of denial, danger, and eventual realization that he was not going to get better until he saw a sleep doctor, got himself healthy and took his meds. You can check out Mike Birbiglia's journey in his independent film Sleepwalk with Me or on his stand up album with the same title. Mike says it best:

"It was like one of those stories where people wake up after a hard night of drinking...but it was in my living room" [where he had crushed his TeeVo after climbing onto the furniture to celebrate his win in the Dustbuster Olympics- truth.]

Mike goes on to say "This was the first time I remember thinking 'well this seems dangerous, maybe I should see a doctor. And then I thought, maybe I'll eat dinner. I went with dinner. [...] Sleep walking is a terrifying experience because it's your body making a decision that is different from your conscious mind. Your conscious mind is like "we're going to rest for a few hours" and your body is like "let's go skiing!" I skipped ahead to a chapter on sleep disorders. And I find a disorder called REM Behavior Disorder where people have a dopamine deficiency- that's the chemical that's released in your brain into your body when you sleep so that you don't do what is in your brain. [...] I saw a doctor who specializes in sleep disorders. So now, when I go to bed at night, I take medication..."

So what happened to me this weekend? After a few odd circumstances that were out of the norm, I came into the long weekend without my medication. I made phone calls, went to urgent care, spoke to the on-call nurse. I was told that it was not an emergent need and that unless I was in danger of hurting myself or others, that it was not necessary to go to the ER. I felt beat up- this is the first time in my life of taking medication to mitigate my sleep disorder symptoms that I had ever dropped the ball on making sure that I had my medications. And, I was beginning to feel as though I was being treated by some of the medical staff as a junkie. 

My literal brain went into that place of, "keep it together, Sara" and I started experiencing symptoms of my withdrawal from my meds on Sunday afternoon, in addition to not having good sleep for three nights. The withdrawals from this medication are legit and awful. I was clammy and had the shakes for two days and counting. My head was pounding. My sensitivities to light and sound were amplified. I quarantined myself to my bedroom to keep from showing how badly this was affecting me to my sweet son. He didn't need to see me at my worst. In moments that I couldn't control my body's jitters and shakes and muscle spasms. 

But then, last night, he asked. And I could not withhold information from him. So, I told Jackson that Mama was having a hard time without my medications. That it is called withdrawal. And that it would not go away until I had my medication in my system. At the doctor's office and pharmacy multiple times, Jackson stated "Mommy's going through withdrawals from her medication." And, I winced every time. That shock and embarrassment of they're going to know ate away at me. But why?  I hadn't done anything wrong. All I did was miscount my meds before a holiday weekend at a time that I believed I had more refills because for the past two years, I was able to have three refills per paper prescription. So, the routine got me. I wasn't aware that my prescription for traveling was only for one month. I also had bought a pill organizer so I would be able to make sure I knew if I took my meds or not. But, all of this caused a snowball affect that created a nightmare of an experience. 

Yes, it is difficult to make the decision to take medications that cause my central nervous system to do what it should naturally do on its own. It's anguishing to know that I cannot respond to my son's cries for his parents in the middle of the night once my meds are onboard. It is something that I had to come to terms with as I grappled with the decision about future babies for our family- how would we handle me needing to take this medicine and needing to get up in the middle of the night to take care of a newborn? So, yes, it is a decision I make everyday. One that is not made lightly or on a whim. I have matured enough to know that for me to be the best me, the one that will fulfill all of my God-given abilities here on earth, I need to be well-rested. I need to not be injured because I jumped out of our bed to catch my purse as it floated away in the ocean. (Yup. That was a thing...) I need to be able to go to sleep knowing that I'm not medicating myself to be numb or to not feel or anything else. I'm doing it because it is what my body needs to be healthy. And safe. And at the end of the day, it is the best decision for me. And my family. 

I saw the other day on The Mighty an article about a fellow autism mom and autistic woman who felt compelled to show that admitting we need help- physically and mentally to get through this is not a weakness, but a strength. This has tugged at my heart for days considering the ordeal that I have gone through with my own medications over the past five days. So, I urge you to check out Erin Jones' blog Mutha Lovin' Autism and her story because she has inspired me to post how I am #medicatedandmighty.

*Note: Shared with Jackson's permission after reading him the post. 

On "Normal"

One thing that I have found in my time being a parent and person on the spectrum is that there is no "normal." We should take that word right out of the vernacular of special needs, autism and the spectrum right now.

