Crying Teenage Girl

My 11-year-old daughter is on the autism spectrum, yet many of the difficulties she faces day-to-day are hidden. You cannot look at my daughter and “see” her autism. She does not stand out. My daughter hides her difficulties so no one else can see. She will power through her day, using strategies that have taken years to adopt. She will look you in the eye and smile and say “everything is OK,” but this doesn’t necessarily reflect her mood. 

She lives by her own rules and plows through her day trying to make sense of the societal constructs placed on her. Sometimes she gets it “wrong” and misjudges. She is not keen on unknown people and places or the unsuspecting reactions of strangers. Every person reacts to the world in a different way, and this does not make sense to her; it is not only confusing but scary. 

My daughter will obsess over every detail so she can prove to you that she can not only do something, but do it well! She loves to achieve, and will work at 200 percent just to show you she can do it. 

But all of this comes with a price. The thinking and plotting, the extreme concentrating and effort. The guessing and double guessing. All of this exhausts her. Her constant pushing to meet expectation takes her to the point where by she cannot give anymore. It can all lead to a meltdown. She doesn’t mean to be rude or aggressive; her nature is loving and considerate. But I understand that place she must go to time to time when she simply has had enough. 

I may not be the best mother all of the time. I find the change in mood and meltdowns distressing at times. But I have learned this is not my struggle. I see her uncontrollably upset, and I remind myself these are her emotions, not mine. We all live somewhere between “I’m fine” and “I’m really not OK,” but we continue to work towards our happy mediums. Every step we take to get there on our journey takes practice and effort, but I know she will find her balance eventually. Until then we plod along, aspiring for balance not perfection.

Image via Thinkstock.

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I’m an adult on the autism spectrum. I drive my own car, and for the most part, I have many self-help skills and I speak just like anyone else. I work as a therapist with young autistic children. Due to the nature of my job, I am required to get a tuberculosis (TB) test every year. The test involves a needle, which is something I’ve had a severe phobia of for as long as I can remember. To be perfectly honest, I’ve always had a general phobia when it comes to medical procedures, even the painless ones. So, when it came time for my yearly test, my supervisor accompanied me to provide extra support. She and I have been close for several years, and she has been there to support me in many other ways, even before my employment. 

In the waiting room for my test, she tried to distract me with pleasant conversation. I was starting to feel scared, so I only gave short answers and never returned any questions. When they called my name, I slowly walked into the room, feeling even more scared than before. I began to sweat and felt tears coming, despite the fact that the needle hadn’t even been presented yet. Eventually, I was instructed to sit in a chair to get the injection. At this point, I realized I wasn’t going to get out of the test, and I actually had to do it. I began hitting myself and yelling to further delay the process. I plopped down into the chair, only to intentionally fall out of it a few seconds later. I landed on my knees and began to cry. I hit my supervisor and then began pulling on her arms. I felt like I couldn’t speak or even breathe, like I was drowning in my own fear. I was a hyperventilating, crying mess on the floor.

My supervisor took my hands, encouraging me to breathe slowly and use words to communicate. I was eventually able to sit back in the chair and was even able to express that I didn’t think I would be able to keep my arms still. I asked the nurse to hold my entire arm while she did the test and my supervisor to hold my other hand. It was over in less than five seconds, and somewhere in my head, I knew that’d be the case. 

If I’m so “high functioning,” why do I still engage in these harmful behaviors?

An individual with autism may have mastered many coping skills and emotion-regulation techniques, however, when highly escalated, these skills can be difficult for him or her to access. 

It’s like being on the 100th floor of a building with only stairs and needing to sign an important document. The problem is, all the pens are on the first floor. You know you need a pen, and you know how to use one, but when you’re up at the top, it’s difficult for you the access the pen and therefore, the skill of using it. 

Sometimes, when an autistic individual becomes highly escalated, he or she may engage in maladaptive behaviors such as self injury, aggression or elopement. Even though the person may have verbal or other communication abilities, he or she may have a hard time accessing them due to being so highly escalated.

