Thursday, 6 February 2020

Monty in Mardin – on the Silk Road with Autism

Mardin is a city in Southeastern Turkey on the overland Silk Road (in red)

Today’s post does not have any science.

Just after the new year Monty went to southeast Turkey to visit Mardin, an old city that was on the Silk Road linking Asia to Europe and then to see more of Istanbul.

Travel can be difficult for people with autism, even fully verbal people with above average IQ.  Some people with Asperger’s refuse to fly because they fear the plane is going to crash.  Exaggerations and distortions of normal perception are actually examples of psychotic behavior, in the extreme these are the "positive" symptoms of schizophrenia.  This loss of touch with reality does feature to varying degrees in some Aspies.

Monty started to fly while still a baby and, in spite of a few glitches along the way, has become quite a seasoned traveller for a 16 year old.  

The latest trip was a little off the beaten track for western tourists, in fact we did not see any other western tourists, just a few people visiting from Istanbul.

Mardin is an old town built up the side of a small mountain giving panoramic views across Mesopotamia.  All the old merchant’s houses have large terraces facing the same direction, so they could see incoming traffic from the Silk Road.


            A merchant’s house in Mardin

The Front Door of the Deyrilzafaran Monastery

Midyat, a three-thousand-year-old city

Passing for Normal

The Holy Grail for treating someone born with severe autism is just passing for normal.

Passing for normal may not be politically correct, but it is practically correct in actual daily life.

Two recent events stand out in my mind. Walking around the narrow streets of Mardin we entered one of the most impressive old houses.  In the courtyard was a security office; it was clearly was some kind of official building. On the large upper terrace, with the stunning view over Mesopotamia, was a well-dressed man and we started a conversation in English.  He beckoned us to come up past the security guard and see the old house.  It is now used as a school for tourism and hotel/catering.  He offered us Turkish tea and was telling us all about the history of the building and the city.

At first, he thought Monty was a local boy acting as our guide, then later on he turned to Monty and said “what are you going to study later at University?”.  Instead of me having to explain that Monty has autism and so probably will not be going to University, Monty just answered “science”.   Bravo Monty.

The other recent event was the school’s poetry night, when they combine music recitals with poetry readings.  Monty went up on stage for his piano recital, bowed at the end and, as the school principal pointed out to me later, what you saw was just another quiet teenager with some musical talent, not the token one with a disability.  She has known him for 13 years and did not expect him to cope in high school, even with his assistant. Bravo again, Monty.

Unlike how autism is now portrayed in media, people with autism often do look very different and act very differently to other people.  The looking different part could be used to identify the underlying biological cause, but usually is not.  The acting different part is often the result of behaviors learned from their autistic peers and then reinforced by them.  This is a big disadvantage of special schools and group homes, “odd” behaviors get copied until everyone has them.

In a somewhat bizarre twist of nature, sometimes the unusual facial features show up instead on the sibling of the child with autism.  This was recently highlighted again in the research.

Back to Istanbul

Istanbul is one of the world’s great cities, with an amazing location on the Bosporus which connects the Black Sea to the Mediterranean.  It is full of interesting things to see and is great value.  The overland Silk Road ended in Constantinople, now called Istanbul; goods then moved west by sea to Venice.

Istanbul is a good place for people, like Monty, who like to eat fish and also all kinds of cakes and desserts.  Monty even acquired a taste for drinking Turkish tea in small glasses. There are some good, very child-friendly, museums, with parent-friendly admission prices.

Seagulls with the Dolmabahçe Palace on the European side of the Bosphorus in the background

The Rumeli Fortress in Europe and the third Bosphorus Bridge, leading to Asia

Life before the PolyPill

The summer before Monty started his autism Polypill in 2012, we went to Portugal. I still clearly remember having to pin him down in his seat with my arms and legs, as he went berserk in the plane. We had rented a car, but we could not leave Monty in the back with his older brother, because he would attack him.  That was travel with a 9-year-old with medically untreated severe autism.

