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Thursday, 15 August 2019

Wandering, Water, Sense of Danger and Accidents


We were recently at the seaside in Greece, where Monty was enjoying swimming in the sea. He is now a very competent swimmer and behaves in the water just like any other confident swimmer. Together with Mum he actually rescued a Russian swimmer in distress.  Monty does not get crazy ideas to swim to islands in the distance, or anything like that. Not so far, at least. 

Water is behind a shocking number of wanderings and deaths.

In the North American media, you can see that on a very regular basis children with autism and/or ID/MR (Intellectual Disability/Mental Retardation) wander off and get lost. Very often they are found in or beside water.

In Europe you hear much less frequently about children wandering. A high-profile case recently was an Irish teenage girl with MR/ID who disappeared while on holiday at a tiny jungle resort in Malaysia.  She left behind an open ground floor window and was found 10 days later beside a stream in a ravine a mile away. 

She had holoprosencephaly, which is an umbrella term for conditions relating to when the forebrain of the embryo fails to develop into two separate hemispheres, it includes Agenesis of the Corpus Callosum (ACC) when the part of the brain that is supposed to connect the two hemispheres fails to develop. Partial ACC and the exact opposite are features appearing in some severe autism.

People with MR/ID have no sense of danger and are usually enchanted by water. Wandering is far more likely than abduction.

Another case recently was an American teenager on a cruise arranged by his residential care home, it appears that he jumped over the deck railing at night to go for a swim in the ocean.

Even a bath tub can be dangerous, a young man with autism and epilepsy was left unattended in a bath at a UK care facility. He had a seizure and drowned.

I do think much more could be done to prevent wandering and water-related accidents. Firstly, people (parents) should be made more aware of who is at risk; anyone with a low IQ and unable to travel independently is at risk.

People with ID/MR often live in a world of cartoons, where all kinds of crazy things are possible, like jumping off a cruise ship and nobody ever gets hurt.  Going to a jungle retreat, like you are living in the Jungle Book cartoon, why wouldn’t you sneak downstairs in the night and enter your private jungle world?

Just because you have never been able to wander before does not mean you never will. 

The shortened life expectancy of people with severe autism is in large part down to preventable accidents, seizures and poor basic healthcare.

I do think that treating MR/ID would be much more socially acceptable than treating autism. Understanding the danger of crossing a road, or falling into a lake is more important than being able to tie your shoe laces.  If you can improve cognition with a pill, who could possibly object to that? 

It is no surprise that we have www.Treatable-ID.org but no www.Treatable-ASD.org 

In reality you will struggle to have treating ID taken seriously, although for many people it is possible.




12 comments:

  1. This summer my family all met to visit with other family in a city on Lake Michigan (United States). The weather was much colder than usual but we decided to go to the beach anyways one day so the other kids could play in the sand. My oldest son with the most severe autism was afraid of the cold water at first when he decided to put his toes in (maybe 40 degrees Fahrenheit or less), but then surprisingly charged out into the lake which was cold enough to make me shiver which meant it was very cold because I am very well adapted to the cold and don't even need a coat in the winter.

    I did not want him out there for long because of the possibility of hypothermia, but he was unrelenting nevertheless. Eventually, once I noticed my arms turning purple I decided to forcefully pull and push him to shore which of course he fought me every step of the way. Making the decision to try and get your son to voluntarily not do something dangerous versus him having a meltdown in public and the possibility of some bystander calling law-enforcement without any context is a hard decision to make as a parent and not putting yourself in those situations is ideal. However, not letting your child go out in public or ever crossing the street is conceding the inevitable when they become an adult so preventing these kind of situations can be very hard to do, especially since behaviors can be great for a few months and then something unpredictable happens.

    Fortunately, due to the uncharacteristically cold weather there were only a handful of people parasailing in wetsuits so I did not have to worry about someone calling the authorities because of having to forcefully move my son to shore and eventually to the car. He is only 10 years old, but 150+ pounds. I am 245 pounds and muscular and let me tell you this task was not easy and a bit scary because physically moving a child at that age who wants to stay put is hard to do without injuring yourself or the child. He usually listens to me about coming in from the water, but this time he ignored me.

    Now prior to our trip, we had been looking for swimming lessons for autistic kids for a long time and several programs either had long-wait lists or they canceled them at the last second for various reasons. We finally found a company that does group and private lessons at pools around the country (mostly gym pools they rent lanes out) and ended up scheduling him for private lessons with some financial help from family.

    Now my son is doing very well after only a month of half hour lessons once a week. He realizes that swimming lessons are not just playtime in the water so he really wants to learn and work hard and as a result he is making far more progress than I every anticipated. Of course, when it comes to swimming lessons it is a pretty binary situation in that a child can either swim or else they cannot so even though he has made great progress, we will see if he ever gets to a point where he is apt enough that "dying from drowning" will be just one more thing to cross of the autism parent fear list.

    In the meantime, it is very strange that of all the therapies state governments will approve for people with autism, they don't include the cost of swimming lessons which would likely cut down the accidental death from drowning statistics quite a bit.

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  2. Peter,
    I am writing so that everyone knows of this possibility. There is a trial open at the University of Samara, Russia, for cord blood in asd and cp. They have a lot of experience with russian children, this is the first international trial. We have today arrived here to do the therapy which means 2 cord blood IVs in 6 months. The way to apply is to write an email with the subject line PRIMARY_CT_REQUEST_AU and basic data - age weight atec score diagnosis type - at ct@cordbank.ru. those on facebook can friend svetlana serigny and be invited to the group of people taking part in the study. 70 more places left in the high hla match group, with price set at 12.000 eur per infusion.

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    1. I think you can also find experimental treatment using Mesenchymal Stem Cells for CP and Autism in the Czech Republic and Poland.

