Raising a child with High Functioning Autism Spectrum Disorder has been an educational trip with side effects reflected in added maturity, in better consideration of learning differences as opposed to learning difficulties and plain devotion to a cause. I daydream about playing a little part in an otherwise global campaign to bring educational integration for children with learning difficulties in regular school environments. If anything, this experience for any given school means application of better updates of educational methodologies for ALL children. Highly intelligent, these children bring major question marks on social, psychological and academic preparation of their relevant generations.
Read more:http://www.time.com/time/photogallery/0,29307,2027433_2203665,00.html#ixzz14XoJIJ8Z
Study: Some Autistic Brains Really Are Wired Differently
Read more: http://healthland.time.com/2010/11/03/study-some-autistic-brains-really-are-wired-differently/?xid=rss-topstories#ixzz14JlNjWBs
Wednesday, November 3, 2010 |
Saturday, August 14 2010
Echolilia: A Father's Photographic Conversation with His Autistic Son
TIMOTHY ARCHIBALD / REDUX PICTURES
Eli in My Sweatshirt
My eldest son was born in 2001. He was always a kid who went to the beat of his own drummer. When he was 5, we began making photographs collaboratively as a way to find some common ground and attempt to understand each other. Soon after we began the project, Elijah was diagnosed on the autistic spectrum. Though the diagnosis gave me the words and history to understand my son better, it didn't take away the mystery and the need to try to find an emotional bridge to him.
My eldest son was born in 2001. He was always a kid who went to the beat of his own drummer. When he was 5, we began making photographs collaboratively as a way to find some common ground and attempt to understand each other. Soon after we began the project, Elijah was diagnosed on the autistic spectrum. Though the diagnosis gave me the words and history to understand my son better, it didn't take away the mystery and the need to try to find an emotional bridge to him.
Read more:http://www.time.com/time/photogallery/0,29307,2027433_2203665,00.html#ixzz14XoJIJ8Z
Study: Some Autistic Brains Really Are Wired Differently
Read more: http://healthland.time.com/2010/11/03/study-some-autistic-brains-really-are-wired-differently/?xid=rss-topstories#ixzz14JlNjWBs
Wednesday, November 3, 2010 |
Too many tight connections in frontal-lobe circuits and too few long-distance links between the frontal lobe and the rest of the brain may cause some of the language, social problems and repetitive behavior seen in autism spectrum disorders, according to a new study published in Science Translational Medicine. The research links a variant of the CNTNAP2 gene to this particular type of rewiring in the brain.
The new findings, which used functional magnetic resonance imaging (fMRI) to measure the types and strength of connections between brain regions, could provide autism experts with some important clues for early intervention and treatment. (More on Time.com:Special Report: Kids and Mental Health)
"I think it is quite a beautiful study," says Kamila Markram, director of the Autism Project at the Brain Mind Institute of the École Polytechnique Fédérale de Lausanne in Switzerland, who was not associated with the current research. "What's new is that it brings the genetic data together with the functional brain activity and that is usually not done. Either people look at gene expression or they look at functional brain activity. To bring them together and relate them to say, 'That particular gene is responsible for the different connection pattern that one observes,' that's a unique research area and that's the beauty of the study."
The gene produces a protein called CASPR1 and is active during brain development — mostly during frontal-lobe development. "During early development, it is localized to parts of brain that are 'more evolved' — areas where learning and language happen, the frontal lobes where really complex thinking takes place," says Ashlee Scott-van Zeeland, a postdoctoral fellow at the Scripps Translational Science Institute in La Jolla, Calif., and lead author of the study. "[It is] thought to help structure the brain." The gene also influences the development of reward regions of the brain, which are involved in motivation, pleasure and learning. (More on TIME.com: Is Picky Eating an Early Sign of Autism?)
For the new study, researchers compared 32 autistic and typically developing children, aged 11 to 13. Some had an autism-risk variant of CNTNAP2, while others had a non-risk variant. In the sample, the non-autistic children were just as likely to have the risk variant as the autistic children. Indeed the CNTNAP2 gene, which 1 in 3 people in the general population carry, doesn't guarantee autism — the gene is only one of many risk factors involved in the disorder. "In autism, there are many roads to Rome," explains Scott-van Zeeland. "You can have some of the common risk variants and they all stack up. [Only] if you have enough of them [will you] fall over edge."
