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  • Autism

    Autism and Pervasive Developmental Disorder-NOS (not otherwise specified) are developmental disabilities that share many of the same characteristics. Usually evident by age three, autism and PDD-NOS are neurological disorders that affect a child’s ability to communicate, understand language, play, and relate to others. (best described as 'mind-blindness')

    In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 2000), “autistic disorder” is listed as a category under the heading of “Pervasive Developmental Disorders.” A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms listed across three major areas:

    social interaction,
    and behavior.

    When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder-NOS (PDD not otherwise specified). Although the diagnosis is referred to as PDD-NOS, throughout the remainder of this fact sheet, we will refer to the diagnosis as PDD, as it is more commonly known.

    Autistic disorder is one of the disabilities specifically defined in the Individuals with Disabilities Education Act (IDEA), the federal legislation under which children and youth with disabilities receive special education and related services. IDEA, which uses the term “autism,” defines the disorder as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, usually evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are:
    engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

    (In keeping with the IDEA and the way in which this disorder is generally referred to in the field, we will use the term autism throughout the rest of this fact sheet.)


    Autism and PDD occur in approximately 5 to 15 per 10,000 births. These disorders are four times more common in boys than girls.

    The causes of autism and PDD are unknown. Currently, researchers are investigating areas such as neurological damage and biochemical imbalance in the brain. These disorders are not caused by psychological factors.


    Some or all of the following characteristics may be observed in mild to severe forms:

    Communication problems (e.g., using and understanding language);
    Difficulty in relating to people, objects, and events;
    Unusual play with toys and other objects;
    Difficulty with changes in routine or familiar surroundings; and
    Repetitive body movements or behavior patterns.
    Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have limited language that often includes repeated phrases or conversations. People with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information -- for example, loud noises, lights, certain textures of food or fabrics -- are also common.

    Warning signs of autism spectrum disorder and
    Pervasive Developmental Disorder

    Does not babble or coo by 12 months of age
    Does not gesture (point, wave, grasp, etc.) by 12 months of age
    Does not say single words by 16 months of age
    Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
    Has any loss of any language or social skill at any age.

    Are there other things that might be signs of autism?

    The child does not respond to his/her name.
    The child cannot explain what he/she wants.
    Language skills or speech are delayed.
    The child doesn’t follow directions.
    At times, the child seems to be deaf.
    The child seems to hear sometimes, but not others.
    The child doesn’t point or wave bye-bye.
    The child used to say a few words or babble, but now he/she doesn’t.
    The child throws intense or violent tantrums.
    The child has odd movement patterns.
    The child is hyperactive, uncooperative, or oppositional.
    The child doesn’t know how to play with toys.
    The child doesn’t smile when smiled at.
    The child has poor eye contact.
    The child gets “stuck” on things over and over and can’t move on to other things.
    The child seems to prefer to play alone.
    The child gets things for him/herself only.
    The child is very independent for his/her age.
    The child does things “early” compared to other children.
    The child seems to be in his/her “own world.”
    The child seems to tune people out.
    The child is not interested in other children.
    The child walks on his/her toes.
    The child shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
    Child spends a lot of time lining things up or putting things in a certain order.
    You are not aware of the consequences that would result (if you were granted what you desire) because what you seek might be to your detriment. (O soul) be conscious that your Master is more aware about your well-being than you are.

    ~Ibn Al-Jawzee

  • #2
    Good resource, Ebony.

    My 10-year-old was diagnosed with a mild form of Autism when he was six. I was the first person to realize that there was a disorder that explained his delays and his "oddities". He has Asperger's Syndrome:

    One of the most accurate, laymen's description that I have found is Wrong Planet Syndrome. A mother of such a child coined the phrase.

    It made sense to me, since my son has such an obsession with appliances (radios, vcr's, deep freezers - you name it, he wants to own them and learn about them). When he was four, we said he must have been born on the Planet Appliance. He didn't draw trees and trucks, he drew appliances with cords and plugs. He didn't want a super hero toy, he wanted a shop-vac to put in his "appliance store".

    Nonetheless, he is a joy.

