Friday, April 1, 2016

Autism Is Like A Snowflake, There Are No Two That Are Alike

We have three children.  One is a "typical" eight year old girl, who is delightfully funny, is quite sharp and loves to dance and sing.  Two of our children are on the autism spectrum.  Autism is NOT a mental disorder, it is a neurological disorder.  Only one of our two children is diagnosed as having autism.  One is a 13 year old boy, who is quite intelligent, is very loving, he loves Legos, video games and Star Wars (He can tell you tons of facts about Star Wars.). The other is a 10 year old girl who is kind and creative, loves to draw, paint or do any sort of craft and absolutely LOVES animals (She will tell you all sorts of facts about them.). Do you know which one is diagnosed?  Females on the spectrum often go undiagnosed until later in life because they are like chameleons.  Our daughter has continually asked and wondered out loud, since she was 7 years old, if she had autism like her brother.  She was not the only one wondering, but because she was not diagnosed, I did not indulge and let her think I was wondering the same thing.  There were many similarities, like food aversions, sound sensitivities, high anxiety, odor sensitivities, extremely textile, clothes can only be loose fitting and very soft, sleep issues, digestive disorder, extremely sensitive, easily frustrated or angered, hyper awareness of those around her, not able to maintain eye contact, not understanding idioms and sarcasm, etc.  Some have told me that she's just imitating her brother.  However, he doesn't struggle with the same exact issues.  They are different as each person is different.  One of the main differences were that our daughter struggles academically with Math and some with reading, while our son is academically gifted.  She also seems to "fit in", but comes across as a shy tomboy, whereas our son comes across as quirky and socially awkward.  Our son also does not struggle with sleep disorders or digestive issues.  There are others that are similar, like food sensitivities, but they are different.  Our son has texture issues and gags easily on certain foods, whereas our daughter struggles with texture and smells of foods, but does not gag, so their aversions are quite different.  One loves tomatoes and the other doesn't.  If the food aversion was a learned trait, then they both wouldn't like them.  Our son has little to no clothing issues, whereas our daughter is extremely picky on what clothes she will or will not wear.  The list goes on.  They are quite different, but yet have similarities in most areas.  They just look different. Autism is like a snowflake, there are no two alike.  Some are very different and some look very similar upon first glance, but look closer and you'll start to see the differences.

Just recently our daughter came to me and told me that she feels like she lives her life trying to hide her real self at school or church because she's afraid of what people might think of her if she is her real self.  Past experiences of strange, bewildering looks or comments by other children have taught her to not repeat certain actions.  She told me she wishes that sometimes she could rewind days to undo something she said or did because she notices the strange looks or remarks she gets from other kids.  In fact, she even asked if she could go to a new school district next year so she could just start over.  "What about your friends?", I'd asked.  She replied, "I'll make new ones.".  This is not a typical 10 year old girl response!  Leave her friends behind?  Apparently, she's not connected enough to really be bothered by that.  Because our daughter never has meltdowns in the classroom, she has a friend at school that is "super crazy and fun" and boys like to play with them, the school does not believe she is on the spectrum, after all, autism does affect their social abilities.  The problem is that it does affect her, she's just really good at hiding it, hence the chameleon.  She is so hyper aware of people around her that she has learned how to act like them to "fit in".  She tells us all the time that she feels as though people are always looking at her strangely, like she's weird or something.  Well, she can't tell why they are looking at her.  Is it because they just happened to look her direction?  Is that person looking past her at something on the wall?  Did they look at her because she happened to look at her?  Did she do something strange that elicited the look?  Are they smiling at her because she said something that made them feel good about themselves or are they laughing at her?  It's quite obvious to me that she cannot read social cues.  There are many times she will tell her sibling or even us to stop looking at her.  I now realize it's because it's overwhelming to her.  Especially when she is frustrated because not only is she not able to figure out her own emotions, but she can't tell what ours is either and to her it is sensory overload.  It's been there all along!  She does struggle with social cues!  She does not understand idioms and sarcasm.  Even such language as, "It is ten until five." rather than "It is four fifty.".  She asks, "What does that mean?  It makes no sense!".  When I look at it from her perspective, it doesn't make sense.  Ten what until five what?  No one has ever explained to her that it is short for, "There is ten minutes before the clock will show that it is five o'clock." And it still does not give her the exact time and since she struggles with math, subtracting ten minutes from five o'clock is difficult for her.

So, after we talked extensively a couple of weeks ago, about how she still feels like everyone looks at her strangely and that she can't tell if her teacher is mad at her or just talking loudly, or that she just feels like she's no where, that she doesn't fit in, I finally told her that I believed she may be on the spectrum like her brother.  The response I got was completely unexpected!  A look of relief and understanding passed over her and she joyfully replied, "I'm like my brother.  I'm not weird, I'm just a girl who has autism.  I'm so thankful I have a brother who has autism!  Now he's not alone and neither am I."  She feels understood now.  She now understands why she gets so upset over things that don't make sense to us.  It's because she perceives things differently than we do, she knows this because we've talked to all three of our children about autism and what it is and how it can affect people.  It also helps me to remember to go deeper or think outside of the box to see what she is thinking or why she may be reacting negatively.  Also, it helps our youngest to understand BOTH of her siblings.

So, how do we get her help?  Because she is so good at disguising her inability to read social cues, by imitating others around her or just step back from the situation in confusion, which appears as if she is just being shy, she is not being recognized as being on the spectrum.  We've basically been left to work with her on our own.  It's very difficult at times because we do not always know how to help her and others don't see what we see.  People didn't see it with our son either.  Since he soared academically, he was just labeled as immature until he hit the third grade.  I've learned a lot by reading, researching, listening to adults on the spectrum and watching how our son has learned things.  The only thing I know to do, is to keep communicating with her teachers, pray for lots of wisdom and understanding and keep on going.  Even with awareness, there is still a lot of unawareness.  Teachers know little about autism and most only know the stereotypes. One thing I've learned, if you've met one person with autism, you've met only one person with autism!  If you are a teacher, friend or a family member of a person with autism, please, please, please do not judge parents of children with autism or adults with autism.  Do your research, ask them questions, keep an open mind and know that the parents know their own children better than you and those adults obviously know themselves and all they want, more than just a "label", is help so that they can cope with a world that does not meet their needs or understand how they think. If they cannot learn to cope in this world, they will never come to have an understanding of it or know how to live in it. So, when you see that six year old screaming in a grocery store because they are overwhelmed by sights, smells, noises, crowds, etc, or the child who keeps getting up out of his chair at a restaurant or being loud, don't judge. Your judgement only adds to the weight that is already being carried.  Please be supportive in every way you can.  A kind word or gesture goes a long way and can make a huge difference.

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