12/06/2012

Autism, Siblings, Victims: One of These Words Doesn't Belong

It's been a week since Barbara Cain's article on the siblings of autistic people ran at Time. In that time, bloggers have shared their insights and reactions to her article, to Time's choice of headline: "Autism’s Invisible Victims: The Siblings," and to her novel, Autism, the Invisible Cord: A Sibling's Diary.

There are so many things about the article itself that are striking. I suppose that the fact that a short essay can cause a week of reflection means, whatever Cain's intentions or Time's, the article is a success in that it has generated discussion in the community.

Are the invisible victims of autism really the siblings? Why is it okay to use that kind of language when discussing the effects of neurological delays and differences on the siblings of those individuals actually living with the condition?

Are there victims in autism? Isn't that a personification, harkening back  to that horrible PSA from a few years ago that Autism Speaks did?

Even if we move past the unfortunate title, the very first sentence gives us more to consider: is autism a "virtual epidemic"? Why do we have to be inflammatory? Yes, autism diagnoses have increased, but epidemic should be reserved for actual epidemics. I know, the use of "virtual" cuts that somewhat, but still, wouldn't a less inflammatory way to start have been something along the lines of "With the number of autism diagnoses significantly increasing, it's important to look at autism and its impact on not only the autistic individual, but his or her family members, as well. The impact of autism on the siblings has not been adequately researched"?

I think about this--this idea of siblings as victims--and I try to connect it to other types of neurological conditions like schizophrenia or bipolar and whether we would be comfortable in saying that siblings of those individuals are victims. Certainly, psychological and neurological differences in individuals not only make the individuals' lives more complex and often more difficult, but these issues also have an impact on family members. That doesn't make any of the individuals involved victims, though.

When one child has greater needs than another, it can be all too easy for parents to put greater responsibility on the unaffected child or to neglect that child's need for attention and instruction. It is not the affected sibling's disorder that creates the neglect or the "burden," but instead the parent's failure to successfully navigate the potential pitfalls involved in parenting children with differences. This is not to lay blame at the parents' feet, but it is important to realize that parental education and support can make a huge difference in how families cope with the unique challenges that different neurological and medical conditions can create.

Will life be challenging for the unaffected sibling? Yes. And it can hurt to see your brother or sister struggle, be bullied, and it can frustrate, too. We need to find a way for everyone in the family to safely explore their emotions and express them in an open, honest, adaptive way.

Ultimately, as siblings to individuals with challenges (whether they are those challenges created by autism, schizophrenia, bipolar, ADHD, addiction, etc.), victimhood is a choice we make. So are the feelings of anger, bitterness, and resentment. If you are an adult sibling and see yourself as the victim in the situation and are feeling these emotions, please seek out someone to help you work through those emotions and help you view your experiences differently. I say this as a sister who refuses to believe that my brother's issues in anyway victimized me and as the mother to three children with autism who sincerely hopes my three children will never look at their siblings in that manner.


3 comments:

farmwifetwo said...

I would have to say that many siblings are "victims". I appreciate that advocates for those with mental illness of all kinds don't like to admit to it... but it exists. Maybe not in your house or in mine but in many violence is commonplace and frightening to others.

If it isn't OK to have violence (physical, mental, verbal) between parents that children are subjected too than why is it "ok" to have to live with it if it comes from you sibling.

I find it ironic that parents should have to live with it, children should have to live with it as long as it's the "other child" that creates it. If it was a parent or another adult, the police would be called and that person removed from the household.

A person's place in the family hierarchy doesn't make it "OK"... but mental health advocates need to admit that it occurs - regularly - and people have died because others have suffered from mental health issues - and take these concerns seriously.

Until that happens, until there are adequate services, until "mental heath" isn't a word to advoid or sugar coat... It simply will not happen and parents and siblings and others that come in contact with those who are violent and have mental health issues... will continue to be at risk.

kathleen said...

AARRGGHHHH!! It seems that no matter what "community" you are part of-whether it be autism, mental health, abuse, disease, allergy...being a victim is a major topic. sometimes I think that in this crazy world of ours-we don't feel as if we are validated as human beings unless we are a victim of something or other...Victim hood is a choice, a mantle...sometimes a banner. I am in no way saying that there are not victims in the world! There are. However, I think that people have very odd expectations that life is supposed to be perfect and not messy...which is so far from reality. *sigh*

chavisory said...

Wow, I only wish I could say that it must have been hard for my sister to see me struggle and be bullied.

But she took great pleasure in it. She never even missed a chance to contribute.