All the kids underwent an fMRI scan. While in the scanner, the kids played a learning-related game that gave them monetary rewards for correct answers. The task was chosen because it activated many of the brain regions affected by CNTNAP2, including those involved in reward. (More on Time.com: 1 in 5 Kids With an Autistic Sibling Show Subtle Symptoms Too).
Regardless of autism diagnosis, the children with autism-risk variants showed different patterns of activity within the frontal lobe and between the frontal lobe and the rest of the brain. During the task, they showed more activity throughout the frontal cortex. For example, they had increased activity in the medial prefrontal cortex, which normally tends to be active when the brain is not engaged in a task; carriers of the risk variant showed less decrease in activity during the game than those without the risk variant. (More on TIME.com: Genetic Testing for Autism)
In children with the non-risk variant of CNTNAP2, brain pathways more strongly linked the frontal regions to parts of the left side of the brain, areas that typically specialize in language. In risk-variant carriers, the frontal lobe was connected more diffusely to both sides of the brain, which may help explain why the variant can be associated with delays in speech.
In addition, children without the risk variant had better long-range connections between brain regions — from the front to the back of the brain, for example. There were no differences in IQ associated with the risk variant alone.
CNTNAP2 — pronounced catnap two — is "a really interesting gene," says Scott-van Zeeland. It was first discovered in a family whose members suffered from obsessive-compulsive disorder and Tourette's syndrome (symptoms of both disorders are also frequently seen in autism). The same gene has also been linked to ADHD, schizophrenia and a language disorder known as Specific Language Impairment. (More on Time.com: A Five-Minute Brain Scan Tracks Kids' Development and May Spot Disorders).
"Genes do not code for diagnoses. They code for proteins, which then go about creating an effect," says Nancy Minshew, professor of psychiatry and neurology at the University of Pittsburgh, who has done prior research on brain connectivity in autism but was not associated with the current research. "Hence the same genes may be seen in clinically related disorders." All of the related disorders involve problems with directing attention and controlling behavior.
The new findings lend support to the "intense world" theory of autism, which has posited that patterns of brain circuitry that result in excessive functioning in some regions may lead to extremes in attention and perception, which can produce both the deficits — and the sometimes extraordinary intellectual talents — that characterize some people with autism. (More on TIME.com: Is Anorexia a 'Female' Form of Autism?)
In a brain wired with hyper-local connections, those regions would be prone to hyperactivity; in turn, the excess activity leads to hyper-responsiveness to incoming information and quick learning. "They react more to stimulation than normal circuits. And not only do they react too much, they also learn too much," says Markram, an author of the intense world theory.
Although that sounds like it could be a good thing — it may well explain the abilities of autistic savants, who are extremely gifted in mathematics, computer science or music — in the context of decreased long-term connections between brain regions, the end result can be overwhelming. Indeed, many people with autism describe being incapacitated by sensory experiences — whether they are bright lights, loud noises or social interactions.
"At a psychological level, basically, it would mean that the autistic person could feel, perceive and learn too much. That could lead to sensory overload, as well as consequences like social avoidance or withdrawal and repetitive behavior," says Markram. Autistic people tend to use these behaviors to keeping their world the same, and to keep an overly intense world at bay.
"If you have too much noise — all that talking that's going on in the frontal lobes — it might be hard to figure out what sources of information to pay attention to," says Scott-van Zeeland. "To figure out what's going on requires these long-term connections."
Still, in the absence of other genes or environmental risk factors that lead to full blown autism, the pattern of brain connections associated with the risk variant of CNTNAP2 may carry certain advantages. "It would be really exciting to see what would be the strengths of this kind of connectivity pattern," says Scott-van Zeeland. "A lot of people carry this variation — if it weren't beneficial in some way, you would expect it to disappear."
Going forward, researchers may focus on using the new information to improve early autism interventions. Early brain development is complex and shaped by environmental signals, but a brain that is paralyzed by sensory overload misses early social cues, which may change the entire course of its development. So autistic children may have social problems not because their social brains are defective, but because sensory overload and the methods children use to cope with it prevent them from absorbing and understanding the information they need to develop socially.
