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Women on the Spectrum RAWRing for Quality of Life

Nobler to Suffer the Slings and Arrows of Diagnosis? Or not?

Say you’ve been “mostly dead” all day, and your true love is about to marry someone else.  The situation looks hopeless, and you’re sure to get hurt in some way.  But you have a lot of choices, so what are you going to do about it?  If you’ve lived under a rock the last 25 years, you probably have no idea I’m referring to the turning point in the movie (and book), The Princess Bride.  (If you haven’t seen it, do–or read it, in some ways the book is better than the movie.)  Either way, take a look at this clip as it nicely frames what I have to say today about Autism Spectrum Disorders (ASDs) and whether or not to pursue diagnosis.

I had a friend write me lately about whether or not to pursue diagnosis for his son, and it reminded me of the same heartachey dance I went through a couple years ago.  (Which naturally reminded me of the Princess Bride, of course.)  After doing some study and taking a million internet quizzes (I’ll put those links up at the bottom of this post), I realized that I was definitely on the spectrum–and if not solidly on it, I had at least one foot on it, and my kids (at the very least) were adjacent.  Since they were struggling in school, and all the “normal” things we had tried to get them to focus, take it seriously and ‘get their work done’ only seemed to be pulling our family apart and sowing heartache in the domicile–I started turning my thoughts toward diagnosing the kids:  to try an approach that would work and feel better for them.

I won’t go in to all the vitriolic reactions that my foray down that path received–that should be a series of posts, and they wouldn’t be happy.  So, like Inigo, I’m going to forego the recap.

To sum up, my husband-at-the-time said my reading list (of ASDs books) was stigmatizing the kids (later he said my diagnosis was “bunk”), my brother said, “why would you label your kid like that” and my sister, post-diagnosis said “this diagnosis makes me angry.”  I’ve made peace with most of those things now, but in the process of finding myself and my own identity through this mess, those statements definitely impacted me and my relationships permanently.  So, despite all this resistance, my own fears about labeling and the stigma of psychological “wrongness” in our society, I still made the decision to pursue my own diagnosis–and I’m far better off today because of it.  In other words, I’ve found my peace with myself, and with a lot of hard work delivered my own sort of “happily ever after”, but the turning point was ugly.

Yet, I remember my search.

I remember indecision, emotional as well as physical pain and the struggle of reaching that conclusion.  Even the day of the appointment, after working so hard to get it (another series of stories for later), I almost couldn’t bring myself to go.  Adrenaline pumped so hard, I almost couldn’t follow the instructions of the GPS (and I would surely have been lost without it).

I remember lurking in internet forums of aspies, once in a while daring to ask the question, to diagnose? or not diagnose?  And in the process of getting my own peace of mind (despite all the people around me telling me leave well enough alone), I witnessed that question posted so many times in so many ways across the webs, that when someone I knew asked, the right response to this pervasive question was obvious to me.  I had to lay the benefits of diagnosis out there for anyone who also might be searching. I’m pro diagnosis.  If you’re wondering about it at all, pursue it.

Now, finding someone who can actually assess you, administer the appropriate tests and medically make that call can be something else to track down–so maybe I’ll post more on that later (if there seems to be interest).  At any rate, as far as the diagnosis goes, here’s why I advocate for getting one.  Now let me tie this into that clip I just showed you, because the assessment Wesley goes through, after being mostly dead is a lot like finally getting that diagnosis when you or your loved one is somewhere on the spectrum.  Honest assessment is the first step to accepting yourself and your situation (also honestly), which is really the only pathway to anyone’s happily ever after–whatever that might mean to them.

5.  Know your Strengths and Weaknesses:

You remember that clip up there, where Wesley wakes up from being mostly dead in a perilous, losing situation?  Once he figures out where he is, and what’s happening, he starts to process how to accomplish his goals (save his true love, Buttercup, from a loveless, coerced marriage).  He asks, “what are our liabilities…what are our assets?”  Of course, they magically have everything he needs to formulate a heroic plan and get to a happy ending, but that heroic assessment is something all of us have to do in their own ways in our own lives.  If my goal is to finish college or climb Everest or storm the castle (or just get through the day without falling apart), then I have to take a good, honest look at the advantages and disadvantages of my situation.

An undiagnosed autistic, who has perhaps spent their life covering up or hiding both their strengths and weaknesses is at a distinct disadvantage here, right?  Imagine if Inigo understated the number of men guarding the castle, or overstated their assets?  Wesley would have come up with a plan sure to fail.  The first step toward success is to be able to HONESTLY know both strengths and weaknesses–you, or your child, may be able to do that without diagnosis, but I sure wasn’t.  There are others out there, many of us adults, who are headed for crises because of our lack of knowledge.

4.  Give yourself the right kind of Self-Care:

“Don’t pester him, he’s had a hard day.”  Amen to that.  In that scene up there, we see Fezzik celebrating Wesley’s little triumphs and making sure that Inigo doesn’t demand too much of him.  This is something everyone, ASD or not, disabled or not, has to learn to do for themselves.  When we are small, our mom or dad or auntie or someone has to do this for us–but by the time most of us reach adulthood we’ve learned much of what we need to take care of ourselves.  Having ASD means that we have a different self-care list than your normal average people.

