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Living with Autism

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November 28, 2011

Autism Moms and Stress Like Soldiers?

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What is it about raising an autistic child that causes unusual stress?

Researchers followed a group of moms of adolescents and adults with autism.

"Mothers of autistic children with high levels of behavior problems have pronounced physiological profiles of chronic stress…” said Marsha Mailick Seltzer, a researcher at the University of Wisconsin. 

Got that right sister. Should’ve come to dinner last year. After I heard a bump that I thought was my son having a seizure, my nerves exploded and I ended up tossing my plate of Shepard’s Pie (not just the food) in the garbage and then fleeing upstairs, where I sat on my bathroom floor and tore out my hair. You’d think upon learning it wasn’t a seizure, I would’ve been relieved. 

Instead, I was shocked. And angry my body went into crisis mode when it wasn’t a crisis. Had it been a true emergency I wouldn’t have been so upset. I would’ve remained calm, responded, protected and treated, like I have so many times. Why did I respond like this? What the heck was wrong with me?

Studies show a greater level of stress in mothers of autistic children than compared to mothers of children with other developmental disabilities (White and Hastings, 2004; Weiss, 2002). 

Another study shows higher rates of anxiety among mothers of autistic boys (Korean Academy of Medical Science, 2002).

Stress, based on severity of autism, is not a subject we hear much about in the autism community, as if all autistics were equally stressful. There's something about living with severe behaviors that keeps you on edge in the same way a solider is on edge waiting for the next battle. 

 “A hormone associated with stress is extremely low in moms of [severely]-autistic children …consistent with people experiencing chronic stress such as soldiers in combat,” said Seltzer. Stress like combat soldiers?

This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known

Maybe that explains once, when triggered by hearing bumps and crashing that I thought was my son hitting his head—but turned out to be a dog’s tail tapping the outside wall— I started shaking and felt the room spin.

And maybe it explains the day I tore apart the kitchen and suddenly punched myself repeatedly in the face. It was around 8pm. I had been trying to make dinner, but was interrupted at least 8 times by people in and out of the kitchen. My son had just gotten home from a week long hospital stay. It had been a nightmare stay. 

A doctor, who knew nothing about severe autism, had released my son undertreated. I could hear our home health nurse telling my autistic son “stop hitting your face,” which further rattled me, since the reason my son had gone to the hospital was to find out why he was on a two week self-hitting bender. 

A bender obviously rooted in undetected pain. I remember chopping salad. I could hear slapping sounds. Banging. Screams. A table fell over. Though two family members had gone to help the nurse, I began shaking, dropping plates. When one of my other kids darted in the kitchen and grazed the coffee pot, and it shattered on the floor, I remember running upstairs. Shutting my bedroom door and beating the tar out of myself. And it felt soothing. Stress like combat soldiers.

Maybe that also explains why I once scolded a child for bouncing a ball around Wal Mart. The sound reminded me of my autistic son’s head punching. It threw me into a panic. I thought I had to respond. It took me a few seconds to re-orientate and realize that my son was even around.

And maybe it explains why I once took off running at midnight, during a thunderstorm; half dressed, screaming at God. I had been alone handling my son’s seizures and self-injury for 24 hours. I remember the stress had progressed into the walls seeming like compactors and the ceiling like cement. I felt helpless. 

All I wanted was my son to smile, to be happy, safe. There hadn’t been much of a pass down to the incoming respite worker. “There’s been a lot of SIB,” I said, practically sprinting out the door. I ran for hours. I ran until even my dogs stopped running and looked at me like I was crazy. I didn’t feel crazy. Despite the wet, wind-whipped darkness, I had returned home calm, clear and refreshed. Stress like combat soldiers.

University of Washington Autism Center studied stress among autism moms. Parents in the autism group had “higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism”. Researchers would’ve studied dads, but apparently fathers weren’t as likely to fill out questionnaires. I’m guessing dads were busy working outside the home. 

Or it was a task better assigned to mother. Autism dads shouldn’t be looked at negatively. Many fathers of autistic children, such as Harold Doherty, author of the BLOG titled, “Facing Autism in New Brunswick,” are strong advocates and remain active in their autistic child’s life.