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  3. Yes, but all research points towards the immunological factors in cord blood being superior for autism and cp. I talked for several hours with the medical director of PBKM, the bank which supplies all the Msc for those clinics. He agrees they are quite different things. They have legal issues (catholic country, every application has to go through an ethical committee containing a priest) so cord blood is out of their limits. They have in their experience seen some cases with very heightened aggression after msc but not after cord blood. I think they are organizing a trial in Poland for polish kids with their own stored cord blood this year.

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  4. Here is some interesting research on stuttering which explores an avenue that may be relevant to autism:

    Press Release:

    https://www.sciencedaily.com/releases/2019/08/190819110010.htm

    Paper:

    https://www.pnas.org/content/early/2019/08/09/1901480116

    This paper linked a particular gene which when dysfunctional in astrocytes, but not other types of brain cells, would cause stuttering in the vocalizations of mice with this mutation.

    The locus of dysfunction seemed to specifically be dysfunctional astrocytes in the corpus callosum, which is interesting with respect to autism in that apraxia of speech is a hallmark of lower-functioning autism (i.e. classic DSM IV autism), even though only the very vague "qualitative impairments in communication" was used as one of the three pillars of an autism diagnosis. For example, my son understands what we say far better than what he can express. Since motor planning requires both sides of the brain to communication with each other, if not for any other reason than transcallosal inhibition, I found this study interesting in that there has been a lot of attention in autism research to neurons and their synapses, microglia, and oligodendrocytes, but boring old astrocytes have not been given as much attention (at least that is my feeling based upon the many autism neuroscience papers I have read).

    Astrocytes in the last couple years of neuroscience research have now been shown to do many very interesting things with regards to directly impacting neural computation as opposed to their classic reputation as dumb utility support cells for neurons. Nevertheless, one of the astrocytes' most well-recognized roles is delivering extra oxygen to neurons and that got me thinking about one of Peter's old blog posts about EPO and other blood-doping drugs that are supposed to increase the amount of oxygen in the blood.

    So if you could determine in autism that there is significant astrocyte cell loss in the corpus callosum, just as you may have with stuttering, if there is no good way to revitalize the astrocyte count in the corpus callosum, perhaps increasing the transient oxygen in the blood stream with blood-doping agents like EPO make up for some of the shortcomings of not having enough astrocytes around to keep neurons properly oxygenated.

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    1. Stuttering is indeed interesting but complex. Some left-handed people who were forced during childhood to behave as right-handed then develop a stutter, which I think is interesting but not surprising.

      Children who stutter have altered autonomic nervous activity.
      https://www.ncbi.nlm.nih.gov/pubmed/25087166

      Improving blood flow and the number of red blood cells as used to cheat in sport has clear application to many brain disorders, particularly dementia but also autism.

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    2. As a left-hander myself, I never heard about people forced to be right-handed having a higher rate of stuttering. The other link about stuttering and higher autonomic nervous activity I will definitely read. In papers I have read on callosal disorders, it is thought at least with speech part of the problem is that the right inferior frontal gyrus becomes dominant due to a lack of connectivity with the left inferior frontal gyrus which needs to actively suppress parts of the right side via callosal fibers.

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    3. Coincidentally, the last author on the paper you linked (assumed to be the Principal Investigator) is a scientist named Stephen Porges who also happens to have an opinion piece in Spectrum today:

      https://www.spectrumnews.org/opinion/viewpoint/brain-body-connection-may-ease-autistic-peoples-social-problems/

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    4. Porges is smart, I put him on my "Dean's List" of the most worthwhile researchers a long time ago. He likes the vagus nerve and links it to observation's like in order to pay full attention to someone speaking, you have to see their face.

      You can modify autonomic nervous activity by vagus nerve stimulation and with low dose Propranolol. Our reader Nancy tried both for her son's raging, she reported a short term benefit from tVNS via the ear, but a sustained benefit from very low dose Propranolol.

      I wonder how many people who stutter would respond to 5-10mg of Propranolol 3x a day.

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  5. I used to wander,Peter.In my case wandering was related to blackouts.It was very frightening,I would black out,and start wandering,and then come around at a later time,and have no idea how I got where I was,almost like a sleepwalker.The big danger for me was being hit by cars,this either happened,or I was pulled out of the way of oncoming traffic more than once.It was many years later,when I learned wandering like I had,fit the pattern for complex partial seizures.The incidents began as a toddler,about age two or three,and lasted well into my twenties.
    It was many years later,that I leaned my episodes of wandering fit the pattern of complex partial seizures.

    My seizures went away for many years,and then came back,in a slightly different,and more pronounced form,about six years ago.No more wandering,but I still have prolonged blackouts.They are not controlled by antiepileptics.I suspect,like my autism,and everything else they are autoimmune related.

    I do not believe seizures are investigated enough as a case of wandering in autism,especially given how common seizures and epilepsy are in autism.

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    1. Wow that is an amazing story Roger. Just shows us all how far you have come and the difference loving and ATTENTIVE family members can make in this world. The mass majority of children in the United States are now raised by single mothers either from birth or through divorce now. Kids with extreme special needs at some point can just become too much for one parent to handle once they hit puberty and sadly at that point a large number of these single mothers have to give up their parental rights to the state. It is a crisis that keeps getting worse and not really discussed for politically correct reasons and in the end innocent children who would otherwise be a beacon of inspiration and hope like you are Roger, suffer from not getting the attention they need due to the fact that single parents with special needs children are more often than not going to be in over their head no matter how hard they try to be the best parent they can be.

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    2. Roger, I think people in the US are now relying on small GPS tracking devices to deal with wandering. I think nobody is really researching it seriously.

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