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 are we “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. 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. 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.

Autism and Effects of Copy Number Variations of the 16p11.2 BP4-BP5 Gene

According to a study published in the Journal of Biological Psychiatry November 5, 2015, gene deletions and copies at the 16p11.2 BP4-BP5 locus are “highly associated” with autism spectrum disorder and schizophrenia. The study assessed the effects of “62 deletion carriers, 44 duplication carriers and 71 intrafamilial control subjects.”

Results of the study showed that although IQ was decreased for both deletion carriers and duplication carriers, there was variance in language, verbal memory and inhibition between the two types of carriers.  Deletion carriers had “severe impairments of phonology and of inhibition skills beyond what is expected for their IQ level.” However, for those with gene duplication, “verbal memory and phonology” was improved compared to the control subjects.

The study authors note that further research is needed to replicate the findings regarding this gene locus associated with autism and to explain the molecular mechanisms that affect these types of cognition.

Autism and Indoor Air Pollution

There is rising evidence that environmental exposures such as air pollution in genetically-susceptible individuals are a cause of autism. Some examples of air pollution are heavy metals, toluene, solvents, and flame retardants. Many people don’t realize that they can be exposed to these pollutants in their homes. Below are some examples of indoor air pollution:

  • Carpeting—Some carpets can emit volatile organic compounds (VOCs) while carpet padding may be treated with flame-retardants.
  • Furniture—VOCs can be emitted from the glues and binders in plywood, particleboard and composite wood products.
  • Home Printers: Ink cartridges may emit VOCs and glymes. These solvent chemicals are part of the glycol ether family.
  • Scented candles—Non-beeswax candles can emit cancer-causing benzene and toluene.
  • Non-stick cookware can emit polytetrafluoroethylene. Use stainless steel, stoneware or domestic cast-iron cookware instead.
  • Paints, varnishes and wax as well as some cleaning products contain organic solvents. Store in an outdoor shed rather than in your home.

To help protect yourself from these sources of indoor air pollution and potential causes of autism, look for “Low VOCs” information on product labels, well ventilate your home while using solvents, air out new carpeting and building materials before installing them in your home and substitute synthetically scented candles and non-stick cookware with safe alternatives.

Sources:  Utah Physicians for a Healthy Environment (

American Lung Association (

Reveal Health Tracker Can Predict Autism Meltdown

You have probably heard of wearable fitness trackers that a person wears to measure their fitness level, but have you heard of a wearable health tracker that measures an autistic person’s response to anxiety thus enabling a prediction of when an autism meltdown is likely to occur?  This anxiety tracker is called Reveal and it is made by Awake Labs of Vancouver, Canada.

Reveal is a wearable band with state-of-the-art sensors that measure and track signals the body makes in response to anxiety. There are three types of sensors:  a heart rate sensor, a skin conductivity sensor that measures sweat and a temperature sensor. This autism technology system includes software which uses snapshots of these physiological responses and then using an “advanced algorithm” helps to identify patterns of anxiety by graphing the heart rate, sweat and temperature changes over time. If a meltdown appears imminent, a smartphone app notifies a designated person such as a parent or teacher of these physiological changes that are likely leading to a meltdown. Information on how to order one of these autism technology health trackers is provided through the sources below.


Forget counting steps: Reveal fitness tracker records stressors for autistic kids


Autism: FDA Announces Proposal to Ban Electric Stimulation Devices

The FDA announced today a proposal to ban electrical stimulation devices (ESDs) which are known to be used on autistic people who are “self-injurious or aggressive.” The FDA stated the devices “present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes in labeling.” Evidence of adverse effects caused by ESDs included “significant psychological and physical risks …including depression, anxiety, worsening of self-injury behaviors and symptoms of post-traumatic stress disorder, pain, burns, tissue damage and errant shocks from a device malfunction.” Note this is a proposed ban. Once this proposal is published in the Federal Register, Monday, April 25, 2016, there is a 30 day comment period for the general public.

The FDA has known about this shock device for years. The FDA had previously warned the Judge Rotenberg Center in 2011 and 2012 that their ESD was out of compliance with FDA regulations as the device had been modified to allow increases in voltage. Originally, the ESD had been approved in 1994 at a set voltage. This Judge Rotenberg Center is the only known location in the United States that uses the device; the Center was previously known as the Behavioral Research Institute and has moved over the years from California to Rhode Island to its present location in Massachusetts.

Additionally, even the UN has advocated the ESD be banned. Back in 2013, the UN’s special rapporteur on torture, Juan Mendez, called out the Judge Rotenberg Center for using this electrical stimulation device on those with autism and said the device amounted to torture. Mr. Mendez advocated at that time that action be taken at the federal level.


Office of the Federal Register:   AND

Autism, Pitt-Hopkins Syndrome and New Research Breakthrough

Pitt-Hopkins Syndrome, which is present at birth or develops in early childhood, is caused by mutations in the TCF4 gene located on chromosome 18q21.2. There are reportedly only 500 cases of the syndrome in the world though it is thought the syndrome may be underdiagnosed. One of the major reasons for this likely underdiagnosis is the syndrome has many characteristics that are also associated with autism spectrum disorders; although there are other distinctive features of the syndrome as well.

Like autism spectrum disorders, many of those with Pitt-Hopkins Syndrome have delayed development of mental and motor skills. People with the syndrome typically do not develop speech or learn only a few words. Delays often occur in learning to walk. Additionally, their demeanor is “typically … happy, excitable…with frequent smiling, laughter and hand-flapping movements.” Those with the syndrome commonly experience “anxiety and behavioral problems;” and they may also experience recurrent seizures.

Some unique features of Pitt-Hopkins Syndrome are breathing problems and certain facial and ear characteristics. The breathing problems can fluctuate between hyperventilation and slowed breathing or even apnea and may be triggered by “fatigue, anxiety or excitement.” The distinctive facial features are “thin eyebrows, sunken eyes, a prominent nose with a high nasal bridge, a pronounced double curve of the upper lip called Cupid’s bow, wide mouth with full lips and widely spaced teeth.”  Additionally, the ears may be “thick and cup-shaped.”

A recent gene research breakthrough that may lead to a treatment for Pitt-Hopkins Syndrome was discovered by scientists at the Johns Hopkins University-affiliated independent laboratory, the Lieber Institute for Brain Development.  The researchers studied the brains of rats affected by Pitt-Hopkins Syndrome and found “alternative channels in the brain interrupting normal cell activity.” The gene research showed these interruptions caused inappropriate responses to stimuli in the environment. Further, the researchers discovered a drug being “investigated for use on chronic pain” that blocked these alternative channels resulting in cells behaving normally. However, at this point, researchers are not sure what restoring normal cell activity would do to those with the syndrome but are hopeful that some of the deficits could be eliminated.

Sources: of March 11, 2016.; “Pitt-Hopkins Syndrome;” Last reviewed February 2015.