Tuesday, March 20, 2012

Siblings and Autism

Article first published as Siblings and Autism on Technorati.

A Kermit the Frog doll dressed for school, next to a Kermit without clothes.
On Thursday, March 15th (the Ides of March), our school district held another seminar on Autism. The topic this week: siblings of a child with Autism, and how they deal with their situation. With more children being diagnosed with Autism, and many within a family where several children are neuro-typical, it’s raised some questions on how these children feel about their sibling with Autism taking more time and attention from their parents.

We started with a panel of siblings, and they fielded questions about what they were expecting, and how Autism has influenced their lives. And then we had a presentation from Utah Family Voices about how siblings have expressed their concern. The presentation was very informative, and doesn’t just apply to siblings, but for any children that feel “neglected” by additional attention being given to a child with Autism.

One question that came up was how having a sibling with Autism affected dating. Most of those who answered the question said they haven’t seen a problem, as they tend to look for someone that is more compassionate and find their sibling as a perfect test. Others have said that it has changed their dating experiences, but often they were not “serious” relationships that were affected. What the director from Utah Family Voices shared is that most siblings want to find someone who is understanding of their family, including their sibling with Autism, and want someone that is supportive. Personally, having grown up with a brother who was undiagnosed but has Aspergers, I found that he was a very good judge of character in many of the young women I was dating.

The Role of Caregiver
This was a big one: the Role of the Eldest Child in taking on responsibilities of the Parent when they are gone. The reality of many children on the spectrum is their dependence on others to live. They require care at some level, and parents will not generally outlive their children. It’s difficult for many parents to think about that eventuality, but it is nonetheless true. And often, parents assume that their oldest child will be willing to take care of their sibling once they are gone. For the sibling, they often resent this assumption.

Of course, this doesn’t change the reality, and many siblings just deal with that requirement. But the time to talk about the responsibilities and how it will affect their lives is early on: they need to know when they are in their early teens what is expected, and what they want to do with their lives. It helps them have that responsibility in mind, and perhaps give them the chance to decide if they want to be a care-giver, or just a support. It’s a tough discussion to have for all concerned, but one that needs to be had as early as possible.

Explaining Autism to Friends, Family, and Strangers
This was a big topic as well, because it’s something with which we have all had to deal at some point or another. It was focused on friends of a sibling, but it became more of a discussion on how others perceive Autism, and how we can educate them. Autism is a genetic rewiring of the Brain that we are just starting to understand. As such, those with Autism behave differently than others, but don’t have any outward differences that distinguish them as “special needs”. During the 1960’s, it was believed that Autism was the result of bad parenting, and that has somehow stuck. So we talked about how we can educate others to the realities of Autism.

There have been a number of different responses. Some talked about cards with details and websites that explain Autism listed. Others talked about various t-shirts that exist that say “I have Autism, be nice to my Mom”, or “You can stare all you want, but I still won’t acknowledge you”, or my personal favorite, “If you stare hard enough, you may cure me, and then we can work on your social issues”. We found that the best response to the criticism of Autism is to handle it with humor, and then find ways to educate others. For family, often it’s a good documentary on Autism (found on most PBS stations, websites, and video stores), or a news piece. For friends, the News or websites that outline what Autism is, and how it affects the lives of those around them. For everyone else, websites that outline research generally helps, particularly for those healthcare and education professionals that seem skeptic as to the realities and extent of needs children with Autism have. That is where the cards come in handy.

Siblings often get angry, resentful, and frustrated that their lives are changed from “normal” because of a child with Autism. And while we would like to think that our children are completely supportive because they understand how important it is we help our children with special needs, they have a natural reaction of wanting more attention. They therefore find ways to act out, sometimes even to the extent of declaring their hatred of their sibling.

What we as parents need to understand is that our children are reacting normally, and that these feelings are real and need to be discussed. Sometimes our children will not want to discuss their resentment, because they know it’s wrong and feel guilty about those feelings. But while they may not be what we expect, they are still very real feelings that need to be addressed.

How do you know your child is resenting their sibling with Autism? They will often react in one of the following ways:

  • Mimicking behavior: they will start to act like the child with Autism in hopes of getting the same sympathy and attention.
  • Rebellion: common for many children wanting attention, rebellion against their parents is a way of getting attention, even if it’s negative attention.
  • Vocal about Resentment: often, particularly the younger children, will declare their “hatred” of the other child. The younger they are, the more truthful they will be in the moment. It doesn’t mean they really hate their brother/sister, but they may hate the situation for the moment.

So what can we as parents do to help our children deal with their feelings?

  • Acknowledge their feelings: let them know they are important by letting them vent. Sit down and talk with them about their feelings, and let them be heard. It may not be immediate, but it needs to happen without any judgement. Your children need to feel comfortable coming to you with these feelings, even when they know it’s wrong (and especially when they know it’s wrong!).
  • Don’t use Autism as the Reason: Never tell your child “We can’t do because your brother/sister has Autism”. That immediately breeds resentment. Instead, talk to them about limitations, and ask them what they think would happen if their brother/sister were put in that situation. How would they feel? How would their brother/sister feel? How would others react? How would the family feel?
  • Keep it in Perspective: make sure your children understand the impact that special needs place on everyone’s life, including your own. They need to know what you are experiencing as well, to put their feelings in perspective.
  • Not Equal, but Fair: Often children feel they are not getting equal treatment, and think it’s not fair. The story that the director from Utah Family Voices shared was a child who felt they were being neglected because their parents were always having to take care of her brother with Autism. Her parents turned to her and, after acknowledging her feelings, pointed out that she was more than welcome to take care of her own brother. At that point, she realized all that her parents managed for her, and she didn’t want it. She realized that it may not be equal, but it was fair to her.

We as parents worry a lot about our children, whether they have special needs or not. And the good news is that most siblings of a child on the Spectrum tend to be more compassionate people, and go into the compassionate fields like teaching and medicine. And as such, they look for those who are like-minded, regardless of with home they think they are in love at the moment.

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