Expect the unexpected

As our reader Tanya, recently commented, life with autism is always full of surprises, to be overcome.  It is perhaps an adventure you would rather not be on, like a trip with Bear Grylls.  

We still encounter some travel issues, but they are now trivial.  Monty’s ears do not pop when the plane lands and then they hurt and this affects behavior.  The first solution was his idea, jump deep down into a swimming pool.  Ears pop and the problem is solved.

Recently this developed into not swallowing after the plane has landed.  Mouth fills up with saliva, so you cannot talk and also your face bulges and the automatic face recognition at passport control does not work.

I did earlier have Monty’s ears checked and the ENT doctor found nothing, but suggested using the Dymista allergy nose spray containing Azelastine and the steroid Fluticasone. We already have this and it does not help ears pop.

The solution I came up with is to bring a sports-type water bottle on the plane, the type you have to suck to get the water.  During the last 10 minutes of the flight, suck the water, swallow, then squeeze your nose tightly and try to swallow several times.  It works, one problem solved and now we await the next one.

Autism flare-ups, sudden onset vocal or motor tics have all come, been figured out and then been overcome.

Autism and vacations in the literature

Researchers even publish papers about holidays/vacations taken by people with autism.  In short, autism families rarely have holidays and when they do it can be quite stressful for everyone.

The key to happy holidays is medically treating severe autism. 

This work aims at identifying the types of holiday experienced by families of children with autism spectrum disorder (ASD). 35 families of ASD children and 25 control families of children with Down’s Syndrome (DS) living in Scotland took part in a small scale semi-qualitative study to explore their experiences on holiday. In both groups, a significant proportion of the families had not taken any holiday away from home more than once in the last 3 years and there was limited use of children holiday centers. Families of ASD children who had been on holiday expressed overall less positive impressions of their experiences and showed limited use of public places such as restaurants, cafes, cinemas and hotels normally accessed by typical families whilst on vacation. Five areas were identified as influencing the quality of their experiences: 1-child’s disability, particularly with regard to behavior, 2-lack of suitable holiday structures, 3-financial limitation of the family, 4-lack of empathy from surrounding communities towards the disabled child and his or her family, 5- general state of exhaustion of the parents. The paper further describes two pilot holiday community experiences organised with 10 families with ASD children in an attempt to address some of the issues hereby identified. A retrospective analysis of these experiences and surveys suggests that amongst all five identified barriers, the issue of the child’s behavior is the most significant difficulty encountered by these families. Supporting families in understanding and improving their child’s’ behavior is needed to enable families to maximise their experience on holiday. Increasing the understanding of the condition, improving access to leisure activities and some financial aid would equally be beneficial


There is an evolving tourism literature around psychological wellbeing, social exclusion and disability. This paper advances tourism knowledge into the terrain of psychological health and developmental complexities, and psychological distress. It draws on a phenomenological position to understand the lived experiences of mothers of children with developmental difficulties, in this case diagnosed with autism spectrum disorder (ASD). It discusses the emotional and everyday challenges of caring for a child diagnosed with ASD on holiday, discusses the perceived benefits holidays offer and outlines care-giving strategies adopted by mothers to manage their children’s tourism experiences. The paper discusses the uniqueness of the context of autism and problematizes popular discourses, which predominantly frame tourism as pleasurable settings of escape, stimulation, novelty and relaxation.

