Here is the audio recording of a discussion between parents of autistic children and Eric LUCAS (“Asperger” autistic self-advocate), at the headquarters of AutismCare Nepal Society, Kathmandu, on may 2nd 2016.
The meeting lasted more than 3h30.
Here May 2nd 2016 In autistic children and Eric Lucas (“Asperger” autistic self-advocate), AutismCare Nepal Society, Kathmandu, There is a discussion between Amababulai at the headquarters of the company.
The meeting was longer than 3h30.
Part 1 of 2 – 2 Part of 2 (1H50’05”)
(Click the links to listen in the desired language)
(Click on the link to listen to the desired language)
0:00:00 – Beginning – (Closing the door, Getting More Light, Switching off the fan because of the noise) – Introduction – About Audio Recording, Cards, No Photos
0:02:28 – Start – (Door Closure Gets More Light, Because the fan of the attack switch off) – introduction – About Audio Recording, card, Any Photos
0:03:53 – “I discovered that I am Asperger 3 years ago, But before this, I had many problems.”
0:04:36 – “I'm Asperger's 3 Year First Address, But it was first, I had a lot of problems”
0:05:05 – The movie 'My name is Khan'” : Discovering “Asperger”, Understanding all the difficulties, Like when you switch on the lights
0:06:00 – Movie 'My Name Is Khan' “: searcher” Asperger “, All Difficulty, Sense when you switch on lights like
0:06:21 – Official diagnostic – Creation of an Autistics’ Association in France (Autism Alliance)
0:06:52 – Official Diagnosis – Creating an Autistics' Affiliation in France (Alliance Autiste)
0:07:09 – Difference between “Autism Alliance” (Association in France) and “Autistic Alliance” (International Concept)
0:07:33 – “Alliance Autiste” (France Affiliation) The twenty-seventh consonant of the Devanagari syllabary “Autistic Alliance” (International Concept) Difference between
0:07:53 – “I will talk a little bit about me but mostly about autism, And you will be able to ask many questions after this”
0:08:40 – “I'll talk a little about me but mostly about autism, And you will be able to ask many questions after this”
0:09:08 – (Being a little bit disturbed by noises and people moving – Need to retrieve the thread of my thoughts)
0:09:30 – (A little noisy and distracted by people – The point of my opinion again: Requirements to obtain)
0:09:45 – About our association in France – our report to the Committee of the Rights of the Child at the United Nations – Since then, We are consulted by our government
0:10:36 – Our Report to the Committee on the Rights of the Child at the United Nations – – फ्रान्स हाम्रो सङ्गति बारे तब देखि, हामी हाम्रो सरकार द्वारा परामर्श छन्
0:11:18 – (disturbed by the view of a boy swinging outside) – “In my childhood, I did not go with the other children, but I was able to speak”
0:12:16 – (Distracted by the view of a boy swinging out) – “In my childhood, I went with other kids, But I can speak.”
0:12:42 – Rather normal schooling, But problems and suffering because being sent to a special center for children “Who have problems”
0:13:31 – Baru General Education, But for the problem and sorrow of the little girl “The problem” Sent to a specialized center because
0:14:06 – End of studies and beginning of professionnal life
0:14:35 – End of study and beginning of professional life
0:15:03 – DJ work : You have to please to people – A way of communicating without the problems of language
0:15:51 – DJ work: You make people happy – A way to communicate without the problem of language
0:16:22 – During the night, I was adapted to a kind of “micro-society” Appreciating “Being Out of the Box”, But In The Daytime, I had problems with everyone
0:17:12 – Night, The twenty-fifth consonant of the Devanagari syllabary “Outside the Box” over valuation “Micro-society” को एक प्रकारको अनुकूल थियो, तर दिन मा, म सबैको साथ समस्या थियो
0:17:43 – Between the ages of 20 and 30, I started to think that maybe I had a psychological trouble, because everyone was telling me that “I had a trouble” and because actually I had problems with everyone
0:18:24 – 20 The twenty-seventh consonant of the Devanagari syllabary 30 को उमेर बीच, Because I was telling everyone I “I had a problem” Because in reality I was all having problems, Maybe I start thinking that I had a psychological problem
0:18:58 – Because I am very logical, I went to a psychiatric hospital by myself (Which was a big error)
0:20:02 – I'm very logical because, I went to a psychiatric hospital (Which was a big error)
0:20:44 – (My Age) – At That Time, Asperger's was not known – I had to control my emotions when explaining to the doctors, But they did not believe me, And they reject me
