Autism and Ataxia

Since my SPECT scan in 2019, my varied neurological issues from the physical like maintaining balance and proper coordination, to varied speech issues and poor memory etc. have continued. Having a combination of autism and other neurological issues makes it difficult to adjust to the many variables that can affect my function on a given day. Diagnosis for these neurological issues aside from my autism has been elusive. Not too long ago, my daughter’s neurologist suggested that she (and therefore also I) might have a rare genetic disorder called Episodic Ataxia. Although, this condition mainly accounts for my coordination and balance problems, not the memory and speech issues.

Episodic Ataxia

Episodic Ataxia is an autosomal dominant inherited genetic disorder characterized by periods of poor coordination and balance. The frequency of these episodes can vary widely by individual from several times a day to a couple times a year. One can have seizures or muscle weakness accompanying the coordination and balance issues. For me, it is hard to define a precise episode as I have subtle coordination and balance problems daily and I get varying amounts of leg weakness. However, some days the symptoms are more pronounced. For example, recently, I did too much forward bending over motion, repeatedly, and all of a sudden, I could tell I had done too much. At which point, it was difficult to walk or change direction as I felt like I was swaying and my body could not coordinate movement effectively. I also had some leg weakness but it wasn’t enough to keep me from walking once I had sat down for awhile to get the “swaying” to stop.


Some people have their neurological symptoms improved by taking the drug Acetazolamide. I found that it helped my brain process better — which admittedly is difficult to explain. As Episodic Ataxia is rare, Acetazolamide’s main use is not for that diagnosis. Most of the time Acetazolamide is prescribed for altitude sickness. But it can also be prescribed for certain types of glaucoma as well as other neurological conditions.

It is very important when first taking Acetazolamide or when changing dosages, to have certain blood chemistry analytes checked including pH, HCO3 and a Chem panel. If the med throws your blood chemistry out of whack, it has to get medically corrected. This is definitely not the time to skip the lab tests one’s doctor orders.

Adjusting for the Symptoms

There is no other specific treatment widely known for Episodic Ataxia. Depending upon the severity of symptoms, one learns to makes adjustments. I use a cane on days when the coordination, balance and leg weakness aren’t bad. On days when the ataxia symptoms and/or leg weakness are problematic, I use a walker with a seat. The seat comes in handy for if I have to stand longer than my legs easily can and leg weakness sets in so that I have to sit down. In public, it’s hard enough to fit in with the social and sensory issues of autism, much less to adjust to coordination and balance problems. But I find the cane or walker lets people know that I have disabilities, so they tend to be more patient and helpful.

Brain SPECT scan and Autism

As I mentioned on an autism post earlier this year, autism is hard to separate from dementia in an older adult. Autism certainly cannot be seen on MRI. However, much to my surprise, I have found out recently that autism CAN be seen on a brain SPECT scan. Not only that, but autism CAN be separated from dementia on a scan.

What diseases brain SPECT scan is used for

I want to emphasize here that I am NOT recommending you run out and get a brain SPECT scan to diagnose autism. For one thing SPECT scanning is not anywhere near as ubiquitous as MRI and CT scans.   The SPECT scan will cost more than an MRI, about 4 times more (see billing section below). For comparison, my co-pay for an MRI was less than $100. But even if you have sufficient funds to pay the cash price for a SPECT scan if you don’t have insurance coverage, it is only useful for certain categories of diseases. Quoting from my patient results report, the “American College of Radiology, the Society of Nuclear Medicine and the European Association of Nuclear Medicine establish the utility and scientific validity of SPECT functional brain imaging for detection of cerebrovascular disease and stroke, evaluation of dementia and Alzheimer’s disease, pre-surgical localization of epileptic foci, diagnostic evaluation of encephalitis and evaluation of suspected brain trauma.” Further, “research has also demonstrated regional perfusion patterns associated with other neurological disorders and exposure to neurotoxins, hypoxia and substances of abuse.” Notice autism spectrum disorder is not specifically mentioned.

Why did I get a brain SPECT scan?

I got a SPECT scan because I wanted to see if the scan could demonstrate dementia and/or traumatic brain injury (TBI) in a person who also has autism and ADHD. Additionally, my daughter (in her early 20’s) and I are also being evaluated for possible Huntington’s Disease or something similar. (Note:  Huntington’s Disease is diagnosed by a test for a specific gene. There are Huntington-Disease look-alikes that involve other genes–not all of which can be tested for).

How does a SPECT scan work?