Rather than hitting myself or my supervisor, I could’ve asked the nurse to give me a minute so I could take a few deep breaths. Instead of falling on the floor, I could’ve stayed in my chair. However, I was in such an escalated emotional state, I couldn’t access those skills at that moment.

Autism doesn’t go away when a person turns 18. Many autistic individuals will need ongoing support in some way at certain points. “High-functioning” doesn’t mean a person doesn’t need support. Autism affects everyone differently, and it’s OK to need extra help with certain things. 

I’m fortunate to have an understanding employer and a supervisor who cares so much about me. I hope someday autism services comprised of highly trained and understanding individuals are available to all who need them. 

Image via Thinkstock.


To the mom or dad of a child on the autism spectrum,

The road we are traveling can feel tumultuous at times — rocky, unpaved. Honestly though, the rocky path isn’t so bad.

I began this journey more than seven years ago. At first, it resembled the same paved road traveled by other parents. Then, one day, it didn’t. The pavement disappeared, heavy rains turned the dirt muddy, and the fog made it hard to see where I was. I fell down almost every day.

I stumbled to the ground a few times just yesterday. Then, I picked myself up and painted a mud mask on my son, Nicholas. I told him he was a lion in the rainforest. He gave a happy “roar” and marched courageously through the muddy path alongside me. His smile sparked enough strength to keep me going.

I did not choose this path; this path chose me. I am not the same person I was before I traveled this road, and I’m not sorry it happened. That’s right. I said, I’m not sorry.

Imagine that everyone you know is a gold miner. Your family raised you with gold fever. Your friends gloat endlessly about their gold riches. Your entire community thrives on gold treasure. You spend your life learning the tricks of the gold trade. After a lifetime of preparation, you begin your quest for gold.

Months of hard work pay off when you mine something that looks interesting. Barely able to contain your excitement, you rush home to share it with everyone you know. Your family asks, “How heavy is it?” You say, “It’s not very heavy.” Your friends ask, “When you melt the metal, is it enough to make a brick?” You respond, “It doesn’t melt, and it’s not metal.” Your neighbors ask, “Is it white gold or yellow gold?” You answer, “It’s not gold.”

You’ve never seen anything like it. Its sparkle excites you. Its uniqueness is captivating. You know what you’ve found is spectacular, but it doesn’t meet anyone else’s standards. So you cherish it quietly.

One day, something phenomenal happens. A stranger sees the treasure you’ve hidden away. They say, “It’s a diamond, and it’s beautiful.” You had no idea what a diamond was, but you knew it was the most amazing thing you’d ever seen. It was more precious to you than gold, and you knew that from the moment you saw it. You came upon your diamond unexpectedly, and now you never want to let it go.

Your diamond is magnificent. Please don’t ever let anyone convince you otherwise. Your tumultuous journey is not in vain. Its purpose is to prepare you for what lies ahead. And it doesn’t mean you will always be on this path alone. It just means you’ll build your tribe slowly, with time and patience.

I know what you’re wondering. It’s a question I’ve asked at least a hundred times. Does it get easier? It might not. Instead, you get stronger. You learn to recognize greatness where other people miss it. You figure out that most people learn to love in spite of things, but you teach yourself to love in anticipation of things. Usually, unconventional things. Few people are capable of this unless they’ve traveled our path.

If you’re like me, you’ll find that your flame burns hotter than most everyone else. Your mama/papa bear roar creeps out prematurely every now and then. This is because your emotions run unfiltered. You’ve learned to love deeper. You’ve learned to fight harder. You know what matters most. Because of this rocky path, your passion has become instinctive. It’s not a bad thing.

It’s OK to struggle. It’s OK to be afraid. It’s OK to get things wrong. It’s entirely OK to be unsure of what you’re doing most of the time. I remind myself of this every day. It’s also what I tell Nicholas. Although, I’m pretty sure he figured this out long before I did.

This journey is all about learning to master the struggles of life. It’s about teaching ourselves to convert frustrations into passions. It’s about figuring out how to struggle with our dignity in tact, so that we can teach our kids to do the same. On this path, we struggle with purpose. And the best part is that every beautiful diamond we find along the way is ours to treasure.

