Aspergers- What You Don’t See

Being a mom of a daughter with Asperger’s is hard– really hard. Every day presents new challenges. I discover new speed bumps and potholes in daily living. Sometimes I spend an abundance of time racking my brain to come up with new creative coping skills for my daughter. Sometimes I just want to crumple in defeat. It’s exhausting, for both of us.

My 21-year-old daughter has high functioning Asperger’s, and to most people, she seems “normal.” She’s not. However, the only way you would know that is by living with her. Sometimes I think those with high functioning Asperger’s have it the worst because they are so misunderstood.

At work, my daughter is brilliant, competent, organized, and practical.  She is the “go-to” girl. She has an incredible aptitude for exponentially picking up information, and her attention to detail is remarkable. The staff forgets she has Aspberger’s. She’s just the “quirky” one, and they tease her about having “magical” powers (to their amazement, she has the uncanny ability to appear out of nowhere with just the precise thing they need). But otherwise, to them, she seems “normal”.

image.pngYou don’t see that she can’t read your face. (Are you crying for joy, anger, or sadness?) Facial expressions are a huge cue in communication. “Normal” people can read an arched eyebrow, a smirk or a wince. Facial expressions give us a generous amount of information to interpret a word or conversation. Without them, we can be left floundering. What you don’t see is that being unable to read facial expressions is akin to being blind sometimes.

You don’t see that she can’t read the cues of her beloved dog, Pippin. She brought Pippin home as a comfort companion. While most of us can tell by a dog’s bark, the position of the ears or their chirps what they are trying to communicate to us, she cannot. Every day I have to interpret Pippin’s signals for her. Now Pippin comes to me to communicate what she needs or wants. What you don’t see is how heartbroken she is that Pippin has bonded to me, instead of her because of it.

You don’t see that because she recognizes she is unable to pick up on most non-verbal cues she has decided (at least for now) that having children is probably not in her future. While I understand, what you don’t see is how heartbreaking that is for me.

You don’t see how my daughter struggles with social mores and cues. She finds it almost impossible to connect with her peers. When asked a question she is often paralyzed, trying to suss out the appropriate response. While confident in her response to her clients at work, she is unnerved at the thought of having to respond to her peers. She is so worried about a social misstep, she would rather not respond at all. What you don’t see is her desperately trying to process why Nicki Minaj (or any pop culture reference) is relevant to her peers.

image.pngYou don’t see how she is unable to visualize. When you describe your dream vacation, she can’t see it. When you describe your Halloween costume for the company party, she can’t imagine it. When some well-meaning person asks her where she sees herself in 5 or 10 years, what they don’t see is how impossible that question is for someone who can’t visualize.

You don’t see how choices are paralyzing for her. You can never just ask, “What do you want for dinner?” That open-ended question immediately causes a shutdown. The thought of having to pluck a choice out of thousands is incapacitating. Instead, you have to provide her with two choices, “Do you want tacos or stirfry for dinner?” She can move between choice “A” and choice “B”. Any more than that and she can’t process it. She would rather not eat than have to choose from a list. What you don’t see is how crippling a simple question like, “What would you like to do today?” is for her.

You don’t see how desperately my daughter needs routine. Regular bedtimes and waking up times are a must. Routines provide stability she needs. While she doesn’t show it, work can be extremely difficult for her because there is nothing routine about it. She desperately clings to the protocols because she needs the consistency. When the protocols are abandoned or disregarded, she is like a ship tossed at sea. What you don’t see is the meltdown in the car at lunchtime because she is overwhelmed by the inconsistencies and the demands to seem “normal,” real or imagined.

You don’t see how she struggles to shop for clothes because she is hypersensitive to the texture of her clothing. Brushing up against the various textures of clothing racks crowded together in a store can cause sensory overload and a meltdown. What you don’t see is how the tears of frustration and anxiety well up in her eyes as she abandons the cart and flees for the door.

image.pngYou don’t see how she struggles to go to the grocery store because she is hypersensitive to the lights. The tight aisles with people bumping up against you and the overhead announcements can also contribute to sensory overload and a meltdown. She often wears headphones to block out the sound. What you don’t see is the anxiety she is experiencing as I walk her out of the door when she has forgotten them.

You don’t see how she struggles at every social setting because she is hypersensitive to the sensory assault. Forget going to a family restaurant. Kids are screaming, crying or getting up and down out of their seats. Three different TVs are showing three different games. Wait staff are singing “Happy Birthday” to someone two tables over. A party of 8 is laughing over something particularly funny. As if that isn’t enough the menu has too many choices. When the food arrives, she struggles with misophonia. She fights to focus on the conversation. What you don’t see is the poke at my leg under the table, indicating she needs to leave right now as a panic attack is impending.