A SPECT scan looks at blood perfusion patterns. Alzheimer’s dementia has a pattern. Frontotemporal dementia has a pattern. TBI has somewhat of a pattern but since severity, location and cause of the TBI can vary, it is harder to call in someone like me who has multiple neurological disorders vs. someone who doesn’t, but has just been in a car accident, for example.  There is research (not a lot yet) that shows somewhat of a pattern for autism. ADHD testing requires more elaborate (and costly) testing than the standard one scan testing I had. I did not have the specific two scan ADHD testing. It is important to note that not all areas of the brain have been mapped and the same area of the brain can have multiple functions. Therefore, a blood perfusion problem in a certain area of the brain can be somewhat ambiguous and difficult to interpret.

My brain SPECT scan results

So how helpful was my SPECT scan? Turns out quite helpful. The Radiologist impressions were: “Autism, possible neurodevelopmental disorder and possible traumatic brain injury.” As aforementioned, I did not have the ADHD two scan testing which is why the “neurodevelopmental disorder” was not definitive. Also as mentioned above, because of my multiple neurological issues, the TBI was only noted as “possible.” An area of the temporal region known to be commonly affected by the type of car accident I had in 1997, was damaged. The important part of knowing this information is the area above my left eye was where that damage was noted — which just happens to be where I get most of my headaches.

Equally important to me is what was ruled out. Note there is no dementia diagnosis. I don’t have a dementia disease; therefore, there isn’t the expectation of the symptoms getting progressively worse until there is the known outcome. Instead, what I have is enough damage in the areas of the brain (mostly temporal) responsible for memory so that I have symptoms that look like dementia but are not. So on a practical level, my brain acts like it has dementia but I don’t have a progressive disease that is a dementia.

Unfortunately, the information for a Huntington’s-type of disease was not noteworthy. In other words, I had noted damage in my cerebellum that explains my coordination, balance problems, dizziness and nausea but it was not severe enough to call a cerebellar degenerative disease. My symptoms are not as severe as my daughter’s who may be able to get a diagnosis from a neurologist as her neurological deficits are more outwardly notable.


As part of my health care career, I did medical billing. I must emphasize you need to read your Explanation of Benefits (EOB) from the insurance company. This EOB which you get after the insurance company such as Medicare, pays their amount, will tell you what you are obligated to pay. If the company/hospital doing your procedure, collects money from you beforehand, be aware that they may charge you much more than you are obligated to pay. In which case, you are entitled to a refund of the difference. For example, I have Medicare which says I am obligated to pay 20%. This is 20% of what Medicare says is allowable to bill. If Medicare denies coverage for certain CPT codes, you are not obligated to pay anything toward the fees the company charged for those codes. For a SPECT scan, expect to be billed for CPT code 78607 (Nuclear Medicine study of brain) and something like A9521 which is for the isotope used.  You should NOT be billed for codes like 99205 (new patient office visit) as you are getting a scan and the visit is nothing like a doctor’s visit. You should also not be billed for 90889 (preparation of report). I was billed for all 4 of those codes and asked to pay $1100 up front. The Medicare allowed amount for me to pay was actually $405. Don’t expect the company to refund you hundreds of dollars automatically. I had to take the initiative and demand more than once for the company to refund the $738 that I was owed.


SPECT scanning was helpful to me because areas of the brain that had perfusion problems matched up with my autism symptoms, ADHD symptoms, sleep disorder, headaches, dementia symptoms and cerebellar problems. The cerebellar problems indicate to me a developing problem such as Huntington’s disease or something similar because I did not have the aforementioned cerebellar symptoms previous to the last couple of years and they are getting progressively worse. Alzheimer’s disease and other dementias were ruled out. Importantly for my medical care in the future, I now have objective medical test results that document my symptoms instead of the medical establishment having just to take my word for it.

Updated 31 Jan 2020 (Billing information added)


NOTE on PHOTO:  Image is from my actual scan. Do NOT copy. Thank you.


Autism, Food Choices and Behavior

I frequently see the phrase “my child only eats” in the media followed by a list of processed foods such as packaged macaroni and cheese, chicken nuggets and french fries. Why is that? One key reason is familiarity; but, another reason is often the addictive quality of processed foods. Though it is far easier to stick to the “favorite foods,” a variety of food choices is not only key to proper nutrition but has positive effects on behavior as well.

It’s a myth that an autistic person will only eat a few foods. However, it is a pattern that we on the autism spectrum frequently fall into–if we do not WORK to maintain a healthy diet of a variety of foods. Therefore, parents of autistic children will have to labor to get their child(ren) to eat more than a few foods. Our “variety” of food choices likely will be more limited than the variety of diet that a neurotypical person eats, that is true, but a healthy diet, with probable additional vitamin and mineral supplements needed, CAN and should be done.

