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Friday, 21 February 2020

"Don’t you know, there are Autism Families?" – and Psychotic Children back in 1962


You might be thinking this post is going to be about how the whole family have symptoms of autism, or the cases when siblings without autism, have facial or other features that are associated with autism; it is not.  If you prefer that subject, follow the link below.



This week I learnt a new term from Monty’s 1:1 school assistant, for when the family unit of a child with autism becomes dysfunctional and everyone is negatively affected.  Those in the autism business call them “Autism Families”.

Monty’s family, she went on tell me, is not an Autism Family (I guess we are a Family with Autism); “you have protected them” and Monty’s brother (his only sibling) is totally normal.

We had been discussing how NT siblings can suffer and become maladapted themselves, due to the situation they live in at home.  The rules at home can change; the rules for bringing friends home can change, the rules for going out change, going on family outings and holidays all change.

Many parents say that their circle of friends completely changed during the years after an autism diagnosis.  That did not happen for us.

Even though I do write this weekly autism blog, our family rarely has any direct contact with other families affected by autism.  We never used a special school, therapy was always home-based, so we have never encountered more than a handful of special families.

But, I have met many teachers and the therapists working in autism as a profession and I am like an open lending library for books on educating someone with autism.  So, I am always getting snippets of gossip about Autism Families and the other category, Families with Autism. 

It looks like there is a big difference between being a Family with Autism and an Autism Family.

Our reader Natasha likes to see autism as a “whole body disorder”; now perhaps it should be thought of sometimes as a “whole family disorder”, and that is not meant in any nasty sense.  Just like Natasa thinks we should be treating all the comorbidities in the child with a diagnosis, do not forget the well being of the siblings without a diagnosis. Some parents are naturals when it comes to dealing with disabilities, but many are not; they might need some help too.

There is nothing special about autism in particular, there are many other types of disability.  Monty’s elder brother has friend from a large family.  The eldest sibling has severe cerebral palsy (CP); he does not talk, walk or feed himself, but the family continued to expand and flourish.  So they would be a family with CP, not a CP family. They deserve a medal. 

CP is not inherited, by the way.

Monty himself has an NT classmate who has a brother with CP.


Fancy joining an Autism Family / Family with Autism?

I did get sent an interesting link recently; it is interesting because the people who wrote the comments generally have many years of experience with autism, so they are worth reading.

The majority of articles you see about autism are either written by adults with mild autism or parents of recently diagnosed children.  Both groups are often quite up-beat and you might wonder what is the big deal about autism.  Will those parents be equally upbeat in ten, or twenty years’ time? Cute little toddlers grow up.

That brings me to the moral dilemma in the link, should the lady date the guy who is a single Dad who has a child with autism at home.



If you skip through the comments there are some really heart-felt ones from people who have “been there and done it” and from grown up siblings of a person with autism.

The conclusion overall is not the politically correct response that is fashionable, it was a pretty clear “Don’t do it!”

Autism self-advocates and indeed those Autism researchers, who declare they are not interested in actually treating/preventing autism, might benefit from reading the article and comments.  After decades of living with autism in the family, the picture is very often not rosy.  

To quote the other Rosie, the lady from the discussion I linked to:

“As a single parent to a special needs child I am heartbroken to read these comments.” 

Time for personalized medicine, to make life with Autism better? I think so.      


Autism families back in the 1960s

It was only back in the early 1960s that there were any Autism Families as such; it was only then that a few children began to be diagnosed with autism and continued to live at home, rather than be packed off, as a 3-4-year-old child with "mental retardation", to live an often short life in a Mental Institution/State Hospital.

I recently read an interesting comment written by Michael Baron; back in 1962 he headed the world’s first parent organisation for autism, the UK's National Autistic Society.

His main point was to highlight how autism has completed morphed in 60 years to a quite different condition.  It is not the same autism.

When his organisation was originally founded, it was called The Society for Psychotic Children.  That was the name the parents came up with themselves, before later substituting the word Autistic. 

The old name has well and truly been erased from the records. 







16 comments:

  1. Peter,Speaking as someone whose autism was severe enough to be diagnosed as a child,fifty years ago,and has spent a great deal of time in social media,and internet discussion groups,with families of severely autistic children in the last fifteen years,I don't think autism itself has so much morphed into a different condition,as we have so many more mildly effected individuals,who have been diagnosed,expanding the idea of what autism is.These mildly effected individuals have forced society to see autism through their eyes,at the expense of all others,much to the detriment of those who are more severely disabled.

    We still have many autistics who would have been disabled enough to have been diagnosed 50,60 years ago.If not more,in part because these individuals are no longer shut away in institutions,away from society,and more such children might be being born today,but that is a different discussion.

