tag:blogger.com,1999:blog-655962722302095847.post987676344137556178..comments2024-03-28T22:33:35.806+01:00Comments on Epiphany: Just What is Autism?Peter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-655962722302095847.post-73271995085446755152022-06-26T13:48:31.555+02:002022-06-26T13:48:31.555+02:00DSM5 was definite a backward step, if you actually...DSM5 was definite a backward step, if you actually want to treat autism. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-71989385798704485022022-06-26T07:47:00.610+02:002022-06-26T07:47:00.610+02:00Hi Peter,
I agree with everything you’ve written ...Hi Peter,<br /><br />I agree with everything you’ve written here. Do you think that combining Asperger’s and Classic Autism together into ASD on the DSM V has stifled research, perhaps by forcing trials to test anyone who is classified as ASD.<br /><br />For example, I participated in a clinical trial for an autism drug this year, and the investigator was surprised why I was even there, because as an aspie, I didn’t resemble the classically autistic patients he usually worked with. Much to my surprise, I qualified for the trial, which seems absurd. I suspect that they had to accept anyone who was ASD in order to receive FDA approval.<br /><br />To expect a single drug to work on as varied a population as both Elon Musk and someone with MR/ID is ludicrous. The psychiatrists searching for this magical drug seem to have more in common with UFO hunters than actual scientists.<br /><br />If only psychiatrists would read your blog, perhaps we would have drugs that help both Aspies and Classical Autistic folks by now…Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-19081534208350698152016-11-02T21:32:54.276+01:002016-11-02T21:32:54.276+01:00Tanya
Ask me. After slogging for years over scien...Tanya<br /><br />Ask me. After slogging for years over science and mathematics and acquiring a doctorate, quitting it all has been the best and the most independent decision of my life. I have felt this mentally strong, happy and worthy never before. Though musings from my family about 'such a waste of talent' leaves me a bit perturbed but only for a short while. In most cases, if the first born on whom the parents invest most, displays an early streak of brightness, god forbid, the child's entire life is appropriated by others. This leaves that child forever having to carry the burden of expectations and often the second born with a complex of not being the best and most valued.<br /><br />All kids are special needs kids, I believe but in the context of autism I always try and remind myself to<br /><br />1. Try and maintain equanimity and avoid emotional reactions or even undertones when dealing with worrisome behaviour.. attempt firm regulation.<br /><br />2. Our observations about kids are only our perceptions and not what our kids really are..avoid defining terms like shy, introvert, unhappy, always bright and happy and the most lethal, 'genius'. I am really bad at this and all the time labelling my child.<br /><br />3. How our lives have turned out or directing our lives trajectory is not our child's responsibility. Trying to work out the best developmental trajectory for our child is, however, our responsibility. I am perfect at this.<br /><br />I know, all of us are deviating from the topic of this post, but as Tanya states, emotional health is the most important thing.<br /> <br /><br />Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-26848256143430896872016-11-02T08:20:30.254+01:002016-11-02T08:20:30.254+01:00RG, thank you so much.
