Dr IWAN S’ AUTISM INFO CENTER @copyright Dr IWAN S 2010
THE NEW AUTISM INFORMATIONS
Dr IWAN S.
Private e-book special for Health Information Student and profession
NEW INFO NO.1.JUNE.24TH2010
Stem Cell Treatment for Autism – Restoring Brain
What is Autism?
Autism is a severe developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Less severe cases may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger’s Syndrome (these children typically have normal speech, but they have many “autistic” social and behavioral problems).
It used to be thought that autism is just a fate that you accept.The good news is that there are now a wide variety of treatment options which can be very helpful. Some treatments may lead to great improvement, and others may have little or no effect, but a good starting point would be the parent ratings of biomedical interventions, which presents the responses of over 25,000 parents in showing the effectiveness of various interventions on their own child.
ARI’s Diagnostic Checklist, Form E-2, was developed by Dr. Bernard Rimland to diagnose children with Kanner’s syndrome (which is also known as ‘classical autism’). Many parents and professionals have also used the E-2 checklist to assist in the diagnosis of autism spectrum disorder (ASD). You can print out, complete the checklist, and then mail it to ARI for scoring. Our staff will analyze the responses and send you a score along with an interpretation. The checklist is available in 17 different languages. There is no charge for this service.
How Common is it? For many years autism was rare – occurring in just five children per 10,000 live births. However, since the early 1990’s, the rate of autism has increased exponentially around the world with figures as high as 60 per 10,000. Boys outnumber girls four to one. The Centers for Disease Control estimates that 1 in 110 children is diagnosed with an ASD.
What is the Outlook? Age at intervention has a direct impact on outcome–typically, the earlier a child is treated, the better the prognosis will be. In recent years there has been a marked increase in the percentage of children who can attend school in a typical classroom and live semi-independently in community settings. However, the majority of autistic persons remain impaired in their ability to communicate and socialize.
ARI Webcasts – information about effective treatments and the latest research presented by speakers from around the world
info no.3 Skateboard Safe Autism
Skateboarding saves lives. That statement has been repeated millions of times because it’s plain and it’s true. Whether it serves as an escape from a life of drugs and violence, a sanctuary from a rough home life or a means of overcoming poverty, skateboarding has a way of making people’s lives better. And the most beautiful thing about people who discover skateboarding? They pay it forward. I can think of dozens of examples of skaters giving back. To name a few: There’s the Skatepark of Tampa’s Boards For Bros program giving underprivileged kids skateboards, Etnies donating thousands of shoes to downtown L.A. homeless and Deluxe Distribution donating proceeds from decks designed for special causes in their Actions REALized series.
Pike is 41, and he’s been skating for 30 years. His son, Gianni, 7, has autism. “He wasn’t developing like a typical kid; he wasn’t speaking when he was diagnosed at age 2,” Pike said. “We had a pediatrician that didn’t blow us off. A lot of pediatricians will be like, ‘He’s a boy, and he’s just developing late. Don’t worry about it.’ She put up a red flag and got the help we needed.””Speaking with Pike about his son a year or so ago really gave me a sense of what kids with autism go through, and lending a hand was easy,” Thiebaud said. Real issued an Action’s REAlized deck for autism and sold over 1,000 of them, raising $9,000 for Autism Speaks, a non-profit dedicated to autism awareness and fundraising for research into the causes, prevention, treatment and eventual cure.
For as many skateboarders as there are in the world, our community is quite small. The world got a little smaller when Pike found out that the girlfriend of Faith Skate Supply owner Peter Karvonen has a 7-year-old daughter with autism named Sasha. Pike has been Karvonen’s sales rep for 14 years now. Since both have a connection to autism, it began to click together. Before long, Karvonen’s girlfriend — Chrys Worley — and Pike had teamed to form the non-profit 501c3 organization, A.Skate, dedicated to raising awareness about autism in the skateboard community.
Autism, as defined by Autism Speaks, is “a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).” Basically, it’s like a switch is flipped in the brain and suddenly the child is unable to develop or communicate in a traditional way. The statistics on autism are staggering:
It says a lot about the mettle of these two parents to give so much of themselves for the happiness of kids across the country. I learned from talking to them that many insurance companies do not cover a penny for autism treatment. “I’ve almost gone bankrupt and re-mortgaged my house three times,” Worley said. “Insurance hasn’t helped with one thing.” “All of the money most families have with kids on the spectrum is spent out of their pocket for therapy. So buying a skateboard is not in their budget,” Pike said. To combat this obstacle, A.Skate is trying to create a grant program in which, if the child wants to continue to skate, the foundation can write a check to the local skateshop for that child to get a quality board. “One of our big things is supporting the skate industry through the grants,” Pike said. “The kid or the parent doesn’t get the check, NJ Skateshop or Faith Skate Supply or wherever gets the check. My background is in skating and surfing so my way of dealing with [this condition] was to use my experience in this business to give back and help other people, along with me and my son.”
The coolest thing about A.Skate is the campaign they introduced Monday on Go Skateboarding Day. GSD is skateboarding’s version of Valentine’s Day, a “holiday” to remind people they love their spouse, or in this case, skateboarding. This year I looked forward to GSD thanks to A.Skate. Their Go Skateboarding Day Campaign was to literally grab a kid with autism and help them participate in skateboarding. No money involved, just a spare cruiser to let a kid push around on your board. Maybe these small acts will get a kid speaking that hasn’t said a word in months.
Non-Verbal or Trouble Communicating?
A note from Karen Simmons, Founder of Autism Today
Communication was always a challenge for my son Jonny, even though he could speak. If you’re a parent of a non-verbal child with autism, I know you must have a lot of pain in your heart. Being in your shoes is not easy!
Over the years people have said “Karen, your son can speak, you really don’t know what were going through with our non-verbal children. What do you recommend for those of us who have children that may never learn to talk?” My answer until now has been, very little.