I also struggle with the diagnostic codes of "low" and "high" functioning. Yes, they are useful for doctors and therapists to know what they're walking into to begin with, but they cannot define any one person's experience.

Recently, we decided to look into different schooling options for Jackson's next year of school. We had to explain our reasons why without going into too much detail regarding our struggles in IEP meetings. When discussing with Jackson that his behavior at school was not what his teachers and the staff expected to see as "autistic" behaviors, he asked me to explain. I clarified with one sentence: "Jackson, you do not look autistic to them." His mind reeled in ways that I didn't expect: "But, Mama. What does autism LOOOOOOK like? That's so dumb...I'm 'artistic.'" (Note: Jackson means "autistic" but struggles to pronounce it correctly; it comes out as "artistic" often.)

I went onto explain that there are behaviors that his teachers and support staff (Speech/Lang. Pathologist, Diagnostician, etc.) are looking for when they observe and interact with him. More specifically, the obvious signs. Hand flapping. Verbally ticking. Not interacting socially. Little/no eye contact. Which, when they look for those, none are visible...because he's not in area of the spectrum. 

He hums/sings/plays on repeat songs over and over, specifically Star Wars themes and battle tunes. At times, friends tell him his behavior is "annoying" directly in front of me. (Which, I do not love, but when I explain it to these friends' parents, if these interactions do not occur organically, we are not able to help him appropriately respond.) He is verbal...to the point that I sometimes wish that he wasn't as verbal. He will incessantly drone on about his recent obsessions. (Which, let's be real here. An 8 year old boy's obsession with the finer points of Star Wars artillery can only be attended to by one person for so long.) He makes eye contact...but only sometimes. When he knows the person. When he is talking. Otherwise, he'll make fleeting eye contact, which is a learned behavior,  because I taught him to do that starting when he was two years old by telling him to "find a freckle" on my face so that he would at least just look in my direction. Yes, he plays with other kids. But what happens when they try to change the rules to a game or behave in ways that are unexpected? Shutdowns and meltdowns that can last for hours that I will respectfully withhold from you, the reader, to protect my family's most difficult and challenging moments. And the list goes on... 

I explained to Jackson that at this school (that will, in fact be his school next week), he will not have to hide in the bathroom to practice his Occupational Therapy techniques or to get away from the noisiness of his class. During our visit there, a child asked a staffer there for his "noise canceling headphones."* At which time, that staffer told him to go to the office and ask for them to retrieve them from the special needs teacher's office. Jackson's eyes lit up and he looked at me with a small smile. I knew what that was about: when I told him during our original conversation that many kids wear them at this school, not just kiddos with autism, he exclaimed "So, Mama! That means that I'll be able to wear mine without anyone making fun of me?" I nodded. He continued, "Mama, at this school, it sounds like I'll just be able to be me." Insert smile. And, my heart nearly melted. Because, as a parent, isn't it exactly what we want? It is for me. One of my biggest goals in life is to raise Jackson to live authentically as himself.

The thing that I repeatedly toil over in my mind. The piece of that interaction that I cannot get past, that I fought with at the final ARD** meetings at his previous school is this: how much of my child's brain power was being used each and every day to just maintain this appearance of normalcy? How much of his focus was on trying to be someone else so that he wouldn't be made fun of by his classmates (although it still occurred)? And, just how much of that super intelligent brain of his could have been working on more educational pursuits than this job of holding himself together? And, at this new school, there is the opportunity for a perceived normalcy for Jackson, because there are other children who are able to access the things that they need to be able to succeed in a safe environment.

Back to the main point. This "normal-ness" that we assume is there. This "level" (and I mean that to be emphasized to the one millionth degree) it is perceived in snapshots of his life. Of my life. Of ANY one person on the spectrum. Because at any one moment, Jackson or myself...we can look "high functioning," (perhaps a version of less-than-Autistic). We can fit right in. But, when that sensory and social threshold has been met, which is usually at the end of our days, when we are at our worst, we might appear to be "low functioning." 

I urge you to look into the lives of persons who were assumed to be "lower" functioning in their early Autistic lives and see where they have been able to accomplish. Look up Temple Grandin, Jacob Barnett, John Edler Robinson. Appearances almost always are deceiving.

*We own four pairs of these; literally, so we do not leave home without them. There is a pair in each of our vehicles, one in Jackson's room for overnight thunderstorms, and a pair recently purchased to be left at school.

**In Texas, the name for an IEP meeting is an "ARD" which stands for "Assessment, Review and Dismissal." We were told that this is the case because those are always the goals for special needs services within the public school system. 

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.