0:23:14 – (My Age) – In Time, Asperger's was not known – I had to control my emotions when the doctor told me, तर तिनीहरूले मलाई विश्वास थिएन, र तिनीहरूले मलाई अस्वीकार
0:24:36 – The same doctors who at first were saying that I had nothing to do in the hospital, decided after one week that I had a serious psychological trouble, and forced me to hospitalisation without consent, which lasted 15 months, which is horrible because you don’t know how much time it will last, you don’t get any justifications, you lose your self-esteem etc. – Now, I defend the “deinstitutionnalization”
0:26:11 – Horrible which you don't because it's 15 months long before the doctor said I didn't do anything in the hospital, I decided a week later that I had a serious psychological problem, And forcing me to hospitalize without consent, t know how long it will be, You don't receive any justifications, You lose your self-esteem etc. – now, The twenty-fifth consonant of the Devanagari syllabary “deinstitutionnalization” protection
0:27:31 – Now the Governmental High Health Authority is consulting me in order to make recommendations for the autistic adults
0:29:22 – Now I am consulted by the Government Higher Health Authority to make recommendations for autistic adults
0:30:34 – I may not look like your children, but 1/ There are people who were non-verbal children and who now make conferences
0:31:38 – I can't be like a little girl, wet 1 / Those who were non-verbal girls and are people who make up the conference now
0:32:26 – I can often manage to guess or to find some things about the functionning of “Severe” autistics, By Making Comparisons With My Life
0:34:00 – I often compare my life, To guess or “deep” To manage to find out some things about the functioning of autistics
0:34:56 – (Introduction to a Little Text About Autism, That I wrote this morning, And that I will read now)
(You May See The Full Text, in various languages, Here)
0:35:27 – (I write this morning about a little Autism., Lesson Introduction, And I'm going to read it now.)
(You have full text, In different languages, here Can see)
0:35:48 –
“What is called “autism” is the characteristic of the human beings strong enough to be, from the beginning of life, not influenced by the artificiality and absurdity of the current society.”
0:36:05 –
“के भनिन्छ “Autism” From the beginning of life, The texture and absurdity of the current society is not affected, Being strong enough is characteristic of the human world.”
0:36:16 – (Problem with the open door) (Problems with open doors)
0:36:38 –
“They keep their potential unspoiled, especially at the neurological level, which allows them to keep a naturally high sensitivity, and the original qualities of every human being at the beginning of his life (innocence, sincerity, kindness …) without being distorted and perverted by the social environment and its stupid conventions.”
0:37:11 –
“They potentially unspoiled their lives (faultless, unwiliness, mercy …) At the beginning of the Notwithstanding Qualities Without the Core of Every Human Being Being Distorted, The neurological level of which allows them to keep a natural high sensitivity, ma, Keeping, And degenerate by the social environment and its foolish convention. “
0:38:06 – (little problems of noise with some autistic children present, and the door not always closed) (वर्तमान केही autistic बच्चाहरु संग हल्ला सानो समस्या, र सधैं बन्द छैन ढोका)
0:38:21 –
“They are of course not interested in the absurdity (nonsense) and concerns of today’s society, which is artificial and “lost”, and secondly they feel that the more they will be in contact with it, the more they will lose their authenticity and integrity, being “polluted” and “corrupt”,” …
0:38:58 –
“Lost “तिनीहरूले absurdity (बात) And the artificial and the society of today., Don't worry about the course” “, And others feel that they will contact them with more, The more he loses his authenticity and loyalty, Hunkko “polluted” The twenty-seventh consonant of the Devanagari syllabary “broken”, “…”
0:39:38 – (Explanations)
…”which is contrary to their essence.”
0:40:02 – (explanation)
… “Its essence is the opposite.”
0:40:32 – (Explanations)
0:40:47 – (explanation)
0:41:02 –
“That is why there is no desire to reach out to others, and that is why there are blockings in the communication, which are in fact a kind of “self-protection”. “
0:41:14 –
Self-protection “There's no desire to grow before others, And there are blockages in communication which is actually a kind of, Why is it” “।”
0:41:44 –
“When an autistic still communicates with this society, it is in an “emulation” mode, or “simulation of a normal person”, Butt Retaining (Keeping) Anyway their own personal referential and thought system, which explains misunderstandings and unsuitabilities.”
