Monthly Archives: September 2013

She Is Me. I Am Her. (The Female With Aspergers)

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I have gone back and forth over how to write this blog. I’ve actually never given a piece as much thought as I’ve given this one. My typical writing style involves relaying information based on life experiences, feelings, and perceptions. This one HAS to be a little different, while still putting all of those things into it. You see, writing about women and girls with Aspergers is no simple task….and yet, I know the information more than any other I tackle. I know because I have Aspergers. I am Aspergers. My daughter is Aspergers.

I am forever reading the words, “My child is more than autism.” I absolutely understand that thinking. I won’t argue that belief. We are just people, like everyone else. I will, however, simply state that until one has this condition, they can’t quite understand why that statement isn’t exactly factual…or how much comfort knowing about one’s Aspergers brings to them. Aspergers is why I am who I am. It is why my daughter is who she is. I can no more separate myself from it and the way it causes me to be, than I can change having green eyes, big bones or brown hair. I can camouflage all of those things, but they are still there. They are still 100% me all of the time.

Most parents of Aspies have a goal to show their child their worth and how to feel good about themselves in spite of Aspergers. I choose to feel worth and show my daughter hers because of it. I like me. I like her….with good reason. In this piece, I’ll share this condition as it affects females, in the best way I know how….from my heart…and my life experiences. I’ll also share the factual, scientific details. Understanding women with Aspergers is unlike anything you will ever attempt. We are complex and ever changing. We are bold, yet timid. We are honest to a fault, yet hide ourselves in the “acting” we display for the world. We are deep thinkers, while completely simple things escape us.

When I was a child, I remember feeling like I was in a bubble. I was right there with everyone, but also in my own, very private, world. I listened to people converse, and I would have most of my part of the conversation in my head. I didn’t share a great deal of what I thought, because my thoughts weren’t like the words I was hearing others say. I didn’t know why. In my very young years, I didn’t question it, but I did notice it as early as five….particularly when I went to school. I liked people, but I really enjoyed playing alone. I was an only child, so that was fairly easy for me to do. I could be myself, when I was alone. I could talk how I wanted…to my imaginary friends, to my animals, to God. I was deep. Always. I pondered life’s complexities and questioned everything. I was timid and quiet, in my young years…and yet when I became comfortable with people, I was a performer, always sure to bring a chuckle and a smile. My moods were ever shifting. I craved solitude, and then felt lonely in the privacy I sought out. I did a lot of playing outside alone….where no one could hear me talk to myself. I sang, talked to God, imagined I was in a foreign land, and typically pretended to be someone other than myself. I would swim in my pool and become a mermaid, discovering the beauty of the sea. When I went to bed at night, I was like Shirley Temple in The Little Princess, waiting for a mysterious man to come tell me I was in the wrong place and carry me off to my destiny.

I escaped into other worlds regularly. When I discovered The Chronicles of Narnia, I went with Peter, Lucy, Susan and Edmund. I lived that life. I was there. It felt like home to me. When I wasn’t reading those stories, I felt homesick and disappointed with reality. I drew, painted, made cut paper artwork and any other kind of art I could imagine. I liked the quietness of it. It made sense, when so much didn’t. When I played with other children, I tended to control the play. I needed a script to follow, and I needed them to cooperate. To my knowledge , they never felt controlled. For me it wasn’t even about being in charge, but about inviting people to be a part of my world, as I was a part of theirs. I enjoyed playing a mother. I wanted to take care of everyone. Looking back, I realize there was a desire to make everyone feel loved and special. My dolls, stuffed animals, my possessions were real to me. They felt emotions. They needed me. I was justice. I was love. I was a protector.

My favorite friends weren’t even kind of close to my age. They were the elderly. They were my next door neighbors, Mrs. McGee and her husband, “the man Mrs. McGee”, as I called him. They were my grandmas, my grandma’s next door neighbor, my grandma’s best friend, who would write me fascinating letters and send them to me in the mail. Those people were my dearest friends. I loved their stories about a time that was different from the world I knew. I loved to walk through their homes and see the old things that had history. I wanted to go to that place in time. I wanted to escape.