I know how hard you fight ...RG, thank you so much. <br />I know how hard you fight for your daughter yourself.<br />Ketamine frightens me. With Bumetanide (2 months) plus LD Clonazepam plus Biogaia we have a good stable result.<br />I am trying to make an appointment for whole genome sequencing in the university hospital, which costs much less than in private.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-77670803778855534122016-11-01T23:10:21.634+01:002016-11-01T23:10:21.634+01:00I heard this very interesting TedTalk I think it w...I heard this very interesting TedTalk I think it was on NPR (for those in America) from a pyschologist I think she was (only caught the middle part of the program) talking abput child development. Those who were always told they were excellent at one particular thing and were the best at it and constantly praised etc grew up to have the most anxiety, to be the most miserable and depressed. They became debilitated by being afraid to fail. They would never try anything new for that fear. She called these kids the ones who learned to have a "fixed mindset". Whereas the kids who were just average, never pumped up with excessive praise etc, and a "growth mindset" and were not afraid to experiment and try new things. therefore their emotional health is better. After all - the most important thing. Tanyahttps://www.blogger.com/profile/01489962611979985947noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-87143044632438119702016-11-01T19:46:46.682+01:002016-11-01T19:46:46.682+01:00Petra, have you tried Ketamine? Petra, have you tried Ketamine? RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-41063368525021082892016-11-01T19:46:21.332+01:002016-11-01T19:46:21.332+01:00Kritika, Jane, thank you. I appreciate your commen...Kritika, Jane, thank you. I appreciate your comments.<br />Best wishes to you.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-44378476036850611852016-11-01T19:45:32.291+01:002016-11-01T19:45:32.291+01:00Petra, listen to Jane. If there was a single big ...Petra, listen to Jane. If there was a single big mistake we all made in my cousin's case, it was to not only make much of his talents, he enjoyed the praise, but also to drive him to be better, if not the best. Thinking we were helping, we would say things like, " You are going to ace this, you are the best, everybody is going to think you are fantastic", under the misguided impression that we were helping alleviate his anxiety. So, I think he was under huge pressure to compete, whether it was school or music. Any enjoyment that was there was completely overshadowed by severe anxiety and feelings of inadequacy. <br /><br />The only thing he really enjoyed was Indian history, and he used to take these trips to India and visit various places of interest. He also enjoyed music whilst there as he could go to some exceptional musicians and discuss and learn from them in a very informal way. <br /><br />Unfortunately in my family we are all very stoic and not demonstrative about our affections. I wish and wish that we could have just kept telling him " I love you, I am so glad that you are here with us, we just love having you around. I am so amazed by your brilliance, but the world is too competitive and it ruins everything, so if something is not fun you shouldn't do it". <br /><br />I am so deeply disappointed in the psychiatric profession. After more than a century, I see the least progress in this field. They are woefully inadequate at significantly helping with any of the neurological disorders, whether it is autism, bipolar, schizophrenia, etc. <br /><br />Petra, I think you are a wonderful mother, such a partner to your son. My aunt and uncle were not able to communicate with him about his difficulties quite as much as you are, so I think he felt much more alone and in despair. <br /><br />RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67142225132698757362016-11-01T16:18:20.259+01:002016-11-01T16:18:20.259+01:00Jane,
You are so right. The most empowering thing...Jane,<br /><br />You are so right. The most empowering thing an individual can experience is freeing oneself from others expectations which we unconsciously make our own and reclaiming our right to be ordinary, nonambitious, unexceptional, even stupid.<br /><br />It's difficult for neurotypicals..it might be extremely complicated for the atypicals.<br /><br /><br />Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-65401415028980638372016-11-01T14:15:52.017+01:002016-11-01T14:15:52.017+01:00Petra, sometimes talent is a trap.
We do somethin...Petra, sometimes talent is a trap. <br />We do something well, and it feels good to be good at something, but then it seems everybody expects us to do that, and do well and forever. If that is not what makes us happy it slowly eats us from the inside. Something everybody tells us we should be proud of makes us miserable.<br />Maybe being someone with Aspergers makes it harder to recognize the trap and do something about it. But its a kind of cycle hard for anybody stuck into it.<br /><br />Wish the best for you and your son.<br /><br />Jane.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-20174713396566550712016-11-01T13:34:28.731+01:002016-11-01T13:34:28.731+01:00Petra,