    Please Re-update your Signature


    • #3
      some argue whether Aspergers Syndrome is a syndrome in its own right, or whether it jst describes 'high functioning' autistics

      children r a joy, regardless of hw they r :)

      You are not aware of the consequences that would result (if you were granted what you desire) because what you seek might be to your detriment. (O soul) be conscious that your Master is more aware about your well-being than you are.

      ~Ibn Al-Jawzee


      • #4
        Thats true Ebony-children are a joy regardless of how they r.My daughter is 3 and she has been diagnosed with autism spectrum disorder-she cant talk in sentences but she can say a few words like "bottle "when she wants her milk "bedtime"when she wants to go to sleep.She is really trying to talk, shes constantly babbling and singing nursery rhymes like "old mcdonald had a farm" And shes such a happy child, always smiling, laughing and full of life.She is attending speech therapy and improving everyday.But all children,nevermind what difficulties they have are SPECIAL and they bring a lot of JOY into the world and we should love them unconditionally
        Please Re-update your Signature


        • #5
          Originally posted by Ebony
          some argue whether Aspergers Syndrome is a syndrome in its own right, or whether it jst describes 'high functioning' autistics
          Yes, but whatever the label, being given a label allows the family and the professionals in a child's life somewhere to start when working toward helping the individual child.

          children r a joy, regardless of hw they r :)

          Very true.

          Here's an article that is relevant, from the child's perspective:

          Don't Mourn For Us

          by Jim Sinclair

          [This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

          Parents often report that learning their child is autistic was the most traumatic thing that ever

          happened to them. Non-autistic people see autism as a great tragedy, and parents experience

          continuing disappointment and grief at all stages of the child's and family's life cycle.

          But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal

          child the parents had hoped and expected to have. Parents' attitudes and expectations, and the

          discrepancies between what parents expect of children at a particular age and their own child's

          actual development, cause more stress and anguish than the practical complexities of life with an

          autistic person.

          Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've

          been looking forward to isn't going to materialize. But this grief over a fantasized normal child

          needs to be separated from the parents' perceptions of the child they do have: the autistic child

          who needs the support of adult caretakers and who can form very meaningful relationships with

          those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief

          is damaging for both the parents and the child, and precludes the development of an accepting and

          authentic relationship between them. For their own sake and for the sake of their children, I urge

          parents to make radical changes in their perceptions of what autism means.

          I invite you to look at our autism, and look at your grief, from our perspective:

          Autism is not an appendage

          Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal

          child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every

          experience, every sensation, perception, thought, emotion, and encounter, every aspect of

          existence. It is not possible to separate the autism from the person--and if it were possible, the

          person you'd have left would not be the same person you started with.

          This is important, so take a moment to consider it: Autism is a way of being. It is not possible to

          separate the person from the autism.

          Therefore, when parents say,

          I wish my child did not have autism,

          what they're really saying is,

          I wish the autistic child I have did not exist, and I had a different (non-autistic) child


          Read that again. This is what we hear when you mourn over our existence. This is what we hear

          when you pray for a cure. This is what we know, when you tell us of your fondest hopes and

          dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can

          love will move in behind our faces.

          Autism is not an impenetrable wall

          You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you

          can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only

          thing is, it isn't true.

          Look at it again: You try to relate as parent to child, using your own understanding of normal

          children, your own feelings about parenthood, your own experiences and intuitions about

          relationships. And the child doesn't respond in any way you can recognize as being part of that


          That does not mean the child is incapable of relating at all. It only means you're assuming a shared

          system, a shared understanding of signals and meanings, that the child in fact does not share. It's as

          if you tried to have an intimate conversation with someone who has no comprehension of your

          language. Of course the person won't understand what you're talking about, won't respond in the

          way you expect, and may well find the whole interaction confusing and unpleasant.

          It takes more work to communicate with someone whose native language isn't the same as yours.

          And autism goes deeper than language and culture; autistic people are "foreigners" in any society.

          You're going to have to give up your assumptions about shared meanings. You're going to have to

          learn to back up to levels more basic than you've probably thought about before, to translate, and

          to check to make sure your translations are understood. You're going to have to give up the

          certainty that comes of being on your own familiar territory, of knowing you're in charge, and let

          your child teach you a little of her language, guide you a little way into his world.