Stress like combat soldiers. Why? I’ll tell you why: Because of the severity and intensity of the situation. 

Parents of mildly autistic children or autistics with mild behavioral issues won’t experience ‘stress like combat soldiers’. 

And should be thankful they don't. 

Are there any positive sides of all the stress caused by raising an autistic child? Yes. Not all stress is bad. My autistic son is an amazing, resilient, intelligent person, stressful inducing or not. Alas, stress, you can’t avoid it. The good news is stress builds character. Stress makes us tougher. Stress teaches us to be patient. Stress pushes us to find treatment. Seek answers. And cling to faith. Stress makes us fight for justice. Demand change. Dare to hope.

Stress reminds us that we still live in a society far from understanding and treating severe autism. Stress reminds us of unmet needs to provide support for autism moms and dads experiencing “stress like combat soldiers.” 

What’s helped our family cope? RESPITE: Without Disability Right’s of California Attorneys helping us win more in-home respite, we would’ve surely ended up in straight jackets. So getting appropriate respite for our autistic son’s unique needs was and continues to be a major help, for all.

Secondly, maintaining a sense of humor. Without humor, you drown in anger and grief (We love Robin Williams, Will Ferrell and Chris Farley movies); Third, watch your diet. Consume more Wild Salmon, organic meats, eggs, yogurt, green drinks, Green Tea, cottage cheese, string cheese, water, coconut milk, walnuts, almonds, apples, carrots and bananas. Fourth, get more exercise.

Fifth, strive for more family meals, where siblings, typically cast aside in the chaos of living with an autistic sibling, are the center of attention. Lastly, faith, hope and love. Faith has been the most challenging. It’s not easy to stay close to God when you feel fractured. But somehow, God has always managed to keep us together. God, for reasons beyond my understanding, has never left or forsaken us, even during times of hopelessness…Somehow, He always brings us through the storms: stronger, safer and saner…

MOST importantly, never stop trying to IMPROVE your autistic child's life. It is NEVER TOO LATE to get them more help. To try new things to reduce the aberrant behaviors. Or improve their overall health. We have seen great improvements in our autistic son through changing certain medications and introducing things like Vitamin B patches and sensory supports for re-direction during self-injury. The more you help the autistic person, the more in control you will feel and the stress will diminish. It's the feeling of utter helplessness and despair that causes the extreme stress. It's the endless fights with state agencies telling you that they won't help that causes extreme stress. So keep fighting. Keep advocating for everything your child needs. You have nothing to lose. 

Hope deferred makes the heart sick, but when dreams come true, there is life and joy Proverbs 13:12

Kim Oakley

November 22, 2011

Curing Autism

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             Early November, 2011. “Slap, punch, thump,” I hear as I trudge through the door, carrying bags of groceries. Please God. Not again. It’s been days of no head hitting. Now this, again! I’m having trouble picturing a happy ending. Once I reach the bedroom, I ask Blake, the nurse, “What’s wrong?”, as if I don’t know. Blake takes a breath and wipes sweat from his brow. He’s been blocking and re-directing my son’s fists for 25 minutes. “I think he has a headache,” he says. “He’s got a fever.” Swell. A temperature of 99.3 and up is a common antecedent to my son’s self-injurious behavior (SIB). We’ve often suspected headaches accompany fever.

Unsure if anything else is triggering the SIB, the nurse performs a quick body check. No blisters. No bruises. No grimacing when palpitating stomach, legs, arms, etc… We give 1 Alleve. Three hours later, he’s still trying to punch his head. We remove his 7 mg. nicotine patch, wondering if nicotine may be exacerbating a headache. Within 3 hours, he’s hitting stronger and faster, as if the nicotine patch had been holding back a full-blown meltdown. We reapply a stronger nicotine patch (14 mg). After all, nicotine has been helping. Within a few hours his eyes are softer. He takes a nap, probably exhausted from trying to pummel his head. Later wakes up crying. A few head hits, but easily re-directed.