Follow this journey on Mama Bear Thoughts.


Every year as part of the IEP process, we, as Caroline’s parents, are asked to write a future planning statement. This is just a couple of sentences speaking to our aspirations for Caroline. I look at the future planning statement as an opportunity to tell the IEP committee we, in no uncertain terms, have exceedingly high expectations for Caroline, and thus for the members of her IEP committee.

Caroline puts in the hours. She attends school for 31 hours a week and then receives an additional eight to 12 hours of therapy on top of that — which means most weeks she works more than 40 hours. I can count on one hand the number of times Caroline has not been diligent and engaged during therapy. Given the hours Caroline spends learning whether her voice needs to be on or off for a particular sound, developing a motor plan to put on her shoes and gaining the hand strength necessary for pre-writing skills, I think she deserves my confidence that she will achieve great things in her life. I have high expectations for Caroline.

Anyone who works as hard as she does earns success, and that will not be different for Caroline. I will not let anyone tell her, her hard work should be less valued than that of any of her peers. Thus Caroline’s future planning statement reflects not our hopes and aspirations for Caroline, but our expectations for her. She deserves nothing less than for her parents, family, teachers, therapists and friends to have the highest of expectations of her, because anything less would be devaluing all of her hard work.

Caroline’s future planning statement:

Caroline will ultimately be a well-adjusted, contributing member of her community. To us, this means Caroline will obtain a college education that will allow her to establish herself as a professional. To do this, Caroline must continue to improve her communication skills, gain a greater degree of self-regulation and be able to develop meaningful relationships with peers. In the short term, Caroline must become fully potty-trained, be able to follow routines with minimal assistance, and develop the reading and mathematical skills and knowledge necessary for future academic success.

It might take a little longer to develop some of the foundational skills necessary for success, but with Caroline’s work ethic, her potential will know no limits. In other words, Caroline will one day take over the world, because we as her parents expect nothing less of her.

Follow this journey on Failure to Thrive or Ability to Overcome?


Recent years have seen a vast change in the conversation about the autism spectrum, as it is now being led by a variety of autistic people themselves – the only real way of understanding a condition that has no absolutes.

As someone on the spectrum, it has been enlightening to hear the experiences of people worldwide and see the similarities, however vague, that shed light on a condition I’m still understanding. However, despite all the positivity this has created, there is one common absence from many of these stories.

Characteristically struggling to communicate inner emotion, stories of day-to-day happiness are often a rare find in stories written by autistics. The public press uses autistic savants as a benchmark for “good autism” and too often assumes everyone else has a permanent uphill struggle to deal with, ignoring the fact that so many of us are perfectly happy with the lives we lead, irrespective of what others consider “low-” or “high-functioning.”

While I support the message of hope within the autistic community and compassion from the general public, is this paradigm we are creating of fighting a permanent uphill battle the way to achieve our goal?

That goal, in my view, is to create an autistic community that is not excluded for their differences, but celebrated for the gifts they bring, and whose various difficulties are both understood and accounted for.

It may be an idealistic vision, but it is one worth aiming for. It will, however, require integrating into education schemes the daily, admittedly more “unremarkable” stories. Stories that document the success of everyone on the autism spectrum, including those whose autistic qualities are nearly imperceptible to the neurotypical, but are still unique in a misunderstood way.

That publicly held mental image of autism in itself allows for a fascinating thought. If the happiness of autistics from all across the spectrum in as much variety as it allows can be made publicly associated with the condition, it could end the days of stigma. It’s this stigma surrounding autism that has trapped it into such a detrimental narrative from which it is difficult to escape.

I hope members of the autism community will lead the way globally in this shift in the way we think of the autism spectrum, and one day, perhaps all mental and physical health conditions, too.