Conclusion The mothers in this study navigated the emotional dimensions of their family holidays through a range of strategies. Firstly, they chose destinations and accommodation, which provided detailed information on all aspects of the holiday to prepare their child in advance. Secondly, they selected quiet destinations and accommodation and thirdly, they packed familiar possessions that are important to the child’s daily routine and ensured that the accommodation could provide for their child’s needs (e.g. Wi-Fi and television). Some mothers also carried an identification card or official document from health or psychology services for their child to deal with public censure if the child’s behaviour became too extreme or to confirm his entitlement to preferential attention, such as in theme park queues. Such strategies could be employed by other parents and, if we can appreciate the coping approaches of parents of children with a disability, these may ‘‘provide valuable insight for other families and parents” (Dodd et al., 2009, p.266). Tourism researchers have much to do to provide such insight and to adequately connect disability, psychological health, distress and the family. This paper has contributed to the unfolding work on this area and, in focusing on developmental difficulties and psychological distress, has widened the scope of an evolving tourism literature exploring wellbeing and psychological health. The area of psychological distress in general, and specifically in tourism, requires much more investigation since studies on disability too often assume that the ‘‘obstacles, barriers and constraints which face disabled people are identical across all people with a disability” (Blichfeldt & Nicolaisen, 2011, p.83). Our research has highlighted the unique context of autism and the challenges faced by mothers of children diagnosed with ASD, illuminating their complex care-giving responsibilities and the impact these have on family holiday experiences, including those of siblings. Whilst all the mothers we spoke with identified benefits to holiday-taking, they balance these against the disruption to routines and exposure to sensory-stimulating environments (Bellini, 2004), which make holidays a challenging experience for both them and their child or children. In addition, expectations to conform to certain behaviours and public reactions to their child’s behaviour can exacerbate the difficulties of holidaying and make them an isolating experience. In this, families with children diagnosed with ASD share common ground with other groups who experience stressful travel encounters in an unaccommodating world (Small & Harris, 2012). Embodiment, attitude, behaviours and stigma are common across disability groups and tourism’s gaze of discipline and surveillance, which causes such stress to many people with disabilities (Eichhorn et al., 2013) and to parents of young children in general, bears further scrutiny. This leads us to perhaps the most thought-provoking contribution of our study. It illustrates the ways in which tourism experiences are journeys of mixed emotions: far from the binary of pleasure and apprehension, they are indeed multifaceted, complex, interlinked and intersubjective (Williams & Aaker, 2002). We need to know more in this area. We also require further explorations of the multiple, complex and nuanced meanings of ‘the holiday’; especially ones that investigate what constitutes a holiday for individuals and families who fall outside of our world’s increasingly unforgiving expectations and norms. Conceptualisations of the holiday have focused on its benefits and on its opportunities for positive transformation and renewal (e.g. Reisinger, 2013). Holidays also entail considerable ‘work’, anxiety and emotional labour (Dieffendorff et al., 2005), especially for care-givers, and particularly as here, for mothers of children diagnosed with ASD. At each stage of the holiday and planning process, the women invested significant time, energy and emotional labour to facilitate trips for their families, in which they themselves experienced both stress and escapism. Indeed, different holiday practices (e.g. air transport, visiting resorts) evoke a series of different emotions and emotional labour depending on the life-world of our participants. With the consequences of emotional labour often resulting in psychological distress (Strazdins & Broom, 2004), we suggest more attention should be given to this area in future tourism research, alongside a more comprehensive account of gender and the lived experience of care-givers in the tourism context.


The target for people with autism should be to live independently.  You may not achieve this, but the closer you get, the better life will be.

Traveling is a good way to learn some of the important life skills you are going to need later.

You can strive to make accommodations for the disability of autism with special autism-friendly periods in shops, theatre, cinemas, etc. There can even be disabled parking privileges for parents, although most people with autism can walk just fine.

The other extreme is tough love, where you always push for being “normal” and fitting in, over acceptance of being different and then just excluding yourself.

What works best for you is determined by how severely disabled the person really is.  Only 15-20% of modern autism is severely disabling; those people really need a lot of help, and indeed personalized medicine.  The majority of those with autism in 2020 are starting from a point (level 1 and 2 in DSM5), not so far away from normal.

Away from the bubble of social media, the real world has changed little.  Strangers on the street did not get more tolerant; kids at school did not stop bullying the odd one out; best to be as "normal" as you can.

Whether you chose travel, sport, music or something else, better to broaden horizons and ambitions with actions, rather than tweet about all the problems.


  1. Not sure if my previous attempt to post went through. This is for Tyler.
    BCAAs and Niagen has been amazing for my son in reducing the frequency and intensity of rages and SIB.
    But I want to make sure I am doing all I can around what appears to be a seratonin/tryptophan issue (or at least one of them).
    My protocol is
    2 Niagen + BCAAs/collagen upon waking and again between 4 and 5 PM.
    5 HTP 100 mg at night and in the morning.

