Some time back I heard from a parent about her adult daughter with Autism. This young woman with Autism does not have functional verbal language and really struggles horrendously with social involvement and physical closeness and was prone to very aggressive daily violent outbursts. She is an extremely solitary and vigilant person, unable to switch off her self protective buttons and showing some signs that would point in the direction of ‘social phobia’. Let’s call her Janet for the sake of this story.
Janet had improved a lot since the family and Janet’s workers because aware of Exposure Anxiety and how to be socially more ‘cat’ like, less ‘dog’ like around her, not watching, waiting, wanting, eager to save, fix, solve… to give her the autonomy her vigilant nature needed, the solitude her solitary nature needed. She was still not sociable and snuggly but she stopped having daily aggressive rages, as though she felt the environment was now less invasive and socially threatening and could relax.
Janet developed a dry cough, which could possibly even have been a Tourette’s tic brought on by excitement, overstimulation, agitation, distress as compulsive coughing and compulsive throat clearing are two of the most common involuntary tics and very often confused for someone having a real cough. Anyway, she was put onto a cough mixture. The cough cleared up (and had it been a Tourette’s tic the relaxation effect of the cough mixture may well have reduced anxiety to a degree as to have such an effect even if the cough was only a tic). Anyway, not only did the cough clear up but Janet became remarkably different. She became sociable and snuggly with those around her, able to sit and enjoy TV with others, to enjoy physical and social contact. Clearly, this makes this story very interesting from an Autism perspective. After two weeks on the cough mixture it was questioned whether the cough mixture itself could have done this. I looked up the active ingredients of the cough mixture and was stunned. On examination of the cough mixture it was found its active ingredients were dextromethorphan- DXM- what equates to ‘Ectasy’. DXM is the same ingredient in the Clubber’s drug that increases sociability and is widely used in night clubs but also long term is believed to cause some real brain problems.
DXM can cause dizziness and drowsiness, which could concieveably help someone acutely vigilant and solitary to relax but DXM has effects far beyond this. On the internet ( http://www.dextroverse.org/whatis.html ) I found this description of its effects… please note this info is from a site created by recreational users of DXM and not doctors, but given that it discloses insights into the first hand experience of the effects of this drug I felt it was useful just to hear what people experience when taking it:
DXM is short for Dextromethorphan. In small amounts its a very effective cough suppressant, but in large amounts it is a very powerful dissociative drug. This can be found in many over-the-counter cough medicines, and the psychedelic effects begin somewhere over 120mg, but becomes toxic around 20-30 mg/kg. This drug has been used for recreational purposes for around 30 years. When taken recreationally the “trip” usually lasts around 5-6 hours. Thats including the come-up, peak and come-down.
Also, most people who take it expirence an “afterglow” the next day which is the slight after-effects of the drug. The feeling of an afterglow is hard to explain, because you can usually definately tell its there, and yet you can usually do everything normally, and its hardly noticable. The afterglow isnt usually very strong but can vary on the person’s metabolism, and their dosage and weight. Some users say it can become physically addictive after prolonged daily/semi-daily use.
The type of DXM in Janet’s cough mixture was Dextromethorphan Hydrobromide
here’s what the internet article had to say about it….
Dextromethorphan Hydrobromide: This is what you get when you react DXM with hydrobromic acid. This is what is most commonly used for cough suppressants and for recreational use. This produces different effects on different doses. We refer to them as plateaus, and there are 4 of them.
PLATEAUS
DXM has notably different effects at different dosage levels. There are 4 distinctive levels, and we call these levels “plateaus”. Most recreational use happens during the first and second plateau. Doses are measured in mg/kg or milligrams per kilogram. So to find your dosage take your weight in kg (pounds divided by 2.2), and then divide it by how many total milligrams your taking.
• 1st Plateau: 1.5-2.5 mg/kg This is the weakest level. This feels slightly intoxicating, a little light headed. Some music euphoria is noticable
• 2nd Plateau: 2.5-7.5 mg/kg This level is often compared to being stoned and drunk at the sametime. When this might seem true, there is also a noticably strong “mental” high also. You can have trouble talking with slurring, and can have a hard time carrying on an indepth conversation, because your short-term memory can be temporarily impared. And occasionally you can have mild hallucinations.
• 3rd Plateau: 7.5-15 mg/kg This level has strong intoxications and hallucinations. Things can become very confusing as your thinking processes are disturbed. You can sometimes daze-off into your own world, and get lost in your own mind. Trips in this plateau can sometimes be unpleasant.
• 4th Plateau: +15 mg/kg This is the strongest level. This is a sub-anesthetic dose, and can be compared to a high dose of Ketamine. Your mind and body become seperated at this level and it can become dangerous psychologically, and physically. Personally I say that you should never have to go this high, it can be very dangerous. But whatever you do, NEVER go past 20 mg/kg (about 2000mg for a 220lb person), this can become very toxic and kill you.
Let me make it clear I do not support the use of DXM in helping people with Autism. I do, however, as a person who experiences the discomfort of chemistry imbalances, support knowledge and research into any intervention that can make the lives of people like Janet more comfortable and if DXM ends up one day being found to be one of those things then so be it, but this will be found to be so through research and testing so such things are considered as safe as they can be. I informed the family they had to get this situation monitored by the GP immediately. Sure, Janet had quite innocently been put on this medication and had some extremely interesting effects with this cough mixture but the down side is that how does Janet now come off it and what are the long term, possibly damaging effects to Janet if she doesn’t.
This family may have accidentally stumbled upon something which may be very interesting to medical experts in the Autism field but equally something which could be applied to the wrong person with Autism. Sure, Janet was extremely vigilant and solitary to the point social phobia and trust were huge issues for her and her aggression fired at the slightest thing, but not all people with Autism are like this.
Many are Salicylate intolerant and the other ingredients in the cough mixture may well be high in Salicylates or Phenols and set off severe behavioural challenges in someone different.
Many are rather bipolar and tend toward hypomania if not full blown manic states and adding the effects of something like DXM to this could be potentially very dangerous.
Many are withdrawn and depressive but not socially phobic and aggressive and these people might have reacted in a very different way again. So what essential in exploring this case of the effects of DXM on Janet is to remember Janet’s personality framework is underpinned by Janet’s own biochemistry patterns and will not be shared by all people with Autism. Nevertheless, Janet’s personality framework is shared by a certain subgroup who, like her, are vigilant and solitary to such an extreme degree as to result in aggression, social phobia and render the person socially dysfunctional. Many of these people are then overly controlled or kept on heavy sedation for decades with horrendous long term health effects on progressive damage to internal organs such as the liver. If there is anything the field can learn here then sending out this email may help medically qualified people to begin to research the use of DXM in those with Janet’s type of issues to find out if something tested, safe and effective can help those like her enjoy a social and inclusive life without risk the themselves or others.
… Donna Williams *)
www.donnawilliams.net
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Donna Williams
http://www.donnawilliams.net/
http://nobodynowhere.com/
http://auties.org