Parenting

I Wish My Daughter Had Autism

You may think it’s horrible to say this, but I wish my daughter had autism.  BUT there is a very good reason for it.

I should clarify myself before I upset anyone whose life has been touched by autism. I wish my daughter, Paige, had a diagnosis of autism. She displays all the behaviors of autism, except one – she does not have social deficits.

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WHAT DOES PAIGE DO THAT LOOKS LIKE AUTISM?

1.   Paige has Sensory Processing Disorder (SPD). More often than not, children with autism have sensory challenges.

This poem was written by Darci Harig, who has SPD. Take a moment to read it and put yourself in her place.

My skin feels like it is on fire, tags poke at me like a hot wire.
My pants are too loose, or way too tight…no matter what, they just don’t feel right.
My shoes hurt my feet, I just can’t deal
The pain I feel is very real.
Transitions are hard for me, structure and routine are a must
Disregulation and anxiety can lead to mistrust.
What you may not know and what you may not see
Is that I am a child with SPD.
Loud noises and chaos can really freak me out,
Because of this, I too, may scream and shout.
Sometimes I may hit, push, and run into things too
Please know I am never really trying to hurt you.
I may need to be alone, or have a quiet space
It helps me to feel calm and my mind not to race.
Although we may learn differently, most of us are really quite smart
Learning to understand my needs will help us to have a great start.
What you may not know and what you may not see
Is that I am a child with SPD.
Weighted blankets and compression vests help give me the input I need
A few among the tools used to help me to succeed.
I may have trouble sleeping and wake a lot with fear
It helps to know you love me and that you’re always near.
Quite often I am misunderstood when I don’t behave like the others
They think that I am naughty and, “not like my sisters and brothers”.
What they do not know and what they do not see
Is that I am a child with SPD.
Our senses give our brains directions on how to think and feel
My brain can’t read directions…my SPD is REAL.
You all have a highway where all of your senses travel
I have a traffic jam.. which leads me to unravel.
I don’t need to be judged… or felt sorry for
I am just like you ..although I struggle more.
Please take the time today, to learn more about ME
Because I am more then my SPD.

My daughter’s sensory processing challenges are a mix of sensory-seeking (i.e. crashing into things) and sensory avoidance (i.e. not using the toilet at school because it flushes too loud). Perhaps the biggest struggle is that these things can change from day to day. Her sensory perception inconsistency produces a lot of fear and anxiety.

http://spdfoundation.net/about-sensory-processing-disorder/ is an excellent website with further information if you have a child/suspect your child has SPD, or merely wish to educate yourself about this often overlooked and/or misdiagnosed disorder.

2.  Paige stims. Stimming is one the main symptoms of autism.

Stimming is defined by http://www.autism-help.org/behavior-stimming-autism.htm, as, “repetitive body movements or movement of objects. This behavior is common in many individuals with developmental disabilities; however, it appears to be more common in autism.”

Sensory overload or sensory seeking behavior is the motivation for stimming. 

My daughter constantly puts things in her mouth; other kids pretend to take a bite out of the toy sandwich, she shoves it in her mouth. (We give her gum constantly.) She scratches herself even when there isn’t a bug bite. Her stimming, just like her sensory processing, can change from day to day. She has gone through periods of whistling, snapping fingers, sniffing things excessively, licking (not just objects or us, but the cats too), and singing the same tune over and over.

For further information on stimming, please visit the above-mentioned Autism-help.org website.

3.  Paige is prone to extreme meltdowns, wherein she cannot communicate what is wrong nor can we determine the reason. Children with autism have tantrums involving these same features.

“Tantrums are one of the most common problems in young kids with ASD. They may appear to go into a state of rage, panic, anxiety or fear for no reason at all. This might involve screaming, crying, resisting contact with others, or pushing others away.” This is quoted from the website, http://www.myaspergerschild.com/2009/07/temper-tantrums-and-meltdowns-in.html.

Unless you are one of the few lucky parents, all children have tantrums. However, the duration, intensity, and reasons for children with autism may be different. 

“So what,” you may say. “Get her some therapy and explain it to her teachers.

Here’s the problem:  SPD isn’t listed in the Diagnostic Statistical Manual (DSM), which is the book of criteria for neurological illnesses. The medical field does not consider SPD a disorder in and of itself. This means Paige doesn’t qualify for THE EXACT SAME sensory therapy children with autism receive… all because she doesn’t have a label.

And because the medical community doesn’t think SPD warrants a DSM diagnosis, others do not recognize her challenges.

In fact, this blog was inspired by what happened my-son-is-not-naughty-he-is-just-trying-his-best-to-deal-with-things-so-am-i-sensory-processing-disorder-look-it-up--2b35c.pnglast evening at my daughter’s school.

Paige’s class was performing the annual Three Piggy Opera, a musical number about The Three Little Pigs. Paige did not want to go stand up on stage with her classmates and perform so I didn’t make her.

Because she doesn’t have stage fright, she has anxiety.

Real, true anxiety. As in, she-may-need-medication anxiety.

Anxiety is very common in SPD. Why? These children are anxious about the external world because their internal doesn’t function properly and, in Paige’s case, consistently.

My heart broke during her Thanksgiving Program last year, in 2014. She was absolutely PETRIFIED, rooted to the spot and unable to do the song’s accompanying hand motions and dance moves. I was miserable watching her. When she got off the stage and saw me, she burst into tears and cried until she had problems breathing. She didn’t want to stay for the “Thanksgiving Feast;” she wanted to leave immediately.

No way was I putting her through that again!! And what would be the point? I’d be miserable watching her be miserable.

And because of my decision, her teacher got angry. No, she didn’t yell or say anything rude – she just said OK in a tone that indicated it was anything but OK. Perhaps if Paige had a diagnosis, a label for these struggles, perhaps her teacher would have been more understanding. And that is the reason I wish I could get her a diagnosis of autism.

If this blog has touched you in any way, please rally the medical community to add this disorder to the DSM so children like my daughter can get the therapeutic help and social support they need.

14 thoughts on “I Wish My Daughter Had Autism

  1. Thank you quiwpleez and chavisory for your comments. A lot of her behavioral issues are due to the high amount of drugs she was exposed to in utero. 😦 We do plan to have her evaluated when we switch insurance; however, I’m not sure if we’ll come away with anything that will get her therapy. I will definitely post another blog about the results!

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  2. Thanks for your honesty. I have always been on the side of labeling (which is rare) because without it my son would not get the help he needs. I totally agree that you should get a second opinion.

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  3. Undoubtedly time for a second opinion . . . I have two boys on the spectrum, one is highly social, not always age appropriately social, (he is 23 years old and would often rather have a light saber battle than anything else), but he carries an autism diagnosis nonetheless. I hope you are able to find a knowledgeable developmental pediatrician and get her the services, and the diagnosis, that will help her as she navigates her way through life. {{{hugs & Prayers}}}

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  4. If social deficits are the only thing that clinicians think she’s not displaying…it really might be worth waiting a bit and trying again with a different professional for an autism diagnosis?

    The thing is, social deficits, though commonly cited as a feature of autism…are not actually intrinsically a feature of autism. They’re more likely the result of core differences in body language, pragmatic language, and sensory processing issues than they are a core deficit of social skills. And girls fly under the diagnostic radar a LOT in this way…and it’s also common for girls to look like they don’t have major social issues until they’re older, when the social landscape of typical girls can very suddenly become more complicated and outstrip their previously sufficient coping abilities. (This is actually noted in the DSM 5 criteria..that social difficulty might not become apparent until a change in social environment outpaces a kid’s abilities.)

    Lots of love for daughter. I know how she feels. 😛

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