Finally though, I found a convenient device called “Go Talk”. What is really nice about this is that its easy to carry in the palm of the hand. Pictures can easily be switched out for other pictures and the voice will say the word or phrase associated with the picture. Its also similar in size and shape to a PDA or cell phone so your child will more readily fit in socially with other children. The voice will also help the child so they can begin to associate the picture with the words and may learn to speak the words.
INFO NO.5 :The Language of Music: Working with Children on the Autism Spectrum
Boston University • School of Education Journal of Education • Volume 183 • Number 2 • 2002
Autism impairs the capacity for interaction and communication, to greater or lesser degrees. But where mere words prove unavailing or insufficient, music can still succeed.
Stephen M. Shore
Stephen M. Shore is the author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. He holds a master’s degree in music education and is completing a doctorate in special education, with a focus on autism. Diagnosed as severely autistic and beyond the reach of professional interventions, he was the beneficiary of intensive music-based and other therapies by his parent; he brings those personal experiences, as well as his academic training, to his work with individuals on the autism spectrum around the world. He also teaches special education at Lesley University.
Zack was five-and-a-half when I first met him. His diagnosis was Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), along with apraxia of speech. Many professionals consider autism to be a spectrum disorder ranging from severe to light. At the severe end is what we generally think of as autism: a withdrawn, nonverbal child sitting in a corner, rocking, hand-flapping and possibly exhibiting self-abusive behaviors. A lack of awareness of the relationship of the body to the environment makes it difficult to perceive distant objects or discern where their body ends and the environment begins (Miller & Eller-Miller, 1989, 2000). This is why many children with autism may not respond to a verbal request but suddenly become aware of your existence if you touch them. Children diagnosed with PDD-NOS are slightly less affected by these problems, may have more understanding of language (receptive language ability) and perhaps a few words they can speak (expressive language ability).
Speech will probably never be Zack’s primary mode of expressive communication. He is nonverbal, except for about five words. Individuals with autism have difficulty with expressive verbal communication due to the neural setup (or perhaps mis-setup) in their brain, and for Zack, the pathways from the brain to the muscles for speech are also miswired. His father, I believe, is also somewhere on the autistic spectrum. Initially resistant to this possibility, Zack’s father now recognizes his own autistic tendencies and believes that he was on the autism spectrum as a child, if not still on it at the lighter end.
My first meeting with Zack was uneventful. I chose a set of tom-toms and a cymbal, while deciding against a snare drum because it creates too many complex high-pitched sounds. (I was wary about the cymbal for the same reason but took the risk.) I played the piano while his mother attempted to get him to beat time on a drum using drum sticks. While on task, which was about 10 percent of the time, Zack beat the drums in a musically sensitive way. What he did with the cymbals was fascinating: instead of bashing them with the sticks and making a horrendous sound, Zack gently scraped the drum stick across the cymbal to make a soft sound. When I played the piano, Zack would remove my hands from the keys and play the first three white keys on the left over and over. “OK Zack” I thought, “you play the piano and I’ll play the drums.” When I played the drums, he would also remove my hands from it. Zack’s mother explained that he did not like anyone else to play an instrument, not just me. Frequent requests by Zack to go to the bathroom appeared to be an escape mechanism.
The three following meetings went similarly, with little meaningful communication between Zack and me. We each did our own things, side by side, in the same room. Such parallel actions are a common trait of autistic play. Zack seemed to have no idea of what I wanted him to do.
Frustrated, I talked with his mother. The parents of a child spend more time with him or her than any therapist or doctor can. They know their child’s preferences, dislikes, strengths, and weaknesses. Zack’s mother came up with the idea of using an activity board and a time board. An activity board contains a Velcro strip, to which one can attach pictures of various activities; an additional square with the words “do this” is placed below the picture of the initial task. A time board is fashioned in a similar way, but with the numbers 1, 2, and 3, and a sign for “all done.”
The tasks were broken down into tiny steps: picking up the stick, tapping the drum four times, stopping, and putting the stick down. Suddenly Zack demonstrated his ability to understand and do as I had asked. Mirroring what I did, he picked up the stick, tapped the drum four times, and put the stick down. I communicated with Zack! The activity and time boards visually communicated to him exactly what was expected, and the tasks were broken down into discrete portions that he could understand.
Zack was very happy during that session, giving me hugs and generally showing great pleasure. There were many fewer trips to the bathroom. Like all of us, when Zack understood what was expected and was able to do it, he overflowed with infectious happiness.
Sam is a 12-year old boy with Asperger Syndrome. People with High Functioning Autism (HFA) and Asperger Syndrome (AS) are considered to be at the lighter end of the autism spectrum, are often very verbal, and commonly average to above average IQs. For example, instead of being nonverbal, the communication challenge may present itself in carrying on monologues about their favorite interests and not perceiving the nonverbal cues, such as the listener looking at the watch, that it is time to stop. However, no matter where the individual with autism lies, there are still challenges in communication and social interaction, restricted interests, and repetitive motions (APA, 2000) as well as a degree of sensory integration dysfunction (Smith-Myles, Cook, Miller, Rinner, & Robbins, 2000; Huebner & Dunn, 2001).
Sam had recently been rejected from a private school specializing in Asperger Syndrome for being “too low functioning.” His mother, a professional musician, knew Sam had much musical talent but had yet to find anyone who could teach him how to read music. At our first meeting, she also expressed concerns about the difficulties Sam would begin to face as he entered adolescence.
As with all the children I work with, I requested that a parent (or significant caretaker) join in the lessons. Not only are parents the experts on their child. The lessons give them another way to relate to their child, and they can do additional work with the child between lessons. Occasionally, though, the presence of the parent distracts the child from learning. In these cases I start by working only with the child and then gradually involve the parent.