I remember having so much frustration that I was afraid to show. I would pull my hair and cry uncontrollably in private. When I was eight years old, my parents owned a pizza place. I made a “house” in the back of our station wagon, where I could be alone while they worked. One evening, I was sitting in that quiet car, looking into the restaurant. I watched as people talked and laughed with my parents. I started to cry….just a little at first….and then I gave way to most intense cry I ever remember having. I felt alone. I felt like everyone was enjoying me not being there. I felt more than just a window between us. I was different, and I didn’t know how to tell anyone.

As the years went by, I became more outgoing. I accomplished this by pretending to be other people. Whoever I was with, I would mimic. I was never true to me. I was always working to blend and fit in. Soon, I didn’t even really know who I was. It definitely wasn’t any of the roles I played. I was one person as a daughter. Another as a granddaughter. Another as a friend. Another when I got my first job. Another on the volleyball court. Another as a girlfriend. I was a million different people, but none of them were the real me. They were either fragments of me or lies. I mimicked actresses that left an impression on me in films. I became characters in books. I was intelligent. I knew how to hide myself…how to behave in certain companies as to not bring attention to who I was on the inside. There was, however, an underlying fear that all of these people would one day get together and discuss the me that they knew. I was petrified that my false identities would be shared and that I would no longer have anyone at all. I felt like a liar….and I never wanted the truth known. Deep down, I wanted to just be me, but I didn’t really know who that was….and I wouldn’t for a long time….thirty plus years, to be exact.

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As I watched my daughter grow, there were no red flags…not for a long time. She was happy, vibrant, the center of attention most everywhere she went. She was/is magnetic. People love her immediately. There is a depth, an intelligence to her, that cannot be matched. She’s artistic, contemplative, wise beyond her years, funny…..an actress. When she turned seven, some things started to catch my attention. She didn’t like to be touched in certain ways. She enjoyed being alone. She controlled play when she played with others. She began escaping into books. Her mood and characteristics changed, as she would read. She would watch movies and become so a part of them that she couldn’t separate reality from fantasy. She would mimic actresses. She would speak to me in movie lines. She would become angry, violently angry, when she didn’t understand things. She would become so caught up in her closest friends that she couldn’t stand life without them. She didn’t know who to be, when they were gone. She lined up her ponies from one end of her room to the other. She would design (still does) elaborate homes for her Littlest Pet Shops, yet would rarely play with her creations. She would stare at her miniature animals, love them deeply, carry almost 150 of them with her everywhere she went, but wouldn’t actually play with them like other little girls did. She was, and still is, obsessed with them. She breaks down when she forgets them at home. She speaks in accents some days….pretends she is in a foreign land. She will sit with the elderly and listen to their stories, just like I did. She’s enamored by a world she’s never been to. She likes her privacy, and yet it makes her lonely. She cries easily and can’t explain her feelings without becoming angry and screaming.

She is me. I am her.

There is so much to our identities, that I could never write it all in one simple blog. By now, if you have Aspergers, or your daughter does, you have said, “That’s me. That’s her.”, while reading our minor descriptions. I have searched for the best ways to describe Aspergers in females. While the details are so very vast, I feel I have extracted the best ones for you here….

-Emotionally exhausted and distraught due to constantly trying to process personalities and the “right way to be”

-Overly apologetic when making mistakes or lashing out

-Low self esteem and trouble with her own identity

-Can be overly well mannered and behaved, deterring anyone from seeing there are problems

-May enjoy escaping into nature or “other worlds”

-May be very in tune with animals and love them more than people

-May be very nervous or standoffish at the beginning of a social function then completely comfortable, not wanting to leave, near the middle and end

-Vulnerable to peer pressure and bullies. Can easily be taken advantage of. More prone to be used in sexual ways than those with better understanding of the dynamics

-May have one best friend that she relies on to help navigate social situations, whether said friend is even aware of the role they are playing

