Wednesday, September 25, 2019

How We're Minted: Growing Up With A Sibling With Autism

As in all posts, materiel changes are made in the descriptions to protect identity.

I was taught many years ago that often, people in the helping professions come from dysfunctional homes.  And I have found in my career that indeed, many nurses, doctors, mental health professionals have family histories that include challenges such as addiction, chronic illness, trauma of many kinds and the like.  Many, but certainly not all.

Later in my career I was taught that the siblings of children with severe medical, developmental or mental health problems often become caring and emotionally rich adults.  And I found in my career that this has often been the case.  I've met many siblings of kids I work with and other adults who have sibs with disabilities who are indeed, kind, sincere, hard working, earnest and the like.  Those traits, that experience can lead to great inner strength and self confidence. 

This is true for many, but not all.  Susan's a college student who has a younger brother with moderate autism.  Her brother (and her family) struggles with his rigidity, his narrow emotional capacity, his frustration with his understanding that he has autism and his depression that he's not "normal."  They have dealt with her brother's behavioral challenges and Susan was always expected to help out, to accommodate, to help when asked.  And she did, faithfully.  She understood that her brother couldn't help having autism.  She saw her parents' struggles with him and tried whenever she could to pitch in to help.  Her parents appreciated her efforts on their and her brother's behalf. 

Now in college, Susan has been struggling with significant that anxiety that can be almost paralyzing.  It started as small worries when she was helping out with her brother, the tension in the home such that if things went wrong, someone was likely to yell.  Likely her brother, not infrequently her mother, less frequently, but sometime, her father.  And with the yelling came the sharp sense of responsibility that has grown, now all but out of control. 

She can't decide what to do or concentrate on her academics for fear of getting them wrong (despite that fact that by doing so her grades have indeed suffered, adding to the spiral of anxiety.)  Her social life is flat.  She won't go out when asked, fearing that anything and everything might go wrong.  She might say something wrong or do something wrong.  He probably won't like her anyway.  She's not pretty enough.  All the classic low self esteem stuff that is not at all consistent with what I learned about siblings who have significant disabilities and, as adults, flourish.  Susan's not flourishing.  She's deeply stuck.  She's fears doing all of the normal things that folks with anxiety benefit from, whether it's exercising regularly, learning simple meditation, reading materiel that can help, calling a doctor for medications. She's ambivalent about therapy as well. 

So when speaking with her recently about a problem she was having with a friend, where she was besides herself fearing she would hurt her friend's feeling with a very reasonable request, I asked her where she learned that her needs always came second to those of others.  She shrugged.  I asked her what it was like for her when she was a kid dealing with her brother and whether his needs came first.  She stopped.  She teared up, the pain of bearing more responsibility then she could bear for so many years, of worrying about whomever might yell next. 

And I showed her an ancient coin that happened to be on my desk.  The coin is a couple of thousand years old and has the look that when struck, the stamp that was used was just off center, as is common with such antiquities.  It has quite the imperfect look.  And yet, from the moment it was struck it was legal tender, as valuable as any. And I showed it to her, noting the imperfections of the coin.  Imperfections that reflect those that each of us may have, whether it's struggling with anxiety or depression or abrasive personality traits or whatever other imperfection we may have.  We've all been "struck," like the coin, by the cumulative events of our history.  Nobody really comes through the crucible of childhood unscathed.  Some of us may wear better than others, but we all carry scars of one sort or another.  It's OK to be who you are, whether the scars are large or small, whether you cope well or struggle with coping.  The key factor is to understand that, as the ancient, poorly struck coin, your value is exactly equal to whomever might be standing next to you.  I hope Susan hears that. 

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