In my first lesson with Sam I made gridlines on a notebook-sized piece of paper, resulting in a 7-row by 10-column matrix.
After placing a few A’s on the first line, B’s on the second, down to G on the last line, I asked Sam if he would like to continue. Eager to do so, he quickly took the paper and started filling in the blank spaces with letters. Many people on the autism spectrum have a strong need for order and completion. A piece of paper that looked like this…
… soon looked like…
Sam’s need for order and completion enabled him to complete an assigned task, and in the process work on fine-motor control and penmanship. Arranging his environment to take advantage of this characteristic worked much better than treating this need for order and completion as aberrant behavior.
Later on during the lesson, I started cutting the individual squares from the piece of paper and then passed the job over to an eager Sam. While he worked on this project, I drew a treble clef and staff on a larger piece of paper along with a lighter dashed line for middle C. Then I drew a B on the middle line and asked Sam if he knew where C went. He responded with an anxiety-filled no! I drew the letter in the space above the B. A query about where D belonged elicited the same response. I now asked if Sam could just guess where the letter D might go. Now he answered correctly, and I had him writing the letters in the right places on the staff. With the letters placements marked out Sam was now able to place those lettered squares he previously cut out onto the staff in the right locations upon my request.
Soon we were spelling words such as “bag, dad, eat, and ace,” followed by simple songs such as “Twinkle, twinkle little star,” and “Mary had a little lamb” which I then played on a musical recorder.
Shortly thereafter we ran out of space on that sheet of paper and it was time to make another sheet of staff paper. Sam’s anxiety rose dramatically at my request that he draw the staff lines and the treble clef this time. However, his reluctance melted away just as quickly when I offered him assistance in drawing.
During the second lesson we progressed to writing the note letters on yellow Post-It notes and sticking them on both the staff paper and the piano keyboard. As Sam began to play “Hot Cross Buns,” at first with the yellow stickies bearing note names and then without, his mother was so overwhelmed with emotions that she broke down in tears. Sam looked over at her and with just a bit of nudging from me gave his mother a big hug. Who said that those with Asperger syndrome are emotionless?
It appeared that Sam was very anxious about failing at tasks. When he understood that he was in a safe environment without penalties for making mistakes, he did very well. I suspect that Sam’s behavioral challenges in school were a result of not feeling safe academically. During my first lesson with Sam much of the conversation centered on his concern for what an F grade meant and that it was not good to get such a grade. But the next time I saw Sam, there was no mention of grades.
Sometimes Sam would immediately reject a request with “no!” only to commence the task a few seconds later. Perhaps his “no!” was in reality a bid for more processing time. Other than easily being overwhelmed with anxiety over failing, Sam seems to enjoy the continuing sessions and is a pleasure to work with.
By placing the notes on this staff in this manner Sam learned how to read music and apply it to a piano keyboard. The difference between this approach and traditional music education is that the primary goal of decoding musical notation was incidental to the activity from Sam’s point of view. In other words, a more traditional way to teach music would involve spending a lot of time sitting in a chair, explaining and showing Sam the names for the lines of the staff, notes, and their relationships. Using a kinesthetic approach engaged Sam in the creation of his own learning materials, which served to reinforce the physical activities of putting the notes in the right place on the staff, followed by placing them on the piano keyboard. For people on the autism spectrum, it seems important for the physical aspect of the body to be in order before attending to the emotional and cognitive aspects. Additionally, by assisting in the creation of his own resources Sam probably felt ownership of the learning materials and the activity. I was able to work with him not only on music, but on communication, taking turns, and fine-motor control.
When the time comes for Sam to get his first piano book, he will have a good background in the musical concepts presented in the text, having already ascended the initial learning curve involved in reading, understanding, and converting notation to music on the piano keyboard. He also now has a skill that will help him to interact with others. Perhaps the school that rejected Sam was too low functioning for him.
For some children music is the means of communication and developing a relationship. For others, less severely affected, music can be the medium for enhancing verbal communication. One child I worked with, while having no functional communication, had a storehouse of holiday and children’s songs in her head, as I found out one day when I didn’t play the last note of a song. Not only did she say the correct word, she sang it at the right pitch. With limited verbal children of this nature, it is often possible to get them to supply the missing words to a song they know by suddenly stopping the song and accompaniment at points of maximal tension. These places of “maximal tension” (Miller & Eller-Miller, 1989, p. 65, 93) occur during the last few notes of a cadence. An example would be to sing “twinkle, twinkle, little…” and wait for the child to fill in the missing word “star.”
Another person I worked with used facilitated communication (FC). FC depends on another person providing arm or wrist support to someone typing on a keyboard or touching pictures on a communication board. This does raise difficulties in separating the intentions of the person being helped from those of the helper. But be that as it may, when I supported this person’s arm to play a piano keyboard, he was able to sing, indeed sing well, old songs he must have heard as a child. This seemed to be the only way that he could sing these songs.
With one particular child with Asperger syndrome, all of my communications are sung. If I mistakenly lapse into a typical conversational tone, he loses focus, engages in self-stimulatory activities, and drifts away. The music helps to organize verbal communication skills that already exist. And by holding the child’s interest, I can turn the sessions into fairly typical music lessons.