-Feels defective and like she must hide her true identity

-May collect certain toys or objects and has a strong desire to keep them organized and close to her

-May have an intense connections to one or several fictional characters. Has a feeling that she is a part of them and they are a part of her. May feel like they would return the feelings, if ever they met

-May have in depth knowledge of certain topics and very little knowledge of the “simple” things

-May have an intense interest in reading and art

-May not play with toys like other children play

-Can be fascinated with other worlds and eras

-Feels like she is from a different time and is out of place

-May be a tomboy

-In adolescence, she may become obsessed with her appearance. Having to have it “just right”

-May not be into the latest things that every else is into

-May care very little about fashion, to the extreme that it angers her

-Enjoys male friends more than female friends. Finds males easier to understand

-May prefer to be alone

-May be very outgoing at home and extremely quiet and scared in public

-May have imaginary friends

-May enjoy writing her feelings or works of fantasy fiction

-May have more adult friends in childhood

-Notices little things that others don’t….sights, sounds, smells, textures

-Aversions to some foods

-Prone to eating disorders

-Can be overly motherly from an early age and is fascinated with having children

-Can be too blunt and speak her mind, offending others and losing friends

I hope that this has helped you understand yourself or your daughter just a little more. More than anything, I want you to understand that Asperger women CAN live a happy, full life, when given the support, love, respect and guidance they need. Education and acceptance can carry your family through any of the storms.

This truly is a wonderful life.

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We Aren’t After Your Pity

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I’ve been mulling over some things, since I wrote my last blog “https://muthalovinautism.wordpress.com/2013/09/05/desperate-to-be-heard/” . The first thing was my reaction. Was it the right one? The second was readers’ reactions. Did they go too far with their replies or did they just take me wrong? I still hold to every thought I wrote that night. In hindsight, I might would’ve tried to not make it sound so accusatory. I don’t “blame” anyone for the life I live as a woman with Aspergers and a mother to children with autism. I LIKE my life. I LOVE who we are. I was, however, very upset….not just for a particular family, but for my family and every family that is not getting the help we are told would be there. The week before I wrote that post, I got the rejection letter in the mail from the government. The one that gave me a list of guidelines that my children met to receive services, and they still denied us. Months and months of jumping through hoops…only to have to appeal and do it all over again….to have invaluable services delayed even longer. I know the despair I felt. I can only imagine the despair of others who have been living this life longer than I have, with children who’s “symptoms” are more severe than my own.

 

There was a comment made to me. One I can’t shake. “Your life as a parent to autistic children isn’t as hard as you assert it is. Stop having a pity party and have a “change it” party.” What an easy thing for someone not living our life to say. I know TONS of autism families from online and several in person. I’ve never heard one throw a pity party. Never. I’ve heard them cry and fall apart, when it was justified. I’ve seen them bring their problem to the table we all sit at and ask for help. I’ve seen strangers hold each other up and offer the words and love that was needed when family and friends turned a blind eye. But I’ve never seen them throw an honest-to-God pity party. I am honored to know some of the strongest people on the face of this earth. People that don’t just tackle their own challenges, but care enough to help others tackle theirs. I’ve seen threads 250 comments long of strangers helping one another find solutions to eating disorders, mood disorders, meltdowns, hygiene problems, learning issues, self mutilation…the list is endless. It is one great big CHANGE IT PARTY all day long.  

While I might, occasionally, witness someone in our community stating “I’ve got it so much worse than you.”, that’s the exception…NOT the rule. In the blog I last wrote, I wasn’t trying to tell the world how much worse off than them we are. YOU, dear reader, turned it into that. You chose to see whining, instead of a need. We live a life in which many of our children don’t EVER speak to us….to anyone. We watch them bang their heads against walls. We watch them stay awake for days, sometimes weeks, at a time. We watch them stare into space and not hear us when we try everything to bring them out of the autism induced trance they are in. We see them step off the bus with hand prints on their faces and shoe prints on their chests, because some kid thinks they are weird and not worth knowing. We beg them to eat just one bite of food, because it’s been days without them getting nutrition. We tell sixteen year olds how to wash themselves for the 9,000th time, because we know if we don’t tell them, they’ll stand in the shower and never bathe. We see them do amazing and intelligent things at home, yet get looked over at school by SOME educators because they aren’t “worth the time”. 

