Sleep Problems in Autism – One Simple Solution
Sleep Problems in Autism – One Simple Solution
Our miracle story – after years of severe sleep deprivation, our ASD daughter’s serious sleep problem was solved with one simple remedy
Regression into non-verbal autism was followed by chronic diarrhoea, refusal to eat and not sleeping
This story is actually quite simple, yet truly miraculous. At least it was for my family when we were so desperate for some mercy that we would have done anything to get it. Fortunately, the answer was sitting in our kitchen pantry so we didn’t have to go far.
Our daughter, 5 years old at the time, had regressed swiftly into a very sickly state and a severe form of nonverbal autism at the age of two following a common childhood illness (before any naysayers chime in, please know that this regression from happy healthy, fully communicative tot to nonverbal, “failure to thrive” tot is all evidenced in video footage and pediatric records so…save your breath). We were in 100% survival mode trying to figure out what had just happened, how to help our struggling daughter and how to prevent this from happening to our other newborn daughter.
It was a confusing and traumatic time for everyone, to put it lightly. The loss of our daughter as we knew her, the chronic diarrhea, the severed bond, the refusal to eat, the loss of interest in things that once brought joy–all of these things were challenging beyond measure. BUT one thing that compounded every struggle and brought things to a whole new level of survival was the fact that our daughter had almost completely stopped sleeping.
Going without sleep for over two years – extreme emotional and physical exhaustion
Each night, we would put our daughter in bed (well, in her room anyways) and proceed to watch her on her monitor as she engaged in stimming behavior for 4-5 hours until she crashed around midnight. She would sleep for 1-2 hours, sometimes 2-3 if we were lucky, and then wake up for the day. No naps. This went on for over two years.
We had all reached a point of exhaustion that is indescribable. In retrospect, I am honestly not even sure how we made it through. The physical exhaustion caused by lack of sleep and the emotional exhaustion of watching your child who has totally checked out of reality climb the walls all night–it is enough to take even the strongest person down. And most importantly, what is this doing to her already compromised brain and body during these crucial developmental years? Time was of the essence. We had to find answers!
Tests reveal common autism abnormalities but no real answers
Test after test revealed abnormalities—mostly metabolic—but no real answers. She was also plagued with chronic gastrointestinal issues and immune system dysfunction, including a condition called hypogammaglobulimia (low levels of immune globulin which helps fight infections) and an inability to appropriately mount an antibody response. We did every genetic test available–nothing found. Nothing even secondary!
Finally, we opted to have a large muscle biopsy performed on her upper thigh (an invasive test that is sometimes used as a last result to uncover metabolic issues) to try and find anything that might give us some direction. The results, of course, came back abnormal, showing only 30% of the mtDNA needed to keep systems running appropriately. By definition, (according to Baylor Medicine) this qualifies her for a life threatening condition called mtDNA Depletion Syndrome by 20 percentage points. To this day, no one knows what causes her to have these low levels of mtDNA.
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Finally, a solution! The answer to our daughter’s severe sleep problem had been sitting in our kitchen!
All things considered, my daughter’s neurologist said that at the very least we should be giving her 2-3 tablespoons of raw corn starch mixed in juice every night. In my mind I am thinking “What?? You mean the stuff that I use to cook?” Like I said, we would have done anything at this point so we took our daughter home with us to heal from her surgery and began dosing the starch. The measurements from her doctor weren’t an exact science but they were based on her weight. We use just enough orange juice to make it easy to draw up into the syringe but not so much that she was getting a ton of sugar right before bed or having to take too many “syringe fulls” of the mixture.
That night, she slept 10-12 hours. We were all so exhausted from being at the hospital, and she likely still had some anesthesia in her system, so we chalked it up to that and were happy just to take a restful night’s sleep at face value and move on. Next night, we give her another corn starch slurry and off to bed she goes. Another 10-12 hours! Again, we take note of it but too exhausted to try and overanalyze anything so we take it at face value and go on about the day.
Honestly, the corn starch from the pantry is the last thing we are connecting with her sleep improvements. Why would corn starch make someone sleep? However, this continues for a week, then two, then three and it dawns on us that she has been sleeping ever since she started taking the starch. This was never talked about though or predicted to be a side effect of this intervention. What is going on?
Our miraculous, life-changing intervention may work for other children on the autism spectrum who are not sleeping well. But why?
I tell a friend who also has a daughter on the spectrum with severe sleep issues and we both wonder if this benign, convenient, inexpensive, LIFE CHANGING intervention might work for her. Miraculously, IT DOES! We cannot believe what is happening! I want to tell the world about this!
There are so many autism children and parents out there struggling just to make it through the day. What if something as simple as corn starch can help them too? So I get the word out to other parents and guess what… it helps most of them too!
But why? Well, that is the million-dollar question that stills needs to be answered and speaks to the desperate need to advance medical research for kids with autism. Could it be regulating blood sugar? Corn starch is a prebiotic – could it be modulating the microbiome which is increasingly being singled out in research as a major player in autism and behaviour in general?