Early social intervention could help prevent — or at least significantly mitigate — the disability associated with autism. "If you can identify these early brain signals and know what the problem is, you can do more intensive therapy," Scott van-Zeeland says. "A child's brain is so flexible. So instead of letting a child obsess over trains, you could spend a lot more time teaching them to pay attention to mom's face and trying to get that be rewarding. Once we find out what circuits are not automatically doing what they should, if you can explicitly tell them what they should do, that would go a really long way.”
As autism researcher David Mandell told the New York Times this week in a story on early autism intervention:
What you ultimately might be doing is preventing a certain proportion of autism from ever emerging ... I'm not saying you're curing these kids, but you may be changing their developmental trajectory enough by intervening early enough that they never go on to meet criteria for the disorder. And you can't do that if you keep waiting for the full disorder to emerge.
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BABD Newsletter - Brief - 01.11.2010
Dear All,
It goes without saying how grateful we are to have your participation in our cause. 175 members in a week is a wonderful number and a power capable of delivering a change. Of course, we'll start from small steps. We seek three subsequent aims through this cause:
1. Raising awareness for inclusion of children with High Functioning Autism, ADHD and Dyslexia into mainstream Lebanese Armenian schools.
2. Founding a Special Needs Resource Center open to all community and stakeholders.
3. Advocacy for assistance to children with High Functioning Autism, ADHD and Dyslexia in their efforts to continue their education and seek fully legible career once they graduate from the school.
BABD is a parent to parent advocacy group that aims to raise their concern for their children's future from the legal perspective of equal access to education for ALL children in our community. We also plan to organise parent support meetings whereby we exchange information on day-to-day activities, challenges and solutions. If you're a parent of a special needs child or know someone who is and is currently seeking advise and help of any kind, please do not hesitate to contact us.
*************************************************************************************
I - The week in review
Being of Armenian descent, we all have had difficulties in providing our children with education in their mother language. This is not caused merely by the school's incapacity to cope with such demands because of being understaffed or undereducated on the matter of special needs but simply because there are no textbooks in Armenian that are catered to the academic progress of such children.
This simple fact is overlooked and not addressed properly for the subject matter suddenly becomes bigger than the special needs itself. Nearly all the schools we've been to have humbly referred to the fact that even the existing educational material has long not undergone upgrade and therefore even the mainstream educational methods ought to be addressed prior to focusing resources on the special needs programs.
We have had a massive feedback this past week, from parents and special needs educators alike. There were also many messages from stakeholders in the community leadership, all of whom prefer to remain anonymous. This of course is an evidence to the general hush-hush culture of heightened cautiousness for given the utter diversity of actions and goals of community's political organisations, an independent NGO initiative such as hours doesn't quite fit within any of the existing community mechanisms - political parties, religious establishments, charity committees etc. They furthermore remain surprised over the fact that our organisation does not pursue goals for immediate fundraising but rather has set a subtle strategy entirely composed of actions to be taken to start from the most basic advocacy effort - RAISING AWARENESS.
How do we do this? What does it take? It simply takes a cause and its 176 members, plus the 700 member strong BABD page. All of us are trying to either educate ourselves on the matters of special needs inclusion or have someone near and dear who's having difficulties at school and his/her daily life due to this special needs. Ours is an open forum where everyone is virtually encouraged to simply spread the word, become more aware. BY TALKING OF SPECIAL NEEDS INCLUSION, WE HELP PEOPLE FACING THESE PROBLEMS TO BRAVELY COME FORWARD, ADDRESS THE ISSUE AND SEEK FOR SOLUTIONS WITHIN OUR COMMUNITY.
II - Actions taken
Our first achievement has been seeking and getting a meeting with Radio Sevan executives. Similar efforts are on the way with the "Azdak" and "Vana Dzain", though we haven't had a feedback thus far. We absolutely believe and reiterate hereby that the matter of special needs inclusion is most of all a parents' initiative for it is US who pay for our children's education, it is US who pay to the community institutions and it is US who form the 1/3 of parents whose children have difficulties related to autism, ADHD and dyslexia. And advocacy being our main force of action, we hereby state that ANY handbook on special needs primordially refers to the parent as a source of these children's progress and education. This is of course the case with ALL the children, but in case of special needs, this is even more so a FACT. Hence, it is the PARENTS that the community institutions ought to listen to, it is PARENTS whose requirements ought to be met. PARENTS first, and only then followed by specialists, school representatives and other stakeholders.
