Invisible Victims or Just Siblings?

Before you go further in this post, please read this piece published on Time Magazine’s website:

Autism’s Invisible Victims: The Siblings by Barbara Cain

Done?  Good.  Brace yourselves, folks.  It’s coming.

What the….?!?

I just had to get that out.  The reason being is this – anything painting autism families and siblings as “victims” does nothing but stigmatize autism further and diminish the worth of our autistic children, friends, and loved ones.  It also serves to stigmatize parents who decide to expand their families after having a special needs child, as they can be viewed as making their future children the “victims” of their decision to give birth to them – to include them in the life of their SN sibling.  As if the decision to have another child after having an autistic child isn’t hyper-analyzed by everyone, anyway…

Sure, having a family member with autism or any disability or delay isn’t always easy.  There are extra elements to life that have to be taken into account.  Sometimes, you get shuffled onto the back burner.  It may seem like your sibling is getting all of the focus and attention.  These siblings might feel the need to serve as their siblings’ protector, standing at the ready to assume the tasks of being the primary caregiver of their disabled sibling.  In the Time piece, claims of resentment abound.

Now, I know what you’re thinking – how would I know?  Jack doesn’t have any siblings, so I have no direct experience with relationships between autistic and NT siblings.  However, what I do have is experience being an older sibling to 6 – yes, 6 – brothers and sisters, aged 11 – 27.  I can also tell you that being a sibling at all includes a little bit of everything that we accredit to being a sibling of an autistic child.

Feeling like your sibling gets all the attention?  This is the bane of older siblings, not just siblings of autistic children.  Younger children have the greatest needs – whether NT or not – and require the most focus.  What about all of the focus on therapies, interventions, and doctor’s appointments?  Well, have you ever had a sibling who was very active and successful in sports?  Or arts?  Or dance?  Or drama?  Guess what…it can feel like life revolves around that sibling – that activity – too.  The imbalance of attention and time is a fact of life for all families and sibling relationships, with or without special needs.

What about being your sibling’s “keeper”?  Well, I can say that this is also a common dynamic in sibling relationships – special needs or not.  As the oldest sibling, I’ve often felt an obligation to shelter and protect my younger siblings when I could.  It’s not that they needed the extra attention, but I felt the need to provide it.  With many of our children on the spectrum, I’d argue that they don’t need the doting and babying, either, but we provide it as parents and – I imagine – siblings do the same.  I’d also argue that most parents I know with both autistic and NT children do what they can to ensure that the responsibility for their autistic child’s future care doesn’t solely rest on the shoulders of his/her siblings.

But what if it does?  Will there not be a point in many of our lives in which we are confronted with a similar situation?  What happens as our parents age and lose their independence?  How many of us consider our elderly parents to be a “burden”?  Of course not, but they might require a similar amount of care and responsibility – if not more as they age – than a NT sibling might have caring for an autistic sibling.  Similarly, just as we sometimes face the decision to place a parent in assisted living or nursing care, so NT siblings might have to face the same decisions regarding their SN siblings.  It’s the same situation, but in two different sets of circumstances.  No different, really.

And of resentment?  I’d argue that just goes along with having a sibling as well.  With any of you who have a sibling, have you not resented your brother or sister from time to time?  Isn’t that just a part of being family?

Yet, what Time Magazine and Barbara Cain neglect to acknowledge is the positive impact that having a special needs sibling can have on a child.  She touches on the fact that some choose to enter “helping” professions – like therapy disciplines or special education – but this doesn’t highlight the true good that can result from having an autistic sibling.

I can say this with all certainty, I have bold hopes for our future because of the NT siblings of autistic children that I have been privileged to meet.  These children grow up with a sense of diversity and worth of all.  They are inclusive of the outsiders – trying to pull them into the group – and they look beyond the superficial when it comes to selecting friends and judging others.  In fact, NT siblings are some of the least judgmental people you will meet.  They are selfless, kind, and compassionate.  If we could only have more children in our world with those very characteristics, what a world it would be.

Now like being an autism parent, I do not claim that living with an autistic child is easy.  Nor do I expect it to all be pleasant for NT siblings.  That is part of the reality of living with a loved one with autism.  There are high-highs and – at times – low-lows.  It’s a roller coaster ride of emotions that span from elation to complacency to despair and back again, yet as an autism mom I would not want to be called a “victim” of autism.  I’m not.  This is my life and what I’ve been handed.  I’ve never had a NT child and I don’t know any different than this life.  I don’t feel cheated.  I feel like this is what life has dealt me, and that’s okay.  It’s messy.  It’s not easy.  It’s not always sunshine, but it’s my life.  I’m not a victim.

Nor is it the case for the siblings of autistic children.  Life isn’t all about winners, victims, and the like.  Life is about being.  Many of the struggles that NT siblings of autistic children go through are the same as siblings everywhere.  Many are not.  All shape who they are, for better or worse.  None make these children or family members “victims”.

Jeanie Devine

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