When one has processed foods in the diet, the body will crave them versus natural foods. Processed foods are terrible for the GI systems of everyone, but particularly for those on the autism spectrum who may have genetic-related problems with absorbing certain types of food or nutrients–much less artificial colors and preservatives. The result is not just poor nutrition, BUT likely poor behavior. In particular, if you notice any abdominal bloating in your child, your child has significant GI issues including food allergies or at least food intolerances. How do you act when you have a horrible stomach ache?

However, there may NOT be any visible signs of GI problems. My autistic daughter has a mast cell disorder which causes large histamine releases–her stomach does not always visibly bloat up; but, she does have mood changes. The GI tract and the brain have very connected nervous system communication. My daughter’s anxiety goes through the roof from changes in brain chemicals caused by adverse changes in her gut. Increased anxiety means potentially more meltdowns, at minimum. Anxiety and/or aggression are not the only possible mood changes, however, an autistic child may have. Does your child seem hyperactive or chatty after candy, drinks or food with artificial dyes or preservatives in it?  It’s not your imagination, there’s a connection. I could always tell when my child had dyes or sugary junk food after being at a friend’s house–as she would be unusually chatty and “happy” in a hyperactive way when she got home.  Bottom line:  Gut health in someone on the autism spectrum is critical for proper nutritional health and behavior.

Testing for nutritional deficiencies, allergies  etc.

Take your child to an Allergist physician and have food allergies tested for.  Additionally, find a primary care practitioner who practices functional/integrative medicine so he/she is willing to check Vitamin D levels, problems with “B” vitamin adsorptions, need for more Vitamin C for immunity (and even more is needed–if your child has Ehlers-Danlos, which is a collagen disorder), iron deficiency, trace mineral deficiencies, or heavy metal toxicity. Get all of those issues corrected or at least dealt with.

How to expand your child’s diet

Yes, processed food is a huge time saver and often times cheaper than real food. Get rid of it. If you have to eliminate one food at a time–while introducing one natural food at a time–then at least do that until you eliminate all of the processed foods.  Get rid of all candy, foods and drinks which contain artificial colors/dyes. No artificial preservatives. Eliminate anything that has aluminum such as sodium aluminum phosphate. No high fructose corn syrup. Get rid of anything with partially hydrogenated oils. Olive oil and coconut oil are okay. Very few people have celiac disease but many are getting an intolerance to wheat. Eliminating gluten has significantly improved the behavior in some autistic children. Restricting dairy may have beneficial effects as well, but be sure to substitute something like almond milk in order to maintain healthy bones and teeth in the growing child.

Try different ways of presenting healthy food. Maybe your child hates the texture of cooked carrots but likes the crispness of raw carrots–or vice versa.  We on the autism spectrum like order, but it is not always logical how we came up with the particular order we like. Present the food as whole versus in pieces.  Present it plain vs. ketchup, jam or some type of sauce on it.  Make sure the food is not touching or runs into other foods on the plate. Minimize the number of foods in front of your child at the same time.

Sensory issues and food

Sensory issues affect not only food choice but digestion. Smell seems to be a non-negotiable factor.  If your child hates the smell of the particular food, don’t fight it; take away the food.  Specifically for autistic people, texture is critical also, but sometimes texture can be adjusted to over time. Smell doesn’t seem to work that way. There may be other sensory issues affecting mealtime as well. Try putting a new food on the plate and encourage your child to touch it with his fingers. (For awhile, my daughter would only eat salad with her fingers. If I said she had to use a fork, she wouldn’t eat the salad). If that’s successful, encourage the child to take it in his/her mouth and move it around. It is NOT required to swallow it. If your child won’t touch or move it around in the mouth, just keep putting the food on the plate every day for several days (go up to 2 weeks if necessary). Eventually, the child may decide to eat the food. Additionally, there are certain behaviors done at mealtime that can increase or decrease how much the autistic child eats.


People on the autism spectrum tend to make a few food choices favorites. Though it takes work, persistence in introducing a variety of healthy foods into the diet is imperative for not only proper nutritional status but is likely to improve undesirable autistic behaviors as well such as reduced meltdowns.


What Probiotic is Best for Someone on the Autism Spectrum?

As the proper mix of bacteria in ones gastrointestinal system, referred to as “gut flora,” is critical for healthy physical and mental health, one is likely to need to take probiotics to keep this gut flora in balance.  After all, illness, stress, poor diet choices and especially antibiotic use, will throw the mix of bacteria out of whack. However, finding the BEST probiotic formula, that one can also afford, is not so straight forward.