Radio Sevan's brilliant Executive Mme. Vera Sisserian has been the first and the very brave media rep who not only openly listened to the issues we were raising, but herself having studied and subsequently worked with special needs children was very forthcoming and on the spot she gave us her decision - DURING THE WEEK OF NOVEMBER 29, RADIO SEVAN SHALL FEATURE DISCUSSIONS ON SPECIAL NEEDS INCLUSION IN MAINSTREAM SCHOOLS. This will be done by inviting specialists, parents and teachers alike to discuss, debate, Q & A on as many as possible details on the subject.
III - UPCOMING ACTION
Nearly everyone who wrote us was wondering why we were pursuing the special needs children's education within Armenian schools if these children are doing just as well in Lebanese schools with specially catered inclusion programs set and working.
Yes, perhaps there is truth in this question when the person asking it has only met your child occasionally and seems to be taking his/her progress rather lightly.
OUR CAUSE AIMS TO ADVOCATE FOR EARLY INTERVENTION WITHIN AN ARMENIAN LANGUAGE EDUCATIONAL PROGRAM. When we add this statement to the previous paragraph, there simply is one message to all. A child raised in a primarily Armenian speaking family from day one of his/her life, has a hard time communicating with his/her own parents. This special bond between children and parents involves perception of every single aspect of that family's environment that in every nation's case is unique, has its own worldview, savoir vivre, way of doing and saying things. Now, imagine the doubled (at times even tripled) hardship of a child who not only has to deal with miscommunication in his/her language, but all of a sudden is pushed into a drastically different linguistic and psychologically varied environment.
The most awful truth about this careless perception that the child can do well in whatever school is only in reference to the ruling opinion that children with special needs are simply indifferent to their identity or have no distinct awareness of what constitutes Armenian and non-Armenian environments. This is needless to say an easy way out. We believe that every child of this community has a right to education in their native language.
To quote Mme Sisserian - "A good student is good anywhere, at any school. The real work of a real educator is when there is a challenge, when there is a gifted child who for some reason is unable to cope with the school curriculum. THIS constitutes a true educator's job".
To educate both parents and teachers alike, BABD thus pursues to open A SPECIAL NEEDS RESOURCE CENTER. To this aim, we shall hold meetings (yet again) with every community institution. Yes, indeed it's too early to talk of a sudden one-day decision to open our schools to special needs children. But it's never late to contemplate on a place to start from. Parents and educators alike can be and are a great source of knowledge. Regular meetings, access to invaluable resources, such as books, softwares, research papers are crucial for turning the general awareness into a general acceptance of the fact that we HAVE special needs children in our community who DO need to be included. Consider this the first tier of communication.
Never seizing to educate ourselves, a multiparty stakeholder group then shall be able to establish basic necessary facts:
1. How many children are there in our community and what special needs category do they belong to?
2. How to evaluate their academic and communication capabilities and skills?
3. What is the current state of special needs educators' inclusion within our mainstream schools? Can we create a base of inclusion cells within our schools based on their number?
4. What are the ways of including companies currently in charge of textbook publishing for Armenian schools?
Again, all parents and educators are welcome to drop their ideas either on our causes page or our main FB BABD page. Please keep the forum open, especially if you're an educator, please view your ideas loud and clear, so there can be an equally open feedback.
We hope this very first informative Bulletin has thus far given answers on our goals. In the meantime, we shall keep posting educational videos on the specifics of High Functioning Autism, ADHD and Dyslexia. Please forward this information to as many people as you possibly can. Always keep in mind that there is a parent somewhere who KNOWS something is "wrong" with their child but doesn't know what it is and does not know where to go and who to talk to. Our culture precludes such parents from going to a psychologist and as our anonymous story goes, there are parents who simply seize to have faith in their child even when the child is merely 2 years old. And the one charisma these children tend to have gets silenced over the years. A charisma that if nourished may well serve as an asset to our nation. Please read our BABD page for posts on famous autistic people to realise what loss we're talking about. To view the page, please click on this link: http://www.facebook.com/pages/Break-A...
