Thursday, April 25, 2013

Familiar Stranger

Artwork by K. Turner
My daughter has autism.

I wish I could tell you she’s a savant, like in Rain Man. I wish I could tell you that you could tell she’s autistic by looking at her. I wish I could tell you she can be cured.

But I can’t.

I can’t tell you why she screams, outraged over some slight I can’t perceive. But it hurts when you look at me, and the expression on your face is clear. You’re disgusted. You think I’m a bad parent, and my child is merely being a brat. Because you don’t know. You don’t know the turmoil my daughter is in, how she may want to stop her rages, but can’t because the wires in her brain have crossed. You can’t tell by looking at her my daughter has autism.

I have a scar on my face from when she attacked me years ago. She’s bigger than me, and when she’s come after me, it’s my husband who’s had to intervene, holding her down until her fury eases. Not once have we punished her for these outbursts. They are a part of autism. We know they will pass. But it’s no fun to have the police come to our house at 2 AM because our daughter’s screams have woken the neighbors. Luckily, the officers were understanding when we explained the situation.

Luckily, her outbursts have lessened considerably, and she’s better able to calm herself down. Because she’s nonverbal, it’s difficult to discern what upsets her. At school, she uses an app called Proloquo2Go, a communications device, and we are hoping to get one for home use.   

Because her autism is severe, my daughter will always need supervision.    

Despite this, she’s also active in school, playing on the united basketball team (similar to Special Olympics). She usually scores two or four points a game. (I heard that she made 35 baskets in a row in gym class.) She volunteers at a local animal shelter. At home, she likes to exercise, draw, and watch YouTube videos, including old Walter Conkrite news reels. She’s better at math than I am, although I suspect she gets that from her father.

If there’s one thing I want you to take away from this is autism is not a “one size fits all” disorder. While one child may be severely autistic and non-verbal, another may be verbal and higher functioning, able to communicate. Autism and Autism Spectrum Disorders share symptoms, but the severity of these vary with the individual. They include but are not limited to:

Difficulty communicating with others
Sensory sensitivity
Repetitive behavior (e.g. hand flapping, rocking, jumping)
Inability to establish relationships

For more information about autism:
Autism Speaks/Cure Autism Now

Pamela Turner drinks too much coffee and wishes she could write perfect first drafts. Writings include reviews, articles, poetry, screenplays, plays, and short fiction. Her 10-minute play “Brides of Deceit” was part of a local performance and “Cemetery” placed second in The Writers Place short/teleplay screenplay competition. Publications include “Family Tradition,” a short dark suspense story (MuseItUp Publishing) and Death Sword, an urban fantasy/paranormal (Lyrical Press). She’s a member of RWA, Sisters in Crime, EPIC, and a supporting member of HWA. Besides coffee, she likes cats, cemeteries, and old abandoned buildings.

You can find her at:

Twitter: @PamelaTurner


Wendy said...

This is a powerful post Pamela. your life experience is more difficult than mine and I'm sure your daughters is even harder. She is lucky to have you and your husband who understand her. it's heartening to hear that she functions very well with basketball. This must bring her a certain amount of peace. It's good you have your writing too.

Margaret Fieland said...

One of my sons was recently diagnosed with Aspergers syndrome. He's in his twenties now, but when he was small, he had to listen to the radio in the dark. Otherwise he suffered from sensory overload.

Dana said...

First, Pamela, let me commend you for all you do as a caregiver.

Caregivers are rarely thanked and often ignored (as the focus for everyone, including said caregiver, is the caregiver's charge) - caregivers don't get time off, and their silent sacrifices most often go unacknowledged. And yet you, like so many others out there who deal with this behind closed doors, do so out of love for a family member.

I wish you and your family strength in your journey, and more of those treasured moments of peace and love.

Anonymous said...

I'm sorry to hear how distressed your daughter feels at times, Pamela. It must be equally distressing for you to witness. Her school seems a great environment for her, and I like the sound of her hobbies. I hope the comfort she takes from them continues to grow

Unknown said...

I am very touched by your posting. My oldest son is going through assessment now to see if he has any behavioral or mental disorders. We wait patiently for those results. He is similar with his rage and screaming, almost teretz-like symptoms. We have stopped caring what others think of us in public, they have no idea what we go through.
So glad your daughter and you have found fulfillment in life, we hope our son has the same success. xo

Unknown said...

I should say Tourette's, thank goodness for spellcheck when I'm writing! Love the title of this post to, so true.

Sandy said...

Wow Pam, my heart goes out to you and your daughter. That was an excellent post and a great way to use writing to educate others. Thanks so much for sharing.

Anonymous said...

Pam, kudos to you for sharing such an amazing post and putting it out there for others to learn from. I can't imagine how hard it must be for you and your husband, wanting to help your daughter, and limited by what you can do. I'm glad she's doing so well with basketball and other endeavors too. You've given her a supportive and loving home. I will certainly think twice when I see a child misbehave in public!

Marsha said...

