Worth Your Read: Self-Determination

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Can you get up in the middle of the night and microwave a burrito for a midnight snack?  If so, you probably aren't living in an institution.

This "burrito test" is not a measure of midnight snacking.  It's a measure of self-determination.  Can you:

• A) get up in the middle of the night and leave your room? 
• B) easily and freely access a refrigerator and microwave?  
• C) choose a snack that you want that isn't particularly healthy, and 
• D) consume it outside a regular "healthy" eating schedule?

Most people, statistically, pass this test.  But those numbers drop when you start looking at the autistic population, and at other neurodiverse populations.  

In formal settings, "self-determination" is a buzzword.  It's giving the person a choice at pre-determined intervals, in structured decisions, and in activities tailored to the person's interests.  This isn't itself all bad (and it's a major improvement from what institutions used to be like), but it's not true self-determination.  

Self-determination is the ability to push boundaries and take risks.  It's having as much privacy as possible.  It's having the ability to leave situations if needed.  It's going to the nearest fast food restaurant because you felt like it.  It's trying whatever activities in the community you want to, and quitting them if you don't like them.  

Self-determination is scary, and messy, and complicated.  It scares parents of neurodiverse people, especially ones with high support needs.  

The job of a parent, for a big part of a child's life, is to protect them from things they don't understand but could definitely hurt them.  When the child becomes an adult, but still has support needs that make them seem less "adult," parents often still think and treat their young adult as a child.  In fact, the terminology used in some parent advocate organizations is "adult child."  Emphasis on the "child" part.  

This protective mentality makes it really hard to stand back and let the young adult make their own mistakes.  

All parents have to learn this "standing back" mentality eventually.  Parents of neurotypical (NT) children usually handle it easier than parents of neurodiverse children, because the NT children tend to better meet their parents' definitions of "adulthood" than neurodiverse children.   Their capabilities are within "normal" parameters.  

Maybe 18-year-old John (NT) goes off to college with slightly lacking hygiene, little fashion sense, and sometimes forgets to have breakfast.  But his parents won't worry as much about him as 18-year-old Jake (autistic), who still has trouble dressing himself, tends to go on long monologues about the latest comic books, and needs a lot of help to manage his classes, work, chores, and leisure time.  

Both John and Jake could thrive in college, but Jake is much less likely to actually have the opportunity.  His higher support needs are part of that, but they're not the whole story.  Jake might never even be offered the possibility, because his support needs seem impossible to manage in a setting like college.  

This is true of all levels of support needs, in my experience.  I've known fully verbal, well-balanced autistic people in their 20s, whose parents insisted on controlling most aspects of their lives.  It gets less obviously repressive as support needs go up, but the pattern holds.  Parents of neurodiverse people tend to be overprotective, to the point of being oppressive.  And the period of overprotectiveness often lasts much longer for neurodiverse people.  

I go to the parent support group in my area for many reasons.  One of them, though, is to let parents see what their kids might be, given the right supports and services.  It's very easy to look at your child having a meltdown, or being nonverbal, or failing to manage their time, day after day, and think things will never be different.  That you'll always need to be on hand, managing their life exactly the same way at 26 as you did at 16.  

It's hard to let your child make obvious mistakes, and not rush in and stop those mistakes before they happen.  

But you have to.  That's the thing.  Some lessons in life have to be learned personally.  If you aren't allowing us to make mistakes, mess things up, and suffer from the results, you aren't allowing us to grow up.  

I can't give you a good road map for allowing self-determination for yourself, or your child.  That map is different for every person.  But I can say that as your child grows up, the role of a parent shifts.  You start being less "the protector" and more "home base."  

As much as possible, stand back and let your young adult experience the world in the manner they want, try things, succeed or fail, but always have a home base to return to.  You know more about being an adult than they do, so be available to offer that wisdom to them.  Don't shove it down their throats, simply be available.  Accept that growing up includes taking risks, and some of those risks will end in mistakes and failures.  That's part of life, and that's okay!