We look forward to your free, independent and hopefully opinionated feedback. These are children we're talking about. By all means, stay alert and treat the subject as a matter above political or religious preferences. The earlier we facilitate for intervention systems, the bigger the returns in terms of these children's irreversible dedication gratitude to those who helped them and their parents in their darkest hour.
Kind regards,
BABD Team
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Saturday, August 14 2010
Azda'k, Azdaki'r, Azdaku'r
Can there be an answer to Autism in Armenian?
Back when Armenia was a component of USSR, and I was old enough to read, write and scroll through the shelves of Yerevan's bookstores filled in with fresh from the oven publications and books, I had developed an automatic sense of detecting any titles written by Artashes Kalantaryan. He was the most diplomatic of all writers. No, not in the sense of overtly praising the benefits of living in USSR, while covertly damning the system. But in a much direct sense, in a much needed sense. He'd write on morals and taboos, the falsehoods and virtues of our values. he'd analyze everything from an historic perspective, yet be precise in descriptions of mother-in-laws vs daughter-in-laws, appartchiks vs "ordinary" people, bus drivers vs. passengers, nurses vs. patients etc. Most of all, I adored the nearly divine decency of the humour he'd apply to his descriptions of otherwise gloomy realities of dialectic materialism wrapped onto our lives.
There was one from his days as an editor at a rather respected publication, whereby authors would come in and show their masterpieces for his approval. And he'd describe one whose only gift was perseverance without a hint of a writer's charisma. He'd come in and show a thick box file "pregnant" with a Soviet-era historic novel, get rejected, then come back with a collection of short stories, get rejected, come back with poetry and essays, get rejected, come back with felietons (a form of political satyr condoned by Soviet cultural censorship guidelines), get rejected, come back with biographies, get rejected etc... And so on and so forth until one day a miracle happened, ONE story, just one story got through. And as Kalantarian pointed out, he praised the writer saying he could from now on consider himself an amateur writer with a hope of progression.
***
The journey the Armenian community here in the Middle East and I'm sure elsewhere to the inclusion and integration of their disabled in general and their Autistic, in particular, has become a weird unasked for trial of perseverance. The Community leaders through their operative institutions of self governance are persevering in their conviction and subsequent persuasion that they're doing something for it. The parents of children with Autism are persevering in their conviction and persuasion that they're doing nothing for it. Each side is armed with a multitude of evidence proving their right - novels, essays, poems, short stories, you name it. But there is still no hint of that ONE story.
If you look at the necessities of preserving and developing one's identity when living in Diaspora, there is something romantic about this seemingly infantile state of handling institutional matters. We won't hand our Cause or sub-Causes to anyone else and keep our stuff to ourselves. When I spoke to an Armenian Catholic priest of this mis/dis/management of autism, he said, "You should understand this. Lebanon is a box. The Armenian community living in Lebanon is a box inside that box". In a way, this applies to all other countries where we live. For the Ottomans the Armenian Question must have been a giant box, then they committed the one most idiotic thing in their history - Genocide - and the big box dismantled into tinier boxes and settled box by box where there was livelihood. Post-Genocide, we did not loose our capacity to be creative, productive, industrious and work and live in our passport-lands (for the motherland is always Armenia, be that the existing one or the one we come from), contributing full scale to the progress of that country. And then, every evening once the Diasporan has finished the workday in the big box, returns home to the small box and eats the Armenian food, talks the Armenian talk even if it's in passport-land language and thinks Armenian thoughts. Any Western educated shrink, thus, would certify that we're dealing with a collective scale of multiple personality disorders. Well, in our specific case, since Arshak the Second defined the duality of being divided between the Persians and the Romans, we've been going under a more limited case of shrinkologic classification - dual personality disorder.
Our "duo" is co-transcendental... ouch... Let me explain. When in the big box, we're armed with a perfected body language and mental processing of the hosting box, e.g. the passport-land. When in the small box, it's wives ironing shirts, screaming over the kids that if 5x5=25, then 5x6 can't be anything but 30, husbands are getting mad over the scents spreading from the kitchen, full scale gossip programs of countless relatives, neighbors, friends, colleagues decorate the dinner table and we all go to bed concluding that there's no place, no country in this world good enough for us and thus, God was right in his project Heaven, for we can at least something, some place to believe in.