Hours pass. Night nurse arrives. Multiple pro-active (using gentle voice, massaging arms, slowing transition times) and acute interventions (retraining and re-directing flying fists so he doesn’t harm himself) are used. Night meds (Leviracetam, Lomotrigine, Remeron) are given. The deep blue of night gives way to the sun. Blake is back on shift. Intermittent SIB after getting out of morning bath, but to everyone’s astonishment, SIB hasn’t evolved into what we call “crazy SIB.” That’s our code word for behavioral emergency likely to cause bodily injury and require a 911 call. Mostly, because if we’ve exhausted investigative tools our home health setting can do, we have no choice. There is no turn for the worse. We are pleasantly surprised. Figure it must be the Nicotine. But we can’t be too confident. Managing SIB in severe autism is extremely complex. You have to constantly be on top of the situation. And know the individual.

We give another Alleve. Feed him super-puree’s (Wheat Germ, Liquid B-Vitamins, yogurt, ½ gluten free banana muffin, coconut milk, Raw Protein, egg yolks, carrot juice and pineapple.) We increase doses of garlic. We apply ice packs to head and neck. We keep a 14 mg. nicotine patch on him. It’s helping. We know, because he still has a slight fever. Yet, severe head hitting drifted down to mild hip slapping. A few hours later, he’s laughing. He does a skip walk to the door. He wants to walk outside. “We may have found something that really helps,” says Blake. This is the first time we get to see if nicotine is a contributing factor in controlling rapidly escalating SIB. It will take a few more times of testing. Had it been the nicotine? Had it truly held back crazy SIB? I can’t be sure, but at the moment I’m grateful to get my son back before the SIB— like it has so many other times—takes over, and leaves us spinning and skeptical of hope.

As I pause and think, I consider that in the valleys and peaks of severe autism, there may not exist the traditional happy ending. Maybe there are only happy days; weeks or months. And unexpected triumphs.

Parents of severely-autistic children should not be lured by the seductive, almost mocking call of ‘cure autism now’ movements. For one, to say you are out to “cure autism” is vague and ambiguous. 

Autism doesn't need to be "cured." It's not a disease. It's who a person is. What needs to be treated are the unfortunate self-injurious behaviors, chronic anxiety and seizures that often plague people with autism. Being autistic itself, is not a terrible thing. Living in an intense world that differs from those around you is not their fault. We need to work more on finding enhanced supports and services and ways to sooth and sanitize the anxiety, pain and confusion people with autism deal with, so they can live normal productive lives. People with severe autism don't have to adapt to us, we should be accommodating their needs. 

Hope is lost in the chaos of finding a cure to a complex condition that has morphed into off-labeling that further complicates curing. Let’s be specific. ‘Curing’ (eradicating) seizures and destructive behaviors and elevating health, happiness and cognition in the autistic individual is a more logical, realistic goal. 

One we should strive for if we ever hope to improve the lives of people with autism. 

Kim Oakley

November 4, 2011

Nicotine Therapy Shows Promise for Autistic Adult

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Nicotine Treatment Shows Promise for Self-Injurious Behavior in Autism.

                            By: Kim Oakley


Self-Injurious behavior (SIB) is one of the most devastating and difficult to treat behaviors in autistic individuals. As the population of Autistic Spectrum Disorder (ASD) swells, researchers sense the urgency to find new and better treatments. Sadly, this urgency has not extended to self-injurious behaviors in autism. Depending on which study read, about 10-30% of autistics suffer from SIB. That said, let’s pause and recognize the difference between autistics who episodically and mildly self-abuse and those who chronically and savagely self-abuse. For example, an autistic who mildly slaps his leg every few months is a world apart from an autistic that slams his fists into his head or bite pieces of flesh from his arm everyday.

Thus, when I write about SIB, I refer to serious case. Cases like my son’s. I’m not the only parent of an autistic child with SIB. There are thousands of other self-injurious autistics around the world. I can only imagine the pain of parents living in a third world country with an autistic child with SIB. Have we even identified where they are?


For decades, academics, behaviorists, psychologists and others have sought to discover reasons and remedies for SIB. Few research studies have held promise. One reason is the standard of care for treating SIB doesn’t include diagnosing brain function. Autistics held captive to years of SIB require a serious examination of brain function. Why the brain?