Hold on. There has to be a way out. There ...Petra,<br /><br />Hold on. There has to be a way out. There absolutely has to be something that could help nurture this kind of unique mind.<br /><br />Petra, sometimes my son who is 4.10, when looking at videos involving numbers at night, a nighttime ritual, will just rush out and take out his number flash cards or number books and with full concentration, rapidly scan through all of them. He is trying to understand or form some kind of pattern. When other kids his age sleep with teddies, or Spiderman or even cars, my son will keep either alphabet pieces or numbers taken out of the puzzle tray. Numbers and alphabet have discrete, unchanging forms and meanings and then you can control their mpvement to give them a different meaning. This is what he is probably in love with.<br /><br /> Thank God this is changing, though. He is mostly a happy confident and assertive child who knows his mind and body. <br /><br />And please God, spare my son and Petra's son from anxiety and self doubt.<br /> <br /><br /> Anonymoushttps://www.blogger.com/profile/03480846227414561711noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-34749262235018994262016-11-01T11:15:42.752+01:002016-11-01T11:15:42.752+01:00Our kind of "autism" resembles with RG&#...Our kind of "autism" resembles with RG's relatives and it's absolutely tragic to hear that such a successful person ended his life just like that.<br />This is also my daily nightmare.<br />As a family we spent much of our lives in a "tragic irony" environment, meaning the events happening on the surface differed radically from what was the actual case.<br />My son attended mainstream school and was always excellent with his studies. No interventions were made since we didn't know that he was an Aperger's. To give you an example, there is an incident when he was first grade elementary school that the teacher praised him for proficiency and asked in front of the class "How much did you practise at home?" and my son gave a robot like answer, "I don't know what practise means." All children laughed because they already knew that "practice makes perfect", but my son was an exception to this rule. <br />During his school years showed talents in maths, music, foreign languages, geography and the list doesn't end here.<br />When he finished school, he entered university exams with very high marks. He studied electrical and computer engineering and finished half school (2.5 out of 5 years) when he became seriously dysfunctional and suicidal.<br />Full blown meltdowns occured, with head banging, aggression and property destruction.<br />Once, during a meltdown, two different kinds of armed police forces came to our appartment because there was such noise that the neighbours felt life threatened. Fortunately I managed to persuade them that it was an autistic meltdown and didn't let them in. I don't know what would have happened if the police had tried to restrict him.<br />Recently my son, after spending days and nights with mathematics, he said " I have to stop...I sometimes think maths makes me "unwordly"." In the beginning I laughed but then I took it seriously. It's like the two sides of the same coin. His talent comes together with his pathology and can't be separated.<br />Anyway, I could spend hours describing how weird and unique he is but I can't explain why he comes to deadends.<br />This is more or less, just what autism\asperger's..you name it, is in our case.<br /> Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-81082540938824918142016-11-01T01:15:42.931+01:002016-11-01T01:15:42.931+01:00Peter, in America, I think there are many more th...Peter, in America, I think there are many more that are mild than before. I think one of the great data points is old line pediatricians in small towns who rarely saw autistic children or asperger kids and now it is commonplace in his practice. These are not severe kids he is talking about. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-60421521298694074592016-11-01T01:02:23.938+01:002016-11-01T01:02:23.938+01:00My hunch is that there are more kids now with seve...My hunch is that there are more kids now with severe autism than before. But this is masked by a vast increase in diagnosing very mild autism that has always been present but previously were called odd/weird/quirky/nerdy etc. The statistics are so poor quality we cannot prove anything.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-73039787128172982002016-10-31T22:22:23.608+01:002016-10-31T22:22:23.608+01:00Yes Peter, so very important. I saw what my aunt ...Yes Peter, so very important. I saw what my aunt and uncle went through, such worry and anxiety, and a frustrating inability to help. My aunt would often point to my daughter who had the same diagnosis, and say, "she's happy, she's able to have fun, but he simply is not". My daughter is on the moderate to severe end of the spectrum. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-74283840167874321492016-10-31T20:16:24.878+01:002016-10-31T20:16:24.878+01:00Now RG, this is what seems to be the question ..wh...Now RG, this is what seems to be the question ..what is autism. A highly talented and intelligent individual with mental depression who takes his own life to a sixteen year old who cannot seek help when left behind in the school bus and life just takes itself away from him.<br /><br />Depression, obsession, not fitting in, little awkwardness or just not knowing that you exhist..no self.<br /><br />What is autism?<br /><br />And yours was a very tragic account. God bless our kids.