    No apigenin --what would the dosing and timing be for that? My son is about 175#
    Anything else I should add if i am trying to address this issue?
    His sleep remains terrible. He goes to sleep immediately but continues to wake between 1 -3 AM and stay up, lately turning into raging.
    He seems to be back to wired as if parts of his brain he can't turn off and then brain foggy at other times as if there are parts of his brain shut down. Wish there were other therapies out there beyond drugs. tVNS was utterly amazing for a short while then completely ineffective.
    Oh well--at least BCAAs have been just what we needed.
    Thanks in advance, Tyler.

    1. One other thing I think is very important for good sleep and that is for my son to get a good amount of exercise. At school it is likely your child just swings on a swing during recess rather than running around with other kids. What has worked for us is to go on hikes in the park (more practical in the summer). Winter of course is a challenge so you should demand in your child's IEP (if you are American) that your child get X amount of minutes per day getting serious physical fitness. In addition to that, the school demanded he be picked up by their bus at home and I instead demanded they pick him up at his former elementary school where his younger siblings go so that he gets a good half mile walk before and after school. On days we have to drive him because of not getting out the door on time to walk, he is more likely to have a bad day at school as well as chronic sleep problems. Exercise is very important, but of course also very challenging, especially if you have other children.

      It makes a huge difference if your child has gone on a 2-3 mile walk/hike.

  2. Hey Peter!

    Thanks for a great travel update about Monty. I have put Mardin on my travel list. I also drink water and hold my nose when landing!

    This whole article provokes a lot emotions for me: Before my diagnosis (at 53)... travel was very important to me, and I just dismissed any discomforts as "travel fatigue, etc." ... I often drove great distances and loved it. When I drove by myself, I found it soothing and fun... listening to music, watching the scenery. But when I got to my destination(s), I was often exhausted being with family or just interacting with people (hotels/tours/meals)..... I never thought much about my "difficulties".... I just got on with the trip.
    After marriage, I traveled quite a bit with my husband. It was he who noticed my "difficulties" --overly exhausted, irritable, unable to be spontaneous, me commenting a lot about missing my routine at home... He also began to recognize that if our trips lasted any longer than two weeks, then I was miserable (and made him and our daughter miserable). So he recommended all future trips be less than two weeks.... that's worked quite well.
    After my autism diagnosis, I began to take greater control when traveling with family. I get tired more easily--so I just head to my room for a nap. I found that private time in the hotel away from family made me calmer/more relaxed. My family is great, and having the diagnosis makes it clear that Mom is not just "acting up"----I really do need the breaks, slower pacing ... and I am totally OK with my family doing things without me on trips.

    One of thing things I love to do (my family not so much) is to just ride the "Red Bus" tours to get a sense of whatever city we are visiting. I love architecture, and I get to see so much when I am just sitting and absorbing. I don't have to talk... I can just look and enjoy. And I don't get so tired...

    A couple of unrelated things:

    --I've been taking a supplement that combines Taurine and Potassium Bromide (just these two):
    --I've taken it for about three months...

    I have finished a trial of Mutaflor (Escherichia coli Nissle 1917): I can't definitively say it helped my gut, but it did not cause problems. It is prohibitively expensive, so I am moving back to taking Miyarisan---it's much cheaper and I felt good on it.

    --I continue to take a combination of Verapamil + Amlodipine. This works very well for me as I couldn't take Verapamil by itself. So, I get the benefit(s) of taking Verapamil without the constipation side-effects.

    Thanks so much for writing this blog, Peter.


  3. Nice post about travelling,
    Great to hear you and the family had a good time exploring this less touristy side of Turkey!
    For us travelling has been also a necessity to be in touch with close family, at some point we had to take two 11 hours flights plus stop over to reach our final destination, luckily my son has learned over the years to adapt to all the rules of travelling, which has been a life savior for our family, even last summer when coming back home we had to spent one night in London, and our son was great at the 1 hour passport control line at Heathrow, he was more patient that a lot of people I saw on the line.....