          And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic

          child may learn to talk, may attend regular classes in school, may go to college, drive a car, live

          independently, have a career--but will never relate to you as other children relate to their parents.

          Or your autistic child may never speak, may graduate from a self-contained special education

          classroom to a sheltered activity program or a residential facility, may need lifelong full-time care

          and supervision--but is not completely beyond your reach. The ways we relate are different. Push

          for the things your expectations tell you are normal, and you'll find frustration, disappointment,

          resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and

          with openness to learning new things, and you'll find a world you could never have imagined.

          Yes, that takes more work than relating to a non-autistic person. But it can be done--unless

          non-autistic people are far more limited than we are in their capacity to relate. We spend our

          entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function

          at all in your society, each of us who manages to reach out and make a connection with you, is

          operating in alien territory, making contact with alien beings. We spend our entire lives doing this.

          And then you tell us that we can't relate.

          Autism is not death

          Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival

          of a child. What they expect is a child who will be like them, who will share their world and relate

          to them without requiring intensive on-the-job training in alien contact. Even if their child has some

          disability other than autism, parents expect to be able to relate to that child on the terms that seem

          normal to them; and in most cases, even allowing for the limitations of various disabilities, it is

          possible to form the kind of bond the parents had been looking forward to.

          But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of

          the expected relationship with an expected normal child. This grief is very real, and it needs to be

          expected and worked through so people can get on with their lives-- but it has nothing to do with autism.

          What it comes down to is that you expected something that was tremendously important to you,

          and you looked forward to it with great joy and excitement, and maybe for a while you thought

          you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the

          thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other,

          normal children you have, nothing will change the fact that this time, the child you waited and

          hoped and planned and dreamed for didn't arrive.

          This is the same thing that parents experience when a child is stillborn, or when they have their

          baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered

          expectations. I suggest that the best place to address these issues is not in organizations devoted

          to autism, but in parental bereavement counseling and support groups. In those settings parents

          learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the

          grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their

          child is gone, forever, and won't be coming back. Most importantly, they learn not to take out

          their grief for the lost child on their surviving children. This is of critical importance when one

          of those surviving children arrived at t time the child being mourned for died.

          You didn't lose a child to autism. You lost a child because the child you waited for never came

          into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our

          burden. We need and deserve families who can see us and value us for ourselves, not families

          whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for

          your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting

          for you.

          This is what I think autism societies should be about: not mourning for what never was, but

          exploration of what is. We need you. We need your help and your understanding. Your world is

          not very open to us, and we won't make it without your strong support. Yes, there is tragedy that

          comes with autism: not because of what we are, but because of the things that happen to us. Be

          sad about that, if you want to be sad about something. Better than being sad about it, though, get

          mad about it--and then do something about it. The tragedy is not that we're here, but that your

          world has no place for us to be. How can it be otherwise, as long as our own parents are still

          grieving over having brought us into the world?

          Take a look at your autistic child sometime, and take a moment to tell yourself who that child is

          not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I

          waited for through all those months of pregnancy and all those hours of labor. This is not the child

          I made all those plans to share all those experiences with. That child never came. This is not that

          child." Then go do whatever grieving you have to do--away from the autistic child--and start

          learning to let go.

          After you've started that letting go, come back and look at your autistic child again, and say to

          yourself: "This is not my child that I expected and planned for. This is an alien child who landed in

          my life by accident. I don't know who this child is or what it will become. But I know it's a child,

          stranded in an alien world, without parents of its own kind to care for it. It needs someone to care

          for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop

          into my life, that job is mine if I want it."

          If that prospect excites you, then come join us, in strength and determination, in hope and in joy.

          The adventure of a lifetime is ahead of you.

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          • #6
            Addressing Autism Gains Momentum in the East

            By Lalitha Sridhar

            Most people relate autism to Dustin Hoffman’s eponymous portrayal of an autistic savant in the acclaimed Hollywood hit Rain Man. The reality is that autistic savants make up only one percent of the autism spectrum disorder. Experts in the field say that although the movie gives a good characterization of autism, what it shows is just a drop in the ocean. And although it is only now widely discussed, autism has never been a rare disorder and is in fact the third most common developmental disorder, more common than Down’s Syndrome.