During the first session with this child, I created a system where the child asked me for pieces of paper that had the letter names of the notes. Once this series of events was internalized, I expanded the routine by having him place the notes on the appropriate place on the music staff. This system was expanded further by having him draw a circle on the staff where the note belonged and write in the letter of the note. Then he would give the note to his mother. Fine motor problems were present, and drawing a circle first helped confine where the note should go. Asking him on which space or line the note should go on (as opposed to a generic “Where does the note go?”) also helped. The system was expanded yet again by having the child guess which note I had in my hand. After guessing correctly he then had to write the note on the staff before receiving the piece of paper. We then took turns with his holding the notes, with either his mother or me having to guess which note he had in his hand. When it came time for me to write the note in the staff I would ask him in a singing voice on which line or space it went. Other parts of the session were spent in imitative drumming, and later, work on the recorder. I made certain that we took turns in leading the imitation. This was a good activity to do when he seemed to be fading away and losing focus. His mother quickly caught on to our activities; she participated very well in the session, and we all had a pleasurable experience. The child has a lot of musical ability and using the Miller Method (Miller & Eller-Miller, 1989; Miller, 2000), he was taught to play the recorder and later the piano, which he now plays well.
With the child that already plays an instrument, I will introduce myself into his world by sharing the instrument via turn taking. When I play the instrument the child accompanies me on percussion. Then we will switch roles. The turns start out short and gradually lengthen to where I work on other issues such as verbal skills, writing, and motor control as needed. To establish equality between us, I must also take my turns doing anything I require of him or her. I too, for example, need to ask for permission to use the keyboard if the child is already using it. Music can also be used to organize behavior when working with a group of children, by having them walk or otherwise move to the rhythm of the music. Often I will have them march in a circle as I play music on a keyboard. With the help of aides, I will have the students stop when I stop playing and continue when I resume. When the children understand when to stop and start, I will turn this into a game similar to “musical chairs” where the person who stops last is “out” and has to sit down. Realizing that it is unreasonable to expect these children to sit still with their hands folded while the game plays itself out, I give them a shaker — but not before they ask for it and identify the piece of fruit the shaker represents, if appropriate.
The worst possible thing, which I have too often seen, is children sitting in a circle around a large instrument with nothing to do while they wait to take a turn on the instrument. Typically, the children fall into a disorganized mass of self-stimulatory and challenging behaviors. This situation, caused by failing to engage all the children in a classroom, is entirely preventable.
For the child at the high-functioning end of the autism spectrum, the school band may or provide an important avenue for development. The trombone requires a good kinesthetic sense of where one’s arm is in order to place the trombone slide in the right place for a note to be in tune. Other instruments, except for the stringed ones, require less ear-to-arm coordination as the pitches are obtained with the assistance of keys or valves. The French horn, however, demands much coordination of the embouchure. Percussion may be another avenue. If complex rhythms present a challenge, the bass drum may be a good choice as the musical patterns are relatively simple.
Additionally, the bass drum with its low and relatively simple sound waves is often easier for a person with sound sensitivities to handle. Finally, being at the rear of a potentially cacophonous musical ensemble may be of help, as it is less noisy there.
Location in the ensemble may have to take sensory sensitivities into account. If a student with autism insists on playing a certain instrument and it is clear that there will be problems with sound sensitivities, allowing the child to sit in a different location may be easier than rearranging the ensemble in a non-standard manner. I skipped many jazz band rehearsals in high school because the director was unwilling to let me sit elsewhere than right in front of the blaring trumpets. In addition to the purely musical benefits, playing in an ensemble is good for working on cooperation with others, coordination, and a sense of accomplishment.
Music has many benefits in working with learners on the autism spectrum. Music provides an alternate means of communication for those who are nonverbal, and for others it can help to organize verbal communication. Music can improve self-esteem, as the child is given an activity he or she can potentially excel in. Finally, playing a musical instrument gives persons with autism a typical means for engaging in social interaction in school and in the community, centered on their strength.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders of the American Psychiatric Association (4th. ed., Text Revised). Washington, DC: Author.
Huebner, R. & Dunn, W. (2001). Chapter one: Introduction and basic concepts. In Autism: A sensorimotor approach to management. Edited by Ruth A. Huebner. Gaithersburg, MD: Aspen Publishers. P. 3-40.
Miller, A. & Eller-Miller, E. (1989). From ritual to repertoire: A cognitive-developmental systems approach with behavior-disordered children. New York: Wiley-Interscience.
Miller, A. (2000). Chapter 15. The Miller Method©: A Cognitive-Developmental Systems Approach with Children Having Body Organization, Social and Communication Disorders. In Guide to Best Practices (Eds) Greenspan and Wieder, Interdisciplinary Council for Developmental Disorders, Unicorn Foundation.
Schlaug, G., Jäncke, L., Huang, Y., Stagier, J. and Steinmetz, H. (1995). Increased corpus collusum size in musicians. Neuropsychologia, vol. 33 (8), p. 1047-1055.
Shore, S. (2003). Beyond the wall: Personal experiences with autism and Asperger Syndrome, 2nd ed. Shawnee Mission, KS: Autism Asperger Publishing Company.
Smith-Myles, B., Cook, K., Miller, N., Rinner, L., & Robbins, L. (2000). Asperger Syndrome and sensory issues: Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing Company.
info no 6
One More Time – this is your opportunity to obtain this collection of teaching tools.
These are the Best Communication Tools For Teaching A Child with Autism, Aspergers, PDD-NOS, Speech & Language Delays that We’ve Seen.
#1 – QUESTION SERIES – IN THE HOME
40 Laminated Photo Cards Size: 5″x3.5″
Example Front of card Example Back of card
Other picture cards in this sequence:
(1 of 5) Where do you take a bath? In the bathtub
(2 of 5) Why do you wash your hair? To make it clean (pictured above)
(3 of 5) When do you rinse your hair? After you shampoo it
(4 of 5) What do you dry yourself with?
(5 of 5) Which one says quack? (bath toys depicted)
Why do I need these?
Always a best seller! Your student will understand and answer all the “WH” questions. “WHAT”, “WHEN”, “WHERE”, “WHY” AND “WHO”. This unique system gives excellent results! Children are finally able to make sense of “WH” questions using these expertly designed question sequences. Stand back in amazement as your child begins to answer questions about all the things we do at home.
What’s in th is pack?