If you, most offended reader, deal with those things and so much more, forgive me. I didn’t know it was so common. I was under the impression that we need to educate about what’s really happening in our homes, because people look at us like we’re crazy in public. My bad. I thought that as parents of special needs kids, we were supposed to help the world understand our kids, because someday, we won’t be around to help them anymore. I didn’t know that you worried about whether your child would ever be able to leave home or not. I didn’t know you were scared that they would never be able to work, have a spouse, drive a car, or simply graduate. I just had no idea those fears were what kept you awake too. 

You think we want your PITY? If that’s how you see us, then you’re CHOOSING to see it like that. We want your understanding. We just want you to listen. There are 1 in 50 children and adults living this life. We don’t have the luxury of just being around people like us. WE have to live with YOU…and your children. All we want is for you to see us for what we really are and have compassion when things are hard.

Pity? Hardly. 

Desperate To Be Heard

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My heart breaks tonight. One of our own, a blogger, a warrior autism advocate, a GOOD mother, attempted to take the life of her child with autism and her own. You’ll hear the details. They’ll be out there for the reading. You won’t have to hunt for long. Whenever something like this happens, you hear about it for days, weeks, months. You know what you don’t hear, unless you’re listening for it? The cries for help that were screamed BEFORE this happened.

I see it everyday, all day on my community Facebook page. I see it in my fellow bloggers. I see it in the other autism mother as we lock eyes in the grocery store. We are DYING for you to hear our story. We are begging you to care. We don’t want to burden you….but we are DESPERATE for love and a shoulder to cry on. We don’t care if you’re living our life or not. We need to not feel so alone. We need for people who still HAVE strength left to carry the torch for us, while we regroup and decompress from the battlefield that is our life.

Our lives, our children’s lives, depend on somebody willing to step out of their world for a while and be a friend. A REAL friend. We need for people to really get how hard it is to FIGHT for our children to be properly educated, medicated, and cared for. WE need for people to understand what it’s like to swallow our pride and turn for assistance from the almighty powers in charge who SAID they would be there just for “people like us”, only to have to jump through months and months of hoops to be turned down.

We need you to get it, because there are days when we can’t fight for ourselves anymore, but we still have these children that depend on us. We STILL want what is best for them, even if we are too weak to seek it out. We need someone to feed us when we just need rest. We need someone to take our kids for an hour or two, so that we CAN get on the phone and discuss why our kids actually need those services…because, apparently, a melting down, non verbal child in their office just doesn’t prove enough. We need teachers that will stop getting their feelings hurt, if we have a little bit of a chip on our shoulder and understand that it’s come from years of being pushed aside.

A daughter and mother…lie in their hospitals beds tonight after being told, “We can’t help you.” by a teacher that got her tail feathers ruffled over a mother doing what she’s always had to do….FIGHT for her child to be taken care of.

We aren’t asking you to lay down the red carpet and treat us like royalty because we were born into a club of people who deserve to be treated better. We’re asking you to hear that we are FALLING APART some days and we NEED you. We just….need you.

Our lives are made up of our children screaming at us and throwing punches at us one moment to wiping our tear stained cheeks the next. There is never the same day twice. There is never any predicting. There is only preparing for anything and everything and battling the world, while we’re at it.

How hard is it REALLY to listen? To care? When will OUR cause be worthy enough of a Tshirt on your back or special speaker at your church? When will some of that research money to figure out why we are the way we are go to helping the children and families that are living with it RIGHT NOW?

How many more mothers have to feel a mercy killing is their only option for peace for themselves and their children before somebody says, “I’ll listen. I’ll be there. I’ll help.”?

My heart and love go out to Issy and Kelli. We are so sorry we let you down. We are so sorry you felt that alone. So very, very sorry.