There’s no shame in this.  We are who we are, our needs are our needs.  It is not up for debate, it is a fact that simply is.  To find fault or embarrassment or disappointment for having needs–well, it’s cruelty of the highest order.  Don’t pester yourself.  Don’t pester your kids.  Get honest and accept the help you need to make things work for you (or your child).

Diabetics incorporate finger pricks and insulin into their self-care routine.  There is no shame or stigma to this.  Those who use canes or walkers or wheelchairs to get around have a different list.  My list is a little different, but before I could take the best care of myself, I had to stop being in denial about the type of care I needed.  I had to own up to the fact that the monster riding my psyche all my life, telling me I was different than everyone else, was actually speaking the truth.  And I didn’t need to fear being not-normal.

If I were to write out all the letters that belong after my name (BA, MBA, BS, CPA-Inactive, PhD…BFD…) you might be impressed.  How about if I told you I pursued all those very official letters to somehow prove to the world that I wasn’t stupid after all.  And why did I feel stupid?  Well, I could work my brain in lots of fabulous ways, but couldn’t get the hang of simply telling the Barrista “No, I don’t want milk, thanks.” or how to answer the phone or take a phone message that made any sense whatsoever.  Getting that diagnosis helped me check my stinging ego and start dealing with my strengths and weaknesses in a realistic, productive way.

This overeducated, smart-mom can’t tell when she needs to pee when the Christmas rush hits all the local stores–the decor, the crowds, the music, the charge in the air overwhelm me and I can no longer feel my body.

Yes, I’ve peed my pants at the Super Wal-Mart.

But I don’t have to suffer shame because now I know it’s not stupidity to blame.  It’s a physical, neurological, pervasive issue.  Now that I know the cause, I can cope in an appropriate way.

Scolding myself for being dumb wasn’t productive.  Coping by visiting the restroom before entering such a sensory barrage–even if it doesn’t feel like I need to pee–is a much better self-care approach.  Don’t you think?

3.  Use the Right Coping Mechanisms:

“If only we had a wheelbarrow…a holocaust cloak…”  Over the years I found lots of ways to control my breath and center myself, but when things started really getting rough for me, especially when I sought professional counseling, I was offered a lot of “help” that didn’t work.  It didn’t work, because they thought I was just an anxious NT, possibly with a lot of abuse in her past.  All that mumbo jumbo wasn’t going to help me face a packed, echoing room at a jiu jitsu tournament where the sensory onslaught brought me to the point of passing out–but once I got some earplugs, I was actually pretty okay.

This is self-care, yes, but it’s important to have a good handle on what kind of self-care you really need in any situation.  A diagnosis can help you, and the professionals, dial in on that when things in your life are intense–not to fix YOU, but to help you fix your environment so that you are free to be the person you want to be.  We tend to be black  and white thinkers, and part of how I stayed pretty safe and mostly out of harms’ way in my life was to have other people tell me who I was and what I SHOULD do–problem was no one saw the whole of me, and I never did until diagnosis either.  (So how could any one else know?)

It took diagnosis for me to objectively look at myself, sort through each idiosyncrasy, fault and failing saying “is this me, or is this a reaction to my environment and is there a way to make this better?”  Without diagnosis, it was easy to pretend all those things were from my own worthlessness OR (and this is a big defense most of us spectrum types use when we’ve been taught to be ashamed of our non-normalcy):  someone else’s fault.

2.  Get the Right Help:

“My brains, your steel, Fezzik’s strength…”  Getting the right help goes hand in hand with using the right coping mechanisms, but it’s about gathering a support network to help when things are rough.  For me, that includes a therapist who works with ASDs, focuses on relationships and uses a cognitive behavioral therapy approach.  I also have a pretty cool group of friends who I am “out” to.  A select few of them understand my true struggles and danger areas.  Then there are a lot of online buddies, and acquaintances who can fill in the gaps.  It’s not perfect, and I’m still building on that carefully–but I’m having to build on it because pre-diagnosis I didn’t realize how important it was and let any potential support system default to my marriage.  Not healthy, but pretty typical of narrow Aspie focus.  Had I been diagnosed earlier, perhaps I could have been more aware or vigilant about that–but then we wouldn’t be talking this way, either.

1.  Freedom to be YOU:

“You just moved your thumb!”  It can be hard to find the bright spots when your world is filled with darkness.  Yet, my black and white thinking has shown me that there is always a brighter side to that pit-of-despair view of the world that says:  you are different, you are odd, you are stupid, no one wants to be around you…and all the other twisted things that grew out of that constant attempt to come off as “normal”.  You can sit around and moan about being mostly dead, and think of how you can’t move and how you’re out manned and even the odds are against you, or you can celebrate the stuff that goes in your favor.  It’s your choice.