The actual answer to what makes autistic people happy is, of course, not a single, standard answer; there are no “standards” to work from or to in autism, nor any way to pin down “this is how to be happy.” Its very existence as a complex spectrum of so many variations leads to an neurological ID as personal as a fingerprint. Think of life as a card game as we all play our best cards at the best times, when the opportunity arises, in order to stay in the continuous stream of cards being laid down. We use good cards to compensate for bad ones that we can’t play.

I think of autism as a wild card in the game; it’s one of only a few characteristics (or in this case, a set) that is and can be whatever we choose to make it. A negative stigma on autism creates negative feelings about it; we act on negative feelings, creating negative actions; negative actions creates negative results.

We must use positivity and hope to create positive feelings, positive actions and positive results. What those results are, I cannot say beyond my own.

But, for anyone who did want to know what positive results, success and happiness look like to an autistic person; in this age of easy labeling, it shouldn’t be too hard to spot us, to find us. Leaving conjecture and assumption behind, as we must all eventually do, what’s the best way to find out someone’s reality? Find them, and ask them yourself, of course.

“Before you judge a man, walk a mile in his shoes. After that, who cares? He’s a mile away and you have his shoes.” — Billy Connolly

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I don’t mind if you say “I’m sorry,” when you find out my 4-year-old daughter is on the autism spectrum. I actually I appreciate it

Many times I have heard and read about how parents of children on the autism spectrum absolutely hate it when someone who has just learned his/her child has autism says. “I’m sorry.” I don’t feel the same way. I’m actually grateful when someone has a polite or empathetic comment to make. Some people don’t know what to say, and instead of being quiet they say things like, “I saw ‘Rain Man,’” “She can talk, she’s not autistic,” “She looks so normal,” and other things I really don’t like to hear, but a sincere “I’m sorry” is not something that bothers me. I do, however, understand that the phrase “I’m sorry” may be viewed as a sign of pity, and our children’s lives are not to be pitied. They’re different, but wonderful lives.

But I don’t mind hearing “I’m sorry,” because I feel the same way… I’m sorry she will have to live in a society that is not prepared to deal with difference. I’m sorry she will have to live in a country where she will be seen as handicapped only because she sees the world in a different way. I’m sorry she has to spend several hours a week going to therapy. I’m sorry she has to miss classes to go to speech therapy twice a week. I’m sorry she can’t enjoy games with her friends because she does’t understand symbolic play the same way other children do. I’m sorry she can’t enjoy playing in the swings because she has proprioceptive issues. I’m sorry she has strong issues with food and textures that don´t allow her to experience the pleasure of eating; she is afraid to try new foods, she hates mushy food and may never experience my joy of eating a warm bowl of freshly mashed potatoes. I’m most sorry about this particular issue because she is not receiving all the nutrients and vitamins she needs from her extremely limited diet, and she has to take vitamin supplements, which she hates.

I’m sorry I had to take her out of her nursery school where she had friends and take her to a new place more suitable for her needs. I’m sorry she will have to go to a different school than the one we wanted her to attend because she needs a more personalized education. I’m sorry she and her sister might not be able to attend the same school just because her sister is neurotypical and she’s not. 

There are so many things in her life I’m sorry about, but there are also so many things I’m not sorry about, things I’ve learned from her that make me happy and proud of who she is and who she’s made me become.

She’s made me realize I have more patience than I new. I learned to cook fruits and vegetables in fun ways she likes and are healthy for her so she doesn’t miss out on the pleasures of eating. I’ve discovered I have very little shame when it comes to making her laugh. I’ve done silly, funny, ridiculous things just to make her smile; before she came along I would’ve never done these things in public. She’s made me find physical strength I never new I had so I can carry her in my arms even when I think I can no longer resist the weight of her 45 pounds, just because she loves it. I’m not sorry for how much she loves birds and how she has made me look past my absolute hatred of them and be able to walk into an aviary and learn names and sounds different birds make.

I’m not sorry how she makes me laugh until I pee in my pants, for how much her sister loves her, for how happy she has made our lives, for how proud she makes us every day when she conquers her fears and tries something new, for how much she adores her father and call him “my prince.”

For this and so much more, I’m not sorry.

Image via Thinkstock.

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