Excellent quality laminated photo cards for teaching children question comprehension. The back of each card clearly teaches children how to answer questions with these specifically designed question sequences. Examples in this pack are taking a bath, eating breakfast, brushing teeth, playing hide and go seek and baking cookies. This pack has a track record of success!
Who benefits from this pack?
These cards are perfect if you are teaching a child with autism, pdd nos, speech and language delays or Aspergers. Perfect pack to teach children question comprehension. Suggested methods of use are included in the product.
“The Question Cards are the best one’s I’ve ever worked with. I can’t say enough good things about them.”
– Rita NJ
info no 7
Dietary Supplements and Herbs
The following excerpt is taken from Chapter 7 of Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, copyright 1999 by O’Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.
- Enzymes and sulfates
- Essential fatty acids
- Herbal neurological remedies
- Herbal antibiotics
- Evaluating supplement claims
Dietary supplements and herbal remedies are big business these days, thanks to articles and books touting the benefits of everything from garlic to herbal antidepressants. Here are some that you may hear about in relation to pervasive developmental disorders.
Several minerals are essential for optimal health. Some are also necessary for utilizing certain vitamins.
- Calcium is important for the regulation of impulses in the nervous system and for neurotransmitter production. However, excessive levels of calcium (hypercalcinuria) can result in stupor and have been reported to occur naturally in some autistic people.
- Magnesium lowers blood pressure and is also important for the regulation of impulses in the nervous system and neurotransmitter production. If you are supplementing with vitamin B6, you will need to add magnesium as well.
- Iron (ferrous sulfate) deficiency in infants can inhibit mental and motor-skills development. Most children do not need an iron supplement, however, and too much iron can cause digestive and elimination problems. Adult women and some older adults may need to add a small amount of iron to their diet in supplement form.
Enzymes are produced in the human digestive tract to digest various types of food. Protease acts on protein, amylase on carbohydrates, lipase on fats, pectinase on pectins (found in some fruits and other foods), and cellulase on fiber.
Other enzymes are produced to detoxify the body. One study, and some subsequent clinical research, has shown that many people with autism have lower than normal detoxification enzyme activity.1 This activity, which relies on a steady supply of sulfate, is essential for maintaining the GI tract’s mucous membrane and for moving toxins out of the body through hydrolation. If the mucous membrane in the gut is in good shape, the brain will be protected from a buildup of phenolic compounds, which can interfere with neurotransmission. If it is not, nervous-system problems can ensue. 2
Some people with a documented sulfation problem take the enzyme methyl-sulphonyl-methane (MSM, or sulfur), which they believe may help them produce the sulfate. It is hard to digest, however. In addition, commercially available MSM is derived from dimethylsulfoxide (DMSO), a substance that has been touted as a boon for so many conditions that one might rightfully be cautious about trying a derivative.
Others have added the amino acid N-Acetyl-Cysteine (NAC), which is also said to have antispasmodic qualities. Another recommendation is taking frequent Epsom salts (hydrated magnesium sulfate) baths. Neither of these approaches is proven to work, but the baths are certainly relaxing and harmless, and some patients do seem to improve as a result. For those who would like to try the Epsom salts approach, one parent who achieved positive results with her child (reduced oppositional behavior and improved language skills) recommends using one and a half to two cups of Epsom salts per daily bath. “Sulfur (Epsom salts) improved socialization,” says Holly, mother of three-year-old Max (diagnosed PDD-NOS).
Researchers have noted that dairy and gluten digestion difficulties would be expected in people with low sulfation, lending credence to the gluten-free/casein-free diet approach for these individuals.
Food items that are high in phenols might also be removed from the diet with beneficial results. Among the many phenols are tannin, which gives tea and persimmons their tang; quercitin, found in green beans and rhubarb; and coumarin, found in cabbage, radishes, and spinach. Other items high in phenols include apples, grapes, avocados, and other fruits; some artificial food colorings; many spices, such as cloves and sassafras; some preservatives, particularly the ubiquitous BHA and BHT; some herbs used in antioxidant compounds and teas, including grapeseed oil and comfrey tea; chocolate, coffee, and red wine.
Phenols are also used in many manufacturing processes, cleaning products, insecticides, plastics, and chemical compounds. These products and their fumes should be avoided by people with extreme sensitivity to phenols.
The essential fatty acid (EFA) linoleic acid and its derivatives, including gammalinolenic acid (GLA), dihomogamma-linolenic acid (DGLA), and arachidonic acid (AA), are also called omega-6 fatty acids. These substances come from animal fats and some plants. Another type of EFAs, omega-3 fatty acids, are found almost exclusively in fish oils. As the “essential” in their name implies, these substances are needed to build cells and also to support the body’s anti-inflammatory response. They are the “good” polyunsaturated fats that improve cardiovascular health when substituted for the “bad” saturated fats.
The heart and blood vessels aren’t the only beneficiaries of EFAs, however. People with autoimmune diseases that involve the nervous system say EFAs are very helpful in reducing symptoms, and there is some research to back them up. EFAs appear to help the GI tract resist and repair damage, probably by restoring the lipid cells. Recent research in psychiatry has even found that omega-3 fatty acids can act as a mood stabilizer for some people with bipolar disorder. Researchers believe that a proper balance between omega-3 and omega-6 fatty acids is also important for optimal health.
- Evening primrose oil (EPO) is one of the best EFA sources around, and has become a very popular supplement as a result. Other plant sources for omega-6 fatty acids include borage oil, flax-seed oil, and black current seed oil. The omega-6 fatty acids in evening primrose oil have been reported to lower the threshold for frontal-lobe seizures, however, so people who have seizures should exercise caution. All are available as gelatin caps.