I have been searching for an appropriate formula of probiotics for my daughter, who is in her early 20’s and on the autism spectrum.  What complicates matters is she has a mast cell disorder, plus food and chemical sensitivities so that maintaining a nutritious diet along with a healthy mix of gut flora is not easy. She is supposed to eat low histamine foods.. This restriction eliminates some foods that have been recommended to fix a “leaky gut” such as fermented dairy products including yogurt, sour cream, aged cheese and kefir, pickled veggies and kombucha, as well as really healthy foods including spinach, eggplant and tomatoes. Additionally, the “suspect list” of foods for causing histamine release is full of healthy foods such as pineapples, bananas, citrus fruit, strawberries, nuts, legumes and seafood. Recently, she tested positive for food allergies to shell fish as well. Needless to say, keeping a good balance of gut bacteria when one has so many food restrictions is daunting. Incidentally, though you may not have heard of mast cell disorders, the incidence is 1 in 10 for those on the autism spectrum or 10 times the incidence in the general population.

Summary of my Investigation on Probiotics

On the one hand, there are the cheap forms of probiotic products such as acquiring the bacteria from eating yogurt or taking a cheap commercial product pill — that may even be free by prescription if one is on Medicaid–such as Culturelle.  As mentioned above, not everyone can tolerate fermented dairy products such as yogurt.  As for Culturelle, it has only 1 probiotic strain Lactobacillus rhamnosus GG in a dose of 10 billion cells, along with inulin.  According to Consumer Reports, who has researched Culturelle’s claims, 10 billion cells is “an effective dose;” and the studies that have been done on its effectiveness, though not large, “hold promise.” Additionally, and quite importantly, not all probiotics make it past the stomach’s acid and into the intestines. Culturelle meets that test.  As for inulin, it is not destroyed in the stomach, so it makes it to the intestines; and it is supposed to “support the growth of a special kind of bacteria associated with improving bowel function and general health.” On the negative side, inulin may cause bloating, abdominal cramping, loose stools and gas.  Additionally, Culturelle does have some synthetic fillers in the product.

Then there are the more expensive, generally around $50 per container, of probiotic products that have a variety of strains, the substrains have reportedly been clinically studied, they contain much more than 10 billion live cultures, along with being “acid-resistant,” vegan, without synthetic fillers and they may even contain “prebiotic fiber” as well. In a study of 72 different probiotic products conducted by, the # 1 consumers’ choice was “Complete Probiotics Platinum” made by 1MD. Coming in at a close second was “Pro-45” by Livewell Nutrition. It is important to note that these probiotic products are intended for the general population; therefore, how they would help the autistic specifically, is unknown.

Specifically for Autistic Kids

For kids who are autistic in particular, and this includes the severely autistic, there is a probiotic product called “All-Star Nutrition Probiotic” which is specifically developed by the parent of a child on the autism spectrum.  This probiotic blend looks quite promising. I base this assessment on that it is a unique formulation specifically designed for those on the autism spectrum and the 110 reviews (when I looked at the website) by parents and at least one pediatrician. I read all 110 reviews; admittedly, all the reviews did not have comments. But overwhelmingly, the parents of these autistic children and the pediatrician rated the product 4 to 5 stars. The parents spoke of increased amount of language, increased understandable language, increased focus, better sleep, significantly increased calmness and other positive behaviors of their children on the autism spectrum.




What Causes Autism?

What causes autism?  Much has been said and hypothesized. In my last post on autism, I talked about my dementia symptoms on top of my autism spectrum disorder.  So I have been on a quest to get help … to see if causes for my disabilities could be identified so that maybe there was some treatment that would help me get better and make my quality of life better.


So I investigated the conventional medical community — the one that is trained to run tests and find a pill to help ones symptoms — that medical community. They have not been particularly helpful. To say the least. There is no magic pill. There is no particular medical specialty — though there is a sub-specialty– that is quite helpful.  But more on that later. I had brain tests run — an MRI that was normal and activity tests (which tested the specific areas of the brain and how they functioned).  Conclusion:  Hard to separate possible dementia from autism spectrum disorder — particularly autism that was not noticed until I was 40 (so there are not childhood baseline behaviors to study).  Big help. So I have been researching.  I did not expect to find some magic cure for dementia and certainly not for autism. If it was easy, it would have been front page news by now. But maybe I could at least find some treatments that could help my autism behaviors and dementia deficits.