            Typically, about 20 in a population of 10,000 people will be autistic or have autistic symptoms. Eighty percent of those affected by autism are boys. Genetic research indicates that shades of autism run in families. Autism is found throughout the world, in families of all economic, social and racial backgrounds. Research has shown that persons with this disability are like individual planets in their own orbits. The rest of the world, as perceived by them, is often like an un-tuned radio channel - fuzzy and vague, fading in and out unpredictably.

            Recognizing Autistic Children

            Autism is a disorder of the brain that causes a lifelong development disability, chiefly affecting the communication and social abilities of people. Symptoms of the condition are evident either from birth or may begin to appear after a period of normal development, but definitely take shape by the time the child is two and a half years old. Autism is known as a ‘spectrum disorder’ because the severity of symptoms ranges from a mild learning and social disability to a severe impairment, with multiple problems and highly unusual behavior.

            Mythili Chari, founder of the Institute for Remedial Intervention Services (IRIS), one of the oldest NGOs working on the subject in India , says that, "A child with autism finds it difficult if not impossible to make friends, chat and even recognize another person's feelings. Language development is affected so that the child is unable to say even single words by the time he or she is two years old, or produce phrases by age three. Finally, autism causes the child's mind to become obsessional. Autistic children pursue a topic they are interested in relentlessly and repetitively. Families find it tough to cope. Love, affection, caring, sensitivity and other emotional responses that are the bulwark of all relationships are so absent in varying degrees that parenting becomes an immense challenge."

            Autism is quite different from other developmental disorders. Unlike mental retardation, autism is characterized by an uneven skill profile. A child with autism has very inconsistent development. He/she may start to develop normally and then seem to stop; may start to talk and stop; may have good motor skills or be very good in some areas and very poor in others. It is this inconsistency in development that is important to making the diagnosis of autism. Also, while an individual having any other developmental disorder might learn in the same way as most of us do, but at a slower pace, an individual with autism learns things differently from most of us.

            What makes autism a complex and unique disorder is the characteristic of severe sensory defensiveness, that is, they perceive the world differently. They may be hyper/hypo sensitive in one or many of their senses. Therefore, people with autism tend to respond very inconsistently and differently to their environment, for example, they would not respond to a loud noise yet a drop of a pin could traumatize them. Similarly, a gentle touch could disturb them yet a firm grip may be tolerated. Inconsistency is a hallmark of autism. Persons with autism may or may not at any time exhibit the behaviors we think of as indicative of the syndrome.

            Social Intelligence

            Individuals with autism have their core difficulties in the area of communication. About 50% of them do not develop speech. Even those who have a relatively good language development do not use it effectively for communication. Individuals with autism also have difficulty in using and comprehending non-verbal modes of communication like gestures and facial expressions.

            Researchers at the Autism Research Center in Cambridge University , U.K. , used advanced brain imaging (fMRI) to show that when a normal person sees another person's facial expression, the amygdala (deep in the limbic system of the brain) responds strongly. When a person with autism looks at another person's facial expression, the amygdala remains silent. The social and emotional center malfunctions in the autistic brain. It leaves the autistic child socially isolated and detached.

            Despite the lack of ‘social intelligence’, people with autism can have any level of ‘non-social’ intelligence. Many individuals with autism spectrum disorders have done brilliantly in careers involving logical or factual work - as researchers in subjects such as mathematics, advanced computations in software applications and so on, even though the basics of social niceties might be out of their reach.

            One more area of impairment is in the way that people with autism relate to people/objects and to events in the environment. They have difficulty in initiating and sustaining relationships with their peers. It is not that they do not relate, it is that they relate in a different way. It is not that people with autism do not want to make friends, but often they do not know how. Thus it becomes critical to teach them social skills. However some social difficulties remain through out life. These social deficits are the most difficult to overcome.