- Efamol and Efalex are brand-name EFA supplements made by Efamol Neutriceuticals, Inc. Efalex was specifically created to treat developmental dyspraxia in the UK and is widely touted as a supplement for people with ADD or ADHD as well. Efalex contains a mix of omega-3 fish oil, omega-6 EPO and thyme oil, and vitamin E. Efamol, marketed as a treatment for PMS, combines EPO; vitamins B6, C, and E; niacin zinc and magnesium. Both of these commercial EFA supplements are now available in the US and Canada as well, and can be purchased by mail order. Unlike many supplements manufacturers, Efamol adheres to strict standards and also sponsors reputable research.
- EicoPro, made by Eicotec, Inc., is another brand-name EFA supplement you may hear about. It combines omega-3 fish oils and omega-6 linoleic acid. Eicotec is another supplements manufacturer known for its high manufacturing standards.
- Monolaurin is made by the body from lauric acid, another medium-chain fatty acid that is found in abundance in coconuts and some other foods, including human breast milk. It is known to have antibacterial and antiviral properties. Monolaurin may be the active ingredient in colostrum, the “pre-milk” all mammals produce to jump-start a newborn’s immune system. Cow colostrum is actually available in supplement form in some areas.
- NutriVene-D is a supplement, created for people with Down’s syndrome, that mixes EFAs, vitamins, and other substances.
It’s great if you can get your EFAs in food. Low-fat diets are part of the reason some people, especially those who are trying to lose weight, may not get enough. Many cold-pressed salad oils, including safflower, sunflower, corn, and canola oils, do contain EFA. When these oils are processed with heat, however, it may destroy or change the fatty acids. Oily fish are another great source, although, again, cooking may be a problem (and not everyone is a sushi fan).
It is possible to have lab tests done that can discern EFA levels.
Our son’s essential fatty acids were abnormal. Some were too high and others too low. His iron and copper levels were high. Supplements include evening primrose oil, laktoferron, many vitamins, etc. Our son’s supplements cost about $250 per month. –Joe, father of seven-year-old Kyle (diagnosed PDD-NOS with autistic features)
Diabetics may experience adverse effects from too much EFA, and should consult their physician before supplementing with EFA products.
Dimethylglycine (DMG, calcium pangamate, pangamic acid, “vitamin B15”) is a naturally occurring amino acid that may help some people with autistic spectrum disorders with speech production, increased stress tolerance, seizure reduction, and immune-system strengthening. Studies have been done in Russia and Korea with positive results for between half and 80 percent of the children given DMG, although they were not double-blind studies. New research results about the efficacy of DMG for people with autism are expected to be released soon.
We have only used DMG for speech, and B6/magnesium. We are seeing improvements in both Nicole’s articulation and in her ability to put sentences together. She has gained quite a few new words, and is attempting to place them in short sentences, whereas before she only used single words and more of a pull-and-point method. She definitely is trying harder to “say the words!” –Robin, mother of five-year-old Nicole (diagnosed mild autism)
DMG changes the way your body uses folic acid, so you may need to supplement it with that vitamin. Increased hyperactivity may result from a lack of folic acid when taking DMG.
Melatonin (MLT) is produced by the pineal gland and is responsible for helping the body maintain sleep and other biochemical rhythms. Studies have shown a deficiency or aberrant production of this hormone in autistic subjects, 3 and indeed, at least half of all people with autism have sleep disorders. Melatonin supplements given about half an hour before bed may be useful for addressing these problems. The effect may not be lasting, however. “Using melatonin for sleep worked awesome at first; now it is iffy,” says Lesley, mother of three-year-old Danielle (diagnosed PDD-NOS).
As the name indicates, probiotics are intended to counteract the harmful affects of antibiotics. As most people who have taken a course of penicillin know, these valuable medications can cause digestive distress even as they heal infection. Probiotics are substances that attempt to restore the friendly intestinal cultures that help us digest our food. Among other things, these cultures (and other probiotics) keep the growth of Candida albicans yeast in balance.
Commercial probiotic supplements may combine a number of substances, sometimes including digestive enzymes as well as helpful bacteria, garlic, and the like.
- Lactobacillus acidophilus, Bifidobacterium bifidum, and Lactobacillus bulgaricus are friendly bacteria more familiar to most of us as the “active cultures” found in some yogurts. Yogurt itself is a good probiotic for those who eat dairy products.
- Soil-based organisms (SBOs) are microbes found in organic soils that are believed to help the body produce important enzymes. Some people believe that modern food-processing techniques have left people deficient in these, so they take SBO supplements. These are increasingly added to probiotic supplements. No information about benefits of use by people with PDDs is available at this time.
- Garlic is said to be active against yeast in the digestive tract. You can swallow whole cloves raw or take it in a supplement.
- Caprylic acid is a fatty acid said to be active against yeast in the digestive tract. Medium chain triglycerides (MCT oil, also called caprylic/capric triglycerides) are a liquid source of caprylic acid.
- Biotin, a vitamin related to the Bs, is normally produced by friendly bacteria in the digestive tract. Replenishing these flora should ensure enough biotin, but some people do choose to take it directly.
Octocosanol, usually derived from wheat germ, is supposed to increase stamina, reduce cholesterol, and address neuromuscular deficits. It appears on some lists of supplements that may reduce autistic symptoms, but its method of action is unknown, and it doesn’t seem to have much of a track record with parents.
Lecithin (phosphatidyl choline) is a phospholipid found mostly in high-fat foods. It is much ballyhooed for its ability to improve memory and brain processes. Lecithin is necessary for normal brain development; however, double-blind studies of patients with Alzheimer’s disease did not substantiate claims that it can help people recover lost brain function.
However, it’s possible that increased amounts of lecithin may be one of the keys to the ketogenic diet’s success in some cases of hard-to-treat epilepsy. Some people with epilepsy have also reported reduced number and severity of seizures from taking lecithin as a supplement. It is possible that extra lecithin might be needed to rebuild damaged myelin protein.
