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In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.

*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Emotions and Autism

October 12, 2011 6 comments

This week on NBC‘s Parenthood, Max learns to apologize following the lunchtime situation he had with his cousin Jabbar. Max is upset to hear that not only does Jabbar not have detention, he doesn’t have to write a letter. Max is angry and doesn’t understand, which results in a meltdown.

Amber joins Max during his lunch detention to help work on emotional recognition. You can view the clip here.

How do you work on emotional recognition? In what ways do you teach feelings; happy, sad, angry, etc.? We’d love to hear your strategies and techniques.

Parenthoods’s The Experts Speak says, “An individuals with ASD do not glean information from facial expressions of others as typical individuals do. They do not always look people in the eye, do not understand a lifted eyebrow, smirk, sad face, disappointed face and all the other messages sent by someone else’s facial expression. In addition, when you combine all of these expressions with the thousands of possible gestures and vocal inflections – which add their own meanings into the mix – you can understand why this is an incredibly difficult skill to master when one does not have the neurological basis for doing so.”

For Further Reference:

Stephen Shore: Strengths and Challenges

WrongPlanet: Using Facial Expressions

Squidalicious: Autism and Facial Expressions 

A Diary of a Mom: Emotional Identification

In Their Own Words – 10 Ways to Help Your Child with Autism

August 16, 2010 31 comments

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum. Lydia previously submitted a fabulous post called “Ten Things That I Wish You Would Accept, No Questions Asked.”

Between my blog and the parents’ message board I enjoy visiting, I get a fair amount of questions from parents. Should I let her line up her toys? Would going to his dad’s on weekends be too upsetting to his routines? What can I do to help her get through an EEG?

I always do my best to answer them based on what I would have needed or wished my mom would have done for me, keeping in mind how it will affect the child as he grows up. As I get more questions, and they start to repeat themselves, I’m seeing patterns. I thought I would write something for parents to answer some of those repeated questions, and if they still had more, they can always contact me.

These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun “he” for the sake of simplicity and statistics.

10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, sibling, pastor, friend; if you’re still stuck, heck, I’ll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you’re upset with us.

9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it’s overshadowed by the nagging thought that Leigh or mom or sister doesn’t really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you’re hearing is the most fascinating thing you’ve heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.

8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First things first; I picked up my kitty. Then I said, “Mom. I’m upset.” No response. “Mom, did you hear me? I’m upset.” The words felt unsettling. “Mom, I’m telling you something. I’M UPSET!” It struck both my mother and I that this was the first time in … ever, maybe? … that I’d come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don’t let this be the case for your child. Ask your child frequently, “How do you feel?” You may need to offer suggestions or options at first, but never stop asking.

7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Over-exaggerate and explain, step-by-step, what you’re doing and why you’re doing. “Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I’m angry.” “Hey, let’s get your new school shoes when we go to the mall to get so-and-so’s birthday present. People say that we’ll ‘kill two birds with one stone.’ That’s a silly way of saying we’ll get two things done with one action.” “Oops; I expected the ice cream shop to be open. It’s probably closed early because it’s a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?”

6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say “You can wear jeans or sweatpants today. Which would you like?” Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, “Would you like a game or some Legos? It’s your choice.” Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.

5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he’s 18 years old, who’s he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16 year old, follow stories like a six year old, read like a 10 year old, and express emotions like a pre-schooler. Don’t look at your child as the age he is, but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.

4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers … all of the above.

3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I’ve grown older, I’ve learned to take fragments of things I’ve either said in the past or have heard others say and piece them together so that it sounds like intelligible speech. It’s really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I’ve just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.

2. Don’t be scared of different. If I want to use a TTS in public and I’m not afraid of “what people will think,” you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you’ve explained that “people typically do not wear clothing like that. They may look at you and think you are strange” and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it’s the only way he can possibly stand to be in that crowded room right then, and you’re afraid people will think he’s rude, then I question why you’re trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it’s Spider Solitaire on the computer), but it looks like he isn’t listening, I ask you: Would you rather have him hear you, or look like he hears you?

1. Be consistent. If you’re upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It’s okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but “forward thinking” isn’t usually one of them… we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can’t see beyond the right now to the what will be. We like routine because it’s consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something different is going to happen, please let us know what to expect and remind us several times. Check for understanding.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – I Am Michael

April 28, 2010 67 comments

This weekend, we received the following e-mail (and accompanying poem) from Gary Herrmann, a member of our community who is the father of a nine-year-old named Michael, who has Asperger Syndrome.

Like a lot of kids with Asperger Syndrome, my son has difficulty in social settings. He has one good friend. At the time he wrote this poem, both families had been very busy for a couple months, and he hadn’t been able to see his friend Billy very often. That, combined with some of the difficulties he had been experiencing in school lately, probably contributed to the feelings he expresses in the poem below.

The assignment was to type the poem. He was given some direction as to how each line should begin and word to use in each. 

I was overwhelmed by the poignancy expressed in his poem. As you will see, my son’s name is Michael, and he has a heart the size of our planet … Maybe my son’s poem will strike a chord with parents and families and remind them that even if they have difficulty expressing them, our children experience all of the same emotions we do.

I        am    Michael.
I     wonder    if    I   am   human?
I   hear  ringing    all  the    time.
I   see    molecules ……I   think.
I    want    more   friends .
I   am    lonely.
I   pretend      I   have    more       friends  .
I feel       left  out.
I  have   the   record   of        the             least     friends    in    the     school .
I     worry    if  I   have   no   purpose.
I say  jokes  to   be   funny.
I  hope   people   now   understand.
I   am  Michael.                      

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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