These two conditions that can also be compared to a very good Nordic bath - from sauna to snow and back, rarely collide. They make our exterior stronger in their dual power, our mind sharper for we're not just walking trying to solve a crossword, we ARE the crossword and we won't have anyone else try and solve us, we're a magic self-solving crossword. even the idea of this is mind-bogging enough for us to take pride in our sacred crossword puzzle, we're unlike anyone else, but so much like ourselves. And we're happy, we've been happy with this clear sense of distinction that won't have an issue cross the path out of the inner box and get into the bigger box realm and vice versa.
I was living in this shrinkologic state of mind unbeknownst to myself, in sort of a Bee Movie style perfect production capacity, contribution to the outer world without clarity of what it took. Our attitude is you can have our honey, but you can't have us. A priori, we do not expect anything good coming from the outer box and so we're unaware of it. Until autism entered our lives. It was this invisible hand holding my son and showing to me his sheer genius from one hand and his complete lack of social communication on the other.
At this point, I'm gonna throw more shrinkology on you and explain that Autism is a wide term and we're gonna try and focus (for briefness sake) on High Functioning Autism. It's not genetical, randomly affect 1 in 90 children, mainly boys and demands early medical and behavioral intervention, along with special needs education programs to be processed and progressed onto a state, whereby the child finally can express his/her thoughts more or less clearly, express his/her talents and thus make it easier to guide them in terms of further career choices, options and forms of living an independent fulfilling life.
His autism at first had me jumping inside my immediate box, away from the outer world, trying to find any hints of techniques our box of traditions, beliefs and/or knowledge would provide. Never being relevant to any major Cause defining our identity as a nation, Autism (and I suspect, many other conditions) has not only been an invisible problem unnecessary to deal with, but by its sheer destiny of being of the "inside the box" matter has always been and will be a sub-Cause, e.g. we have bigger Causes to deal with, autism can wait, eventually it'll be dealt with while our vested capitals and resources have delivered solutions to D Causes. Armenian schools ANYWHERE had no preparation whatsoever. In Armenia, this was the case partly because the Soviet period, too, had decorated us with a D Cause of achieving communism and THEN dealing with autism (a similar convenient pattern, if compared to Diaspora). But the case was all the more shocking in cases of Armenian schools in countries where Autism had been continuously researched, developed into an educational methodology and applied in mainstream schools. Meaning, I was lucky enough to be dealing with this problem while residing in Europe at the start of the Millennium. Many of you may find this comment to be a bit of a spoiled confession but I was full upset to find out that there were NO educational materials for children for Autism in Armenian. Books on Genocide survivor descendants were filling the online Armenian bookstores, books of illustrations of churches, children's books teaching alphabets, counting etc. yes, we had a lot of "inside the box" items. Moreover, there were many books praising the Armenian mother's cooking, cleaning, educating skills but there were no books guiding those mothers, explaining in full detail HOW motherhood is done on a daily basis. When you're born into an Armenian family, somehow, by the age of two, every girl is aware that they'll grow up to be mothers, good mothers, we have some kind of instinctive devotion to this awareness. We're aware of this awareness from very early on, indeed. I've known that, too.
But HOW. I kept asking, HOW do I deal with problem like Autism inside the box. And so I looked every corner of that box from inside, but not out. I went through dark periods, then thought that it'd pass, autism would pass if I just kept doing my Armenian thing of being a good, loving, singing, dancing, poetry teaching, cooking, cleaning, smiling-no-matter-what mother. And I couldn't. One day I looked so hard that bumped my brains on a thick box wall and had a huge breakdown... It lasted three months. I literally stopped sleeping, was eating veggies and fruits, had no appetite for cooking, was drinking countless bottles of water, eating countless boxes of chocolates and reading ANYTHING but autism. Reread Vardanants, didn't find answers, reread Muratsan, Raffi, didn't find anything, read Sevak, Shiraz, Charents, yes, all cool, but no hints. there was no hint of an individual reawakening causing a collective re-discovery of our identity. all these men, these great writers, these great timeless classics were all for collective re-discovery first, individual progress next... This pattern answered a lot of questions I had at the time (was busy writing a thesis on Genocide Recognition within the EU Legislative structure). yes, there IS a criminal's intent and motivation, but there is also a victim's ultimate weak point. They were all wrong, we've been taught and educated wrong... Non of them were mothers, although great many of them wrote worshipping their mothers, their sisters, at times even their wives (but usually referring to the brief period preceding their marriage). And I thought, that any of these women that became an inspiration for these authors' masterpieces, must have laughed a great deal on the childishness of what was perceived of the HOW Armenian women manage this beehive structure within a pressing locked box. they must have laughed kindly, taking pride in THEIR achievement for having contributed in such an inspirational way. But they must have laughed over a childishness that was a misperception from the writers' part.