0:42:06 –
“imitation “An autistic still communicating with this society, This is a” “fold, or” Simulation of the Normal Person “गलत अर्थ र unsuitabilities बताउँछन् जो जसरी आफ्नै व्यक्तिगत referential र विचार प्रणाली, तर retaining (पालन गरेमा)।””
0:42:56 – (explanations about the sentence and the difficulties to explain it – the sentence itself is an example of what is explained in the sentence (communication difficulties))
0:43:49 – (About the sentence of interpretation and difficulty to explain it – The sentence itself is an example of what is interpreted in the sentence (Communication difficulty))
0:44:24 – (Explanation about the apparent complexity, Due to the difference of referentials)
0:44:48 – (About the sentence of interpretation and difficulty to explain it – The sentence itself is an example of what is interpreted in the sentence (Communication difficulty)
0:45:14 – (Question by a parent about something written by Temple Grandin – More explanations about the different referentials, For instance in humor)
0:46:55 – (Questions written by Temple Grandin about the Guardian – More explanation about different contexts, For example in humor)
0:47:29 – (Funny Example of Different Referentials, With Trousers and Backpack at Airport)
0:49:23 – (Ridiculous examples of various referentials, With a starter and bag at the airport)
0:49:54 – (Question by Parent – स्पष्टतः मलाई जस्तै “उच्च कामकाज” autistic बीच क्षमता को फरक बारेमा, The twenty-seventh consonant of the Devanagari syllabary “कम कामकाज” वाला)
0:50:18 – (question by a parent – apparently about the difference of potentials between a “high functionning” autistic like me, and “less functioning” ones)
0:50:48 – (“You should be happy to have an autistic child ; there are always possibilities to learn how to be adapted”)
0:51:16 – (“; There are always possibilities to learn how to sort out you should rejoice that you have an autistic child”)
0:51:35 –
“We are constantly assaulted by all sorts of aggressions, that we feel through the neurological system (with the senses and the brain). These aggressions are coming almost always, from the others, from a society victim of its own system.”
0:52:15 –
“We Continue We Nervous System (With Senses and Brain) All types of aggression felt through, are assaulted by. These aggressions are almost always, From Others, Coming from a social collapse of its own system.”
0:52:36 –
“Consequently, we will be irritated, But not the others, since, for them, the nonsense and inconsistencies are “normal” and since they are less sensitive, due to their formatting and their limitations, which makes that they don't see anything of what we are seeing and which is aggressing us.”
0:53:00 –
“consequently, We will be leaky, But from others, For them, There are talk and inconsistencies” general “And they make their format and their limitations because they don't see anything, To, Being less sensitive is what we're seeing and which is aggressing to us. “
0:53:29 –
“The irritation and the inability to communicate, to find solutions and a relief will inevitably, sooner or later, Generate a nervous breakdown and, Only it is at this time, that the others will realize that there is a problem.”
0:53:46 –
“The Finding a Solution to Irritation and Failure, To talk and a relief imperative, Be slow or slow, Generating a Muscle Patient and, Will only realize that it is a problem with others, It's time.”
0:54:12 –
“As they do not see the problems that we face, they think that the problem is internal to us, and they call it “troubles”.”
0:54:22 –
“They don't see the problems we face, They tell us the problem is internal and they call” Problems “।”
0:54:45 –
“Instead of providing solutions and accommodations to the things that make us suffer, and that they refuse to see because they are formatted by the “normalitaristic” majority system, they want to “cure” us, and then we suffer all kinds of injustices and nonsense treatments (such as forced hospitalization, medicines), not to mention, otherwise, bullying, exploitation, segregation, etc.”
0:55:20 –
normalitaristic “But we are saddened to see that because they are in the format by, And things provide solutions and accommodation” “Majority System, They want” medical treatment “To Us, And then we don't mention injustice, all kinds of suffering, and thing, healing, otherwise, Bullying, exploitation, separation, beginning (Such as forced hospitalization, As a medicine) “
0:55:56 –
“Then this makes us sad, depressed, embittered, desperate, sometimes suicidal, and more irritable and frustrated over the years.”
0:56:09 –
“Then it gives us, Sad, Frustrated, embittered, Applicable, Sometimes suicide, And makes the year more frustrating.”
0:56:35 –
“Given that the doctors, who are formatted by the system to be doctors, do not understand anything in all that (apart from some rare exceptions),”
0:56:45 –
“Doctors who are in the format by system, Doctor (There are a few rare exceptions) All that is understood,”
0:56:56 –
“they see us as persons “Having a psychological problem”.”
0:57:00 –
Having a psychological problem “To see us as individuals” “।”
0:57:08 –
“And since they see us “sick”, and they consider themselves superior and allowed to take care of us, then they are not bothered by the fact that they do not understand us, “
0:57:21 –
Sick “And they have to see us as” “, And they didn't really get through to us after they didn't understand us., Consider yourself the best and allow us to take care,”
0:58:02 –
“and instead of questioning themselves and their inability to understand, they just think that they if do not understand us it’s simply because we have “a problem in the head”, which, in the best case, they call “autism” .”