Interestingly, our daughter did not need to take the corn starch slurry forever to continue benefitting from the effects. We are now three and a half years removed from her muscle biopsy and while her sleep isn’t 100% perfect it remains significantly improved even without the starch. Where she was sleeping on a few hours a week, she now averages eight hours a night. My layperson opinion is that the starch has modified her microbiome in a positive way and that she has been able to more or less sustain the improvements to her gut bacteria that supported healthy sleep.
By writing about this, I can only hope that this message will reach other families who are in desperate need of some help. I also hope that this phenomenon speaks to the reality that autism, for so many children, is a condition that is in need of answers and treatments. Most of those answers are going to come from bona fide research but while we wait, some of those answers are going to come from the “underground railroad” of autism parents looking for answers for their very deserving children. These parents are helping to shape the landscape of autism research moving forward and are not willing to accept anything less than the best for their children and their futures and I am beyond proud to be one of them!
Note: For parents whose children have allergies or sensitivities to corn, many parents have used potato or tapioca starch as a successful substitute.
OUTLINE: Metabolic abnormalities, acquired mitochondrial dysfunction and oxidative stress in autism
There is now substantial evidence that impaired energy metabolism and mitochondrial dysfunction, including brain energy metabolism, perturbation in sulfur and amino acid metabolism, high levels of oxidative stress and impaired methylation processes are more common in autism than other groups, and could play a major pathological role in at least a subset of the disorder.
A substantial percentage of individuals with autism display markers of abnormal mitochondrial energy metabolism, such as elevated lactate, pyruvate and alanine in blood, urine and/or cerebrospinal fluid, as well as serum carnitine deficiency.
In the majority of cases this abnormal energy metabolism cannot be linked to genetic causes or another primary inborn error of metabolism.
However, it is known that in many cases of metabolic diseases, such as urea cycle disorders, inborn errors of biopterin or purine metabolism, autistic features may be a leading, or sometimes the only visible clinical feature of the underlying disease.
The metabolic and chemical changes observed in Autism Spectrum Disorder (ASD) brains are suggestive of a dynamic disease process secondary to outside stressors. It has therefore been suggested that in ASD, metabolic and mitochondrial abnormalities could occur as a downstream consequence of immune dysfunction, or abnormal or harmful microbiome. Insufficient mitochondrial energy production could result from and contribute to cellular oxidative stress and chronic inflammation in ASD. Reactive oxygen species are destructive to cells and organs, and elevated oxidative stress has been implicated in autoimmune, inflammatory, cardiovascular and neurodegenerative diseases and cancer. Of likely relevance to autism is also the discovery of a complex role of chronic inflammation in metabolic disorders, with effects on cognition and behaviours. (see: ‘Medical Comorbidities in Autism Spectrum Disorders – A Primer for Health Care Professionals and Policy Makers).
Autism findings – metabolic dysfunction, altered gut microbiota
Carrasco M, Salazar C, Tiznado W, Ruiz LM (2019) Alterations of Mitochondrial Biology in the Oral Mucosa of Chilean Children with Autism Spectrum Disorder(ASD) Cells. Apr 23;8(4). link
Cheng N, Rho JM, Masino SA. (2017) Metabolic Dysfunction Underlying Autism Spectrum Disorder and Potential Treatment Approaches. Front Mol Neurosci. Feb 21;10:34. link
Rose S, Niyazov DM, Rossignol DA, et al. (2018) Clinical and Molecular Characteristics of Mitochondrial Dysfunction in Autism Spectrum Disorder. Mol Diagn Ther. Oct;22(5):571-593. link
Sharon, G, Cruz N, Kang D, et al. (2019). Human Gut Microbiota from Autism Spectrum Disorder Promote Behavioral Symptoms in Mice. Cell, 177(6), pp.1600-1618.e17. link
The research behind corn starch and other resistant starches
Bindels LB, Segura Munoz RR, Gomes-Neto JC, et al. (2017) Resistant starch can improve insulin sensitivity independently of the gut microbiota. Microbiome. 2017 Feb 7;5(1):12. link
Maier TV, Lucio M, Lee LH, et al. (2017) Impact of Dietary Resistant Starch on the Human Gut Microbiome, Metaproteome, and Metabolome. MBio. Oct 17;8(5). link
Upadhyaya B, McCormack L, Fardin-Kia AR, et al. (2016) Impact of dietary resistant starch type 4 on human gut microbiota and immunometabolic functions. Sci Rep. Jun 30;6:28797. link
Yang X, Darko KO, Huang Y, et al. (2017) Resistant Starch Regulates Gut Microbiota: Structure, Biochemistry and Cell Signalling. Cell Physiol Biochem. 42(1):306-318. link
Rousseau-Nepton I, Huot C, et al. (2018) Sleep and quality of life of patients with glycogen storage disease on standard and modified uncooked cornstarch. Mol Genet Metab. Mar;123(3):326-330. link
Weng N, Luo YW, Xu JD, Zhang Y. (2019) Abnormal nocturnal behavior due to hypoglycemia: A case report. Medicine (Baltimore). Feb;98(6):e14405. link