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.

Conclusion

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 Smarter-Reviews.com, 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.

AUTISM CAUSES AND TREATMENT INVESTIGATION

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.

CAN CERTAIN TREATMENTS HELP?

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).

WHAT YOU NEED TO HAVE DONE

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.

CONCLUSION

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: 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.

Earplugs

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.

Conclusion:

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: 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:

2016: http://www.kansascity.com/news/local/article53608685.html

2015: http://www.wrightslaw.com/info/abuse.index.htm

2013: http://abcnews.go.com/Blotter/law-targets-padded-rooms-autistic-kids/story?id=18892197

Canada:  http://www.cbc.ca/news/health/seclusion-rooms-1.3264834

New Zealand:  http://www.stuff.co.nz/national/education/86214068/Sensory-deprivation-rooms-can-be-a-lifesaver-say-parents-of-autistic-children

United Kingdom:  http://www.specialneedsjungle.com/seclusion-rooms-every-parent-professional-know/

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 (uphe.org)

American Lung Association (lung.org)

RodaleWellness.com

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.

Sources:  http://awakelabs.com/

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.

Sources: FDA.gov http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm497194.htm

Office of the Federal Register: https://www.federalregister.gov/articles/2016/04/25/2016-09433/banned-devices-electrical-stimulation-devices-used-to-treat-self-injurious-or-aggressive-behavior

Forbes.com http://www.forbes.com/sites/emilywillingham/2016/04/22/fda-seeks-to-ban-electric-shock-devices/#4856b7237ead   AND

http://www.forbes.com/sites/emilywillingham/2013/03/08/autism-shock-therapy-is-torture-says-un-official/#75fe3e4b4fc2

Project Lifesaver, Autism and Wandering

You may have read of recent news reports of autistic children who wandered off from home and were later found dead, often from drowning. To help with the wandering problem, Project Lifesaver was developed to help those with autism, Down Syndrome, Alzheimer’s disease and other cognitive disorders who have wandered off to be brought home in a timely manner.

The company behind Project Lifesaver is Project Lifesaver International (PLI) which is a 501c3 non-profit organization. There are three components to their program:  Teaching search and rescue techniques;  applying “appropriate tracking technology;” and providing a basic understanding of autism, dementia and other cognitive disorders while certifying first responders in techniques to “assess and effectively manage the safe and comfortable return” of the individual with a brain disorder who wanders.

PLI has developed three possible options on how their program can be used.  Option 1 is the original Project Lifesaver International program where an agency makes the purchase and maintenance of all tracking equipment and transmitters. The agency making the purchase will maintain all of the information regarding the “at risk” individual and their family or caregiver (hereafter referred to as “client”) in the PLI database and are solely responsible for all of the financial transactions to PLI.

Option 2 is similar to option 1 in that an agency purchases the tracking equipment and gets training from Project Lifesaver International.  However, the client will purchase the transmitters and pay the monthly maintenance fee directly to PLI.  The agency maintains all of the client information instead of PLI and PLI only receives the information necessary in order to supply the necessary equipment to the client.

With Option 3, a client enrolls with Project Lifesaver directly, purchases the transmitters and does the monthly maintenance. The agency involvement is limited to PLI sharing with the agency the information needed on the “at risk” individual in the event of a search.

Source:  http://www.Projectlifesaver.org

Robot Helps Children with Autism Learn Social Skills

Milo, is a two foot-tall humanoid robot that uses facial expressions and children’s voices to demonstrate appropriate social behavior in order to help kids with autism learn social skills. The robot was developed by Robokind and the children’s voices were developed by Acapela Group to help autistic kids engage with the robot in order to teach them the meaning of emotions and facial expressions.

Milo uses the Robots4Autism’s research-based curriculum to teach elementary and middle school-aged kids about acting appropriately in social situations and demonstrating empathy while encouraging more self-motivation in the kids. “Recent research has shown that children working with a therapist and Milo are engaged 70-80% of the time compared to just 3-10% of the time without the robot.”

Robots4Autism’s curriculum for kids with autism is available in Android and iOS. Some of the benefits of the curriculum are noted to be “observable increases in eye contact, body language and friendliness, intrinsically motivates children to learn and documents and records sessions for later inclusion and review in IEPs.” You can find out more about Milo and the Robots4Autism curriculum at the robokindrobots’ website.

Sources: http://www.robokindrobots.com/robots4autism-home/

http://autism.einnews.com/article/301938397/dmzHv36mfCmo2GXc