<br /><br />Anonymoushttps://www.blogger.com/profile/03480846227414561711noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-73591845510505437802016-10-31T19:59:02.726+01:002016-10-31T19:59:02.726+01:00RG, suicide and indeed some criminal activity are ...RG, suicide and indeed some criminal activity are linked to Asperger's driven by feeling that you do not fit in. These are very real issues, but they do not apply to more severe autism. So for the benefit of everyone we should use precise terminology and people should be aware of what risks are associated with each condition.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-29348086809338016182016-10-31T19:43:58.281+01:002016-10-31T19:43:58.281+01:00Not necessarily wonderful. My cousin was a high f...Not necessarily wonderful. My cousin was a high functioning autistic, his family kept his diagnosis hidden. Had completed his MBBS and was in specialist training in anesthesiology. Proficient classical musician, history buff, overall lovely person. Found it profoundly difficult to be around people, create and sustain relationships, severe anxiety. Top student, was encouraged to move from cardiology to anesthesiology because of his lack of people skills. There, he had a review with the Head who again pointed to his shortcomings. Two days later he took his life. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-44987381933173478602016-10-31T18:18:28.472+01:002016-10-31T18:18:28.472+01:00How wonderful for parents to have autistic kids wh...How wonderful for parents to have autistic kids who always talked well like Roger or Asperger's 'little professors'. And the recoveries from kids obsessing about dinosaurs or color green. <br /><br />But there is a population of autistic kids who are just not..nowhere. They are like absences whom even the very sensitive therapy center I go to does not know what to do with beyond an hour or two. Or the high IQ eighteen year old severely autistic who paces around singing and flinches if my four year old touches him. They also represent autism and are in greater need of medical and other kinds of assistance. A responsible media should give at least some representation to this 'subpopulation' but it will not. Who wants to print an article about a thirteen year old who plays with his saliva and is in diapers and cannot feed himself. These kids and exhist somewhere on the fringes of mainstream society and wait for a time when the meek shall inherit the earth.Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-48655829208843594202016-10-31T17:43:46.122+01:002016-10-31T17:43:46.122+01:00You are right Roger, what we call Kanner's aut...You are right Roger, what we call Kanner's autism today generally means severe autism, but the subjects Kanner documented were generally higher functioning than this. I think back then even he would not have bothered with boys who were non verbal, non toilet trained and had seizures. We really do need better terminology to describe all these features. I do like Asparagus Syndrome from the book you highlighted.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-42890094890201004622016-10-31T17:37:55.314+01:002016-10-31T17:37:55.314+01:00IMO: if you can 'hide it' then it’s not au...IMO: if you can 'hide it' then it’s not autism, because it means 'the something' regarding communication, socialisation and language that is impaired in autism is not impaired in that individual.<br />But people have appropriated so much from the term autism that is almost an empty label. Almost like it’s a lifestyle preference instead of a medical condition.<br />On the other hand, I feel sorry for these girls, who think they need a psychiatric diagnostic to have the right to be themselves, and require it to have their needs considered by the school system. It should not come to that. <br />I attribute the fault to a school system (society?) that went too far regarding people standardisation and labeling.<br />Jane Neveshttps://www.blogger.com/profile/07571450746865524717noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-10112400637299995612016-10-30T22:18:56.201+01:002016-10-30T22:18:56.201+01:00This is a phone call I know is coming and one I dr...This is a phone call I know is coming and one I dread. In fact two calls..mum and sis. An interview with Temple Grandin was there in the newspaper and now my mother gets all excited and when I tell her Grandin had aspergers which is different from autism which her grandson has she will get confused and start mixeing up schizophrenia with aspergers and insist temple had autism. And this is a woman with an M.Phil in child psychology. Or they will pick up recovery stories of kids whose autism mainly meant boring people to death by narrating stories they created. Or some old lady will tell me Temple says you have to allow the child to make a choice..farm or staying back at home Temple's mother would firmly ask her. Excuse me Auntie, but my son is still learning to point out at mom and dad with a full prompt..holding his hand, making him stick out his forefinger and speaking a stretched out MOM. Then my biotechnologist sisters favourite stories..autistic kids understand everything and in fact have advanced languages. So basically I am supposed to patiently wait for my son to compose a masterpiece which will put Shakespeare to shame..he will take his own sweet time. Print as well as visual media have contributed a great deal to creating an unrealistic image of autism and the unrelenting hardships that parents go through while raising a child with AUTISM are usually treated as inconvenient truths. <br /><br /> Kritikanoreply@blogger.com