    I believe these individuals have been marginalized,and ignored by neurodiversity advocates,who want to promote their view of autism above all others,and control the way autism is presented to the public at large.The view that only the very highest functioning,least disabled,should be allowed to speak for those effected by autism,and that even parents,and family,of the most profoundly disabled,who cannot speak for themselves,should not have a voice in the the autism discussion.That all other viewpoints about autism should be silenced,or derided as "hate speech".

    The whole "nothing about us without us" nonsense,and the toxic #actuallyautistic discussion on social media being obvious examples.To say nothing of the self diagnosis phenomena,which a number of experts and researchers actually support.

    There is a different viewpoint,call it a backlash if you will,that the diagnostic pendulum has swung too far.That the term autism has become so diluted that it no longer has meaning,that we need a new set of definitions,and a new paradigm.A view I wholeheartedly support.It could be argued that the very creation of the autism spectrum was a mistake in the first place.That Asperger's should have remained its own distinct condition,apart from autism.

    What if we considered Multiple Sclerosis or Cerebral Palsy to simply be a part of neurodiversity?Those who presented such views would be justly deided or ridiculed.So why do we accept this with disorders like autism or schizophrenia?

    I believe the differences across the spectrum have become so great that there can be no real discussion,or truce between the warring factions,and breaking up the autism spectrum,or doing away with the idea entirely may be the only soultion.

    But until we get to such a point,it is our duty to speak out against those who misrepresent autism as an "identity",or a mild "neurological difference",and not a medical condition,that causes and treatments need to be found for.

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    1. I am currently trying to collect experiences from people with mental health problems, even with mild ones and I have come to some conclusions and considerations. I would like to share that almost all people with such disorders including ASD and Aspergers suffer deeply and hugely, in silence, in ways not explainable in terms of social exclusion or marginalization even bullying but perfectly explainable when looking from the biology and neuro-developmental side of things. For me, neurodiversity indeed brought up much more problems than intended to solve. People that identify themselves as part of this group are actually suffering on their own ways and are in a state of confusion and / or denial that their neuropsychiatric problems are to blame. The problem is not neurodiversity. The problem is people suffering and not being able to maximize the potential and live a fulfilling life. Yes, there are exceptions but for the most part all the beauty in our souls and our diverse world come from traits of character and individuality not from states of disorder. Please, for anyone reading this while being diagnosed wihh any condition, you are not the condition the condition doesn't truly make you. You are unique but struggling with a disabilit, aa health problem, just That, and hopefully storing enough to overcome your struggles. I will make a second comment to further address these problems. We to try to overcome problems and change the status quo of medical and psychological treatment for the betterment of people not create more barriers to a better future

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  2. Hello Peter, friends, and community,

    Hope everyone is having a wonderful Saturday!

    I just ran across an interesting paper, maybe not so much for me (as my daughter has a known genetic cause for her ASD), but for others, especially those with boys with an unknown cause of their ASD.

    The paper is called [11C]PBR28 MR–PET imaging reveals lower regional brain expression of translocator protein (TSPO) in young adult males with autism spectrum disorder and the link to the paper is:

    https://www.nature.com/articles/s41380-020-0682-z

    I was curious to see if I could find any accessible ways to increase TSPO and I found the following:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6282421/

    So dandelion appears to increase TSPO mRNA, which is generally how you get increased levels of a protein, but there may be some other unknown mechanism that is lowering expression of the TSPO protein so who knows if dandelion extract may actually be helpful.

    I just wanted to share the above, just in case anyone found it of value.

    AJ (of the thawing north)

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  3. Hello Peter, friends, and community,

    I just wanted to let everyone know that I started Cal/mag Butyrate a couple of weeks ago, without any success yet (although it is very early, so I wasn't necessarily expecting any major signs yet).

    The reason I wanted to post about this is that a few years ago, I wanted to trial Butyrate but couldn't even do that as Butyrate's smell / taste is …. well... not great. It's not bitter, but it's like an unholy combination of rotting eggs, vomit, and … parmesan.

    This time, I initially trialed it with pomegranate juice, and, while I didn't think it was possible, the flavor actually become worse. Then I trialed it with water and honey.. and it was OK! Ok enough that my daughter is OK with it on a daily basis.

    So if you are interested in trialing Butyrate, but have been afraid to given it's offending odor / flavor, I can tell you that water and honey do the trick.

    Oh, the things we ASD parents have to figure out …

    AJ (from a balmy 6 degrees Celsius today!)

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    1. Oh gosh AJ, it sounds worse than Krill oil. And parmesan!? *rofl* :-D
      By the way, have you yet any idea why the BHB was successful even without measurable ketones? I'm interested since I'm looking at everything through NLRP3 inflammasome glasses at the moment and maybe lower doses can inhibit that(?).