I mean, let’s face it, there’s no one thing … no one gene, no one food in ones diet, no vaccine etc. that causes autism … or dementia for that matter. This makes autism spectrum disorder as well as dementia hard to study. Why? Specifically because in a rigorous scientific study, ONE factor is studied and all other possible factors are controlled for.  Otherwise, there is no way to determine if the one factor caused the effect being measured.  So it’s much easier to study a pill and see if that pill works or doesn’t.  This is why we have tons of failed rigorous scientific studies (including many sponsored by the pharmaceutical industry) that don’t point to a cure for autism or a cure for dementia such as Alzheimer’s–the most common form of dementia–as well as other diseases or disorders.  BUT that does NOT mean there’s no treatments for autism or dementia that work…or no hope.

What has made the search for autism and dementia help even more perplexing is the autism causes or dementia causes (in my case both) say in Pittsburgh are different from the causes in Seattle or Fargo, North Dakota. Why?  Because the environmental factors are different; and the mix of genetics is different–even when the environmental factors are similar (say in Pittsburgh vs. Gary, Indiana). What environmental factors? Here are just a few:  Industrial chemicals in air and/or water; heavy metals such as arsenic, copper, lead etc. in city or well water;  lead in household walls from decades ago that seeps through the more recent paint; eating certain types of fish that contain mercury; pesticides on food;  food that is genetically modified so that a person’s body may not recognize it as food but as something “foreign” and creates an autoimmune or allergic reaction against it; food that does not contain the vitamins and minerals the body requires; and “food” that contains artificial additives and colors.  Lots of  factors that may be occurring simultaneously so in effect hard to study–based on how scientific studies are traditionally done.

Ok, but what if you don’t have a significant exposure to environmental factors such as artificial food or heavy metals or industrial chemicals?  A person’s genetics may lead to impaired enzymes or other factors which are unable to excrete very tiny amounts of toxins present in ones body; whereas, someone with different genetics or even a lot of people with variable genetics can excrete these minuscule toxins easily.  In these cases, additional enzymes or supplements to help counteract that impaired function may be needed.

Besides food and chemicals, how much sleep and the quality of that sleep a person gets also may affect what disorders and diseases one gets. The human body needs adequate rest to heal and for the immune system to work properly. If one only sleeps 4 hours a night or has a sleep disorder, the body will not heal well from the everyday assaults it encounters. Even vaccines don’t work well if one doesn’t get adequate sleep in the couple of weeks after the shot; consequently, the immune response is muted and the vaccine may not do much good.

Another huge cause of disease and disorders: Stress and lack of exercise.  Repeated episodes of stress further prevent ones body from warding off disease and obtaining adequate healing. Energy drinks and Vitamin C pills are a band-aid. As for exercise, there are mountains of articles on the benefits so I will just note this:  Researchers now say sitting too long is as bad for your health as smoking.


So what’s the point of all this?  Did I find help for my autism behaviors and dementia symptoms?  YES … and it’s on-going…but I will sum it up and how you can find that help, too. But first, you may be asking, how credible am I. First, I have a graduate degree in Public Health so I have known about a lot of the above for decades but not how the effects could be reversed. Two, I worked in health care particularly hospitals for 30 years–but in the laboratory, not as a physician–so I am specifically a clinical laboratory scientist. Three, my daughter and I are on the autism spectrum and are pursuing the course of action I am recommending to you…and most importantly, we have seen improvements in our health.

So what have I found in my current quest for autism and dementia treatments that work?  Remember above I said there was a doctor sub-specialty that is helpful? ( I need to note that Allergist physicians are helpful to an extent in treatment–if allergies are part of your health problems. My daughter comes up with new allergies every few MONTHS). The sub-specialty is called Functional Medicine. Some of the physicians are called Integrative Medicine specialists. Generally, these are primary care providers who specialize in functional or integrative medicine.

But, I must warn you that because of the difficulty in measuring treatment outcomes (as noted above), the “mainstream medical community” tends to dismiss these “alternative medicine” solutions (if you can call eating organic food, for example, alternative medicine…) because most of the studies out there are on drugs and whether they work or not. Because there are variations of causation between people, scientifically measuring outcomes is incredibly difficult. Doesn’t mean the treatments don’t work. But it’s not going to make a pharmaceutical company richer. (Full disclosure:  I take exactly 4 pharmaceutical drugs which DO help me. One for a sporadic fast heart rate for unknown reason, one for my thyroid, one for my anxiety and one for sleep because I have a terrible lifelong sleep disorder.  Not saying that pharmaceutical drugs don’t have their effective uses–just that they don’t fix everything and side effects may make your health even worse).


Here’s what you need the Functional Medicine physician to do–every physician has his/her preferences so they may not do ALL of these without you suggesting.  In no particular order:

1. Get evaluated for a sleep disorder. I have a lifelong sleep disorder so any other intervention I make will have more limited effects than without a sleep disorder. My daughter went through full “sleep disorder testing” only to be told her condition is “severe” and it is “ideopathic” (no known cause) and no cure. But if you have sleep apnea, there is a very effective treatment, so the testing is not just a big waste of time.