***
Autism demands that I teach my child to everything in this life via a method that I only found in a William Saroyan novel - "Wesley Jackson's Adventures". The method is called "Count 9 items". Try this. Wherever you are, close your eyes and utter 9 items, 9 nouns. With William Saroyan, one begins with a spoon and ends up with the universe. With autism, you can't show pictures of alphabet, unless you've explained the sounds, the exercise necessary for your entire ear-throat-nose triangle necessary to produce the sound AND the big why. Why in Armenian this sound or that sound is necessarily written this way. all these questions come from a child who literally doesn't speak, does not particularly look you in your eyes, does not particularly answer when you call his/her name and in general does not care about alphabets and numbers because he has the packaged data of the universe in his head and he can understand why and how plants grow and planets move just by looking at them. Autism does not particularly care that I'm a Mother because I've given birth, it demands that I BE the Mother, DO what a mother does in such a great detail that your own life progresses more as a long notebook of cartoon character drawings than a quick collection of video shots that automatically and smoothly interchange developments of life with no particular hardships included.
And thus, three months of Armenoid struggles later, I sneaked out of the box, unafaraid, armed with my inBox system of principles, I went into the bigger box because there I could get to explain the world from spoon. I could get this individual that was my child a very progressive education, albeit not in Armenian, but strong enough to tackle every nut and bolt of his autsmness, mental and physical autismness. I'd get him from spoons to universe and make sure that he knows that by universe we mean the small box. He's from that box, he's of the box but he has no particular care whether there's a lock between the boxes. He's got no awareness of locks but is armed with plenty of keys and this is when we can confidently open a door and allow a little wind of change to come in from the outer box.
***
Does this mean, we never had any cases of autism before? No. We always had, but we're shy about it. No one openly talks about it as if it were a shame. But this only happens because there's a lack of information about it. Now in Lebanon, I've experienced the same boxed mentalities from leading Armenian schools. They did nothing to accommodate my son or any other son. Most of these children, highly intelligent, equally capable and desiring to make friends, to have a "normal" childhood are enrolled in Lebanese schools of bigger box nature. they're happy there and progressing but they're denied learning their mother tongue and their history, they're denied access to an essentially Armenian childhood. And of course they know they've been rejected.What's even worse is that the schools from the smaller box are advising and considering it norma that siblings be separated, that the "normal" ones go to small box schools and the "abnormal" to the bigger box. they may have lots of arguments to prove their point and they DO work very hard to prove their point.
The Azdak daily newspaper of the Lebanese Armenian community time to time publishes articles about autism. The last two articles were published were translated and copy/pasted from the much bigger box medias. One of them described the rates of autism cases among the newborn children in England and what do the English do to diagnose and intervene. The other one focused on horse riding as a magic cure from autism. Non of them thought to address the evident lack of even basic statistics on how many children in the Armenian community have autism, what kind of autism, what budget do we look up to for raising a child with autism or providing living and working standards for an adult with autism. Non of them talked to rejected parents and children.
So, here goes my perseverance to you - let the parents in, let us talk, hear us, together let's make sound concerns and calculations on what it takes and how much and THEN nag about lack of resources. Yes, if you ask me every case of autism, every case of disability needs AS much attention and care AS any other major Cause. For only with every single individual's true state of mind and mood may we perceive the reality of our collective goodness. Playing hide and seek with our most cherished values and hiding behind "higher" Causes is cowardice and proves that we may claim to be a proud nation but we're not knowledgeable about the physical action of holding our heads up, not in an automatic, taken-for-granted-fake video-for-film manner but in its actual slow, every detail-taken-care-off cartoon drawing manner. Once we produce this GREAT ACT, we may then have that ONE story, hence to start our journey upwards.