            The distinctions between different conditions of the same spectrum are other hurdles that must be crossed in diagnosis, care and treatment. An Autism Spectrum Condition occurs if a child shows social and communication difficulties along with repetitive and obsessional behavior. If this is coupled with language delay, it is called autism. If retardation occurs too, it is still called autism. If there is no language delay or retardation, it is called Asperger Syndrome. If some but not all of the fundamental symptoms are present, the diagnosis would be that of ‘autistic features’. Of all these conditions, autism is the clearest to recognize.

            India and Autism

            At India ’s current population, it is estimated that there are 1.7 million autistic persons in the country. The majority of autistic people in India have not been diagnosed and do not receive the services they need. Professionals working with autism find that one of the major problems faced by parents of autistic children is the difficulty in obtaining an accurate diagnosis.

            Says Chari , "A parent may take their child to a pediatrician only to be reassured that their child is just ‘slow’. Unsatisfied, they may visit a psychologist, to be told their child is ‘mentally subnormal.’ Convinced that their child does not fit the typical picture of mental retardation, they may visit a psychiatrist, to be told that their child has attention deficit disorder, and must be put on medication to control hyperactivity. After months of sedation and unsatisfactory progress, they may again begin a cycle of searching for the correct name for their child’s problem. Some doctors may feel that nothing can be gained by a diagnosis of autism if the services are not there; yet, as more children are diagnosed as autistic and more awareness of the disorder spreads, there will be a demand for services. Schools will be forced to educate themselves if they find that more of the population they serve is autistic. Admittedly, there are not enough services to meet the needs of mentally retarded children and adults in India , let alone those who are autistic. But that cannot be an excuse to ignore the special needs of autistic children."

            Says Gita Srikanth, founder-director of We CAN (Challenge Autism Now) Trust, another NGO that works towards raising awareness and understanding of the condition, "Autism is essentially a lifelong developmental difficulty that impairs an individual’s understanding of what she/he sees or otherwise senses. Early intervention, assessment and counseling are critical. With specialized teaching and a constructive approach, people with autism can lead a meaningful and fulfilling life. It is not mental illness nor is it caused by trauma - it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment."

            Indian Schools Open Their Arms

            One of the measures recommended by professionals like Srikanth and Chari is inclusion of children with learning disabilities (covering dyslexia, hyperactivity and Asperger’s Syndrome besides the autism spectrum) in mainstream schools. Vijaya Srinivasan, Principal of the Lady Andal School , one of the pioneering institutions that has attempted this in Chennai, says, "We started a Learning Center for children with signs of hyperactivity or attention deficit disorders. Assistance is provided in various ways, depending on the situation. Also, the children selected have moderate disability. Other kids in the class become sensitive to the needs of the disabled. We found that it was not that much of a difficulty. We do have to pay greater attention to the safety and security concerns of the child, but we usually ask the parents to send a volunteer to oversee the child. Other parents were initially reluctant but after awhile they too were convinced. It has been a good experience for us. We have a hyperactive child in Class I and, if the volunteer is busy, the other children watch over him protectively and say, ‘Ma’am, he’s run out of class, let me go and get him’. I see even very young children wait at the gate to push wheelchairs and help in other ways. We can all be a little more open about including children with disabilities in general schools."

            New Therapy for Autism

            Applied Verbal Behavior is one of the latest and most effective methods used in the remediation of autism. This is a widely used, well-researched and accepted technique. Being a method that does not require sophisticated equipment or teaching aids, it appeals to parents as well as professionals. Its greatest strength stems from the fact that it can be implemented in the child’s natural environment. It also makes it easier for the child to apply his learnt skills in day-to-day living. Duncan Fennemore, who works in consultation with 35 programmes in the U.K. , Europe and Middle East , in addition to his collaborative work in 7 other projects, was in Chennai recently to conduct a 2-day workshop on Applied Verbal Therapy. He is the Director of CEIEC (the Center for Educational Intervention in Early Childhood), the first institution of its kind to be based in the U.K. He is also Training Director of the U.K.-based charity T.R.A.P (Training Resources for Autism Professionals) which is working in related areas.