2.   Have your diet evaluated, ie. food choices and how you can improve it (such as eat organic, cut down on SUGAR and avoid artificial anything) as a change in diet can have a very significant impact on autistic behavior.  Get tested for food allergies–as that will affect the diet recommendations. Just because you don’t break out in hives continuously, doesn’t mean you don’t have food allergies. There are a lot of foods that contain histamine so you may have to avoid those otherwise very healthy foods. Note:  Antihistamines do NOT fix everything and they have to be tweaked, but they can be very helpful. Benadryl (diphenhydramine) is not an answer to every histamine problem, particularly if you are found to have a mast cell disorder.

What does your gut have to do with how your brain functions as in autism or dementia?  A LOT.  The gut is now being called the “second brain.” What bacteria are in your gut (which is influenced by what you eat and if you take antibiotics and if you are under stress) has a HUGE effect on how your brain works and what diseases or disorders you get.  People on the autism spectrum have a very high likelihood of gastrointestinal problems

3.  Get evaluated for vitamin and mineral deficiencies–particularly, but not exclusively, iron, zinc, magnesium, B vitamins, and Vitamin D.  But it may not be so straightforward. For example, you may have a normal blood level of B12, but have an enzyme problem in processing the B12–which would need a specialized test to detect.

4.  Get evaluated for heavy metal toxicity (particularly, lead, arsenic, and mercury). There are methods to remove the toxins but it has to be done carefully. Though most people can tolerate a tiny amount of heavy metal exposure, not everyone can. It depends on one’s genetics.


So how much difference can the above recommendations make?  Functional medicine physicians have corrected violent, non-talkative autistic kids to kids with NO demonstrable autistic behaviors. No, it’s not wishful thinking (though the mainstream media will tell you it is). Likewise, people with even acute dementia have reversed their symptoms by following the above recommendations. Why haven’t you heard about this revolution?  Big Business, Big Pharma and a medical school model that teaches physicians to prescribe a pill for what ails you.

There are many causes of autism and dementia and treatments will vary depending upon the individual. But there is a specialty of physician that has experience reversing behaviors and symptoms in autistic people and those with other neurological disorders such as dementia.

Autism: Not Broken?

I’ve been trying to write this post for 2 years now and I’m still not sure this is going to come out how I want. But here goes… When I started this blog in 2015, I agreed that we are “not broken” because we are on the autism spectrum. And to be clear, to paraphrase the definition of “broken,” it means “damaged and no longer in working order.” I never thought of myself as “broken,” though I knew I did have some deficits but also clearly…some strengths.

Whether one is “broken,” however, does depend on ones definition of “in working order.” If the definition of “in working order” is can “hold a full-time job,” various surveys of those with autism spectrum disorder have shown that number is only around 14 to 16%.   Additionally, major criteria for determining disability are having trouble with “activities of daily living” (ADLs) which include bathing and feeding.  Now, I’m not talking just about people who physically have difficulty bathing and feeding themselves. If you cannot bring yourself to bathe for weeks at a time or forget to eat on a regular basis, you have some issues with ADL’s.

My point is…perpetuating the belief that those on the autism spectrum are “just different” like a pear is different from an apple, glosses over the very real difficulties that those on the autism spectrum have due to a neurological basis not just some personality quirks….including those like myself considered “high functioning.” But do we have a broken brain? Thus, we are “broken?” I’ll let you decide after you continue reading below; but, MY definition did change in February 2016, when “high functioning” became more like “broken” for me.

“High functioning” for me used to mean getting a bachelor’s then graduate degree followed by working full-time in a professional position in a hospital laboratory. Yes, I had significant social difficulties so there were “corrective action” talks and in later years, several firings usually with the reason given of “not a good fit.”  It was never “for cause.” Because those of us who are autistic are usually highly reliable, methodical and border on, if not actually, perfectionists. And I was no different.

Then one day in February of 2016, I pushed my brain for several hours on a new set of tasks at a job I had started about 6 weeks prior; and work and life was never the same. Now there had been a few warning signs over the last few years…such as decreasing ability to multi-task and some memory issues. Some would call it “normal aging” as I was in my early 50’s. And that’s all I thought it was until that day. When I got home from work (and I’m not sure how exactly I did that) I could no longer do simple tasks like make a meal; and my short term memory was practically gone. Confusion and fatigue became constant companions. Months of tests determined that my brain had slowed down like I was now in my 80’s instead of my early 50’s. I used my father for comparison as he has just turned 90. It wasn’t just all thinking that had drastically slowed down, my balance was off too. I could no longer walk and turn my head to talk or look at something without getting off balance. I couldn’t change the position of my head without getting dizzy. It sure looked like I had a broken brain. Doctors were no help. I did find some brain research that recommended supplements to help my brain to keep functioning and I started taking 20 pills a day. I took 2-3 naps a day. I became a person who had driven from New Hampshire to Alaska in 2015 and now could not drive more than a couple of miles without being overwhelmed.

