Sincerely Seeking Autism Answers

I just got a very good question from a friend.  She was hoping I wouldn’t get upset by her asking.  I told her that HONEST and SINCERE questions are always welcomed!  I’m still searching for answers too – and I live with people on the spectrum!

How do we really KNOW that all of these characteristics are a true disability? Is it possible that some of this is just an extreme focus on self, for example — focusing too much on what I want, what I like, what annoys me, etc.? For example, can someone on the spectrum be taught that they SHOULD make eye contact no matter how it makes them feel, just because it is the polite thing to do? I guess what I’m asking is — are people on the spectrum CAPABLE of learning to overcome these socially “different” behaviors? Can they be taught to focus on other people and learn to understand someone else’s perspective, etc?

Now, if you are a momma with a sensitive spirit, please try not to be offended by the question or my response to it!  We all have the right to question and to respond as we feel we know how.

JuneBug wearing her very first pair of jeans EVER. She wore these jeans twice. She hates the feel of jeans and buttons are her nemesis!

As for that question, my answer would be that I think they can change. To a degree. I think it just takes a loooooonnnnngg time, and lots of practice. And the change has to be initiated from someone outside – not themselves. One of my children, for instance, can handle being in a swimming pool and occasionally getting splashed if she is really really working on it.  She’s given herself pep talks and gotten her mind in a state of happiness (I get to enjoy the pool if I can tolerate the splashing). A lot of it is selfish motivation still.

This is a HUGE change from when she was 3 and got splashed in the face and totally freaked – screaming as if someone cut off her hand, totally unresponsive to the outside world – it was almost like she was having a massive panic attack, with all the physical symptoms. It was really, really, really scary because her entire being was focused on that water and she couldn’t snap herself outside of her own brain to even hear or see anything else, even when I was right in her face, hugging her, talking to her. She was rigid and hysterical, almost catatonic. I find that her mood has a great deal to do with her tolerance levels. When she is in a really, really good mood, she can load the dishwasher while saying to herself “it’s ok if my hands get sticky, because I’ll wash them when I’m done” so that feeling like she is going to explode or throw up is kept at bay. But if she doesn’t have that adrenilin going beforehand, she gets so panicky that it almost makes her sick. I think that is why her medication works so well to combat the melt-downs.

I think that these kids really can not figure out what other people’s perspectives are. They have to be taught that other people even HAVE a different perspective!  That can be taught, but their perceptions are very different than ours. So even if they try, they don’t get it right about 80% of the time. I don’t know if they will ever think about other people the way we do. Or consider someone else’s perspective.

Rosalie doesn't understand or care about personal space. Daniel doesn't seem to mind after all these years!

I know in one of my girl’s case, when I ask her if she thinks it is fun to get hit with a toy she will say no. Then I ask her if NinjaBoy thinks it is fun to get hit with a toy she will say no. But IF SHE JUST HIT NinjaBoy with a toy and I say “did he like it when you hit him with that toy” she will say YES – because she can’t see his perspective in that moment – she see’s that SHE was having fun, so he must have been having fun too. There is a serious dis-connect there. But I think talking them through situations like these day after day after day x365 days a year over 20 years or so, they will eventually start to see other people’s perspectives. I don’t think they will ever ‘focus on other people’s perspectives’. They just don’t think that way.

Looking people in the eye is easy for one of my children if she is in a good mood. It is torture if she isn’t. We used to force her to make eye contact over and over and over, day after day after day. She hated it, but got over her insecurities. That is what it is – when some people on the spectrum look into your eyes, they feel like you are looking into their souls – into those inner places that they want to keep hidden. That makes them extremely uncomfortable, and the flight or fight sensations take over. I don’t know why they don’t mind it when they are in a good mood.  But if you see this child in a bad mood or unhappy you will see that she rarely gives you eye contact.  The other child, on the other hand, has to be told to look at your eyes because she is so distractible, and because she just doesn’t ‘get’ those social rules that when you are talking you should look into people’s eyes.

JuneBug helping SweetiePie put a puzzle together on her 4th birthday

People on the spectrum are each so different. Even from one another. Some may have NO sensory issues, some have a few, and some have so many that they can’t function. Some have no clue as to how others feel – even when someone is crying and bleeding. Others can read a few emotions (excited or fuming mad). Still others are really good at reading facial expressions but have no clue why they feel that way – even if they heard the person say “I found a hundred dollars!” and saw them jumping for joy as they were saying it!

I think one of my children is much better at seeing other people’s perspectives than the other. As she gets older, she learns more and more on her own by watching her friends. She still misunderstands many of the social interactions that occur though.  The other is much less aware of other people’s thoughts and feelings and doesn’t learn just by looking at the world – she has to be taught for the most part.

It’s been a long road of questions for me. Some days I just want to give up. I don’t know all the answers. Discipline is a constant struggle – what do you do when one kid is crying from being hit and the other is oblivious and giddy because she’s having so much fun?

I got no end of parenting advice when my children were little – just spank ’em more, don’t let ’em get away with such and such. I can’t even begin to tell you the damage I caused in self esteem and our relationship from ‘don’t let ’em get away with…’ when there were much bigger issues than just being a defiant child.

Koko on her 5th birthday, RoseBud (20 mo's), JuneBug (6.5 yrs)

The Lord has been a huge part in JuneBug’s growth. She is a Christian and she can feel the Spirit leading her sometimes. She has a servant’s heart, and that is something I will always be grateful for.  She used to not care a bit for others but now there will be many times when she recognizes and reaches out to a person in need and tries to help them.  This is in stark contrast to the younger days.  Case in point:  RoseBud, at 2 years old, somehow slid between the mattress and the bunk ladder and got her neck stuck.  She was shrieking and flailing, and there was JuneBug (then 7 years old) sitting right next to the ladder, in her own little world reading a book.  Occasionally RoseBud’s flailing arms would hit her and she would yell at RoseBud “STOP TOUCHING ME!”.  Later when I asked her why she didn’t help her sister she looked at me like she had no clue what I was talking about.  All she knew is that RoseBud was annoying her by screaming and hitting her.

Blog readers, please feel free to leave your comments – and remember this is a family friendly site so no objectionable content please!  I love different opinions.  I live in a world with 2 ASD children who have quirks and 5 NT children with just your typical little kid thoughts and behaviors.  I know those few children well, but there are all sorts of other people out there with different perspectives and experiences.  Feel free to agree or disagree as you feel led.

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