0:58:32 –
“who, In excellent case, They called,” A problem in the head “And instead of inquiring about yourself and not understanding your inquiries, They only seem to say that it is because they only understand us if they have us”Autism “।
0:58:53 – (Now it is the time for “Open Discussion”)
0:59:04 – (Now it “Open Discussion” There's time for)
0:59:27 – (Question about Adolescence) “My son wants to express some things but we don't understand ; he is more irritated…”
– (answer) “It is a very difficult part of life… (bad personal memories)”
– (precisions about the question) “When it is the time of puberty, what phases do they go through, and how can we help ?”
1:02:05 – (answer) “The teenager will be irritated mostly because he can’t be understood – usually we have explanations and justifications foe what we do, but it is ignored, blocked, not accepted by the others (“it is bad / it is wrong / you should not do that / you should do like everyone does…”) – they don’t believe us – even when they believe, they don’t care – there is the frustration about the primary problem, but also the frustration about the inability to communicate”
1:03:46 – (other questions from parents, rather similar – children unable to communicate – what are the problems that they face during adolescence – when the child gets aggressive, what should be done ?)
1:05:17 – (answer) Primary frustration (being blocked or annoyed), secondary frustration (unability to be understood) – the inconsistencies, things not logical, not fair – example of the irritation because a solar shower bag was not folded 3 times (to prevent leaks) – very important : the very high sensitivity to the injustices
1:08:11 – (जवाफ) प्राथमिक निराशाले (अवरुद्ध वा नाराज भइरहेको), माध्यमिक निराशाले (unability बुझेका गर्न) – The inconsistencies, Things are not logical, Not fair – Example of the burning of a solar shower bag 3 throwing down (Because the link was added to prevent ) – Very Important: अन्याय गर्न धेरै उच्च संवेदनशीलता
1:09:47 – Things which are looking like very little details for you may be very important for us
1:10:03 – Things like looking at many small details for you which can be very important to us
1:10:23 – The first inconsistency in this example
1:11:10 – This example is the first inconsistency
1:11:50 – The other inconsistency or unfair thing : The Feeling Of Being Not Respected
1:12:47 – Other inconsistency or injustice: The feeling of not being respected
1:13:17 – There is also the question of the different referentials (The Justifications, which are rarely analyzed or expressed)
1:14:49 – Various Referentials (The justifications, Perhaps analyze or express) There is also the question of
1:15:42 – Our irritations are always caused by neurological aggressions (sensory, Or Mental)
1:16:51 – Our irritations are always due to neurological aggression (sensitive, Or Mental)
1:17:15 – The different phases in what is called “troubles” : 1/ We receive an aggression (sensory or mental, And both)
1:18:21 – के भनिन्छ “Problems” Different stages in: 1 / We received an attack (Sensory or Mental, Or both)
1:18:50 – (Follow-up) We are the only ones seeing the problem, And of course we want to stop it, To Find Solutions
1:19:22 – (Follow-up 1 / To) We only see the problem, And of course we look for solutions, यसलाई बन्द गर्न चाहनुहुन्छ
1:19:58 – (live example with the door rarely closed) I can’t feel comfortable with the door open, because anyone can enter anytime, “in the middle of what I’m saying” and make me “lose the thread of my thought” – and many autistics would feel not respected or offended, with such situations (not being taken into account)
1:21:59 – “म भन्दै छु के को बीचमा” (Perhaps to set an example with a closed door.) The twenty-fifth consonant of the Devanagari syllabary, Can't feel comfortable with the open door because no one can enter at any time, And to me “Missing the point of my opinion” Make-up – And many autistics will feel respected or hurt, Such a circumstance (Not being taken into account)
1:23:01 – There is the “Environmental problem” (Uncomfortable Open Space), and the “Social Problem” (Being Not Understood, feeling of being not respected, neglected…)
1:23:40 – त्यहाँ “पर्यावरण समस्या” (असहज खुला ठाउँ), The twenty-seventh consonant of the Devanagari syllabary “सामाजिक समस्या” छ (भइरहेको बुझिएन, The feeling of not being respected, उपेक्षित …)
1:24:10 – (this was the phase 1/)
– Phase 2/ : When you cannot fix the problem by yourself, then you have to ask to others, and then the problems are starting…
1:25:15 – (यो चरण 1 थियो /)
– चरण 2 /: When you can't solve the problem yourself, Then you ask others, And then the problem is starting …
1:25:48 – The others (Which can be the family) Don't understand the problem because they don't FEEL it – If they were experiencing the problem themselves, They would already have taken measures to fix it