Thursday, August 12 2010
What's in the Name - High Functioning Autism Spectrum
A very brief yet to-the-point description of High Functioning autism from www.answers-about-autism.info .
High Functioning Autism (HFA) is the name of the condition of individuals who display some of the symptoms of autism, but who are also able to function at a level close to, or above the normal level in society. High Functioning Autism is sometimes also known as Asperger syndrome. In layman terms, those who are affected by High Functioning Autism may be labeled as being "eccentrics", "nerd", "geeks", or termed a "little professor".
The term Asperger Syndrome is sometimes used in the same sense as High Functioning Autism, but the exact difference between Autism, Asperger Syndrome, and High Functioning Autism will vary. There is a wide range of deficiencies, as well as talents found in High Functioning Autism, the precise configuration of which can vary widely between individuals.
There is a high correlation between High Functioning Autism characteristics, and those described in the Myers-Briggs INTP profile [1] description. Another theory states that Asperger Syndrome correlates to the INTJ personality type, whereas High Functioning Autism correlates to the INFJ personality type.
Unfortunately there is evidence that the diagnosis of autism, has wrongly become a catch-all diagnosis for badly-behaved children. In 2000 in the UK, the lead clinician and autism specialist at Northgate and Prudhoe NHS Trust in Morpeth, Dr Tom Berney, published a paper commenting on this. He wrote in the prestigious British Journal of Psychiatry:- "There is a risk of the diagnosis of autism being extended to include anyone whose odd and troublesome personality does not readily fit some other category. Such over-inclusion is likely to devalue the diagnosis to a meaningless label."
There may also be overlap with the label of "intellectually gifted". There is some evidence, largely anecdotal, of instances where children who would previously have been labelled "intellectually gifted" are denied entry to an advanced for-the-gifted educational program - because their case notes give them the broader "autism" label.
Social Aspects of High Functioning Autism
In general, people with High Functioning Autism tend to make fairly frequent social mistakes involving because of their inability to accurately predict someone else's thoughts, feelings or reactions to something, in the same ways as the non autistic person. They may also forget to use many of the basic social pleasantries (e.g. forgetting to knock before entering a room; or when greeted with "how are you?" they may not reciprocate by following on to ask how the other person is).
Another problem they face would be their naive understanding of social interaction may cause them to be overly trusting of all people and thus, more vulnerable to being manipulated by others. They may then be considered as lacking "common sense". This is one reason it can prove to be a major disaster if youth services departments go on to create large "treatment" groups that will place the vulnerable, and young High Functioning Autism person alongside amoral and manipulative youths, who suffer with psychopathic disorders.
The autistic person may appear somewhat removed or disconnected at times, especially when placed in situations where they experience sensory overload, or when they are placed in settings of extreme social pressure, such as during a party, or in a crowded bar. Additionally, they may make only limited levels of eye contact, even during one-on-one encounters, which can then lead to them being labelled as being "shy" by non autistics.
Unlike autism, there is no general learning disability with High Functioning Autism . The research community recognises that High Functioning Autism does not happen in people with an IQ of less than about 75 (i.e.: able to complete elementary school and live independently in modern society). People with High Functioning Autism are usually very articulate - the DSM IV says that spoken language development must be normal for a diagnosis to be made.
People with High Functioning Autism normally will like routine and order. These traits may be seen as early as childhood (e.g.: as a child, writing out a A-Z library card-index catalog for their comic book collection). They may also limit their daily choice of clothing to only a select few choices.
When a person with High Functioning Autism is interested in a particular task or subject area, they will often work on it intently. If uninterested or they lose interest for some reason, they may just ignore the task all together, or maybe try to change it to reflect one of their personal interests, or perhaps only do the "bare minimum" required to complete the task. With High Functioning Autism, the preferred method of working may be to produce a complete rough structure, or draft first, and then to focus intently on taking it through many incremental revisions until the task is completed.