There’s no hard evidence that lecithin is a good idea for people with autism, but it does not appear to cause harm, and there are some logical reasons to think it might help–especially for patients who have seizures or who test positive for anti-MBP, the autoimmune agent believed to destroy myelin basic protein.
Lecithin is oil-based, and it gets rancid easily. It should be refrigerated. Lecithin capsules are available, but many people prefer the soft lecithin granules. These are a nice addition to fruit-juice smoothies, adding a thicker texture.
Choline is one of the active ingredients in lecithin. It is needed by the brain for processes related to memory, learning, and mental alertness, as well as for the manufacture of cell membranes and the neurotransmitter acetylcholine.
Inosital is one of the active ingredients in lecithin. It may help in cases of nerve damage and is required by the neurotransmitters serotonin and acetylcholine. Clinical studies have indicated that inositol supplements may be helpful for some people with obsessive-compulsive disorder,4 depression, and panic disorder.5 Benefits specific to autistic spectrum disorders have not been officially documented.
Quite a few herbs have been used to treat neurological disorders through the ages. These substances are referred to as nervines, and some may prove useful for treating specific symptoms associated with autistic spectrum disorders. Of all the herbal remedies, this group of plant extracts are among the strongest, and the most likely to cause serious side effects.
- Aloe vera gel is sometimes recommended for GI tract problems. It’s a traditional remedy for ulcers. It has anti-inflammatory (steroidal), hormonal, antioxidant, laxative, and other effects. Many people find it hard to take internally.
- Black cohosh (Cimicifuga racemosa, squaw root), a nervous system depressant and sedative, is often used by people with autoimmune conditions for its anti-inflammatory effects. Its active ingredient appears to bind to estrogen receptor sites, so it may cause hormonal activity.
- Chamomile is a mild but effective sedative traditionally used to treat sleep disorders or stomach upsets.
- Damiana is a traditional remedy for depression.
- Gingko biloba, an extract of the gingko tree, is advertised as an herb to improve memory. There is some clinical evidence for this claim. It is an antioxidant, and is prescribed in Germany for treatment of dementia. It is believed to increase blood flow to the brain.
- Gotu kola is a stimulant sometimes recommended for depression.
- Licorice is not just for candy or sore throats–it boosts hormone production, including hormones active in the GI tract and brain.
- Passion flower is recommended by some herbalists for depression, anxiety, and seizure disorders.
- Sarsaparilla, like licorice, seems to affect hormone production as well as settling the stomach and calming the nerves.
- Skullcap, an antispasmodic and sedative, is found in both European and Ayurvedic herbals. It has traditionally been used to treat tic disorders and muscle spasms, as well as seizure disorders, insomnia, and anxiety.
- St. John’s wort (hypericum) has gained popularity as an herbal antidepressant. It has the backing of a decent amount of research, but, as noted in Chapter 5, Medical Interventions, those choosing to use this remedy should follow the same precautions as with SSRIs and MAOIs, two families of pharmaceutical antidepressants. It can cause increased sensitivity to light. It is available by prescription in Germany, where it is the most widely used antidepressant.
- Valerian is a strong herbal sedative. It should not be given to young children.
Several herbs appear to have antiseptic, antiviral, antifungal, or antibiotic properties. Obviously, if these substances are active, they should be used carefully and sparingly, despite the claims of certain manufacturers who encourage daily use for disease prevention. Those who prefer herbal remedies might want to try cat’s claw and grapeseed oil, both mentioned in the previous section on antioxidants, or one of the following:
- Bitter melon (momordica charantia), an antiviral from the Chinese herbal pharmacopoeia, is the plant from which the active ingredient in some protease inhibitors (the powerful drugs used to combat AIDS) is derived.
- Echinacea purpurea, another herbal antiseptic, also dilates blood vessels and is said to have antispasmodic qualities as well.
- Goldenseal, an alkaloid isoquinoline derivative related to the minor opium alkaloids. Its active ingredient, hydrastine, elevates blood pressure. This is a very strong herb with antiseptic properties when taken internally or applied topically in powder or salve form. It acts on the mucous membranes of the GI tract when taken internally.
- SPV-30, derived from the European boxwood tree, is a fairly new item in this category. It apparently includes some antiviral and steroidal (anti-inflammatory) compounds, and has become very popular among people with AIDS as an alternative to pharmaceutical antivirals.
Sphingolin is a glandular supplement made from cow spinal-corn myelin, repackaged in pill form. Some practitioners recommend it for children who have tested positive for myelin sheath proteins in the bloodstream. It is used by quite a number of people with multiple sclerosis and other neurological disorders that involve demyelinization.
Although anecdotal reports indicate that some people with PDDs have had symptom reductions when taking sphingolin, there could be a hidden problem with this supplement. It could contain particles that cause the deadly neurological disorder spongiform encephalopathy, “mad cow disease.” It is not available in the UK for this very reason–and there’s no reason to believe that this disease exists only in UK cattle or UK humans.
No matter what kind of alternative practitioner or therapy you choose, it’s just as important to be a smart consumer in this area as it is with traditional medicine. Unfortunately, it can be more difficult. Medications with approval from the FDA or similar government bodies undergo rigorous testing. Study results and detailed information about these compounds are available in numerous books, online, or directly from the manufacturers.
With “natural” remedies, that’s not always the case. It seems like every week another paperback book appears making wild claims for a “new” antioxidant compound, herbal medication, or holistic therapy. The online bookstore Amazon.com lists nearly twenty titles about St. John’s wort alone! These books–not to mention magazine articles, Web sites, and semi-informed friends–sometimes wrap conjecture up in a thin veneer of science. They may reference studies that are misinterpreted, that appeared in disreputable journals, or that were so poorly designed or biased that no journal would publish them.