Autistic brains are unlike other brains. One study showed autistic patients had lower perfusion in right temporal, occipital lobe, thalami, and left basal ganglia (Journal of Neuropsychiatry, 2000). Another showed brain dysfunction in temporal and parietal lobes with left cerebral hemisphere showing greater abnormality than left side (Journal of Nuclear Medicine, Vol 36, No. 7, 1995).

After revolving inside the world of autism and SIB for over 20 years, I believe a major fueling mechanism involved in SIB is neurotransmitter dysfunction. This would explain fluctuating antecedents. And baffling mood swings.


Research shows disruptions of acetylcholine in brains of autistic adults. Interestingly, last year, a functional magnetic resonance image (fMRI) of my son’s brain showed “blunted choline.” I discovered this by persistent inquiry, after repeatedly told test “showed nothing significant.”

Blunted choline in the autistic brain is far from insignificant. It was the first hopeful clue I’d heard in years. Immediately, I began researching ways to elevate choline in brain. That’s how I came across nicotine research. Not that studies show direct connections to nicotine helping autistics with SIB, but nicotine stood out to me as a unique therapy to target and tweak not only acetylcholine, but other neurotransmitters likely involved in fueling my son’s SIB.

Case in point— researchers found, along with serotonin and dopamine, deficits in the neurotransmitter acetylcholine may be associated with autism (Gillberg C. Steffenburg, et al., 1989). Stimulation of cholinergic neurons releases dopamine in brain. One study suggested dysregulation in dopamine within basal ganglia as a causative factor of SIB (Canales et al., 2000).

So we see neurotransmitter dysfunction in autism. The challenge is identifying which neurotransmitters are involved in lowering an autistic individual’s SIB threshold. It’s scary to think I would’ve never known my son’s brain was deficient in a neurotransmitter, had I not pushed for an fMRI and later discovered “blunted choline.” I’m not saying every parent of an autistic child should demand brain imaging. But in cases of autism with intractable SIB, it should be the standard of care.

Back to nicotine elevating choline in the brain: Nicotine activates cholinergic neurons in many areas of brain, improving memory, focus and concentration. A foggy brain with impaired concentration increases anxiety. Anxiety is one of many antecedents that trigger my son’s SIB. Because multiple antecedents fuel SIB, it’s prudent to rule out and detect if we ever hope to discover more effective treatments for SIB.  

Not all physicians are receptive to novel, emerging treatments. And even fewer respect a parent’s research and recommendations for therapy. Thankfully, my son’s general practitioner, neurologist and psychiatrist (all females I might add) are amazingly kind and receptive to research and suggestions I’ve presented. They’re open-minded doctors. They want to help my son. I couldn’t ask for a better team of doctors. Surely, this has helped renew hope in what was becoming a hopeless situation.

Conclusion: My autistic son began nicotine patch therapy to help treat his chronic, episodic, brutal SIB in July of this year, 2011. He began with 14 mg patch, placed on shoulder, 1x daily, removed at night, and replaced with a fresh patch, in a different location on upper body, in morning. Within a few days, we saw a reduction in SIB and increased focus and concentration.

Three weeks later, we lowered the dose. He began wearing the 7mg patch. We saw a slight increase in SIB, but it may have been sparked by constipation or what appeared as a slight cold, which he recuperated from rather quickly (that was odd).

As of today, November 4, 2011, he’s still on 7mg Nicotine Patch daily, with 14 mg patches used PRN (as needed) for days SIB escalates. Using higher dose patch PRN has helped calm him on days he exhibits a sharp increase in slapping or punching his body.

We have not seen an increase in seizure activity while on Nicotine Patch. Not even on 14 mg dose. We have seen slight decrease in appetite, on 14 mg patch, however.

We have also seen significant increase in laughter, focus and self-control. He’s not so “stuck” or “scattered” in his own world. Also, fine and gross motor skills appear better. Not dragging his feet as much. All in all, while not a cure, using Nicotine Patch therapy to help treat my son’s devastating SIB continues to show promising results.


Kim Oakley