    I have always like travelling, and there are so many places I would love to see, last summer when visiting my parents I rescued my lonely planet guide to Central Asia, that I bought to great difficulty in 1996 to "plan" my trip to Uzbekistan, a place I have always love to see.... I brought it back with me to remind me those dreams.... who knows maybe one day I will go with my asd son to Uzbekistan, but for that I am sure I will need to buy a more up to date travel guide....

    Thank you for your work Peter.


  4. Hi Peter . So started my 7 year old asd child on 10mg of atorvastatin. The results are really promising . He has been talking more , more awareness in his surrounding . Lot more involved . My question is if increased the statin 20mg would I get even better response or does to the drug not work that way and a lower dose is. Better. Interested in your thoughts thanks Paul

    1. Paul, there are multiple reasons Atorvastatin helps some people with autism. It is broadly anti-inflammatory, but it has some other very specific effects.

      Depending on whether your son has an issue with the genes Atorvastatin modulates (PTEN, BCL2 etc) his optimal dose may be higher than that for my son. So, it is great you have found an effective therapy, now you need to personalize the dosage to his unique case. If you use a higher dose you may want to supplement him with Coenzyme Q10. The negative effect that statins cause in some people often relate to a reduction in Coenzyme Q10. Many people with high cholesterol take a statin plus Coenzyme Q10.

      You can measure CoQ10 via a blood test. Low CoQ10 causes muscle pains as a common symptom; this is why some older people stop taking their statin.

      I no longer supplement Coenzyme Q10, because there have never been any side effects. I also take Atorvastatin, with no side effects.

      I did try a higher dose of Atorvastatin in my son, a long time ago and it gave no additional benefit. But your son may be different and the beneficial effect may increase.

    2. Paul, the other thing you could later do is to try 2 other very similar drugs with slightly different effects and then use the most effective one. The other two drugs are Lovastatin and Simvastatin.

      For example in Fragile-X, Lovastatin is much better than Simvastatin. All three drugs are lipophylic statins plus their special other effects.

  5. Peter, I have been thinking about a ‘sum it up’ post which could be really useful for readers: a list of genetic tests they would find useful i. the sense that there is a therapy attached to the results. Example: atorvastatin and the genes connected to it, Mtor etc. its quite a big sea with a lot of ability to drown and a raft would be welcome :-).

    1. There will eventually be a book.

      Everyone finds the science overwhelming, because to treat autism you need to understand all of human biology, meaning you could then treat cancer, dementia and most other conditions. A sum up post would be a book.

  6. I only meant the ‘genes which are connected to an existing therapy in autism’ sum up post, so people can test for those and not get caught up in the many many genetic tests, but I can imagine you getting at times overwhelmed when thinking of all the things someone needs to understand in order to understand, well, this blog. My knowledge is probably at 15% of yours and I get so sad when somebody asks me the ‘so what should people do’ question, because its hard to even think of a place to start. I came up with the idea of a ‘genes’ bulletin point post because I am currently looking to expand our Polypill which is Ibuprofen (teeth), Aerius (just useful on all levels), Neuroprotek (same) Propranolol (vocal tics), Abx and antifungal and antiviral (Pandas), Bumetanide, Potassium chloride, Magnesium, B6 and L-Lysine. She is supposed to start school in 8 months and if we don’t get rid of the demand avoidance and unimaginable selfesteem problems by then, it will simply be useless. So I was thinking along the lines of low dose Prozac, Verapamil, Atorvastatin... then i realized genetics would probably help decide. This is all additionally complicated by the fact that we are dealing with a 20kg body, only 7 years, so we have to be careful when adding and dosing, and this body is affected by Pandas and will have to do IVIG and tonsillectomy this next few weeks.

    1. For genes I would do a sequencing of all of them. Then I would look for the best autism panels out there (I think there are readers here that could mention one). For any hit, I would perhaps start with checking the gene at Then I would simply google the gene with words like "rescue" or "inhibit" to see if there already are possible therapies.