Flash forward 2 years later and I can read more in one sitting than I could then and drive a bit further … although rush hour driving and highway driving are now things of the past. I now take usually just one nap a day. Otherwise, things are quite the same. I have trouble retrieving words, organizing my thoughts and speaking or writing without meandering. (My apologies if this article is somewhat unclear). I still cannot do a task such as volunteer work of helping hand out food from a food pantry or straighten up donated clothing … for more than 2 hours. Work is out of the question. I have to be very careful not to do too much or do anything too fast.  I still take the 20 pills a day as without them, the confusion and fatigue return in about a day.

So now my definition of autism and whether that means “broken” is quite different than before. I clearly have a broken brain.  Is this a cautionary tale of not working a high stress job for 30 years–if one is on the autism spectrum? And I say “on the autism spectrum” because lots of neurotypicals work high stress jobs such as physicians, nurses and police officers for 30 years or more and don’t have significant neurological problems. Is my case an extreme? So I posted my story on a couple of chatrooms for autistic adults to find out.

It turns out, my case, apparently, is not so isolated. One woman described it as “a door that silently closed in her mind.” A 59 year old man said his mind “blew out” in the mid-2000’s when he was a lawyer, though he is still able to work…doing research. Another woman, who is now 70, said after a life-time of stress she is now “too tired and confused to do anything.” All are on the autism spectrum.

You see in the mainstream media commonly all about the autistic children…but what you don’t see is what happens to those children who become adults and age over the decades.







Autism: Sound Sensitivity, Earplugs and Headphones

Many on the autism spectrum have acute sensitivity to sound.  Examples of acute sensitivity to sound include the buzzing of fluorescent lights or sensitivity to people chewing. To help with sound sensitivity, there are ear plugs or headphones that can be worn. Effectiveness and price can vary considerably.


The cheapest solution is to wear ear plugs. However, ear plugs must be placed in the ear properly (twisted to make thinner—not just shoved into the ear) to be effective– while also not being placed too far into the ear. Ear plug placement too far into the ear canal can cause the ear canal to swell from inflammation and may result ultimately in an ear infection. Additionally, ears and ear plugs need to be cleaned regularly to prevent infection.

Headsets:  Noise Cancelling vs. Noise Reducing

Noise cancellation headphones are designed to eliminate outside background sound so that one can listen to music clearly through the headset. This type of headphone typically runs in the $150 to $400 price range. How well the headset eliminates background noise and the quality of the music sound are why the price range is so variable.  With this type of headset there is also a question of whether the headset passively vs. actively eliminates background noise. Active is better.

Bose is the brand that’s recommended as the best active sound eliminator. For less high-end headphones, Sony has sturdy headsets that have good noise cancellation with adequate to superior quality music sound (depending upon the price). My daughter on the autism spectrum uses a Sony noise cancelling headphone that cost $150; it also had the added benefit of being available in multiple colors.

Please note:  To wear these headsets and get the noise cancellation without playing music, the headphones still must be turned on and plugged into a device such as a MP3 player or phone. However, blocking sound without having white noise or music playing can lead to increased sound sensitivity.

Noise reduction headphones-whether they are called “autism noise reduction headphones” for children or are headphones meant for adults—seem to work the same. The concept is to lower background noise while still being able to hear people speak. The ones on autism websites are for sound sensitive kids to wear usually at school.

The non-autism headphones for adults are designed essentially for people in noisy occupations, firearm enthusiasts or concert goers in order to prevent hearing damage. Some of the noise reducing headphones eliminate everything over 85 dB (decibels)– which is supposed to be the threshold when hearing damage occurs. 85 dB may still be too loud for the autistic, however. The less fancy headphones just lower the dB a specified amount.

Please note the dB reduction marked on the headphone box is “Lab dB.” This may not be the same as the “real life” sound reduction–which is typically much less. There are websites that list the “lab” vs “real life” sound reduction of different brands of headphones. The best sound reduction appears to be 32 Lab dB. No brand lists the real-life sound reduction–only what the lab sound reduction was found to be.

Other Considerations on Headsets

The quality of the headband and how tight the headband fits on the head are important considerations. Some of the so-called trendy headsets tend to have headbands that break over a short period of time. Additionally, if the headband gives one a headache and/or makes one feel “like one’s head is in a vice,” then the headset won’t be worn for long.