      Dealing with a known genetic condition can actually trick one into only following the genetic cascade onto receptors and neurotransmitters and not consider 'environmental' factors such as inflammation as a main reason to the seen symptoms. I think I have learned that lesson now.

      /Ling

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    2. Hi Ling!

      I've never tried Krill oil, but wow, is Butyrate stinky. It really does smell a lot like parmesan (which I love) but mixed with some really not pleasant other smells. I will say that it still doesn't rival TUDCA - TUDCA is something that can only be taken via capsule. It is incredibly bitter. Since my daughter can't swallow pills, the flavor of everything becomes very relevant, and Butyrate is not easily hidden.

      You're absolutely right about BHB - I can't figure it out. We used low levels of BHB salts and thought we saw some improvement, so I then tried BHB esters, which provide a much higher level of BHB and … nothing new.

      So to my way of thinking, either there was a coincidental improvement that had nothing to do with BHB, or it isn't dose dependent, and just a little bit of BHB is enough.

      For me, I'm still identifying various hypotheses, testing them via relevant mechanisms, and hoping for the best. There is a university team from the US working on my daughter's gene, and they are making progress, but not enough yet that I can use their findings.

      For us, I feel that even with a mild to moderate improvement in the near term, we will be so much better off until a much more effective treatment in the long term. It's just finding a mechanism of action that will help.

      I hope all is well with you and your daughter Ling, and I'm sure that with your dedication, you are getting closer to the answers you need everyday.

      Hoping we can celebrate improvements in both of our kids soon :)

      AJ

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  4. Dear Peter Lloyd-Thomas,

    My name is Bruno and I currently live in Brazil. In addition, I am the father of Eduardo who is currently three and a half years old. Last year, at two years and ten months (March 2019), my son was diagnosed with autism. His type of autism has the following characteristics: stereotype, speech repetition, echolalia and little dialogue.
    Since the diagnosis, Eduardo started ABA, which was intensified on September 2019, and he also started one treatment with a DAN supporter who works in Brazil and who was visited in November 2019.
    Since the treatments started, I really felt an evolution of my son, the only problem is that it is a weak evolution. In order to try to improve the situation, I ended up finding your blog and I was intrigued by the amount of good information presented. Therefore, in the light of your knowledge, I would like to ask for help to indicate which remedies I should give to my child, considering what is written in the polypill part of your blog.
    I want to highlight that, according to his medical prescription, my son is currently using PEA, Omega 3, Vitamin D, personalized probiotic, folinic acid and a multivitamin called spectrum needs. Despite all this arsenal, I believe that the result has been very poor.
    In your opinion, what remedies would be interesting to give my child? Bumetanide, NAC, Atorvastatin, Broccoli Sprout?
    I would be very grateful if you could help me where to start, that is, what substances to give to my son.

    Best regards,

    Bruno

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    1. Bruno, I answered the first time you asked on a different page of the blog, a couple of days ago.

      https://epiphanyasd.blogspot.com/2020/02/thirst-too-much-or-too-little.html?showComment=1582273787533#c1149851956998754818

      Here is the reply again.

      Bruno, your son Eduardo is very young and this is the best time to improve his future development. You do need to see a clear benefit from at least one drug, so that your family accepts that you can treat autism medically. You need to see a big "Wow!" effect. For us it was Bumetanide.

      I would start with NAC, because it shows a benefit from the first dose. In a three year old this might be hard to notice, but there could be less stereotypy.

      Bumetanide will take two weeks at least to start working, if Eduardo is a responder. I think you have a 50% chance of him being a genuine responder. Details on its safe use are here:-

      https://epiphanyasd.blogspot.com/2019/06/the-safe-use-of-bumetanide-in-children.html

      I think Bumetanide is not available in Brazil or Portugal. I think you will need to get it from Mexico or Spain.

      Unless you do some genetic testing, you are treating autism of unknown cause. An altered immune response is very common in autism and numerous drugs have been shown to benefit some people with autism that can be considered broadly "immuno-modulatory". The immune dysfunctions are not all the same. In my case Atorvastatin is helpful, and in some other people. Other people respond to different therapies, and the list is long. You are using PEA and this helps some people, but not others.

      If your son is a happy boy, I would not bother with Broccoli sprouts at this stage.

      The disadvantage you have is that while NAC and Bumetanide are used in 3 year olds, many drugs are not. This does not make them dangerous, it means they have not been tested and approved for pediatric use, because nobody saw it necessary.