            Says Fennemore:

            "Any individual can learn good behaviors and bad behaviors. Applied Verbal Behavior Therapy is as applicable to a typical child as it is to an autistic one. If I ask you to touch your nose and you touch your nose and I give you something you like, then your behavior the next time I ask you to touch your nose will be to do it. That is reinforcement. If you do what I ask you to but I don’t reward you for it, and look away instead, then the likelihood of your doing it when I ask you to is sure to have gone down. Autistic children can learn good behavior and bad behavior in this way."

            "At the workshop, we discussed the science of behavior and how it is a very lawful science. You can guarantee certain contingencies will produce certain behaviors, whether good or bad. If you can recognize what these contingencies are, you can manipulate those contingencies in order to deal with a particular behavior. And you can guarantee 100% that anyone who applies it can alter individual behavior positively or negatively."

            "The main difference between cultures is that Eastern people tend to punish more than Western people. Generally speaking, Western people would try to explain their way through their child and his bad behavior whereas, typically, an Indian parent would punish the child variously. Now, neither of those is particularly effective in the long run. What should happen is that there should be a consequence for that bad behavior and appropriate skills have to be taught to stop that behavior from happening again. If I have to throw a cup on the floor to get your attention, then that shouldn’t get me your attention. But, subsequently, if you teach me that the way to get my attention is to tap me on the arm and say, ‘ Duncan ’, then I have learnt a skill and I no longer have to throw cups on the floor. People in India tend to punish. They don’t add the good skills that must replace the bad behavior. And in the West, there is no consequence to bad behavior so it goes on undiminished. So both of them are wrong in their approach."

            "For people with autism, the challenge is how appropriate, how functional and how good their actual education is. In most special schools across the world, the education offered to autistic people is not adequate. In many areas of behavior, a lot of basic research is being done, which means we can reliably increase skills and address problems. The shortfall is happening in the implementation. That, and secondly, the medical field is made up like pieces of a jigsaw and autistic people are not there in it yet. Research in the fields of biomedical interventions, neurological disturbances, and the influence of food, is still sketchy and evolving."

            The following are broad guidelines for parents and observers, the first steps to an early diagnosis:

            Is Your Child at Risk for Autism?

            Does your 18-month-old child’s language development seem slow?

            Has he lost words that he had once mastered?

            Is he unable to follow simple commands such as "Bring me your shoes?"

            When you speak to him, does he look away rather than meet your gaze?

            Does he answer to his name?

            Do you or others suspect hearing loss?

            Does he have an unusually long attention span?

            Does he often seem to be in his own world?

            Lalitha Sridhar is a Chennai-based freelance journalist keenly interested in development issues. Your emails will be forwarded to her by contacting the editor at: [email protected]

            URGENT!!! your help is badly needed - fundraising for marriage


            • #8
              Through the eyes of autism

              19 April 2004

              Visual distortions could be the cause of autistic symptoms, according to an American expert. And a simple treatment with vitamin A might be the answer. Jerome Burne reports

              Virtually every fortified cereal packet broadcasts the message that vitamin A is vital for good eyesight. But even the most gung-ho marketing manager would pause before claiming that the vitamin can dramatically improve the symptoms of autistic children by repairing damage to their retina. However, this is precisely the claim being made by an American paediatrician, who has evidence that treating these children with the right sort of vitamin A is not only highly effective but provides valuable new insights into some of the most puzzling symptoms of this disorder.

              "Once you understand the way autistic children 'see' their world," says Dr Mary Megson, a professor of paediatrics at the Medical College of Virginia, "the fact that they don't look you in the eye and can't bear for things to be changed makes perfect sense." She emphatically rejects the widely accepted hypothesis that these children have no theory of mind (ie, no understanding that other people have their own thoughts, plans, points of view), and that they relate to other people as just another type of thing.

              Instead, she maintains that their seemingly alienated behaviour is perfectly rational. It is their way of surviving in an extraordinary and terrifying visual world, the result of damage to a protein pathway that affects the way that certain specialised cells in their retinas work. "Imagine that everything appeared to you like a some paintings by Picasso, flat and two-dimensional, with various features superimposed," urges Dr Megson, who has specialised in developmental disorders for the last 15 years. "Or think of a Hockney collage, digitally remastered with all the depth cues taken out."