Sure, I get overwhelmed in crowds, to the point of being physically ill.  But I have a near-photographic memory.  I can’t tell my left from my right, or recognize faces.  But I can write upsidedown and backwards just as well and fast as most can write right side up and forward.  I lose my ability to speak when overwhelmed, but because of that, I muster my energy to speak and tend to do so only after a great deal of thought–I tend to make words matter.  The things which make me a unique individual are never completely negative, nor are they completely positive.  Like all human beings, I am frail and weak and imperfect.  Full of faults and flaws.  Mine just happen to be…quirky compared to the rest of the population.

Once, I thought it was awful to not be normal–that I should be ashamed of being unable to conform to what everyone else seemed to do so effortlessly, no matter how hard I worked.

Now, I think even my darkest faults have a certain beauty.  You see, my friends, without the darkest night it would be impossible to see the stars.  All of us have been made of light, and some of us have had that light dimmed by the weight and judgment of the world.  Greatest tragedy is that too many of us take on those judgments as our own, because those same people have told us all our lives just how wrong we are about…everything.  I guess what I’ve been going on and on about here is hope that more of us, no matter where we may be on the spectrum, learn to uncover and accept all parts of ourselves.  Embrace your own light.  Make your own happy ending–it won’t be easy, there will be insurmountable and impossible struggles–but aren’t you worth the work?

Do you have to get a diagnosis to do that?  Not at all.  But if you are like me, you might need the certainty of a medical diagnosis to give you the confidence and support to fully accept yourself.  And let’s face it, if you want others to accept you, you will have to teach them to how to do it.  That means, acceptance starts with you learning to fully accept yourself.  Do what works for you in that journey.  Stop worrying about what other people will think, about whether or not a label is helpful or harmful and please, please, please stop looking outside yourself for answers to your own health and happiness.  You are a unique individual, please do walk your own path with your head held high.

You can do it.

I believe in you.

Coming soon:  links to online scentific tests, links to diagnostic resources

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5 thoughts on “Nobler to Suffer the Slings and Arrows of Diagnosis? Or not?

  1. People should not look at a diagnosis as a label but as a key that can help open doors to appropriate supports. Since in some areas it’s especially helpful if that label is a developmental disorder to have it applied in childhood (although reassements throughtout the lifespan are often requested) to not pursue it should be looked at as potentially sending your kid out into the world with one less thing to help them in it.

    It’s only stigmatizing if people believe it to be. Usually I would say having a kid acting like a person on the spectrum in the absence of a diagnosis carries the very real risk of worse explanations coming to mind. More so as the child enters adulthood and people stop considering developmental issues first. If he is on the spectrum a diagnosis that says that will save him a lot of potential treatment for who knows what. My doctor said he had seen a person who had been treated for multiple (and quite different) mental illnesses until enough light was shed on their past to purse an adult diagnosis. Despite a diagnosis I still went through years of treatment for something I did not have only for my psychiatrist to finally give in to over a decade of my GP’s nudging him to consider the autism as primary and then suddenly I seemed much saner. Not having a diagnosis can be dangerous if you are not behaving typically so not pursuing one out of fears of a label well to me that’s crazy (no offence to your friend he may not have thought it through)

    A dignosis will change nothing about who the person actually is. Having the best explanation for why that person varies from the norm is helpful for hundreds of reasons including his sense of his self. It’s far better to know why you are “weird” than to think it’s your fault. I’ve spoken to hundreds perhaps thousands of newly diagnosed people from adults all the way down to the very young and a kid does not have to be very old at all to start feeling ashamed of their differences and relief to have a reason for them.

    • Thank you so much for sharing your insight and your story! My experience with diagnosis was not as prolonged, and thanks to a couple good books about women on the spectrum, I was able to recognize the attempts at misdiagnosis as they were happening. Sounds like you went through absolute hell! I’m very glad to meet you, and very glad that things are better for you now.

  2. Carrie Van Buskirk on said:

    I have often had this similar conversation in my support groups or with friends that having a child that is identified and one that is not, but is displaying the “red flags”. You come from yet another very insightful place as the mother herself facing the diagnosis. I have said to my mother’s, why wouldn’t you pursue the dx? John will still be John…the dx will simply help access interventions and quite frankly will offer some clarity. How does someone embrace or accept something that is hidden, denied, or lacks a name? I feel by not identifying and accepting the “A” word, you are denying who they are to some degree. I am not saying that a person with autism is autism, however the traits of autism do shape who they are…their strengths and weaknesses. And in your case…denying your self would have been the end result. I applaud you and thank you for sharing your perspective as I know for certain I have some parents that are on the spectrum themselves that may be helped by reading this article.

    • Thank you for your kind words. 🙂 Pursuing my own diagnosis was the only way for me to maintain some semblance of peace in the crumbling household and still get access to supports to help my spectrumesque kids. Turns out, it was the best possible thing for all of us, sort of like placing the oxygen mask on my own face before trying to assist another. I think recommending parents be assessed is excellent advice–thank you for offering it to others.

  3. Kiley Quinn on said:

    So well said.

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