Another consideration before purchasing a headset is the size of the ear pads. The ear pads on the headsets don’t have a standard size so some of the ear pads are smaller than others depending upon the brand and price. Therefore, it is best for the person who needs the headset to try it on first to make sure it adequately covers the ears before buying.


There is no one size fits all solution for the autistic to help with sound sensitivity. Headphones specifically for the autistic tend to be multi-colored with characters or animals on them as the assumption is they are for kids. Adults on the autism spectrum have choices for assistance with sound sensitivity between noise cancelling or noise reduction headphones as well as earplugs.

Autism and ADHD have Similar Structural Defects in the Brain

Researchers at the University of Toronto have discovered that autism, attention deficit hyperactivity disorder (ADHD) and Obsessive Compulsive Disorder (OCD) all have “disruptions in the structure of the corpus callosum” in the brain. The corpus callosum is a nerve fiber bundle that links the left and right hemispheres of the brain. Results of the study were reported in the July 1, 2016 issue of the American Journal of Psychiatry.

In the study, the researchers examined the brains of 71 children with autism, 31 children with ADHD, 36 children with OCD and 62 “typical” children using diffusion tensor imaging. Diffusion tensor imaging measures the diffusion of water across the long fibers that connect the nerve cells in the brain’s white matter. There were “widespread disruptions” in the white matter structure in the brains of the children with autism and the brains of the children with ADHD. The OCD brains had “fewer alterations” than the autism or ADHD brains. Researchers also noted that the children who had the “least independence on daily tasks” (as assessed by their parents) were found to have the “most significant disruptions in white matter.”

Researchers noted two caveats. There were changes in only a small section of the corpus callosum in the autism, ADHD and OCD brains; therefore, the clinical meaning of the changes is unclear.  Secondly, “movement in the scanner” by the children could not be ruled out as affecting the differences in the three groups of children.

Sources:   Scientific American August 9, 2016 and August 8, 2016

Autism: Sensory Deprivation Rooms Good, Seclusion Rooms Bad

There is a big difference between “sensory deprivation rooms” and “seclusion rooms” in schools. If you are the parent or guardian of a child on the autism spectrum, make sure you know the difference and your child’s school does not use any Seclusion Rooms.

What’s the Difference?

Sensory Deprivation Rooms do not have locked doors; they are not tiny rooms. An aide or teacher usually goes with the student to help him calm down. The student is not left alone. The room is a bit darker than the ordinary classroom so there is less light stimuli. The rooms are not used as punishment or as discipline.

I have first-hand experience within the last 5 years of observing the use of Seclusion/Isolation/ Time-Out Rooms in elementary schools in the United States. In the past, I was a substitute teacher and occasionally I assisted as an aide in autism classrooms. The Seclusion Room was a small, dark room, sometimes as small as an outhouse. The teacher forced the autistic child into it and either locked the door or held the door shut. There were no lights. The autistic child was put into this room when he was “acting out.” There was no “calming down” the child. The child begged to be let out and went into total meltdown. The teacher either ignored the meltdown or told the child he couldn’t come out until he calmed down. It was barbaric and horrifying.

References and Further Resources on Autism and Seclusion vs.Sensory Deprivation Rooms:

United States:





New Zealand:

United Kingdom:

Autism and Abnormal Kidneys Linked through Deleted TSHZ3 Gene

Researchers from the Developmental Biology Institute of Marseille and the University of Manchester have identified a link between autism spectrum disorder and abnormal kidneys in children born with a deleted TSHZ3 gene. Their gene research study findings were published September 26 in the journal Nature Genetics.

The TSHZ3 gene region is critical for a syndrome associated with heterozygous deletions at 19q12-q13.11.  This syndrome includes autism spectrum disorder.  The researchers for this study  discovered a patient with this gene deletion who was born with abnormal kidneys and who displayed autism spectrum disorder behaviors. They then reviewed past research in mice and discovered that the mice with this gene deletion not only had kidney problems but also ASD-like learning difficulties. A global search of kidney clinics was then done which found 10 more patients with similar symptoms of abnormal kidneys and autism spectrum disorder behaviors where genetic testing subsequently revealed the deletion of the TSHZ3 gene. The researchers concluded that their gene research findings demonstrate how the TSHZ3 gene is essential for brain cerebral cortical projection neuron (CPN) development and function.


Sources: (Genetic Engineering & Biotechnology News), Sept. 27, 2016.  “TSHZ3 deletion causes an autism syndrome and defects in cortical projection neurons,” Sept. 26, 2016.