              At a conference on nutritional psychiatry in London earlier this year, Dr Megson described how she has found that a proportion of her patients have only a tiny visual window on the world where things are reasonably clear and appear in 3D. All around this they only see colours and vague shapes. This makes it very hard for them to follow movement, especially the subtleties of facial expressions. Making sense of a new scene is equally challenging - hence their desperate insistence that everything should follow ritualised, predictable patterns.

              What concerns Dr Megson, like many other clinicians in this field, is the massive increase in the number of children coming to her with this sort of damage. "Since I've been practising, the number of cases has gone up from one in 10,000 to one in 600, and it may be more," she says. "There are officially 1,522 cases in the state of Virginia, but I've got 1,200 in my practice, which just covers one district."

              She is certain that vaccination is at least one of the factors fuelling the rise. But although she agrees with Andrew Wakefield's controversial ideas about the effects of the MMR vaccine on the gut, she is particularly concerned about the vaccine for whooping cough and the "pertussis toxin" it contains. The evidence that she has seen has convinced her that certain children have a genetic susceptibility that makes certain proteins in their bodies vulnerable to damage by the toxin, which can have wide-ranging effects.

              Known as "G proteins", they are found all over the body, but especially in the brain and guts, and are involved in boosting or dampening down the signals coming in from our senses (such as sight via the retina), as well as controlling such vital pathways as those for fats and glucose. The scary visual world of the children provides a close-up of how far-reaching the damage can be.

              The theory is that receptors in the brain that control the "rod" cells in the retina have been affected by the whooping-cough vaccine. Rods are the cells that convey shading and depth, and allow us to see in black and white in the dark. They are more thickly clustered around the edge of the retina. "When these children look away from you," says Dr Megson, "they are turning their eyes so that the light reflected from your face lands on the outside of their retina, where the rods still have some function."

              Controversial as her theory is, what has made her clinic in Richmond, Virginia, such a magnet for desperate parents is that it leads to a form of treatment that seems to be having considerable success. The key to getting the G-protein pathways working again is a form of natural vitamin A. "The results can be dramatic," says Dr Megson. "Within a few days, these children regain eye contact. They may start looking at their mother and speaking. Watching it happen, you get a strong sense of something being unblocked."

              It is vital to use unsaturated "cis" vitamin A, as found in cold-water fish such as salmon or cod, as well as liver, kidney and milk fat. "These are foods that children often don't get in modern diets," says Dr Megson. "Synthetic vitamin A, the sort often found in supplements and cereals, can actually make matters worse because it has to be properly absorbed. This in turn needs a healthy gut, but many of these children have damage to the gut due to food allergies and overuse of antibiotics." That is why treatment is usually supported by removing certain foods from the diet, most commonly wheat and milk, and giving probiotics - beneficial gut bacteria.

              Autistic children are also often hyperactive, they appear to be running on overdrive. If they were adult, they would be described as highly stressed, with the "sympathetic" side of their nervous system going full blast. Their pupils are frequently dilated and their heart rate and blood pressure is up. This, says Dr Megson, is the result of another one of the effects of the G-protein malfunction, which leaves a number of metabolic pathways without an off-switch.

              Just as this messes up the retinoid receptors, it also prevents the proper function of the neurotransmitter acetylcholine that controls the relaxing (parasympathetic) side of the nervous system. To get this going again, after a couple of months on cis-vitamin A, Dr Megson may give a single dose of a drug called bethanecol, which mimics the effects of acetylcholine.

              Again, the results can be dramatic. "We suddenly see these withdrawn children laugh, concentrate, show a sense of humour and talk after just 30 minutes," she says. A recent placebo-controlled study of 38 autistic children given cod-liver oil and bethanecol, showed significant improvement.

              Besides treating the damage, Dr Megson has also being attempting to detect links between the genetic vulnerability of these children and the diseases suffered by their parents. She has found that, often, a parent or close relative has one of the rare disorders caused by a genetic defect in G protein, such as night blindness, which involves damage to the rods in the retina.