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    2. Dear Peter,

      Dear Peter,

      Today I bought the NAC. Here in Brazil there is a generic version of Fluimucil in syrup (40mg / ml) or powder (600mg per sachet) format. I decided on the syrup version.
      Regarding bumetanide, it is available in Brazil through compound pharmacies, even in liquid form. Previously, bumetanide was sold in the generic version by the Abbot laboratory, but they canceled sales due to lack of interest, according to the manufacturer himself. I am thinking of ordering bumetanide in the 0.5mg / ml format. What do you think?
      What genetic tests do you recommend? So far the neuropediatrician has requested the CGH-Array, but I think that this test is insufficient to discover something. Would sequencing his entire genome be better?
      As for the PEA, it has not yet completed a month and the brand that I purchased requires at least 2 months of use to observe the effects. I am using two capsules a day (630mg PEA and 24mg Luteolin).
      As for my son, he is very happy and active. He is always smiling and calling to play. I even think it's a little atypical in relation to the autistic people I met before.
      Regarding the other drugs, although they have not been tested on younger children, because of the studies I saw, I do not believe that they are unsafe. In fact, I would like to ask your opinion about using Atorvastatin and Clemastine (shown in the 6th version of polypill) on my son? Would it be too risky? I followed your statin posts and really liked what I read.
      Finally (I'm sorry for the size of the post), I have two last questions that I remembered just now:
      1) when administering Bumetanide, would it be valid to give the supplement of potassium and magnesium that you administer to your child? Or should I adjust the dose considering weight and age?
      2) here in Brazil it is quite common to follow a DAN line inspired by American doctors, so a lot of injectable B12 is used. Have you never thought of using this?

      Best regards,

      Bruno

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    3. Bruno, I would use 1mg a day of bumetanide. In the trials they split this into two doses, I think a single larger dose is more effective. You have to monitor potassium levels.

      For each 0.5mg of bumetanide, 200mg of potassium is usually given. You can add magnesium, my supplement combines magnesium with potassium.

      https://epiphanyasd.blogspot.com/2019/06/the-safe-use-of-bumetanide-in-children.html

      In the clinical trial of B12 the parents did not notice any difference, but the clinicians did, but they organised the trial. Some people have a negative reaction. I think NAC has a much greater effect and there is some overlap in how they might be helpful.

      The best genetic testing is WES (whole exome sequencing). The key part is the interpretation of the results. There is a big lab in the US called GeneDX. I would send the sample there.

      There are many interesting potential therapies not approved for pediatric use. So it is a risk you have to consider.

      I think you can make a short term trial and then decide. In the case of the statin it only takes a few days, the effect of clemastine takes longer to develop.

      There are many other interesting therapies I do not use. It is a case of trial and error unless your genetic testing tells you something useful.

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  5. Dear Peter,
    I am so sorry for this. I did not find your answer in the previous post.
    Thank you very much

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  6. Here is some interesting research for a genetically engineered form of lettuce which produces IGF-1 and raises IGF-1 levels when ingested:

    Press Release:

    https://www.sciencedaily.com/releases/2020/02/200224133835.htm

    Paper:

    https://www.sciencedirect.com/science/article/pii/S0142961219306908?via%3Dihub

    This research concerns diabetes, but IGF-1 signaling was recently brought up by you here on this blog. No idea when or if this will become a real product you can buy anytime soon for a reasonable amount of money, but very interesting nonetheless.

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    1. It's cool, but why did they have to do transgenic lettuce of all possible things? Why not something more palatable?

      /Ling

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  7. Peter, I have two questions, one for you and one for everyone else incl. you.
    1. You say you use a really low dose of DMF and that it needs an enteric capsule. So how do you do that in practice?
    2. I am starting to realize that we really need to teach our kid to swallow capsules. My biggest deterrant was the incidents that can occurr with a child who likes to mouth everything if you teach them that swallowing is ok. So, does anyone know of a good way to stop mouthing? It has increased a hundredfold since last summer, but considering her pronounciation is better, we feel its a nerve thing where she can finally feel her mouth. Any advice on this conundrum is really welcome.

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    1. tpes, it looks like you need to teach your daughter to swallow tablets. Start with small ones and gradually work up to larger ones.

      I am subdividing a 30mg tablet of DMF into six, using cheap micro-scales. I am using enteric capsules, which you can either buy empty, or use a cheap generic drug that comes in an enteric capsule (like an anti-acid PPI drug) and empty the capsule before refilling with DMF.

      Do not chew the capsule.

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    2. Tpes, I think you have to see the mouthing issue as unrelated to pill swallowing capabilities. Mouthing could be a good thing if it leads to greater mouth awareness. If you create a routine/specific context around the pill swallowing, I doubt it will happen on other occasions. But you know your daughter best. I think that maybe very small gel capsules with say fish oil could be a good starting point for training.

      /Ling

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