Are Siblings Really "Invisible Victims of Autism?"
What is a victim?
The word may be defined as: a living thing that is adversely
affected by the action of something else.
What does that make the “something else?” The victimizer.
Here are some appropriate examples that will be familiar to
all of you:
Bob was the victim of
a sophisticated swindle
The victim,
thirty-year-old Jessica Danes, was shot twice at close range
Don’t become another
burglary victim. Buy an Acme Alarm
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In every case the victimizer is someone undesirable. A swindler, a murderer, or a burglar. Indeed, the word victimizer has no positive
connotation in our society. It is not a
label anyone any reasonable person would want to wear.
With that preamble, here comes a headline from Time
I was shocked to see such a phrase from a supposedly
progressive mainstream publication.
Left unsaid – but obvious – is the identity of the
victimizer. It is us! We autistic people are victimizing our poor
siblings. With everything else we’ve
done wrong growing up, victimization of our brothers and sisters is added to
our burden, thanks to this article. At
least, that’s how author Barbara Cain seems to see it.
It troubles me greatly when mental health professionals make
pronouncements like this, as if we autistic people are oblivious to what they
say or do. Siblings are not “victims of
autism.” They are siblings of autistic
people. Period. Some things about family life are easy. Other aspects are hard. Autism
is one of those things.
Does autism make life tough for us and our siblings? Sure it does, sometimes. Does autism show us a fun and funny side on
other occasions? Sure, it does that
too. Some of us revel in our
eccentricity while others would give anything to be rid of this autism
thing. All the while we have one thing
in common – we are not victims or victimizers.
We are just autistic people. Our
siblings aren’t victims either. They are
our brothers and sisters, sharing in life’s joys and struggles.
Autism is a permanent state of being. It’s how we’ve been as long as we can
remember, and how we will be – for the foreseeable future. We will change, grow and develop, but we will
always be autistic. Victimhood – in
comparison – is a temporary state. We
may become victims at any time – of a robbery, a building collapse, or an
Internet scammer. But those things will
pass. They do not define who we are in
the way an essential difference like autism does.
Some may defend this article by saying autism affects
everyone in a family negatively, like poverty or a hurricane might. That’s a flawed defense, though, because
hurricanes or poverty are faceless victimizers.
Anyone can blame them, but its meaningless because they are no one. We autistics, on the other hand, are
people. Real people. Your brothers and sisters. With that fact in mind I repeat – we are not
victimizers.
Many in our community have argued against the demonization
of autism and autistic people. It’s
distressing to see the same tired phrases repeated in a national forum like Time. I’m sure the writer had good intentions, but
the implementation leaves much to be desired.
Does that mean we should ignore the pain of autism
siblings? Of course not. Those of you who follow my writing and my
service on the IACC and autism science boards know that I have a strong
commitment to develop ways to relieve suffering and disability caused by
autism. It’s natural to think these
therapies, tools, or treatments would be aimed at the autistic people
themselves but in fact we must help everyone in the “autism circle.” That certainly includes the parents, and yes,
the siblings.
We must also change our world to be more accepting and
accommodating of autistic people. That
will reduce suffering for all of us.
Meanwhile, let’s keep the word “victim” out of the autism
conversation.
Best wishes to all of you this holiday season.
John Elder Robison
Comments
Evil, victimizing autistics. Me thinks it might be "transference".
We really, really need to change the way we look at autism. As long as "normal" is celebrated and autism demonized...I don't think we are going to get anywhere.
Is autism an easy thing on the family? No. Heck, autism isn't an easy thing for US. I do, however, think that the author needs to understand that a) there may be autistic people reading that article, b) we do understand what is being said about us, often under the assumption that we *don't* hear or understand, and c) framing autism in the manner that she does isn't going to help the general public understand it any better. And I'm not saying that everyone will blame us for the pain and suffering, but some still might due to the tone of that article and others like it.
-Nicole
I want to add that I consider my non-Aspie daughter and son to be victims of autism in a different way than =my Aspie son. My two other children (all grown now) learned a lot about walking in another person's shoes living with their unconventional brother and in no way were they his victims -- they still have a great relationship now and there are no lingering resentments that I can see. My Aspie son is a low-communicator (he thinks "Yes, I am" is too wordy :-), but everyone in our family knows that when he does decide it is worthwhile to join the conversation, his contribution is likely to be insightful, droll, or flat out funny.
The funny thing is, that as I read your words I rejected the person with Aspergers as a victim, but I went to a more personalized victimizer -- myself. My non-Aspie children got so much less of my time and attention than they would have otherwise if I had not been hyperfocused on how to make sure my Aspie son learned the necessary coping skills to create a happy and fulfilling life for himself when he grew up.
If there was any human victimizer, it would have been me, the mom, who really did focus less on my other children's problems and struggles to fit in and figure out their lives. Which may be why I prefer to believe the interpretation that makes autism itself the victimizer.
Saying the person with autism was a victimizer would be like saying the person with cancer was victimizing the family. Absurd from every angle.
And thank you for being such a great voice for people with autism.
Being the sibling of someone on the autism spectrum, I could relate much more with the Time article than what you were saying here.
So yeah, we can be the invisible victims.
My mom would just say she was "QuIRkY" and wouldn't do anything about it. I kind of hate her for not protecting me from my sister more. my parents could have done something to keep me and my sister from being bullied and beaten our whole childhoods.
So yeah, we can victims.