              Surprisingly, the same mutation in the gene involved is also connected to a raised risk of colon cancer, and there is also a higher incidence of colon cancer among the parents - along with high levels of fats and cholesterol in their blood, and thyroid problems - all linked with faulty G proteins. "You'd be amazed at how many times I ask a parent of a child with autism if they have a dazzle effect when driving at night - a marker for night blindness - and they say that they do," says Dr Megson.

              Such findings are all part of the evidence that G-protein damage is involved, but are far too vague to provide useful guidance on their own as to which children might be at risk. For now, Dr Megson advises that parents with such factors in their medical history check the child's cis-vitamin A level with a blood test before giving a vaccine, and raise it if necessary.

              Currently, there are two places in the UK that are familiar with Dr Megson's work, and may be able to offer help with treatment. One is the autism research unit at the University of Sunderland. "Her approach is useful but not the whole answer," comments Paul Shattock, the director. "If cod-liver oil were the cure, you couldn't have autism in Norway." The unit's website features many research papers and an extensive treatment protocol based on nutrition. The other is the Brain Bio Clinic in London, which is just starting to use her approach.

              None of this has been proved, and much more work needs to be done to firm up the biochemistry. The official position is that these vaccines are perfectly safe, and that people such as Dr Megson are scaremongering. But something is going on, the number of cases is rising, and the treatment she has developed does seem to help.

              Autism Research Unit:

              Brain Bio Clinic: 020-8871 2949;



              * A new fear about the link between vaccines and autism is causing concern in the US.

              * Thimerosal, a form of mercury, is added to many vaccines as a preservative and to reduce the risk of infection in multi-use phials. It is known to be a potent neurotoxin.

              * In 1999, an American official calculated that a baby who had all the recommended vaccines at the two-monthly check-up would receive 118 times the Environmental Protection Agency's official limit for daily exposure.

              * There have been Congressional hearings about the use of thimerosal, and an action claiming damage to 3,500 children by thimerosal is currently being heard before the federal vaccines injury court.

              * Thimerosal is no longer used in American vaccines, but stockpiles of old doses containing it are still being used up.

              * Almost alone among Western nations, the UK still uses vaccines containing thimerosal. If you know to ask for a non-mercury containing vaccine for whooping cough, you will be given one. Most parents do not know to ask.

              * A report in the journal Molecular Psychiatry this month traces some of the pathways that can be inhibited by mercury. "This may lead to serious disorders that manifest themselves during childhood," say the authors, "including autism and ADHD."

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              • #9
                I have heard of an author, Temple Grandin, who writes about her experience with autism:

                Her career:


                Her story:


                An interview:


                From one of her books:


                She adapted her diagnosis to find a career that brings her happiness and satisfaction.

                I know we all hope the same for ourselves and our children.
                Please Re-update your Signature


                • #10
                  Public release date: 4-May-2005

                  Contact: Elaine Schmidt
                  [email protected]
                  University of California - Los Angeles

                  UCLA scientists pinpoint region of autism gene on chromosome 17

                  Gene affects boys only -- May explain autism's low incidence in girls

                  Autism is a complex disease caused by the interaction of multiple genes and environmental influences. As a result, scientists' previous attempts to locate a genetic risk factor have proved inconclusive. No researchers have been able to pinpoint a predisposing gene and then duplicate their efforts – a key piece of proof required for scientific validity.


                  For the first time, a team of UCLA geneticists have isolated the likely region of an autism gene on chromosome 17 and then successfully duplicated their efforts in a separate population. In an earlier discovery, the scientists were surprised to find that the gene contributes to autism only in boys, perhaps explaining why girls have a dramatically lower risk of developing the disease.

                  After twice linking the risk gene to band 17Q21, the UCLA team is now conducting DNA testing to identify the precise site on the chromosome, which will bring them closer to finding the gene mutation. This is the first step to providing better screening and potential treatments for autism.

                  Dr. Dan Geschwind, associate professor of neurology; Rita Cantor, adjunct professor of human genetics; Stan Nelson, professor of human genetics; Jennifer Stone, graduate student researcher, at the David Geffen School of Medicine at UCLA.

                  The American Journal of Human Genetics, June 2005

                  National Institute of Mental Health

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                  • #11
                    Re: Autism