1:26:28 – They had already taken measures to fix it, If they had experienced the problem themselves – Others (Which can be family) समस्या बुझ्न तिनीहरूले महसुस किनभने गर्छन् छैन
1:26:52 – The new problem is that the others don’t believe you, or they think that you are exaggerating – therefore, they don’t want to cooperate, they will not help you – then you continue to suffer from the original problem, but now you suffer also from the denial of help – it is very frustrating, irritating, and sometimes saddening
1:27:48 – You continue to suffer from your original problem, But now – They will help you, Because of this, they do not want to cooperate – New problem Don't trust others, Or they also suffer from the refusal of help you say exaggerating – It's a lot, Frustration seeps in, र कहिले काँही saddening छ
1:28:31 – You have the two problems (the sensory / physical one, and the “social” / injustice one) – you focus on the problems, then you feel the problems deeper – you have bad thoughts and memories about such problems – and then all this makes an enormous problem in the head
1:30:31 – तपाईं दुई समस्या (sensitive / शारीरिक एक, The twenty-seventh consonant of the Devanagari syllabary “सामाजिक” / अन्याय एक) छ – You have poor thoughts and memories about such a problem – – And then all it does is make you focus on the problem., त तपाईं समस्या गहिरो महसुस टाउको मा एक भारी समस्या
1:32:05 – It is a vicious circle – my neurological mental system will be irritated, then I will feel more acutely the initial problem (sensory), and so on, it will grow and grow until an “explosion” (a crisis) which will come sooner or later
1:33:08 – यो एक भीषण सर्कल छ – My neurological mental system will leak, Then I had the initial problem. (sensitive) Will feel more acutely, And so on, It will grow and grow a “blast” Up to (एक संकट) ढिलो हुनेछ जो वा पछि
1:33:55 – The crisis will come, and then the people will start to notice you – they don’t understand all the problems described above, and they see only the crisis – they will just make a relation between “aggressivity” (or shouting etc) with autism
1:34:47 – संकट आउनेछ, र त्यसपछि मानिसहरू याद गर्न सुरु हुनेछ – They understand all the problems they described above and they only see the crisis – They only “aggressivity” Will make a connection between (Or to do etc.) With Autism
1:35:24 – It would be good if you could analyse the situations (Like I do) With your children, Not with the light of the “Normal System”
1:36:09 – You don't “General System” With Jyoti, Situation analysis with the girl (Like me) It will be good
1:36:45 – Try to understand the thoughts of your child, and allow him to try to explain, instead of condemning or reproaching immediately, otherwise he will not even bother to try – you have to be open and humble, and you will see that the situation is not what you thought at first
1:37:57 – खुला र नम्र हुन तपाईं-छ, र que ला स्थिति छैन देख्नु हुनेछ – आफ्नो बच्चा को विचार _him_ बुझ्न, And allow otherwise he doesn't even worry about trying, Criticizing or reroaching the time immediately, व्याख्या गर्न प्रयास गर्ने प्रयास गर्नुहोस् के पहिलो तपाईं लाग्यो
1:38:42 – (question) “Can you explain more deeply about these situations” – (answer) “Yes, I can”
1:39:05 – (problem of the children who don’t talk) – Try to analyze with ALL the details and the history of the problem, and detect (like a police work) the little inconsistencies – Example of the folded blanket
1:41:07 – (The problem of children not to talk) – Try to analyze all the details and history of the problem together, And to find out (जस्तै एक प्रहरी काम) साना inconsistencies – यो जोडेको कम्बल उदाहरण
1:42:40 – You have to look for the “environmental details” (like label itching, temperatures, colors etc.) and also for the “social details” (things that could be seen as unfair) – try to change or correct many things, until you find
1:44:07 – के तपाईं “पर्यावरण विवरण” को हेर्नु र aussi को “Social Details” For (That thing could not be seen as unjust.) (itch, temperature, colour, Labels such as etc.) – Up to, You found, उचित धेरै कुराहरू आदान प्रदान गर्न वा प्रयास
(cut)
1:45:25 – Example about the things that I have to glue, in order to prevent people from moving them – the most important is to try to adapt, to reach the kid – the environment is very important : no aggressions
1:47:24 – Things to glue in order to prevent preventing people from example M Sarda, I-g that's – The Most Important Children to Reach, Try it – वातावरण धेरै महत्त्वपूर्ण कुरा, कुनै आक्रामकता छ
1:49:16 –
(someone answers “yes” by doing a sign with his head meaning “no” in the european culture, and “yes” in the nepalese culture, and it is very difficult to get used to this…)
(break for 10 minutes)