You don’t see how the prospect of traveling, housesitting, or visiting friends causes immeasurable angst. The idea of sleeping anywhere besides her own bed is torpefying. What you don’t see is the self-loathing on her face when she knows she will be missing out.

You don’t see how she is taking every word you say… literally. Her world is stark black and white and explaining to her that the world doesn’t operate that way, doesn’t change her perception of it. What you don’t see is her struggle to pick up clues…any clue, as she tries to decipher what you are saying and if you mean it or not.

You don’t see how she melts down every day before work, buried under a mountain of depression and anxiety. As she crawls out bed, she psychs herself up to face another day. She dreads going work. When she gets home, she melts down at the prospect of never getting better, never being understood, never being able to understand others. What you don’t see is the collapse in utter defeat, almost daily. image.png

You don’t see how I wrap myself around her and hold her tight when she is crumbling under the burden of all of it. What you don’t see is that the proprioceptive input from her weighted blanket (15 pounds) and the weight of my body are sometimes just not enough to calm her down.

You don’t see how every day she wants to die. She recognizes that she is a square peg trying to fit into a round hole and what you don’t see is how desperate she is to be “normal”.

“Helpful” friends and family tell me my daughter just needs to pull her self up by her bootstraps and “not take things so personally.” She is just “overly sensitive”, and she needs to “get over it.” They say that she needs to be more independent and that the world is not set up to cater to her. Comments like these are not only hurtful, but as a mom, they make me angry. I wish she had control over her sensitivities and thought processes, then maybe we could actually do something about them. It’s like telling an apple to behave more like an orange.

According to Autism Speaks, there are therapies and services to help our kids cope.

Cognitive behavioral therapy can help address anxiety and other personal challenges.
Social skills training classes can help with conversational skills and understanding social cues.
Psychoactive medicines can help manage associated anxiety, depression and attention deficit and hyperactivity disorder (ADHD).

According to Psychology Today, “Cognitive-behavioral therapy (CBT) is a form of psychotherapy that treats problems and boosts happiness by modifying dysfunctional emotions, behaviors, and thoughts.” It goes on to say, “CBT focuses on solutions, encouraging patients to challenge distorted cognitions and change destructive patterns of behavior.” (Sigh) This is great, except that my kid’s brain is wired completely different, so she processes information differently. She doesn’t recognize that her cognition is distorted.

I have had a lifetime (her lifetime) of teaching her social skills. Yet we live in a world where people don’t say what they mean, mean what they say or do what they say they are going to do. Is the expectation that she should change? She shouldn’t take things so literally? She is wrong to be hurt, disappointed, and confused when she takes people at their word? If you are unable to read faces or pick up on cues how are you suppose to know the nuances between the coy, “no, don’t, stop!” said with a smile and “No. Don’t. Stop!” said with a grimace?

image.pngWhat’s left? Psychoactive medicines to help manage anxiety and depression. One of the things she is most terrified of. For us that has been a crap shoot. We have tried just about everything, including changing her diet. We have gone from medicine to medicine trying to find the right kind and dose. (By the way, going from doctor to doctor has been a completely traumatic experience for her.) My daughter says she often feels like a lab rat. She doesn’t like feeling drugged, out of it, or not herself. If she is drugged enough to dampen her sensitivities, then she is so unmotivated she finds it hard to take an interest in anything. If we lighten the dosage than she inevitably will either be overcome by her sensitivities or the anxiety and depression. It’s pretty much always a lose-lose situation.

As if all of that wasn’t a struggle enough, my daughter is in a full-time job with zero health benefits. I don’t have to explain what that all means. If you make too much money to get free benefits and not enough to actually afford the benefits you know where she is at. The struggle is real.

My daughter is a gift. She’s smart, funny, moral, and full of integrity. She is compassionate and kind. Her character is uncommon, and she is unlike anyone I have ever known. People tell me all the time how special she is. No one knows that more than me. I wouldn’t trade her for anything. But, as her mom, I wish could ease her suffering. I wish I could take away the angst not being “normal” is causing her. I wish could slay the debilitating depression and anxiety that suffocates her daily. I wish I could give those that think, “well, she looks normal” a glimpse “behind the scenes” to educate and enlighten– because what they don’t see, is how daunting and exhausting researching, experimenting, explaining, and picking up wreckage is… for both of us.

If you have Asperger’s or are the parent of a child of Asperger’s, I would love to hear your story in the comments below. Believe me, you are not alone. Please like and share this post.

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