God bless you, Pam, your daughter and husband. I'm so glad her school is helpful. I hope you have some sort of support group. I was a principal in a large urban district. The numbers of students with spectrum disorder were large, and the parents provided something of a support system for each other. We had a range of disabilities with the students at my school One of my students was verbal and very bright. She had an assistant accompany her everywhere. I made sure before we had a fire or tornado drill, to go down to her class to tell her and the staff. It just made sucah a difference to give her a bit of heads up. The students in her regular ed class were very supportive. I hope your daughter has this. Thanks for sharing and helping educate.

Teresa Reasor said...

Thank you for writing this candid and powerful post. I've had numerous students with Autism at school and they have ranged from severe-non-verbal to high functioning. One year I had 6 in a school of 500 students. Which is a pretty high percentage.
My husband's cousin Tommy is autistic. He is my age mid fifties and has a memory like an elephant. He can tell you what day of the week any date falls in(past or present) If he meets you he will shake your hand, ask you your address and if he doesn't see you again for 10 years he'll remember your name and where you live. He works in a center for special needs people who do repetitive factory work, but will never be able to live alone or care completely for himself.
We love him, with all his little idiosyncrasies, just as you do your daughter. And I wish the best for both of them.
Blessings to you and your family.
Teresa R.

Leona~Author said...

Thanks, Pam, for a very powerful and candid post. I have seen the rages from an autistic great-niece. She is near fifty years old now and does very well, but she won't ever be able to live on her own.

I agree that your post is educational in helping others to understand.

May the Lord bless you and your family.

PamelaTurner said...

First of all, wow! Thanks so much for the positive feedback. I mean it when I say I appreciate the kind words. (On a side note, the picture in the post was painted by her.)

Wendy - Her teacher's told me that if she could shoot baskets the entire PE period, she would. :-) I swear she uses some formula to gauge where to shoot. I'd never make as many baskets as she does.

Margaret - Sensory overload is something that one has to be aware of. As she's gotten older, certain things that bothered her are less disconcerting. For example, she was terrified of dogs for years. Now, she can be around them when she's helping volunteer.

Best wishes to you and your son and family.

Dana - Thank you. My mother was a nursing assistant and took care of my father, who suffered from epilepsy, including seizures. He later went on to have a severe form of Alzheimer's. (By then, my mother had died, and my stepmother was his caretaker. I live in another city.) I agree, caretakers need a shout out. So here it is, to every caretaker out there: "Thank you for all the hard work you do."

Helena - Thank you. Yes, it is distressing, and I'm so glad the episodes are far and few between. I can imagine it's just as painful and confusing for her. Her teacher said part of the frustration is not being able to communicate her needs, but hopefully, we can help her change that.

Cd - I hope your son's assessment helps you and him. My daughter was diagnosed through the school system (via their psychologist). The diagnosis has also been verified by a social worker, another psychologist, and psychiatrist. As for the public, it's gratifying when someone does understand and offers help and not judgment. (And don't feel bad. Apparently I couldn't spell psychologist.) :-)

Sandy - Thank you. If the post helps even one person, it'll be worth it.

Mae - Thanks! You do what you can. I grew up with a father who had epilepsy and a mother who apparently suffered from depression. (She told me she had contemplated suicide.) Neurological disorders seem to run on one side of my family. It sounds depressing, but I think those experiences helped prepare me.

Marsha - Kudos to you for creating a positive environment. My daughter goes to an urban high school, and the principal is very supportive. Even in middle school, she had a positive support base. Throughout school, she's had peers who support her. She's in high school now and will be allowed to stay until she's 21.

Teresa - Whoa. Your husband's cousin's memory is way better than mine. :-) Thanks for the kind words, and all best, also.

Leona - Thank you! I'm glad your great-niece is doing well. I wish there weren't cuts in services for people with special needs, given the need seems to be so great.

Unknown said...

Pam, thanks so much for sharing this. I learned a long time ago to never judge a book by it's cover, and your post reinforces that, and then some. I admire the strength I see in families who are blessed with this children.

Jenna Storm said...

Thank you Pamela for sharing your daughter's autism with us. Your post was powerful and touching. I worked in a special needs room in an elementary school and there were several children with autism. They were all unique and autism struck them in different ways. You're right, there's no room for anger when a child has no control.

Take care of yourself and I'm happy for your daughter that she has parents who love her and support her.

Babs Mountjoy said...

I understand what you're going through, as we have three kids dxed on the spectrum. My daughter has sensory integration issues and language delays, though she has a sunny disposition. My middle son has mild Asperger's, anger outbursts that have got him kicked out of school a couple of times, too--and the third, at 17 is now in placement outside the home because he just got too much for us to handle. I had a family nearly grown before we had these, and I never appreciated how easy life was with healthy children. Please, everyone hug a child today and appreciate their blessings. :)

PamelaTurner said...

Gemma - You're also welcome. :-) Thank you for stopping by.

Jenna - Thank you! And kudos to you for working with special needs children. My proverbial hat's off to you.

Barbara - Hugs! So sorry to hear about your sons. Luckily, my daughter hasn't been kicked out of school. We're lucky to have such a supportive system. It's a hard decision for parents to make, and we do what we hope is in their best interests.