Sunday, December 2, 2012

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 today!

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

12 comments:

usethebrains godgiveyou said...

I think it is in the way you see your life, the eyes through which the world appears. When I saw my son as "the other", I suffered continuously.

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.

Toni Fazio said...

I think that the victimizer is Autism itself in this scenario. Not those affected by it.

John Elder Robison said...

Toni, it may well be that the author intended it that way. But as an autistic person, that is not how it felt to me, reading it. Thanks for your thoughts

Rodman said...

Check out the grammar mistake in the second sentence in the article. No qualified proofreaders on the staff? Budgets must be tight!

Zazou said...

Well put, John. Did the author not think about the autistic people who would read this? Are 1 in 88 people and their families not deserving of dignity? The challenges are real enough; we don't need inconsiderate journalism. I loved this sibling's speech about her autistic brothers - perhaps you have seen it already, but here is the link: http://www.ted.com/talks/faith_jegede_what_i_ve_learned_from_my_autistic_brothers.html?utm_source=newsletter_weekly_2012-11-02&utm_campaign=newsletter_weekly&utm_medium=email

Shelly @ Homeschooling Despite the Labels said...

Thanks for your post! I really think that my Aspie's siblings will be very compassionate adults after growing up with their brother. They will probably have a deep rooted compassion for anyone who is affected by an illness or disability. I pray that being the siblings of an Aspie will make them better, not bitter. Definitely no victims in our house!

Raven's Wing Poetry said...

John: I must admit I felt a little weird reading that article. I'm an only child...mostly. From 12 years old until age 18 my mother and I lived with my aunt, uncle, and their two sons. I wasn't diagnosed with Asperger's until age 34, but I'm inclined to speculate that if I had been diagnosed in high school my aunt/uncle/cousins would have considered themselves "victims" of my Asperger's. I was considered the "weird one", was accused of acting abnormal on purpose, and was constantly badgered to be "normal". I also suffered physical and emotional abuse because of this.

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

forsythia said...

I didn't read the article, and i don't mean to always be so pedantic and tiresome :-), but how do you go about recognizing that someone is a victim if they are invisible. Just asking. The author probably wrote in haste and the editor did not give enough time to his job.

Valerie said...

You have great points; did i miss you comment on the article? The author seems to be considering current children with autism and sib's; i wonder if she thinks adults with autism all continue to be like my son, whose language comprehension very limited. Valerie wondersandmarvels-wonderfull.blogspot.com

Kelly McClymer said...

I didn't interpret the article the same way. I agree with your previous commenter who suggested that the author intended to say the family are all victims of autism, not the person with autism.

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.

jess said...

Amen, John. I was deeply disturbed by the tone if the article, starting with the awful title. Yes, autism and all that it brings can be challenging to siblings. But so too the benefit of a life lived fully, with an understanding of, compassion for and an appreciation of the richness and depth of variety on the human spectrum is an immeasurable gift. But unfortunately those positives were relegated to the status of afterthoughts - shoved into an add-on paragraph long after the damage had been done.

Just Be Real said...

I appreciate your honesty. Thank you for sharing. Blessings.