Supplement salespeople, and particularly those who take part in multilevel marketing schemes, seem to have taken lessons from their predecessors in the days of the traveling medicine show. They have little to lose by making outrageous claims for their products and much to gain financially. Here are just a few of the unsupported claims found in a single five-minute sweep of supplement-sales sites on the Internet:
- “Glutathione slows the aging clock, prevents disease and increases life.”
- “Pycogenol … dramatically relieves ADD/ADHD, improves skin smoothness and elasticity, reduces prostate inflammation and other inflammatory conditions, reduces diabetic retinopathy and neuropathy, improves circulation and enhances cell vitality … ” [and, according to this site, cures almost anything else that might ail you!]
- “Sage and bee pollen nourish the brain.”
- “Soybean lecithin has been found to clean out veins and arteries–dissolve the gooey sludge cholesterol–and thus increase circulation, relieve heart, vein and artery problems. It has cured many diabetics–cured brain clots, strokes, paralyzed legs, hands and arms!”
Take the time to browse your local health-food or vitamin store’s shelves, and you’ll probably spot a number of products that are deceptively advertised. Some companies try to deceive you with “sound-alike” names, packaging that mimics other products, or suggestive names that hint at cures. Other colorful bottles of pills contain substances that can’t actually be absorbed by the body in oral form–for example, “DNA” (deoxyribonucleic acid, the building block of human genetic material) graces the shelves of some shops. One site for a manufacturer of this useless “supplement” claims that “it is the key element in the reprogramming and stimulation of lazy cells to avoid, improve, or correct problems in the respiratory, digestive, nervous, or glandular systems.” It also notes that this “DNA” is extracted from fetal cells. Other brands are apparently nothing but capsules of brewer’s yeast.
As the previous section on vitamins and supplements indicates, some other supplements provide end products of internal procedures, such as glutathione, instead of the precursors needed for the body to make a sufficient supply on its own, such as vitamin E. This approach may not work. When in doubt, consult with your doctor or a competent nutritionist.
How can you assess supplement claims? Start by relying primarily on reputable reference books for your basic information, rather than on advertisements or the popular press. Watch out for any product whose salespeople claim it will “cure” anything. Supplements and vitamins may enhance health and promote wellness, but they rarely effect cures. Be wary of universal usefulness claims. The worst offenders in supplement advertising tout their wares as cure-alls for a multitude of unrelated conditions in an effort to make the most sales.
There are a few other sales pitches that should make you wary. If a product’s literature references the myth of the long-lived Hunzas, someone’s trying to pull the wool over your eyes. This tale of hardy Russian mountain folk who supposedly all live to be well over 100 years old was refuted long ago by reputable researchers. If it’s a natural substance but a particular company claims to be the only one to know the secret of its usefulness, that really doesn’t make much sense. Be especially cautious when sales pitches are written in pseudoscientific language that doesn’t hold up under close examination with a dictionary. This is a popular ploy. For example, one product that has occasionally been peddled to parents of children with PDDs claims to “support cellular communication through a dietary supplement of monosaccharides needed for glycoconjugate synthesis.” Translated into plain English, this product is a sugar pill.
Even when you have seen the science behind a vitamin or supplement treatment, there’s still the problem of quality and purity. It’s almost impossible for consumers to know for sure that a tablet or powder contains the substances advertised at the strength and purity promised. Whenever possible, do business with reputable manufacturers that back up their products with potency guarantees or standards. In most European countries, potency is governed by government standards; in the US, it’s a matter of corporate choice.
- Dr. Rosemary Waring, “Biochemical Parameters in Autistic Subgroups,” October 1995 presentation to 4th Consensus Conference on Biological Basis and Clinical Perspectives in Autism, Troina, Sicily, based on ongoing studies at the University of Birmingham (UK) Biochemistry Department.
- Dr. Robert J. Sinaiko, “The Biochemistry of Attentional/Behavioral Problems,” presentation to the 1996 Feingold Association Conference (http://www.feingold.org/sinaiko.shtml).
- R. S. Chamberlain and B. H. Herman, “A Novel Biochemical Model Linking Dysfunction in the Brain, Melatonin, Proopiomelanocortin Peptides, and Serotonin in Autism,” Biological Psychiatry 28 (1990): 773-793.
- M. Fux et al., “Inositol Treatment of Obsessive-Compulsive Disorder,” American Journal of Psychiatry 153 (1996): 1219-1221.
- J. Levine, “Controlled Trials of Inositol in Psychiatry,” European Neuropsychopharmacology 7 (May 1997): 147-155.
- info no 8
Autistic Teenager Finds Voice Through Social Networking
The Autism News | English
By Gabrielle Moore | Global Shift
Carly Fleischmann — a young woman whose autism left her mute — has found her voice through the use of the Internet.
Fleischmann is able to type her thoughts into a computer, and now communicates with thousands of people through her Twitter and Facebook pages. She has found a way to use the social networking phenomenon, along with e-mail, to communicate with people all over the world — many of whom are curious about autism or have a friend or family member with the disorder. Carly says she does what she can to teach others about autism and what it is like for her — a message that she says comes “straight from the horse’s mouth.”
Recently, Carly spoke at an autism event to introduce one of her heroes, Temple Grandin. Similarly to Carly, Grandin was diagnosed with autism at a young age, and was unable to communicate. When she was diagnosed, so little was known about autism and its causes that the doctor told her mother it was the fault of poor parenting. However, Grandin’s family helped her grow and learn through therapy, and eventually she became a well-recognized and respected animal scientist. Carly was able to meet Grandin and introduce her at an event by typing out her speech for the audience.
Carly has made efforts to raise awareness about autism, and has found a way to talk to friends, family and the entire world by reaching out and discovering how to make a positive situation out of her inability to speak. You can learn more about Carly and ask her questions about autism on her website.
INFO NO 9