      The other rout is to give a detailed description of the condition and simply ask people for a hint on which area to search. I kind of get the impression your girl is depressed. 5-HT, Bacopa and Fisetin could be alternatives before heading to Prozac. If IVIG and tonsillectomy have favorable results, look at the NLRP3 inflammasome or use statin/exogenous ketones.
      I hope any of these advice helps.


    2. There are thousands of genes relevant to autism. You have to include all the risk genes for Schizophrenia, Bipolar, AD(H)D, even though you do not have that diagnosis.

      The site I use to check the relevance of genes and for ideas how to modulate them is:

      Sometimes cheap genetic testing reveals all you need to know, like the reader with ADD who used 23 and me to identify 3 mutations (NRG1/ANK3/CACNA1C).

      Look them up at

      These are all autism/schizophrenia genes and there are clearly implied therapies. One is in my Polypill. It takes 1 minute per gene to check them (once you have some experience).

      Another reader sent me six pages of results from whole exome sequencing and none of the genes looked relevant.

      Autism is always genetic, meaning genes are miss-expressed. Sometimes it is simply a single big/critical error in the exome, that any lab can detect. It might be a microdeletion the lab missed. It might be errors in the 98% of DNA they do not check. It might be unhelpful inherited "tags" on the epigenome.

      Environmental factors that affect autism do so via affecting gene expression.

  7. Hi Ling, she is honestly a really happy child. I think the ‘depressed’ part is possibly true technically, as 1. asd people tend to have less serotonin in their brains and 2. this could lead to her anxiety symptoms. Our initial idea behind Prozac was because we realized that what helps most with her demand avoidance is excitement, and not in an immediate way, say she is excited about the task, but rather lets say she was on a rollercoaster yesterday. today demand avoidance would be lower. Also, Peter, really interesting article here:

    1. At the moment, it is Aspies who experiment with such products. I hope they spread the word to the other Aspies, who just feel miserable and think that is how life has to be.

      Fifty years ago at UCLA they used them in severe autism.

  8. My husband has delved deep into the topic of psylobicin, dma and mdma (the topic, not the use of the substances :-)) and he seems to think they are quite promising regarding social connection. I found it interesting to see ties to the very same immune abnormalities found in autism. The described proinflammatory cytokines in the paper are the ones elevated in my daughter. I have recently realized that I am one of those late diagnosed Aspergers women and its made me quite upset, but had also lead to a clearer picture. Not interested in therapy right now because I find I can’t distinguish between the symptoms and my identity. One more reason why this needs to be dealth with in childhood, and a reason to have more understanding for the ‘lets not cure autism’ crew of HF adults who are scared someone will try and take away what they are. To be honest when listing personality traits after I realized what I have, I was left with only 1 that is not a coping mechanism: I like cats. Normal people around me console me that everybodies personality is essentially one big coping mechanism, but I don’t know...

    1. Tpes, since doctors cannot even persuade many people to take their cholesterol-lowering drugs, I don't think a tiny minority of Aspies need to be worried someone is going to force-feed them "anti-autism pills".

      They are exhibiting/enjoying paranoia and delusions more fitting of a schizophrenia diagnosis. Fortunately 99% of the world does not care; if it is a disability you seek treatment, if it is a trivial difference you live with it. If it is just a difference, why obsess about it? I think your husband has the right idea.

  9. As my 26 yr old is a double tap regression kid, I am wondering if maybe trying carnitine or even mildronate for the brain fog would be an interesting trial. Peter, do you know what a dosing schedule for mildronate might look like? At 20 mg/kg, I would see my son taking about 1500 mg/day but wonder how to space it out.

    1. Nancy, I think carnitine and carnitine-like substances such as Mildronate will only help of your son has mitochondrial disease and so his cells are starved of fuel/ATP.

      It looks like Maria Sharapova used it from 2006 to 2016. So guess it boosted output from her mitochondria.

      Is your son a sporty guy or a couch potato?


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